CQ 2012-4 Dementia

CQ

The CAPA Quarterly

Issue Four 2012

Dealing with

Dementia

Journal of the Counsellors and Psychotherapists Association of NSW, Inc.

Welcome

Editorial When your life is filled with the desire to see the holiness in everyday life, something magical happens: ordinary life becomes extraordinary, and the very process of life begins to nourish the soul.

~ Rabbi Harold Kushner

Dementia is increasingly prevalent in our society, and more of us each year are being confronted with its effects on family and friends, if not on ourselves. The thought of losing mental capacity strikes fear into the heart of the most stoic. Ongoing research is bringing ever greater understanding of this dreaded condition, but with no cure yet known, how to deal with its consequences is a major concern—one that is increasingly brought into the therapeutic context, not only by those who have it but even more so by those who care for them, both as family and friends and as professionals.

This issue of CQ addresses Dealing with Dementia from a variety of perspectives. Special thanks are due to Helen Carswell for her extensive assistance in identifying appropriate contributors. Our first article is most poignant: an interview by CQ with a former counsellor who has dementia, sharing what the experience is like for him.

Cognitive neuroscientist Muireann Irish provides an overview of the varieties of dementia, how they present and how they may easily be overlooked in the early stages as they share symptoms with other conditions.

Nurse and counsellor/psychotherapist Kirstin RobertsonGillam, shares her knowledge, based on extensive experience in both research and practice, in working with people with dementia and their families as well as those who care for them in both home and residential care settings, particularly highlighting her work in music therapy with this patient population.

Kylie Sait and Lyndell Huskins of Alzheimer’s Australia, NSW, both of whom have extensive experience working with people who have been diagnosed with Early Onset Dementia and their carers, give us great insights into the lives of that particular cohort.

Helen Carswell, also of Alzheimer’s Australia, NSW discusses the psychotherapeutic needs of carers of people with dementia—the common issues and adjustments they face and how counselling can help them adjust to the shifts in the relationship with and the gradual loss of the loved one who is slowly slipping away.

Lee-Fay Low and Fleur Harrison of the Dementia Collaborative Research Centre–Assessment and Better Care, University of New South Wales, discuss the challenges faced in Australia by people from different cultural backgrounds and the implications of those cultural norms and expectations for counsellors.

Georgene McNeill of Alzheimer’s Australia, NSW addresses the workplace issues faced by professional carers for people with dementia in residential care facilities and how counsellors November 2012

can assist this cohort in dealing with those challenges in their work environment.

In our new feature, Modality Profile, this quarter’s feature is Somatic Therapy.

This is my final issue as Editor. I have enjoyed my two years with CQ, and am pleased to have raised the standard of both the content and the presentation of the journal. We have received almost exclusively positive feedback from both the membership and other professionals who read CQ. Roberta Parrott, who has served as Deputy Editor for the past year, now becomes Editor, and she has planned excellent issues on Ethics, Dreams, and The Profession, following the annual February Open Forum.

There’s a lot to look forward to in 2013.

I have been advised that by the time this issue is in the hands of subscribers, the new CAPA website, www.capa.asn.au, will be live, providing a much richer and more useful tool for information and interaction. CQ contributor guidelines and advertising rates and specs will be found there; that information can also be obtained from office@capa.asn.au, editor@capa.asn.au or advertising@capa.asn.au, depending on the nature of your enquiry.

As always, this journal is for you, our valued members, and I enthusiastically encourage your active participation in the professional dialogue and sharing that this journal provides. Please have a look at the upcoming themes announced on Page 36 of this issue and have your say on the topics that interest you. Journal articles are, by the nature of page space, limited, and early contact with the Editor improves the chances of your contribution being included. Dialogue is welcome and encouraged. If you’d like to contribute to future issues, please contact editor@capa.asn.au.

Laura Daniel Editor Laura Daniel, BA, JD, is a Sydney-based publishing professional with more than forty years’ experience in the industry, both in Australia and overseas (http://www.editorsnsw.com/esd/ae1445523.htm). In addition to editing, she also designs, writes, mentors, composes, paints, sculpts, photographs, sings, dances, walks, rides horses, does yoga and appears in minor film roles and commercials. Her first novel, The Garden Gate: An Inner Journey, was published in 2012 by Mistymoon Mountain Pty Ltd. www.mistymoonmountain.com

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Contents CAPA NSW Executive and Staff President Jeni Marin president@capa.asn.au Vice-President Gina O’Neill vicepresident@capa.asn.au Secretary Jane Ewins secretary@capa.asn.au Treasurer Mary Jane Beach treasurer@capa.asn.au Ethics Chair Tara Gulliver ethics@capa.asn.au Membership Chair Linda MacKay membership@capa.asn.au Regional and Rural Liaison Chair Sharon Ellam regional@capa.asn.au Professional Recognition Chair recognition@capa.asn.au Barry Borham PD Coordinator Juliana Triml capa.pd@hotmail.com Office Coordinator Paul Dudley office@capa.asn.au Administrative Assistant Freddy Ortega office@capa.asn.au CQ: The CAPA Quarterly Editor Laura Daniel editor@capa.asn.au Deputy Editor Roberta Parrott deputyeditor@capa.asn.au Advertising Coordinator Paulette MacFarland advertising@capa.asn.au

Welcome 1

Editorial ~ Laura Daniel

CAPA News 3 From the President’s Desk ~ Jeni Marin 4 CAPA News 6 Regional and Rural Report ~ Sharon Ellam Modality Profile 7

Somatic Therapy

Conversations 8 Sinking Slowly into the Darkness of Dementia ~ Noel Hackett interviewed by Roberta Parrott Features 10 Diagnosing Dementia: A Brief Overview of the Cognitive Neuroscience ~ Muireann Irish 12 Hearing the Voices of Dementia: A Person-Centred Approach ~ Kirstin Robertson-Gillam 16 Supporting People with Younger Onset Dementia and Their Families ~ Kylie Sait and Lyndell Huskins 18 Counselling the Carer ~ Helen Carswell 22 Persons with Dementia from Other Cultural Backgrounds and Their Carers: Implications for Counsellors ~ Lee-Fay Low and Fleur Harrison 24 Working With Dementia: The Counselling Needs of Professional Carers ~ Georgene McNeil In the Therapy Room 26 You–Me Stuff ~ Jewel Jones Professional Development 28 Communicative Musicality: Gestural Narratives in the Therapeutic Relationship ~ Review by Juliana Triml 29 Professional Development Events Noticeboard 36 Calls for Contributions & Ad Rates Inside Back Cover Classifieds Back Cover Conference Calendar

CQ: The CAPA Quarterly respectfully acknowledges the Cadigal people of the Eora Nation, the traditional owners and custodians of the land on which the CAPA NSW office is located; and the traditional owners of all the lands through which this journal may pass.

Cover art by Jim Frazier Design by Sarah Marsden Printed by Unik Printing ISSN 1835-937X

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© CAPA NSW 2011. Copyright is held with CAPA NSW and individual authors. Please direct permission requests to the editor. Opinions expressed in CQ: The CAPA Quarterly do not necessarily represent those of the Editor or of CAPA NSW. While all reasonable care has been taken in the preparation of this publication, no liability is assumed for any errors or omissions. Liability howsoever as a result of use or reliance upon advice, representation, statement or opinion expressed in CQ: The CAPA Quarterly is expressly disclaimed by CAPA NSW and all persons involved in the preparation of this publication. The appearance of an advertisement in CQ: The CAPA Quarterly does not imply endorsement of the service or approval of professional development hours from the service. Advertisers are advised that all advertising is their responsibility under the Trade Practices Act.

CQ: The CAPA Quarterly

CAPA News

From the President’s Desk A Happy Holiday Season and a prosperous and fulfilling 2013 to all CAPA Members from your CAPA Executive!

As you know, on Saturday 11 August at the Crows Nest Community Centre, CAPA NSW held the 2012 Annual General Meeting, which resulted in four really positive outcomes. The first was an intriguing and thought-provoking professional development event delivered by Dr Stephen Malloch who explored the therapeutic benefits of tone and pitch. We were shown fascinating research and had a practical opportunity to experience the balance of voice and gesturing. The second positive outcome was the opportunity to network with new and longstanding members of our association over lunch and in the PD practice triads. The third positive outcome was that the executive for 2012/2013 is now at full strength.

Your Executive for 2012/2013 is: Jeni Marin, returning as President Gina O’Neill, moving from the role of Secretary to that of Vice President Mary Jane Beach, retaining the challenging role of Treasurer

Jane Ewins, taking on the Secretary’s role, nominated from the floor at the AGM, to the delight of the returning Executive members Tara Gulliver, concentrating now on just one of her former roles, that of Ethics Chair Barry Borham, staying on in the important Professional Recognition Chair Sharon Ellam, handling again the Rural & Regional portfolio, and Linda MacKay, becoming Membership Chair, the newest member of the Executive.

Following the AGM was the first Executive meeting for the new term, and following the meeting was the fourth super outcome of the day—a dinner to say a huge THANK YOU to Laura Daniel, who is stepping aside as Editor of CQ after two years of gifting CAPA her professional expertise, and to say a giant WELCOME to Roberta Parrott, who has been working closely with Laura as Deputy Editor for the past year and will become Editor from the first issue of 2013. It was a pleasure to gain a sneak peek at what is planned for the future and to have an opportunity to really get to know these amazing women.

By the time you are reading this issue of CQ, our new website should be operational, or very close to it, which will make next year’s membership renewals much simpler.

Keep an eye out for a Survey Monkey (which the Executive will be putting out before Christmas) to get members’ preferences for the next CAPA Conference. The Executive would love you to start thinking about what you would really like, so please put on your creative and innovative thinking caps in advance.

November 2012

Our next Professional Development event is on the evening of 14 November (Wednesday not Saturday), again at the Crows Nest Community Centre. While this venue is suitable for the short term, the Executive are planning to launch a survey to get the membership’s responses to other venue options for 2013.

Harking back to the CAPA Conference in June, I have been reflecting on speaker Dr Anthony Dillon’s thoughts on forgiveness and healing, which he related to The Apology.

Some survivors of trauma seem to be able to move on and live positive fulfilling lives; others seem to be stuck in anger and resentment, and I wonder whether the strength to forgive may, indeed, be part of the reason for the difference in outcomes.

As counsellors and psychotherapists, we will at some point (and possibly have already) come into contact with clients who have experienced trauma. As we all know, trauma can be caused by a wide variety of events, but there are a few common aspects. There is frequently a violation of the person’s beliefs about the world—a violation of intrinsically accepted rights.

A traumatised client is often living in a constant state of extreme confusion and insecurity. He or she may be struggling with upsetting emotions, frightening memories, or a sense of constant danger that just can’t be got past. Survivors must cope with the loss, at least temporarily, of their sense of safety and security. The natural reaction to this loss is grief. Like people who have lost a loved one, trauma survivors go through a grieving process.

Emotional and psychological trauma shatter lives and leave clients feeling helpless and vulnerable in a world fraught with danger. When trauma leads to post traumatic stress, damage may involve physical changes in the brain and to brain chemistry, damaging the person’s ability to cope adequately with stress. It is heartening to see breakthroughs in treatment and support that can speed recovery from emotional and psychological trauma. Regardless of whether the traumatic event happened years ago or yesterday, we have all heard of, or even been privileged to witness, people able to heal and move on. Our conference speakers Drs Anthony Dillon and Nooria Mehraby, as well as current material on neuroscience, have been extremely helpful in our understanding trauma. The Fannin and Williams article in the last (August 2012) issue of CQ has also been enlightening, as many of you have commented both in writing and in person.

Wishing you the best for these last months of 2012 and a positive 2013 for yourselves and your clients.

Jeni Jeni Marin President president@capa.asn.au 3

CAPA News

New CAPA Executive 2012-2013 Welcome to the newly elected members of the CAPA Executive committee for the new administrative year.

President – Jeni Marin president@capa.asn.au Jeni started her counselling practice, The Complete Individual, in 1993, initially working mostly with individuals but gradually becoming more involved in working with families in crisis using primarily Narrative and Solution-Focussed Therapies. Over the years, she has also undertaken a range of contracts in the design and delivery of adult education and finds that now her days are filled with both counselling and delivery of training in Child, Youth and Family Intervention, Counselling and Community Services Management.

Jeni’s formal qualifications include Undergraduate and Masters Degrees in Social Science and Counselling, and accreditation in Adult Education. A strong believer in ongoing education, she has also completed a number of Diplomas in Community Service, Mental Health and Counselling disciplines. She has been a member of CAPA NSW since its inception and, since ethics and social justice are two areas in which Jeni is passionately interested, she served two years as Chair of the CAPA Ethics Committee prior to accepting the role of President.

Vice-President – Gina O’Neill vicepresident@capa.asn.au Gina is completing her Masters in Gestalt Psychotherapy this year. She is working in a private psychiatric setting in Sydney’s Northern Beaches, treating clients with various addictions and mood disorders at South Pacific Private. She is known for her work with childhood trauma and its link with adult mental health issues.

Membership Total as at 1 October 2012

Clinical Member Intern Member Provisional Member Student Member Affiliate Member Special Leave Life Honorary Member Total Financial Members 4

392 100 55 45 28 2 3 625

As Gina’s background is multicultural, her interest and increasing area of speciality is cross-cultural therapy. Having foundations in working with families of individuals with addictions and mood disordered issues, she is able to work with a larger field perspective and enjoys communicating openly with other clinicians from a multi-disciplinary approach both in her private practice and hospital settings.

Secretary – Jane Ewins secretary@capa.asn.au Jane runs a private practice in Berry, NSW, offering counselling, personal and business coaching, and supervision for counsellors and allied health care professionals. She has held senior management and consulting roles in marketing and communications and developed or run many programs, workshops and strategic visioning days for community organisations. The common thread through her career is working with and for people to achieve their goals.

Treasurer – Mary Jane Beach treasurer@capa.asn.au Mary Jane has had a very varied career, beginning with nursing, and midwifery in the UK. She returned to Australia and worked as a midwife for ten years, then studied child and maternal health. She worked at Red Bank House for another ten years, while studying counselling, followed by two years training in Solution-Focussed Family Therapy. She currently works in private practice in Winston Hills seeing families, couples, and individuals. Mary Jane also works a couple of days a week at the St John of God drug and alcohol program— running groups and, again, seeing individuals, couples, and families. She has also been involved with foster care for the last 20 years.

Letter to the Editor [With regard to Noel Hackett’s article in this issue:] You have done an amazing job of pulling together themes while remaining faithful to much of what Noel actually said—his own words. Noel was pleased with it.

I felt quite emotional reading it out while he followed a printed copy.

I guess I had been busy leading the process and drawing him out, trying to keep him focused, explaining what the questions meant and repeating the questions again and again, when we were actually doing the interview originally. I found it very powerful. ...

Many thanks for taking the risk of involving an Alzheimer’s sufferer.

I hope Noel’s experience and reflections can assist in raising people’s awareness of what AD is like.

Best wishes, Jenny Fitzpatrick

CQ: The CAPA Quarterly

Ethics Chair – Tara Gulliver ethics@capa.asn.au Tara has been a volunteer with Life Line for twenty-four years. She started as a telephone counsellor then continued her training at the Institute of Counselling with a Graduate Diploma of Counselling, furthering her studies at Unifam with a Diploma of Individual, Couple and Family Therapy. Still with Life Line, Tara moved into personal, family and relationship counselling.

She has also completed extensive Personal Development inservices with Life Line. Trained as a Suicide Awareness and Prevention educator with Living Works for two years, Tara was coordinator of the suicide support scheme for the northern beaches in Sydney. For the last five years, in conjunction with the Department of Probation and Parole and local community services, Tara has facilitated men’s anger management groups.

Membership Chair – Linda MacKay membership@capa.asn.au Linda has a well established reputation in the counselling and family therapy fields in Australia. She is a faculty member of The Family Systems Institute in Sydney, teaching health professionals about working with clients from a Bowen family systems theory perspective.

Linda also is a neurofeedback trainer working with private individuals and with business executives who wish to optimise their performance as leaders. She is currently a lecturer in the post-graduate psychology program at the Australian Catholic University and is the clinical supervisor of CAMHS, and other Health and NGO teams across NSW and the StandBy Post-Suicide Response Service for Northern Tasmania.

Regional & Rural Liaison Chair – Sharon Ellam regional@capa.asn.au Sharon is based on the western shores of Lake Macquarie. Working in private practice with individuals, couples and families, she is known in the Newcastle/Central Coast area as having a particular interest in Childhood Anxiety. With an eclectic approach but a strong emphasis on building resilient family systems, she works with children and their parents as a single entity. With very young children, she aims to effect change through re-focussing parental behaviours, and teaching them a child-specific ‘language’ to begin the process of teaching their child to selfcalm and seek help. She compliments her practice by teaching piano. As well as paying the bills, combining counselling with piano teaching is a strategic decision in managing her self care, which is another priority in her life.

Professional Recognition Chair – Barry Borham recognition@capa.asn.au Following twenty-five years in the public sector in a number of management and policy roles, Barry shifted to the corporate world in 1998.

He now shares his time between his corporate role and his private practice (Shire Psychology and Counselling) at Sutherland. He enjoys working with couples and individuals and especially likes working with emotions in men.

In his interactions with practitioners and educators within the profession, he is often deeply impressed by the professionalism, knowledge, skill and wisdom that he has encountered. He perceives that this wealth of talent and skill is not adequately recognised by politicians, the public sector and funding bodies.

It is for this reason that he decided to use some of his experience and take on the role of Chair of the Professional Recognition Committee to work toward gaining appropriate levels of recognition for our profession.

Subscribe today

Even if you’re not a member of CAPA, you can still subscribe to CQ and receive: peer reviewed papers on therapeutic approaches articles on therapist and client issues interviews with practitioners therapeutic techniques professional development updates practice management tips book reviews conference listings and much more

November 2012

All for $12.50 per issue or $40.00 for an annual subscription (including GST).

Just contact CAPA NSW on (02) 9235 1500 or office@capa.asn.au Organisational subscriptions are also available.

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Regional and Rural Report

Tapping a Rich Resource Following the AGM, there have been a few offers of assistance to the Committee which are being followed up. Thank you to those who took the time to respond to the R nR AGM Report.

The current Committee of myself, Claudia Pit-Mairbock and Shawn Stevenson is working towards continuing the ongoing job of reaching regional members. In 2013, a weekend PDE will be held at Nowra, as we had to postpone the one that had been planned earlier this year. At the time of writing this report (August), our energies are focussed on finalising the Bathurst PDE . Then our job will be planning for 2013. We invite CAPA members to contact us if they can assist in any way, whether on the Committee, at a regional venue, or presenting a workshop at a regional PDE .

One ongoing issue that comes up for regional members is the difficulty in accessing Supervision. One of our aims is to compile a map of regional services and agencies that may assist our members. It has become apparent that many regional members do not know where other members are situated and are not part of a local network. We invite regional members

to contact us individually on regional@capa.asn.au to let us know whether you can provide Supervision or other services to members, even if it’s just the support of being a contact.

We all know the value of a support network for our clients.

It’s important that we consider this for ourselves also. It is taking the Committee time to create a lot of the groundwork of connecting. Part of that is because there are few hands on deck. If you are a member of a local group or support network, please consider letting us know about it so that we can share it. For the RnR Committee our focus is on accessing the richness of our membership and facilitating the weaving of it into a beautiful tapestry.

Take care,

Sharon Sharon Ellam, Chair Regional and Rural Committee

Erratum: The promotion in our August issue for the Bathurst PDE erroneously listed Dialectical Behavioural Therapy with Bipolar Disorder Clients as a topic. That topic was Dialectical Behavioural Therapy with Borderline Personality Disordered Clients. The CAPA Regional and Rural Committee extends apologies for the error.

Code of Conduct for Unregistered Health Practitioners As counsellors and psychotherapists, we are legally required to display two documents in our practice(s): • t he NSW Code of Conduct for Unregistered Health Practitioners • i nformation on how clients can make formal complaints to the Health Care Complaints Commission.

Both are available online in the members area of the CAPA NSW website: www.capa.asn.au The Code of Conduct is also available in several community languages on the Health Care Complaints Commission website: www.hccc.nsw.gov.au These legal requirements are set out in ‘Public Health (General) Amendment Regulation 2008’ under the NSW Public Health Act (1991), and came into effect on 01/08/2008.

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Ethics Checkout the CAPA NSW website for information on: • Ethics and Counselling • Problem Solving Steps • Client Confidentiality and Privacy and Relevant NSW and Commonwealth Legislation • Duty of Care • Workplace Bullying and Violence • Mandatory Reporting • Keeping Track of Paperwork • Information for Counsellors who have been served with Subpoenas • Complaints Form for Submission of Complaints and Grievances by a CAPA Member Just login to the members area of www.capa.asn.au and click on the “Ethics” button on the left.

CQ: The CAPA Quarterly

Modality Profile

Somatic Psychotherapy The general principles of psychotherapy provide a safe, non-judgmental space and relationship in which to explore problems of living—through empathy, acceptance and mindfulness. Difficult life situations—in work, relationships, parenting, achieving one’s goal, or in repetitive, painful states such as depression, anxiety, confusion, negative feelings or low self esteem—are developed within a safe, therapeutic relationship. Psychotherapy can provide conditions in which people can grow and develop in ways they may not have thought possible earlier in their lives.

Soma is a Greek word meaning ‘the living body’. Somatic psychotherapy is grounded in the belief that psyche and soma form a single holistic entity, the bodymind. Thought, emotion and bodily experience are understood as interfunctioning aspects of a person’s whole being. Each person’s individual history, cultural/biological context and subjective somatic reality are all inextricably linked. Body-oriented work recognises that central to each person’s sense of Self are fundamental somatic action and sensing/feeling patterns developed from early childhood as well as throughout the life cycle.

Contemporary Somatic Psychotherapy engages both therapist and client in a process of change that places focus on this conjunction of biology (body) and culture, where the concept of individual ‘pathology’ is replaced by the concept of ‘appropriate adaptation’ to cultural contexts. Thus the somatic psychotherapy process is one of experiencing and critically reflecting upon these patterns within the context of new experiences that emerge within the therapeutic situation. These changes are not only cognitive changes but also deep, somatically experienced and somatically anchored transformations. In other words, the somatic experience of the person and the orientation to their social context (environment) is profoundly reorganised.

Somatic (i.e. body-oriented) psychotherapy has evolved since its origins in the body-based work of Wilhelm Reich in the 1920s–1940s. Reich’s energy and character models of somatic psychotherapy have been extended by therapists such as Lowen, Pierrakos and Keleman in the USA , and have been substantially modified by the outstandingly creative work of Boyesen and Boadella in the UK and on the continent.

As well as working with processes of emotion, sensation, desire, breath and a range of other bodily experiences, somatic psychotherapy incorporates understandings of the complexities of human subjective experience and consciousness. It is drawn from the philosophies, theories and practices of existential phenomenology, self psychology, intersubjectivity, dynamic systems theory, infant research, November 2012

trauma theory, and post-modern and post-structural thinking. These concepts fundamentally shape and inform the theoretical basis of contemporary somatic psychotherapy.

This paradigm shift for somatic psychotherapy has occurred at the same time as all major theories of psychotherapy in the West have been experiencing significant theoretical and methodological revision and restructuring.

Since its beginnings, psychotherapy in the West has developed from a dualist philosophy, commonly known as the mind-body split, privileging the mind over the body.

The body is viewed as the basic instinct to be controlled by the mind. Passion, deep emotion, desire, deep intimacy with life and with another as a spiritual experience, the transformative power of love and sexuality, the physical expression of the body—all these have been either largely ignored, minimised or pathologised by much psychotherapy theory.

Wilhelm Reich, the psychoanalyst who pioneered the inclusion of the body in psychotherapy, paved the way for the development of a range of different psychotherapies that now do include the body in both their theory and their practice. Today, thousands of body-inclusive psychotherapists are working in Europe, the USA and Australia, and body psychotherapy is now an officially recognised psychotherapeutic modality. It is a professional field of growing interest in the West. In Australia, somatic psychotherapists are currently working in most states, governed by their own professional association and by a professional code of ethics.

The body is located at the centre of the Self-transformative process, whether we are aware of it or not; emotions, behaviour, sensation, impulse, action patterns, meaning and language all originate in body experience. Experience of one’s own body is central to deep change in Self-structure.

Consciousness arises from embodied experience.

By directly experiencing the cultural inscriptions on and in the body, and by reconstructing our needs and wants from within our felt bodily experience, we begin to create new meanings of what it is to be an embodied human being.

From here we begin to redefine our relationship to our environment, in which we have been so deeply embedded.

Somatic psychotherapists engage directly with the client’s dynamic bodily experience, paying attention to the different levels of human experience as these emerge in the therapeutic relationship: verbal, emotional, physical, social and spiritual. The somatic therapists’ wholistic and respectful approach to a person’s bodymind supports the process of self-realisation.

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Conversations

Sinking Slowly into the

Darkness

Noel Hackett, former counsellor and Catholic priest, was diagnosed on 23 January 2009, at the age of 59, with Alzheimer’s Disease–Younger Onset Dementia, only three years after his mother had died of the same disease. He left work in February 2009, and he and his wife of 19 years, Jenny Fitzpatrick, then attended the ‘Living with Memory Loss’ program at Alzheimer’s Australia (February–March 2009). They have continued to attend monthly support meetings since. Jenny retired in April 2012 from her career as an educator, mainly in primary schools, to become Noel’s full-time carer.

As a counsellor, Noel had been principally involved with the long-term unemployed and those whose mental and physical illnesses made them unable to work; so, though their stresses were different from his, he was more prepared with coping strategies than most people are when confronted by such a health challenge, having taught coping strategies to clients who had lived rough on the streets, damaged their brains through inappropriate drug uses, and consequently lost the ability to cope with day-to-day life. He had also been involved with the care of his mother during her decline with dementia.

Noel graciously agreed to provide our readers with an insider’s perspective on what it is like to have dementia, in the form of an interview by CQ ’s Deputy Editor, Roberta Parrott, who posed written questions that were then asked, intermittently,

by Noel’s wife, Jenny, from time to time as Noel was able to answer. This interview, as presented, has been edited and compiled from the information thus gathered by Jenny. Her generous and essential assistance with this interview is deeply appreciated and gratefully acknowledged.

CQ: What has losing your ability to work meant to you?

NH: The most destructive thing is poor self assessment. I just don’t have purposefulness. I feel worthless. My work created my world for a significant period each week and defined who I was. One’s profession is a statement of status in society, and now I don’t have that. My social status is gone, and I feel that with the loss of that status in the community, people began to treat me differently.

The loss of income has also had a significant effect on the household, as I can no longer contribute financially. People can be financially disadvantaged because they have to give up work and sometimes so do their partners. Financial loss is a significant thing, especially now that my wife, Jenny, has also finished work.

I no longer have any sense of our form of trade—money. I can no longer be part of the management of finances and general household affairs. Money is a social goal, a way of caring for family, and I am now locked out of that world.

It cuts the person out of many aspects of life, like dialogue.

I sit on the edge of conversations, finding it very difficult to join in and keep up. I pretend I’m there, but I can’t converse.

I don’t ‘get’ humour anymore.

I find it difficult to follow basic procedures like packing a bag—such as the items needed for a cycling outing—even when they are all already set out for me. I feel like a child or a person who is not able to manage. I feel embarrassed and even humiliated at times. My response is to withdraw. Sometimes I cover [my ineptitude] and ask people to assist when needed, like helping to collect keys, hat, sunscreen and food before I go out.

This keeps me from getting stressed or anxious.

At first I could travel into the city on my own, but that has now gone as well. Trains and buses can be risky, despite my best efforts. I have, for instance, got off at the wrong station then not known what to do. When I go out alone, I can’t guarantee that I can find my way back to where I started, so I can’t be independent. Before, I was an independent person, capable of being at home and of being separated from others. I can’t manage being alone for very long now. I become anxious and fearful. I can’t predict what might be happening next or if we might be going out. I don’t understand time and find it difficult even to read time now. And I have lost the art of reading. When I first left work, I had a vision that I would be home reading good books, but now I can’t even hold information in mind long enough to make sense of a newspaper.

Nothing comes easily anymore. I experience a lot of frustration. By the end of the day, I am usually very tired and find it hard to function.

CQ: How does the disease impact you in daily life?

NH: Alzheimer’s Disease. It is a sickness—a very severe sickness. Loss of memory feels like a disintegration of the self.

CQ: What sorts of activities can you still enjoy?

NH: Spending time in quiet periods such as meditation, or watching the sunset, listening to music, being in nature—

CQ: How did you first notice something was wrong?

NH: The introduction at my workplace of more highly technical computer requirements alerted me that something was wrong.

The others could do things I couldn’t do. I was unable to keep up and expectations were growing all the time (April 2007), adding stress that I couldn’t manage. I couldn’t keep up and felt a strong sense of failure. I could still provide one-on-one counselling services and be supportive of clients who came to me on a regular basis; it was the record-keeping and accountability I struggled with. Work has gone (February 2009).

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CQ: The CAPA Quarterly

of Dementia

especially by the ocean or the bush. I like going to films that have depth and quality. I can no longer enjoy foreign films where I need to read subtitles; I can’t manage that now. I love cycling. The Cooks River Cycleway is close to where we live. I enjoy walking, especially bushwalking. We occasionally go to the Blue Mountains to be challenged by some of the tough climbs in and out of the valleys. In the warmer months, I love snorkelling and of course surfing. I like sitting and watching the waves from one of the grassy patches at Clovelly or Bronte.

People with Alzheimer’s can be left out of group activities such as exercise classes and yoga because they can’t follow the instructions. I enjoy going to Men’s Shed every Friday. I go cycling every week with a carer for four hours. I really enjoy this and feel energised by it. I have recently started with another carer on a fortnightly basis, and we are going to explore some drawing and painting together, despite my limited skills at this time. I have been experimenting with some drawing by myself, so this is a great opportunity for me.

I have a strong dependence on Jenny to guide me in a wide range of experiences that I could not manage without anxiety. I experience happiness with Jenny and people who are part of our close-knit support circle. Two of Jenny’s sisters provide regular outings, which include walking the Bay Run, Harbour walks, movies, visits to the Art Gallery, light lunches—even a visit to the Australian Open at The Lakes. I enjoy just quiet time with Jenny, or walking with her to one of our many local coffee shops. Jenny and I are always doing interesting things together.

CQ: Do you have much social interaction?

NH: That’s a double-edge sword. I like being with family and friends, but I find it difficult because sometimes I am sitting at the table but feel left out. I rarely get to say what I want to say. By the time I assemble the thought in my head, the conversation has moved on, and I can’t keep up. There are also issues like who pays the bills. I don’t like others paying my bills just because I can’t handle money. If I went out with a relative or mate, they would tend to presume I could not manage finances and would take it upon themselves to make payments great or small.

CQ: Do you attend any counselling?

NH: I don’t go to a psychotherapist, but I do talk with a spiritual advisor and companion regularly, and he supports me, encourages me and helps me to manage and get through times when I am on the edge of depression. I also speak often with my doctor, my GP, who is a friend and mentor. He gives an honest appraisal of my progress or decline. I have a certain reliance on guidance from my spiritual director, but I now find that I struggle to be at peace and be calm enough to sit quietly and experience the presence of my inner being.

Noel Hackett interviewed by Roberta Parrott

I am in a group of people who also have memory issues. We meet monthly and I have experienced that, in general, people within the group attempt to avoid discussing the consequences of dementia. They know why they are in the group but are not usually willing to name their disease. I have always been, strangely enough, a bit of a loner, and I often withdraw from social interaction, but I have to force myself to come out of my shell and give what I can to those who are fellow sufferers, and even support staff, in various simple ways.

CQ: What most disturbs you about your current circumstances?

NH: Dependency. I am dependent on other people most of the time. Other people make choices about my life. I am not now capable of making decisions about significant matters. My capacity for holding information is extremely limited, so I must allow other people to make a lot of choices for me. Despite the fact that I cannot be the main person in the household to manage the finances, I expect my opinion to be considered in all the decisions. I worry about the load Jenny has to carry. She has a lot of responsibilities, just ordinary, everyday things, but she has to do them all.

I neither have nor need access to finances. Jenny gives me limited money when we go out shopping to ensure large sums are not lost, and I always consult her about purchases. I depend on her to organise every aspect of my living: transport, clothing, outings, respite services, social contact, diary details—where I need to be and when. I have lost the ability to understand and keep appointments. I rely very strongly on Jenny, closer friends and relatives. For example, they provide me with access to activities and things like going to church and following the Mass. I need provision of resources to be safe within and outside the house.

Being alone has been a very important thing. There are organisations that provide a type of support if, for example, partners are at work, but they don’t necessarily meet my needs. I think aloneness is the most significant thing in my present circumstances. Some people could become victims of circumstances, being at home alone. People at home alone can be very vulnerable, like being unable to adequately use the phone, listen to music, or connect the extension cord to the iron and turn it on. I find electrical appliances difficult to work now. I was very distressed when I couldn’t work out how to put the vacuum cleaner together. At times, carers need to leave the house, making the situation risky— for example, using the vacuum cleaner or other electrical appliances with electric leads across the floor. I have felt very confined, restricted at times, by frustrations in the home, such as my inability to work the DVD player. I need someone to work out a system, a simple way, to give me access to the music I love. Not to be able to entertain oneself is a great loss. Depression is significant. I have lost self-worth. (continued on Page 30)

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Diagnosing Dementia:

A Brief Overview of the

With advances in nutrition and medicine, longer life expectancies are accompanied by an increase in the prevalence of dementia. Contrary to common perceptions, dementia does not represent one unitary entity but, rather, is an umbrella term used to refer to a number of distinct clinical phenotypes, each of which is associated with well defined patterns of brain degeneration. Misdiagnosis of dementia syndromes is common, and requires a multidisciplinary approach in which the specific cognitive, behavioural and neural changes must be considered.

This article provides an overview of the most common form of dementia, Alzheimer’s Disease, and of some early-onset dementias that occur in individuals under the age of 65. It is hoped this article will illuminate the therapeutic context by highlighting how the breakdown of functional systems in the brain manifests on a cognitive and behavioural level.

Alzheimer’s Disease A formal diagnosis of Alzheimer’s Disease (AD) often occurs following many years of subtle cognitive changes that are overlooked or misattributed to ‘getting older’. A major precipitating event, such as an individual becoming lost or disorientated in familiar surroundings, may act as the catalyst for family members to seek medical attention. Brain regions specialised for learning and memory are those first affected, with the accumulation of amyloid plaques and tangles beginning in the entorhinal cortex of the medial temporal lobes, spreading across the hippocampus, and progressing to the neocortex (Sperling et al. 2010). In the early stages of AD, the individual may present as forgetful, failing to encode and store new memories and seeming confused when presented with new information. Tasks previously undertaken with ease—such as using household appliances, or performing financial transactions—become increasingly problematic. A common misperception is that the individual is unaware of his current problems, but in fact the affected person’s insight into his own deficits is often intact, leading to mood disturbances such as depression or aggression.

As the disease progresses, widespread disruption of functionally connected neural networks results in impairments in attention, language, and orientation. The memory disturbance, previously confined to more recent times, now begins to erode into the distant past, with the individual appearing to be marooned in the time period from which she can best remember, leading to changes in the individual’s sense of self and identity. Family members may become frustrated with the repetitive or inaccurate nature of conversations, possibly attempting to confront the individual with information that challenges her current beliefs, such as reminding the patient that her spouse is no longer alive, or that she no longer lives in

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her former home. As the individual is unable to look forward in time to anticipate upcoming events, and may not remember past visits from family members, feelings of isolation and depression are common.

Early Onset Dementias Although dementia is typically associated with advancing age, early onset dementias strike middle-aged individuals—most often between the ages of 45 and 65 years—who are otherwise physically healthy, often still in the workforce or rearing young children. Frontotemporal dementia (FTD) accounts for 12–20% of all dementia and is the second most common degenerative disease in younger adults, after AD (Hodges et al. 2009). Unlike AD, however, both the clinical profile and underlying pathology are heterogeneous in FTD, leading to misdiagnosis. Three FTD subtypes are currently recognised.

Behavioural Variant Frontotemporal Dementia Insidious changes in behaviour, personality, emotion processing, and interpersonal conduct are the hallmark features of the behavioural variant of frontotemporal dementia (bvFTD,).

These alterations in social conduct and personality signify progressive disintegration of the neural circuits responsible for emotion regulation, motivation, decision-making, and social functioning (Piguet et al. 2011). A widespread, distributed neural network is disrupted in bvFTD, with atrophy emerging first in regions of the frontal lobes including the anterior cingulate and frontoinsular cortices, and gradually spreading to adjacent frontal and temporal regions.

BvFTD, targets the social brain, manifesting in a cluster of symptoms comprising seemingly self-centred behaviour, wherein individuals act impulsively with little thought for the consequences of their actions. An individual may make tactless, inappropriate personal remarks and social faux pas, coupled with a distinct lack of empathy and regard for others. Further, these individuals exhibit a tendency to approach strangers and talk to them as though they were old acquaintances, particularly enjoying talking to children, which may lead to misinterpretation of the person’s intent.

Apathy is very common, giving rise to inertia, loss of interest for previously enjoyed hobbies, and leading to progressive social isolation (Piguet et al. 2011). Disinhibition is often comorbid with apathy, and results in overspending, gambling, and even unlawful behaviours such as shoplifting, stealing, physical aggression, and illegal driving acts. Abnormal eating behaviour has been documented whereby individuals become gluttonous, with deterioration of table manners, dysregulation of food intake, and changes in food preferences, including a proclivity for sweet food or insistence on eating particular

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Cognitive Neuroscience favourites (Kipps et al. 2007). The profound alteration of social functioning in bvFTD represents an immense source of stress for caregivers, friends, and family members, particularly where young children are present, and is compounded by the individual’s lack of insight and failure to recognise or respond to emotion being expressed by family members.

Semantic Dementia Semantic dementia (SD), a language variant of FTD, is dominated by the progressive decline in naming of objects and comprehension of words in the context of relatively preserved phonology and syntax. These characteristic impairments are attributable to the degeneration of neural regions specialised for the storage and retrieval of general conceptual knowledge, known as semantic knowledge. SD pathology typically begins in the temporal lobes, including the anterior fusiform gyrus, the temporal pole, amygdala, and the hippocampus, and is generally lateralised to the left hemisphere. Individuals with SD almost invariably complain of a loss of memory for words, manifesting in marked anomia, in which the names of objects, people, and other proper nouns are profoundly impaired. The rate and quantity of speech, however, are relatively unaffected, as individuals with SD typically use circumlocution to replace the lost word with more general terms. While individuals with SD may complain of memory loss, in fact, these deficits are not indicative of a true amnesia, as their ability to remember dayto-day events, spatial routes, and instructions is relatively intact.

Behavioural disturbances are commonly observed in SD, although these alterations are more pronounced in those cases of largely right-sided pathology. Impaired social functioning may result from a combination of emotional withdrawal, disinhibition, apathy, irritability, and depression (Kipps et al.

2007). Compulsive and rigid behaviours such as clockwatching and an intense interest in jigsaws are commonly observed. The individual may also display considerable mental inflexibility which can provoke marked behavioural reactions in response to changes in the immediate environment.

Progressive Non-Fluent Aphasia A second language-variant of FTD, known as Progressive NonFluent Aphasia (PNFA), results in communication difficulties in which the fluency of speech output is compromised.

Reduced conversational ability and a tendency to speak in shorter sentences is typically observed. Neuroanatomically, PNFA is associated with degeneration of the left inferior frontal lobe, insula and premotor cortex, gradually spreading to adjacent frontal, temporal and parietal regions with disease progression. Individuals with PNFA tend to produce slow, laboured speech with grammatical errors, and display a particular feature known as speech apraxia, which disrupts

Muireann Irish

the motor planning and sequencing of movements necessary for correct articulation. As a result, the individual may stutter over the initial consonants of a word, display hesitation midword, and show a breakdown of the normal rhythms and stresses of speech. As spontaneous speech becomes more hesitant, individuals experience difficulties in initiating conversations, with frequent pauses leaving the individual feeling reluctant to engage in conversations and displaying a preference to listen rather than to speak. Using the telephone and communicating with groups of people become particularly challenging. With disease progression, repetition of multisyllabic words becomes increasingly impaired, with the person becoming monosyllabic or even completely mute.

The cognitive deficits in PNFA appear relatively circumscribed as individuals tend not to display impairments in domains outside that of speech production. Eventually, however, an Alzheimer-like picture potentially emerges as more global neural degeneration occurs (Hodges et al. 2009).

Huntington’s Disease Huntington’s disease (HD) represents an inherited brain disorder, typically occurring between the ages of 30 and 50, which is caused by a mutation in the Huntingtin gene, located on chromosome 4. Unlike the other dementia syndromes described previously, predictive genetic testing permits the identification of those individuals who carry the genetic abnormality prior to the emergence of any clinical symptoms.

The presence of physical symptoms such as jerky, uncontrollable movements, known as chorea, are generally the ones first observed. These predominantly affect the facial muscles and distal extremities in the initial stages of the disease (Ha & Fung 2012). As the disease progresses, motor disturbances become more pronounced, resulting in recurrent falls, poor balance, dystonia, and deficits in postural control. In concert with motor disturbances, individuals with HD commonly display psychiatric symptoms such as depression, anxiety, aggression, irritability, all of which are associated with increased suicidal ideation. Such psychiatric symptoms further increase the risk of institutionalisation and impact dramatically the quality of life of the individual.

Korsakoff’s Syndrome One final area, often overlooked, is that of alcohol-related dementia, the most common of which is the Korsakoff Syndrome (KS), traceable to thiamine depletion following chronic alcohol abuse. It remains unclear whether a genetic factor may predispose a minority of heavy drinkers to develop this syndrome rather than other complications of alcohol abuse such as gastro-intestinal complaints (Kopelman et al. 2009).

KS is characterised by neuronal loss, micro-haemorrhages and (continued on Page 31)

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Hearing the Voices of Dementia: The gradual decline of cognitive abilities that typify the dementing process appear to diminish one’s sense of personhood. It seems that those we love gradually fade away over time, leaving behind a shell of the person we once knew and loved. Many relatives who have come to me for counselling have cried, saying, “I’ve lost my Mum” or “Dad doesn’t know me anymore”. Their loved ones develop strange behaviours: for instance, becoming paranoid about losing their handbag or having it stolen or wanting to go home when they are already home or wandering off looking for their car when they haven’t driven in years. Do they really disappear? Or do they go into another time zone, another space where life is different than it was previously? After a decade of research into dementia and depression in older people, I have come to believe that our loved ones are still there and that we must find them by developing a new perspective.

The Three Ds: Delirium, Depression and Dementia These conditions can overlap as their symptoms are relatively similar. Elderly people with depression can be mistakenly diagnosed with dementia. It is well known that depression and dementia are co-morbid, although the question remains whether depression causes dementia or vice versa (Burrows 2004). Furthermore, elderly people who develop physical diseases such as bladder or chest infections are known to exhibit symptoms of delirium which can be mistaken for dementia.

Conversely, delirium can manifest because of physical illness in an elderly person with dementia, seriously complicating the condition. Finally, people with dementia can have delirium, dementia and depression according to their state of health. This means that careful observation and person-centred care are important factors in diagnosing their condition and providing appropriate treatment so that quality of life, emotional support and compassion are maintained.

How People with Dementia and Their Families Cope with Their Deteriorating Condition Person-centred care was first postulated by English professor Dr Tom Kitwood (1997) who wrote extensively about carers putting the person first before they carry out necessary tasks.

He emphasised trust, honour and respect. Kitwood observed that a de-humanisation process can result from the attitudes of care staff and professionals towards people who present with the distressing symptoms and behaviours of dementia at hospitals and in community settings. He believed that a person-centred approach is the right of every human being, 12

regardless of their cognitive, social, cultural and physical status. There still remains a tendency for people without the condition to de-personalise those with dementia, as those with the condition seem to disappear within a maelstrom of aberrant and distressing behaviours.

Bowlby (1979) described how humans have a need to make strong bonds of affection to significant others. When these bonds are broken or lost due to dementia, many forms of emotional distress and personality disturbances can arise. Effective communication breaks down between those being cared for and their carers. When people with dementia feel under threat, they can exhibit attachment behaviours in order to regain the closeness, safety and security that they once had with their significant others and their once familiar surroundings.

Existential pain, grief and loss are also factors which dominate the trajectory of dementia and its symptoms. Those with dementia seem to know that they are unable to keep up with current time and events. They feel they are constantly in a strange situation which only complicates the condition because of the subsequent attachment behaviours that then arise (Ainsworth et al. 1978, Miesen 1993).

Ainsworth et al. (1978) identified attachment behaviours in young children towards their significant others, mostly the mother. Miesen’s study (1993) built upon Ainsworth’s findings but he looked at people with dementia for similar attachment behaviours. He found that they were unable to experience a sense of attachment because they could no longer form realistic links from external to internal objects, and this difficulty became progressively worse as the dementia trajectory continued.

When family members learn in counselling sessions that they can still reach their loved ones by entering into their world, they feel more reassured and open to learning coping strategies which benefit everyone, particularly the person with dementia.

Spinelli (1997) referred to “slips in time” as being a way that people can inhabit two distinct time zones between past and present. He suggested that the “past-as-currently-livedand future-directed” is a concept that has impact on how we can better understand people with dementia and how they live their lives from moment to moment. For someone who has lost a sense of time, nothing makes sense anymore. An effective way of connecting is for the counsellor, therapist or carer to move into the time zone of the person with dementia and be there with that person, to validate their comments and CQ: The CAPA Quarterly

A Person-Centred Approach memories and try to understand the meaning behind their often bizarre and difficult behaviours.

This was the case with Mrs J, who used to sit in a weekly reminiscence support group with her eyes closed. Another group member said that she always sleeps and there was no point in talking to her. However, when, as the group leader, I asked Mrs J why she sat there with her eyes closed, she said she was talking to her (dead) husband and “watching the rainbows”. As everyone in the group had dementia, they all understood and listened to Mrs J’s descriptions of her experiences. Mrs J felt validated. She began to open her eyes and take an active role in the group discussion. She became animated as she offered interesting stories to the group and never went ‘to sleep’ again during these sessions.

According to Aldridge (2005), “language deterioration is a serious problem and might cause secondary consequences of dementia”(Aldridge 2005:63). Mr R had been a well known jazz musician who displayed agitated and anti-social behaviours with a very short attention span, which excluded him from enjoying any activity for longer than ten minutes.

His inability to communicate and understand his world was the catalyst for his difficult behaviours. He was in a choir therapy group and constantly paced during the program.

His speech was limited to a few words, and social interaction was minimal. As choir leader, I observed his need to keep walking, so I took him with me to ‘help’ as I moved between each choir member. I then asked him to dance with me to the tune of ‘Daisy Daisy’, a well-known jazz song of the 1920s in waltz time. This was a creative, musical act that met his need for keeping on the move.

He immediately began to dance in a structured and graceful fashion and stayed for the entire choir session. After that, each week, Mr R was content to sit and wait his turn to dance instead of pacing. When I approached him, he would ask, “Is it time now?” and we would dance together. He treated me with respect and even asked at one stage whether he had stepped on my feet—a whole sentence! After a few sessions, he managed to stay in the group for the whole hour and often stayed behind, playing jazz chords on the piano. His speech improved, and he was able to communicate his needs more effectively, demonstrating fewer disturbing behaviours overall.

Mrs G had severe dementia and had been a trained singer.

Her speech was limited to one- or two-word sentences. During an early choir therapy session, we became deeply locked into the emotion of hushing the baby, when she elected to sing November 2012

Kirstin Robertson-Gillam

Gershwin’s ‘Summertime’ with me. She had forgotten some of the words but learnt them quickly within a few sessions and would sing this song as a means of communicating when she saw me outside choir therapy sessions. This phenomenon is supported by neuroscientific research in which “verbal production, be it sung or spoken, is mediated by the same language output system, and this speech route is distinct from the (spared) melodic route” (Peretz 2004:2). Through this song, I felt that Mrs G communicated her need to be nurtured, to nurture others and to recall her past experience of nurturing her children and grandchildren.

The Voices of People with Dementia While conducting a pilot and randomised controlled trial into the efficacy of psychosocial programs for reducing depression in people with dementia (Robertson-Gillam 2008a, 2008b, 2011), I interviewed more than eighty elderly people, most of whom had dementia. The following examples are from these interviews.

Some Moments in Time After an intimate and supportive interaction with myself, one lady with severe dementia said, “You’ve kept a breath in me that I’ve not had before”. In another such interaction, a lady told me that she had to go to the butcher’s to buy meat for tea because she had “two husbands”. After further probing, it turned out that her father-in-law used to live with them when she was a young wife and mother. She was unable to clearly articulate this so referred to her fatherin-law as her “other husband”, which made sense once her words were put into the right context. We were able to talk about how it felt to be cooking and caring for two men while at the same time rearing young children. For carers and family, these kinds of statements can sound confused and meaningless, but once we enter their world, they always make sense.

During a weekly choir group, one lady commented, “I have to sing to be understood”, while another choir participant told me, “When you sing, you find what is needed”. A gentleman with severe speech impairment due to dementia was able to follow the exact rhythm of a song. His confidence increased and, at the end of one choir session, he decided to be helpful towards another choir member because he realised that he was physically active while his companion was not. The other man lived in a different area than himself, and he began to wheel him away without 13

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knowing where to go. I noticed his need to be helpful and accompanied him in order to guide him and ensure the safety of both men, much to the dismay of the bus driver who was waiting to take him home. Under normal circumstances, this man would have been prevented from carrying out such a task, but when I turned it into a helpful one rather than one with the potential for disaster, both gentlemen were honoured and validated, shaking hands with each other after the task was successfully achieved.

Afterwards, the helpful gentleman said to me, “I’m finished with this man … I want to go home”. The bus driver was delighted and a satisfactory outcome was achieved.

When dealing with expressing emotions, one person commented, “I don’t cry ... I turn them in and do what they ask ... I prefer a better type of crying”. People with dementia often find it difficult to verbalise and express their emotional needs. They feel misunderstood, and this can often lead to distressing attachment behaviours.

As the dementing illness progresses, affected people can often feel challenged about the sequencing of daily activities. They either try to hide this fact or demonstrate difficult behaviours. They rarely ask for help, because they know that they used to be able to carry out their daily living tasks competently. A calm and unhurried approach is needed. One lady told me that when she becomes confused about what to do next, she “just follow[s] that one (pointing to another person) and I hang on to her ...

She doesn’t seem to mind and seems to know what to do”.

This was a coping strategy that worked and helped this lady to feel safe and secure, even though the other person also had dementia. In many ways, people with dementia can reach out and help each other at various stages of the disease process.

On approaching the end of his life, one gentleman with dementia, Mr B, who lived in a palliative care nursing home, whistled constantly and disturbed everyone. His history told me that he had been a taxi driver, so I wondered if whistling was his way of trying to communicate.

During our first session, I sang back his whistling phrase to him, and he answered by extemporising on the theme.

We continued with this whistling conversation for quite some time until he finally laughed and said, “That’s very good; you’re doing well”, and promptly fell asleep after many days of insomnia. Over a six-month period, I gave him creative counselling and emotional support. He was able to communicate his fear of dying and his need to connect and be understood. Relating to the idea of a bird singing and flying, I created a song for him about flying away like a bird in a sky. During subsequent sessions, we went outside and sat under a tree, looking up at the birds. As his condition deteriorated, he continued to look up at the ceiling in his room each time I sang this song. It became an anchor point for him that connected us in a special way. In essence, the song was giving him 14

permission to let go and fly away when his time came. He knew who I was and what I had to offer him. I breathed the rhythm of his breath when he was semi-comatose, and he cried and laughed with me in other moments. He asked for the ‘bird in the sky’ song at our last session and died peacefully a short time later. He was always a real person to me and touched me deeply. I never saw him through the lens of his dementing condition. There was always a reciprocal give and take in every therapeutic encounter, regardless of his condition.

Types of Counselling and Therapy Approaches for People with Dementia Individual talking therapy can be very effective for people with dementia, once we can enter their world and speak their language. We need to learn the language of dementia for this to happen. Some people like to chatter and feel connected by tidying up the room, or sitting still (particularly if they were depressed), or crying or laughing while they engage in a conversation. We need to know their previous histories and listen carefully to their use of words so that they feel understood during these interactions.

Others respond well to semi-structured activities like reminiscence groups, gardening, craft or music groups.

The reminiscence and choir therapy support groups I have run are primarily based on psychodynamic and existential approaches. In terms of the psychodynamic approach, it involves “a way of conceptualizing the propensity of human beings to make strong affectional bonds to particular others, explaining the many forms of emotional distress and personality disturbances, such as anxiety, anger, depression and emotional detachment which unwilling separation and loss give rise to” (Bowlby 1979:127). People with dementia feel separated from life and their loved ones by the overwhelming nature of their condition, which is socially and existentially isolating.

The existential approach involves being present-in-themoment and finding meaning in that moment of present time. People with dementia still continue to seek meaning in their existence. Frankl (1984) suggested that one way of finding meaning was by “being answerable to life instead of asking why we exist”, no matter what state we find ourselves in. This was true for Mr B, who expressed the feeling that his life had become useless and meaningless due to his dementing condition. He joined my reminiscence group and found meaning through expressing himself, telling his stories and interacting with others. His obvious joy at being listened to and being able to follow conversations raised his cognitive awareness so that he became more animated and alive.

Conclusion It is important to hear the voices of people with dementia and give them the opportunity to express themselves. Because dementia isolates people from the mainstream of life, it is a natural assumption that they have gradually disappeared.

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There is always a reason why people behave and act in strange ways when they have dementia, and it is the task of the counsellor, therapist and carer to find them and meet them where they are, rather than trying to fit them back into our world. In many cases, this can be challenging for family members because of the grief that accompanies the manifestation of dementia. Older people with dementia need emotional support and understanding. We need to learn how to enter into their world and find them there. Then, we can discover their essence, increase their quality of life and bring a deeper understanding of their personhood.

Do people with dementia really gradually disappear with deteriorating cognitive impairment, or do society and their environment expect this to happen and therefore encourage it? Neuroscience informs us that our brains are plastic and respond to environmental influences. In a famous longitudinal study involving nuns, Snowden (2001) found that Sister Mary, who, along with many others of her order, donated her brain to science, died at the age of 101 with high cognitive test scores. At autopsy, it was revealed that she had the neurofibrillary plaques and tangles that are characteristic of Alzheimer’s Disease. Other factors from this study such as a lifelong process of natural curiosity and wonder at life from childhood onwards (evidence of a richer vocabulary during childhood and adolescence often leading to college education) all seemed to relate to sustained brain functioning and reserve.

Snowden (2001) also found a correlation between the expression of emotions and sustained brain health. Perhaps mental processes, personality traits and environmental stressors have more impact on our psyches and physical health than we realise. Most important is the need to find avenues for expressing our emotions and having them validated by others.

It is through our emotions that our personhood is revealed.

Some earlier studies found that increased environmental and social stimulation could halt or even reverse the expected age-related cognitive decline of old age (Schaie & Willis 1986). Negative stereotypes about declining cognitive abilities due to ageing have been found to contribute to memory loss in later life, possibly being influenced by lowered self efficacy and motivation (Levy 1996). Cozolino (2010) speculated that the development of dementia may be a process which begins in early childhood and adolescence and that being curious about life and seeing it as a learning experience at every step may build new neuronal structures in the brain that could cushion it from the effects of dementia, as demonstrated by Snowdon’s (2001) nun study.

There is a perception in our society that elderly people do not require counselling because of their advanced age. This has not been my experience. I have been enriched by every elderly person with whom I have had the privilege to talk. They have so much to offer our society and have a need to tell their stories. They also can benefit enormously from counselling, which can often help them to find positive solutions to their November 2012

problems and a more positive, existential worldview through positive reinforcement with counselling.

Every human needs emotional support when facing challenges in life. Elderly people are humans who have lived longer but are vulnerable when they have dementia.

Specialised counselling techniques are valuable and important for this last stage of human life and a counsellor who is skilled in understanding dementia is ideal for meeting their needs. Elderly people can benefit from having someone to talk to and understand them, to act as a guide and mentor as they navigate the last stage of their lives, which is the most important developmental life task that we must all undertake. We all need acceptance and love while we live on this earth.

References Ainsworth, M, Behar, M, Waters, E, Wall, S 1978, Patterns of Attachment, Hillsdale, NJ: Erlbaum Aldridge, D 2005, Music Therapy and Neurological Rehabilitation: Performing Health, London: Jessica Kingsley Press Burrows, G 2004, ‘Dementia Linked to Depression’, Australian Nursing Journal 11(9): 31 Bowlby, J 1979, The Making and Breaking of Affectional Bonds, London: Tavistock Cozolino, L 2010, The Healthy Aging Brain: Sustaining Attachment, Attaining Wisdom, New York: Norton Press Frankl, V 1984, Man’s Search for Meaning, New York: Washington Square Press Kitwood, T 1997, Dementia Reconsidered: The Person Comes First, Maidenhead, Berkshire: Open University Press Levy, R 1996, ‘Improving Memory in Old Age by Implicit Self-Stereotyping’, Journal of Personality and Social Psychology 71: 1092-1107 Miesen, B 1993, ‘Alzheimer’s Disease, the Phenomenon of Parent Fixation and Bowlby’s Attachment Theory’, International Journal of Geriatric Psychiatry 8(2): 147-153 Peretz, I 2004, ‘Singing in the Brain: Insights Form Cognitive Neuropsychology’, Music Perception, 21(3): 373-390 Robertson-Gillam, K 2011, ‘Music Therapy in Dementia Care’, in H Lee and T Adams (Eds), Creative Approaches to Dementia Care, Basingstoke: Palgrave Macmillan 2008a, ‘The Effects of Singing in a Choir Compared with Participating in a Reminiscence Group on Reducing Depression in People with Dementia’, Masters Thesis, Sydney: University of Western Sydney 2008b, ‘Hearing the Voice of the Elderly’, in E MacKinlay (Ed), Ageing, Disability and Spirituality, London: Jessica Kingsley Press Schaie, K and Willis, S 1986, ‘Can Decline in Adult Intellectual Functioning Be Reversed?’, Developmental Psychology 22: 223-232 Snowden, D 2001, Aging with Grace: What the Nun Study Teaches Us about Leading Longer, Healthier, and More Meaningful Lives, New York: Bantam Spinelli, E 1997, Tales of Unknowing: Therapeutic Encounters from an Existential Perspective, London: Duckworth

Kirstin Robertson-Gillam, MA(Hons), MCouns, RN, RMT, PhD candidate (UWS) is a registered nurse (general and midwifery), a registered music therapist, a registered psychotherapist/counsellor, and a WorkCover provider. She is in the final months of writing her PhD dissertation which describes the effects of her choir therapy program on depression in middle-aged, community-dwelling adults.

Kirstin’s professional experience ranges from mental health, disabilities, aged care to palliative care. She has extensive knowledge of dealing with the many challenging issues associated with dementia, having worked as a consultant researcher, counsellor and educator with extensive staff development and support of staff, residents and relatives in aged care. Kirstin has a psychotherapy counselling practice in northwest Sydney and conducts workshops on dementia care, choir therapy and positive psychology.

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Supporting People with Younger Onset Dementia My main problem is that what I am feeling and what I am saying come out differently from what you are hearing.

What I am trying to convey to someone is always misunderstood. ~ woman with younger onset dementia The unique aspects of younger onset dementia and its impact on individuals and families make providing assistance to this cohort both challenging and immensely rewarding. This article aims to provide readers with an understanding of younger onset dementia, highlight the importance of early intervention support, and raise awareness of the condition amongst counsellors and psychotherapists.

What is Younger Onset Dementia?

Younger onset dementia (YOD) is defined as dementia with onset before the age of 65. For Aboriginal people, younger onset is defined as dementia with onset before 50 years of age. There are approximately 16,000 people in Australia with a diagnosis of younger onset dementia (Deloitte Access Economics 2011). YOD can be caused by a number of conditions such as Alzheimer’s Disease, fronto-temporal lobe degeneration, vascular conditions, stroke, alcohol abuse, and Lewy bodies, as well as developing as a result of other comorbidities such as Parkinson’s Disease, Multiple Sclerosis, Huntington’s Disease, HIV-AIDS, and Down Syndrome.

Different types of YOD present different symptoms, which may vary from one individual to the next. For example, people with frontotemporal dementia may exhibit considerable changes in behaviour, including increased aggression and decreased inhibition (Mocellin et al. 2008).

In 2011, Alzheimer’s Australia NSW (AlzNSW) was engaged by the Department of Family and Community Services NSW, Ageing Disability and Home Care (ADHC) to research the service and support requirements of people with YOD and their families. AlzNSW partnered with the Social Policy Research Centre at the University of New South Wales (UNSW) and UnitingCare Ageing to conduct the research, the result of which provides a comprehensive account of the service and support needs of people with YOD and their families. Roundtable group discussions and in-depth individual interviews were conducted with people with YOD, family carers and service providers.

People with YOD and carers also completed questionnaires.

The research findings have been published in a literature review (Thompson 2011) and a final report (Brown et al. 2012).

Diagnosing Younger Onset Dementia People with YOD and their carers who participated in the research project reported noticing a variety of changed behaviours over a period of time prior to receiving a diagnosis.

These included continually getting lost, being unable to read maps, forgetting appointments, being unable to tell the time, experiencing speech difficulties, having difficulties with activities of daily living including self care and cooking, forgetting to eat; demonstrating personality changes, showing aggression, driving dangerously, experiencing short-term 16

memory loss, having poor spatial perception, making poor financial decisions, being paranoid, and going through mood swings. People may not recognise such symptoms as problematic for several years, resulting in a delayed diagnosis of YOD. This can impact significantly on individuals and their families. Service providers reported that often partners and family members did not realise there was a reason for the person’s changed behaviour, which, in some cases, led to relationship and family breakdown.

There is no simple test for the diagnosis of dementia.

Diagnosis is made on clinical assessment and supported by investigation results. This includes a comprehensive assessment to ensure that other conditions that show similar symptoms are identified or eliminated.

(Workman et al. 2010:723) Younger people experience considerable delays in obtaining a diagnosis of dementia and often the initial diagnosis is stress, depression or other mental illness. Delays in diagnosis may in turn delay treatment, affect disease progression, delay access to services and supports, as well as reduce the time available for legal, financial and care planning. Often it is not until a crisis situation is reached that a diagnosis of YOD is received.

Many people interviewed experienced a lengthy diagnosis process that often involved convincing their GP that something was indeed wrong, followed by one or more misdiagnoses, before YOD was confirmed. Very rarely was the diagnosis process simple. People with YOD expressed concerns about the poor way in which their diagnosis was communicated, the lack of information they were given about dementia, and the lack of compassion, empathy and respect that was often displayed in the delivery of the diagnosis. They also expressed their disappointment at the lack of follow-up appointments and referrals to support services.

The Emotional Rollercoaster For some people, receiving a diagnosis is a relief, as they finally have an explanation for the difficulties they have been experiencing. Other people struggle to accept the diagnosis and lack insight into the extent of their condition. The time taken to accept a diagnosis can impact on the timeliness of people with YOD accepting assistance from support services; it may not be until they reach a crisis situation that they become willing to accept support, by which time they have lost the opportunity for early intervention.

There is a lack of understanding and awareness of YOD. Public perception is that dementia is ‘an old person’s disease’. Increased community awareness is needed concerning the condition, the impact of a diagnosis and the issues faced by people with YOD and their families. YOD is not a visible condition, and people CQ: The CAPA Quarterly

and Their Families Kylie Sait Lyndell Huskins

with a diagnosis are often still physically well. As a result, the community may not recognise the difficulties that a person with YOD faces. One man with YOD explained his frustration: People don’t seem to realise what you go through, other people. They think ‘oh, it happens to me too’ and I hate that because it’s not the same sort of thing. Like, my mother is 91 years old today, and she’s better than I am; but to you or anyone else I appear fine.

Dementia is a condition that carries a lot of stigma. The impact of stigma is profound and can affect a person’s ability to seek help and support (Alzheimer’s Australia NSW 2010). A service provider said: I think that YOD is more prevalent than people realise, that there are families out there who are really struggling with great difficulties.

I think there is some stigma associated with that [YOD], that someone’s become a flawed human being when they should be in the prime of their life.

Some family carers told of other family members who refused to accept the diagnosis, and who blamed them for the person having YOD, as this woman reported, We’ve had family problems with my husband’s brother and his wife who believe that if I did certain things, then my husband would be cured of Alzheimer’s. So they basically have said that it’s my fault that he’s got Alzheimer’s.

The grief that accompanies a diagnosis of YOD can be severe as the “anticipatory grief that accompanies a prolonged illness shares similar characteristics with traumatic stress” (Rando 1993 cited in Doka 2006:4). Carers can be kept in a highly stressed state that is produced by the incongruence created when a person with dementia, often requiring 24-hour supervision, is physically present but psychologically absent (Frank 2008:517).

Not only must carers cope with the stressful demands of caring for those who can no longer care for themselves but “they must also cope with the interpersonal loss of a likely deeply meaningful relationship” (Noyes et al. 2009:1). A husband caring for his wife said: The carer role for me is very lonely, you’ve got no one to talk to … loneliness is an issue. I’ve got lots of other stuff in my life, but at the end of the day, there’s a person you’ve been with for most of your life, and now you’re not going to be together. … Most of the time I’m strong, but sometimes it just catches you.

For many younger people, the diagnosis is utterly unexpected.

A review of life goals and wishes for the future is often accompanied by grief, fear of the future and, for those with insight into the progressive deterioration of dementia, the psychological impact of diagnosis of YOD can be considerable (Davies et al. 1995:1068).

Supporting People with Younger Onset Dementia and Their Families A diagnosis of dementia is particularly devastating for a younger person, and the impact on the whole family is enormous. The person may still have children living at home, be paying off a mortgage, be in the peak of a career, be physically fit and active, and have plans and dreams for retirement which are now seen as shattered.

Dementia is not just one person’s illness … dementia exacts a psychological, physical, social and financial toll upon the family (Brodaty & Green 2002:1) Emotional support is often needed to deal with the distress experienced by the person with YOD and the family, following the diagnosis of YOD and during the process of readjustment and change that comes with the progression of dementia. The person with the condition often relies heavily for emotional support on the primary carer, who is often a partner but may be an adult child. Carers also have their own emotional support needs. Given the long-term strain on carers of people with dementia, interventions directed towards them have aimed to decrease the burden and stress of caregiving (Lavretsky 2005:124).

People with YOD and their families may not seek counselling in the early stages of dementia; however, carers participating in the research project indicated that counselling for those with YOD would support them in accepting the diagnosis and would acknowledge their strengths and remaining capacities.

One man with YOD who lives alone indicated that while he accepted his diagnosis, he would like the opportunity to talk to someone who understands: Maybe just talking to somebody would probably help. You know, I can talk to my mother or father or brother, but they’re different.

I don’t know how to say it. They just say ‘get over it’.

As dementia is a progressive condition, people’s circumstances and needs can change quite suddenly. Key objectives of support services should be to increase enablement, maintain family relationships, support living at home, maximise community participation, and minimise risk of premature entry into residential aged care. Early intervention services are very important for people with YOD and their families. Interventions can take the form of education programs about dementia, training to improve coping skills and problem solving, support groups, and counselling (Brodaty & Green 2002:2). Such interventions are often directed at carers; however, they also help individuals with dementia to accommodate dementia into their everyday lives and deal with the emotions surrounding their diagnosis. In recognition of the unique differences of people living with YOD, Alzheimer’s Australia NSW offers (continued on Page 32)

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Counselling the Carer Dementia is a word loaded with pre-conceived ideas, myths and, often, fear. By focussing on the issues from a counselling perspective, this article aims to dispel some of the myths and provide a greater understanding of dementia. With this understanding, readers will be able to bring greater clarity to their work and to the lives of their clients who are dealing with a partner, friend or relative who has been diagnosed with this debilitating illness.

Dementia is a terminal illness that presently affects over 257,000 people in Australia, and these figures are predicted to double by 2030 (Deloitte Access Economics 2011: 9). Dementia has over 100 causes. Alzheimer’s disease accounts for 50–70% of all dementias, followed by what is termed vascular dementia.

What all the dementias have in common is the process of the deterioration of cognitive function—memory, intellect, rationality, social skills and emotional reactions. This article will focus on the experience of change, of grief and loss and on the specific issues that distinguish dementia from other disease processes.

For dementia counsellors, our clients most often present to us when they are in crisis, when their feelings have become overwhelming and they need help and support. We will most likely see the family members, partners or friends of the person who has been diagnosed, as they deal with the changes involved and with the grief and loss surrounding the person that they knew. These feelings may initially present as anger, sadness, resentment or guilt. Molyneaux (2011) points to the false dichotomy between the language of the carer and the cared-for.

This language is fraught with judgement and does not truly reflect the complexity of the roles in the relationship. In this article, I will refer at times to the role of ‘the cared-for’ purely to differentiate between the person who has been diagnosed with dementia and the person whom I will call ‘the carer’ or ‘the client’. These carers might be partners, friends or relatives, and all are concerned about someone close to them.

Early Stages of Dementia At the initial diagnosis, doctors may tell clients that they have ‘probably’ got dementia; the type of dementia may be specified, or the person being diagnosed may be told that their condition is a combination of dementias. No diagnosis is definitive. It is arrived at more by the elimination of every other causative factor and can only really be proven definitively at autopsy. From the diagnosis onwards, there are no clear answers; there are no proven medical approaches for treating the disease. There is no definite time span to it, although we do know it is progressive and fatal.

It is hard to know how the dementia will look in time for any particular individual, because it affects each person differently.

Differing strategies will work at different times as the person with dementia fluctuates in his abilities. Our Western cultural norm of using a rational way of looking forward to and planning the future no longer works and, instead, needs to be replaced with the ability to take each day as it comes and live each moment as it happens. The early stages of a dementia look totally different from the later stages of the disease.

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It is the observation of small changes in a person, noticed by the person herself or by those close to her, that leads to medical investigations and eventual diagnosis. As the initial changes occur they are small, but as they progress they have more effect on the people who are in regular contact with the person diagnosed. This is the time that we counsellors and therapists often see the carers, due to their frustration and feelings of powerlessness. As the relationship between the carer and the person with dementia changes, the carer will find that using logic and reasoning with the person with dementia does not always work. The previous ‘rules’ for the relationship, which may have had boundaries and norms, must be reassessed in order to move forward. Not only are our clients dealing with their own emotional reactions, but their reality is also under question. The carer’s paradigm of their relationship to the world and how they understand it is often challenged, and a new way needs to be found in order to deal with these changes.

New skills for communicating and problem solving need to be developed. As counsellors, our aim is to help individual family members or carers find ways to make sense of the dementia so that new meaning and hope is brought into their lives.

Barbara* came to see me because her husband had been diagnosed with dementia. He had been a solicitor, had always been busy, was involved in various community groups like Rotary, and had kept up to date with current affairs and what was happening in the world.

Barbara found that now he was content to just sit in front of the TV all day and had no motivation or desire to do anything, and she was finding this very hard to deal with. She was becoming intolerant and frustrated with him and sometimes yelled at him. She described herself as “hating who I have become”.

One of the struggles that can confront people in this early stage is that change needs to be led by the carer, the person without dementia. The person who has been diagnosed is, by now, finding it increasingly difficult to make new memory pathways in the brain—to make sense of whatever is happening—and this has an impact on his behaviour. He may find it very difficult to think before he acts. Boss (2011: xix) notes that dementia changes a person’s personality, mood and behaviour so that it is much more than a physiological condition. It is a relational condition that affects carers, family, friends, colleagues and acquaintances of the person with dementia. This results in the carer not only taking over more practical issues for which she previously had no responsibility but also taking the responsibility for emotional and relationship issues. It is not the same relationship that it was, and this can feel extremely unfair to the carer.

Grief and Loss Change is a constant in the caregiver’s life. In the early stages of the disease, the dementia presents as very small slips of cognition, such as forgetting someone’s name, trouble following complex tasks, putting things in different places, having trouble saying certain words or struggling to use the TV. Maybe, as time progresses, the person needs prompting to have a shower CQ: The CAPA Quarterly

Helen Carswell

or to change her clothes, or she can’t be left alone anymore. This constant change can cause intense grief and loss in the person doing the caring. Not only is the carer losing the person she knows but her relationship with that person is changing. Their roles are changing; life as they knew it has changed, as well as any hopes or plans they had for the future. The resultant search for meaning and equilibrium is often associated with intense feelings of grief and loss.

In the writings on grief and loss, it is widely recognised that grief is normal, and a necessary experience that we all go through during our lives in response to loss. Due to our relational attachment to others and the meaning that these relationships give to our lives, grieving and loss are a necessary outcome. Models have progressed from the initial theory of Kubler-Ross which normalised a passive response, to that of Worden (2001), who posits that a more active focus helps to reduce feelings of helplessness.

The usual feelings associated with grief are those of sadness, anger, guilt, anxiety, loneliness, helplessness, shock, yearning, relief and numbness (Worden 2001:11-15). All of these feelings are felt, but they become much more complex when experienced through the symptoms of dementia. The person is present but not available (Boss 2011:1-4), and the grief is ongoing. Within the realm of dementia counselling, three types of grieving have been identified: disenfranchised grief (Lenhardt 1997), anticipatory grief (Worden 2001; et al. 1996) and, the most relevant to dementia, ambiguous loss (Boss 2011). All are termed ‘complicated grieving’ because of their ongoing nature.

Disenfranchised grief arises when a person or society does not recognise the right to grieve or feel any sense of loss (Lenhardt 1997). It may be a separation, the death of a partner in a gay relationship, the death of an unborn infant, or the loss of a pet. When specifically looking at dementia, carers may not recognise their feelings as grief. As normal grief relies heavily on ritual and social recognition, disenfranchised grief means that carers often struggle with these feelings that can also be discounted by society as a whole. There is definitely no ritual and no recognition for the grief experienced when someone is not available in a psychological sense. This can lead to feelings of alienation for that person with the resultant feelings of loneliness and isolation.

When a person’s grief is anticipatory, it is a grieving associated with a lost future and the ultimate loss of the person. A son or daughter may now miss out on having grandparents for their future children. A partner realises that those plans for an overseas trip are no longer possible, that the vision for a shared future will not now happen. The realisation of the impending death of the person with dementia affects how clients may experience their grief. Walker and Pomeroy (1996) question anticipatory grief as it is based on a sense of singular loss experience: a death.

When a person has been diagnosed with a dementia, the losses are multiple and ongoing, but the complication of anticipatory grief serves to highlight the complicated notion of grief itself.

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Ruth’s* husband had travelled a lot with work and had been absent for much of their children’s lives. After his diagnoses of dementia, Ruth’s comment was, “Now was the time when we were going to be together and enjoy ourselves. We were going to travel when we felt like it, to enjoy the grandchildren. It just isn’t fair.”

In relationships within families, particularly where there is some level of dysfunction, there are often complicated emotions that include regret for what might have been. As the dementia progresses, there may be no possibility for talking about what happened; for apologies, for making sense of or resolution of an issue. These feelings of regret particularly affect children who have assumed that their parent would be around for a long time still—and as a cognitively aware individual. Children must say goodbye to—and grieve for the loss of—any hopes they have carried with them for resolving past issues.

Pauline Boss identified the term ambiguous loss in the 1970s, first in relation to military wives whose husbands were physically absent and then to carers of people with dementia whose partners are physically present but psychologically absent. This loss is a common theme we see in counselling clients. Ambiguous loss can be incredibly confusing and disorienting for the person concerned. Comments made by well meaning friends and acquaintances such as, “You are so lucky your partner is still alive”, are not comforting, because the carers are well aware that they don’t have the partners they once had. Their awareness of their partner being present but not available only adds to their feelings of sadness and loneliness.

This incongruence is often confusing and painful.

Janice* stated, “I live for those very rare moments when I get a glimmer of who my husband used to be. They don’t last long but those moments make up for everything. …”

The ambiguity of the ‘unavailable presence’ of the person with dementia witnessed by the carer is also reflected in the relationship between them. Moments of frustration and anger balance out the feelings of love; feelings of hopelessness are buoyed by moments of joy. The illness forces us to cope, and to learn to live with the ambiguity and the unanswered questions.

Boss believes that by accepting the paradox, we can make sense of this ambiguous loss and, in the process, lower the carers’ stress levels (Boss 2011:1-19).

She suggests ‘both-and’ thinking can change perceptions.

She is both gone and still here.

I take care of both him and myself.

I am both a caregiver and a person with my own needs.

I both wish it was over and wish that my loved one keeps on living.

I am both sad about my lost hopes and dreams and happy about some new hopes and dreams (Boss 2011:14).

Theories around grief tend to give us a structure—to make it seem as if we have some control over grief. Boss connects this view of wanting to control our environment to the ideas around ‘closure’. She posits that closure is a concept which has been developed in order to make life “neat and tidy” (2011:58-63).

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Features Whereas, when a person is diagnosed with dementia there is no hope of closure or order, there is only ambiguity and a lack of control. Boss (2011:66), sees the importance of helping our clients to find meaning and control through this illness and the ongoing nature of it, as opposed to having any belief in finding closure.

Caring for a person with a dementia is often an overwhelming and thankless task. The reality is that the less carers take time out to look after themselves, the more likely they are to become unwell, break down and collapse (Cade 2002:115). Carers need to maintain their own identities, keep up their social connections, do things that make them feel good, that produce relaxation, and take time out from the dementia sufferer. It is not selfish but necessary self care, and carers will find they are more tolerant, more patient and have a lot more to give if they are also self-caring.

Self care for the carer is paramount. To be able to maintain the self while at the same time being overwhelmed by the association with dementia and the constant changes it brings is vital.

Intense Sadness or Depression?

The difference between long-term grief and depression can be difficult to identify. McKissock (1990:20) talks about intense sadness and notes that this is different from depression, which is a clinical condition and requires medical treatment. The symptoms of grief—which include loss of appetite, inability to sleep, bouts of sadness, a lack of energy, a lack of motivation and/or having little reason to live—closely mirror those of depression. Worden suggests that it’s a lack of self esteem and distorted thinking which indicates a depression. He refers to Sigmund Freud, who noted that with grief the world is poor and empty, whilst in depression the self is poor and empty

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(2001:21). As Boss describes it, dementia results in ongoing, complicated grief which is not the result of the clients’ psychic weakness but is the result of a disease process which is outside any control. Symptoms do need to be treated, but interventions vary: with depression you may need medication, but for sadness and grief you need human connection and permission to grieve in your own way (2011:31). The symptoms of a dementiarelated depression are not seen as pathological but as part of the journey with dementia. It is worth also noting that the carers may become more vulnerable and overwhelmed from the caring role itself than from the emotions they are experiencing.

It may be that additional care for the carers is warranted, such as the use of respite.

Peter* needed support in caring for his mother with dementia.

During the past five years, Peter had had a major illness himself which left him physically affected. His marriage of 30 years had broken down, and his children had stayed with their mother.

He moved back to the city to look after his mum when she was diagnosed with dementia, but doing so entailed the sale of his house. Not only is Peter dealing with the grief around his mother and her diagnosis, but he also has immense grief around the other changes he is experiencing in his life. His grief is multifaceted and, for him, it is intense and overwhelming.

Counselling Models This paper touches on some of the main issues to bear in mind, but it does not cover them all. The client’s family of origin, attachment style, coping style, how that person deals with emotions, what type of relationship was present before the dementia, the client’s experience of life, and anxiety around his or her own death. All of these factors and more need to

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be considered when assessing how to proceed, and before any intervention is considered.

Making an assessment with a family systems view will provide a strong foundation for working with clients who are experiencing a family member with dementia. The implications of the disease reverberate throughout the family, and even though emotions are felt differently by each person involved, the disease will affect the way the family functions. Family conflict can increase the stress felt by the primary carer and can impact on the person with dementia. If counselling can reduce family conflict, the positive contribution that each member of the family can make is maximised.

Existential counselling with its focus on the human condition can lead to a more philosophical understanding of dementia. The four major themes in existential thought (i.e. freedom, loneliness, meaning and death) can lead to the client questioning life in ways not previously considered. What does it mean when a person you love is losing the rational part of her- or himself?

Carers may be overwhelmed when we see them; therefore using a mindfulness approach can serve to relax them and help them to focus on the here and now. Or perhaps the client needs a more practical understanding of why the person with dementia is behaving in such a manner. Every client is different and what works for one might not work for another.

Arushi* came to counselling after having attended a support group. She eventually got around to describing how she didn’t fit in: “Everyone else is coming from a loving place. I don’t like my husband much at all and am angry that I now have to look after him.”

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There are many models of counselling that can fit within the context of dementia, and it comes down to the skills of each particular counsellor to choose and use models that fit for the individual client. Ultimately, our aim is to help our client to understand the disease and to renew their hope in life. *Names and details have been changed in order to maintain confidentiality.

References Betts, AK and Sanders, S 2004, ‘Alzheimer’s Caregiver Differences in Experience of Loss, Grief Reactions and Depressive Symptoms Across Stage of Disease: A Mixed-Method Analysis’, Dementia 3(2): 195-210 Boss, P 2011, Loving Someone Who Has Dementia, San Francisco: Jossey-Bass Cade, E 2002, Taking Care of Parents Who Didn’t Take Care of You, Minnesota: Hazelden Deloitte Access Economics 2011, Dementia Across Australia: 2011-2050 Lenhardt, A 1997, ‘Grieving Disenfranchised Losses: Background and Strategies for Counsellors’, Journal of Humanistic Education & Development 35(4): 208 McKissock, M 1995, Coping with Grief, Crows Nest (Sydney): ABC Books Mittelman, M, Epstein C, and Pierzchala, A 2003, Counselling the Alzheimer’s Caregiver, Chicago: AMA Press Molyneaux, V, Butchard, S, Simpson, J and Murray, C 2011, ‘Reconsidering the Term ‘Carer’: A Critique of the Universal Adoption of the Term ‘Carer’, Ageing & Society 31(3): 422 -437 Walker, RJ and Pomeroy EC 1996, ‘Depression or Grief? The Experience of Caregivers of People with Dementia’, Health & Social Work 21(4): 247-54 Worden, JW 2001, Grief Counselling and Grief Therapy, Hove and New York: Brunner-Routledge Yalom, ID 2008, Staring at the Sun, Carlton North, Victoria: Scribe Publications Pty Ltd

Helen Carswell, RN, BSocSc(Hons), GradDipAppCouns, is a Senior Counsellor at Alzheimer’s Australia NSW. She is a clinical member of CAPA and PACFA and can be contacted at helen.carswell@alzheimers.org.au.

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Persons with Dementia from Other Cultural Backgrounds Australians have a diverse range of cultural and linguistic backgrounds. Migrants with dementia could be described as strangers in a strange land. Persons for whom English was learnt as a second language often lose their English language skills during mild to moderate stages of the disease (Mendez et al. 1999). Loss of long-term memories may also result in migrants forgetting the cultural knowledge they have learnt about Australia and reverting to traditional behaviours (e.g. squatting toilets). Loss of sense of self, common in dementia, may be compounded by loss of ability to communicate with and interpret the meanings of the world around them.

Most Australian epidemiological studies of dementia have specifically excluded participants not able to complete the assessments in English, and no research has been conducted to date on the prevalence of dementia in Australians who have low proficiency in English. Neuropsychological tests used for diagnosing dementia are likely to be culturally biased, producing diagnoses of uncertain accuracy. An Australian study of community-dwelling older persons, tested in English, found that the performance of persons born in countries where English was not the primary language was poorer on both verbal and non-verbal neuropsychological tests (Low et al. 2012). Similarly, an American study showed that Hispanic elders performed more poorly on neuropsychological tests when tested in English than when tested in Spanish (Farias et al. 2011).

The 2011 Australian Census found that more than a quarter (26%) of Australia’s population was born overseas, and a further one-fifth (20%) had at least one overseas-born parent (Australian Bureau of Statistics 2012). The languages most commonly spoken at home by Australians are, in order of prevalence: English, Mandarin, Italian, Arabic, Cantonese, Greek, Vietnamese, Spanish, Hindi and Tagalog (Australian Bureau of Statistics 2012).

The description Non-English Speaking Background (NESB) was previously the umbrella term used by government agencies for this group. The phrase Culturally and Linguistically Diverse (CALD) has been more recently favoured as a descriptor, but both phrases minimise the diversity of the group and are inaccurate when used in the singular to describe an individual case. When working with groups who may require particular consideration because of their language or culture, it is useful to first identify the cultural group to which the person relates (e.g. Chinese, Arabic) and second to describe them according to the most relevant issues that they may have (e.g. overseasborn persons of non-English speaking backgrounds, recent migrants, first generation migrants, members of new and emerging communities, ethnic community members) (NSW Government Community Relations Commission 2012).

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Prevalence of Dementia in Culturally Diverse Groups The estimated prevalence of Australians with dementia who spoke a language other than English at home was 35,000 in 2009, and this was expected to increase 3.4-fold to around 120,000 in 2050 (Access Economics 2009). This estimate was based on an assumption that the prevalence of dementia is similar for Australians with different language preferences, reflecting different cultural norms, but this assumption may be flawed.

American data showed differences in the prevalence of different types of dementia between Asians, Pacific Islanders, Blacks, Latinos and Whites (Hou et al. 2006). A comprehensive review demonstrated that the mean prevalence of dementia among people aged 65 and over from developing countries was 5.3% (Kalaria et al. 2008)—lower than the rate of 6.4% in European countries (Lobo et al. 2000). There was wide variation between developing countries, with consistently low prevalence in India and sub-Saharan Africa, moderate prevalence in China, and rates similar to developed countries in certain Asian and Latin American countries. Prevalence rates in India and rural Latin America were found to be a quarter of the European prevalence, in China half, and in urban Latin America, four-fifths of that in Europe (Rodriguez et al. 2008). These differences in dementia prevalence may be true differences due to genetic, geographical or lifestyle factors (Ferri et al. 2005), or such difference may result from a ‘healthy survivor’ effect, wherein persons in developing countries who are more susceptible to dementia die from other causes before reaching an age when dementia manifests, or, alternatively, the differences detected may be due to methodological differences in the measurement of cognitive impairment or the definition of dementia (Ferri et al. 2005).

We hypothesise that different Australian migrant groups could have different risk factors for dementia, varying by sociodemographic and lifestyle factors as well as migration history.

For example, many migrants from Italy and Greece tended to have low education and literacy levels in their native languages.

Many maintained traditional dietary patterns, resulting in their living longer than other Australians (Kouris-Blazos et al. 1999).

Low education is a risk factor for dementia (Valenzuela & Sachdev 2006); however, a Mediterranean diet has been shown to be protective (Barberger-Gateau et al. 2007). Vietnamese refugee migrants provide another example. Stress, particularly extremely stressful and traumatic events, may increase dementia risk, as evidenced by studies of war veterans (Yaffe et al. 2010, Qureshi et al. 2010) and refugees (Folnegovic-Smalc et al. 1997).

Presentation of Dementia Earlier studies in Asian countries suggested that vascular dementia was more prevalent than Alzheimer’s disease (Prince 2007), but more recent research does not support this notion, CQ: The CAPA Quarterly

and Their Carers:

Implications for Counsellors

with prevalence estimates of vascular dementia shown as lower than that for Alzheimer’s disease among Asian individuals aged over 65 years, ranging from 0.6% in Sri Lanka to 2.1% in South Korea (Kalaria et al. 2008).

Cross-cultural studies done overseas report differences in presentation of behavioural and psychological symptoms of dementia. Evidence exists for cultural differences in the prevalence of symptoms such as delusions (Chow et al. 2002), depression, aggression and agitation (Cohen et al. 1998a, Mintzer et al.

1996), and hallucinations, disinhibition and irritability (Wu et al.

2009b), although findings are not equivocal (Cohen et al. 1998b).

These differences may be due to variations in neurobiological changes to the brain, in how symptoms are perceived by different communities, or in behaviours typical as reactions to difficult situations by people in different communities.

Diagnosis and Care In Australia, dementia is diagnosed later in the disease in persons from non-English-speaking backgrounds than in those from English-speaking backgrounds (LoGiudice et al.

2001). Anecdotally, presentation occurs at a crisis point (Berisic & Nesvadba 2008). Delays in diagnosis may be because of differences in recognition of the symptoms of dementia, difficulty in help-seeking, in the need for formal care services, and in ability to negotiate the health and aged care system.

Persons from Italian, Greek and Chinese backgrounds recognised the symptoms of mild dementia as well as did third generation Australians (Low et al. 2010); however, they would seek help for dementia symptoms differently, with migrant groups reporting a greater reliance on family as the first source of help (Low et al. 2011), which may delay diagnosis. Many Australians born overseas believe that the symptoms of dementia are part of normal ageing (Low et al. 2010, Berisic & Nesvadba 2008, Cultural & Indigenous Research Centre Australia 2008). Dementia symptoms are also sometimes identified as mental illness. Lack of understanding about dementia can lead to the perception that the symptoms are somehow the fault of the person with dementia (Low et al. 2010).

Dementia can be difficult to diagnose accurately in Australians born in non-English-speaking countries. Evidence of difficulties due to the cultural bias of neuropsychological tests were described above. The widely used dementia screening tool, the Mini-Mental State Examination (Folstein et al. 1975) produces lower scores for those from non-English-speaking backgrounds (Escobar et al. 1986, Anderson et al. 2007), for migrants less assimilated into their adopted society (Simpao et al. 2005), and for those with low socioeconomic status (Espino et al. 2001) and low education (Strickland et al. 2005, Anderson et al. 2007, Borson et al. 2005).

Lee-Fay Low Fleur Harrison

The Rowland Universal Dementia Assessment Screen (RUDAS) was devised as a culturally fair screening tool (Storey et al. 2004).

When tested in community-dwelling and clinical populations, the RUDAS was at least as accurate as the MMSE in terms of balancing correct identification of dementia with minimising false positives and was not biased on language, gender and education (Rowland et al. 2006, Basic et al. 2009, Gonçalves et al. 2011).

Persons from cultural minority groups prefer to be cared for within their communities rather than in residential care (Low et al. 2011). The ratio of persons born overseas living in Australian residential aged care is lower than that for persons born in Australia. The opposite is true for community care (Australian Institute of Health and Welfare 2011b, Australian Institute of Health and Welfare 2011a).

Persons from non-English-speaking cultural backgrounds prefer to receive care from an ethnic-specific rather than a mainstream service (Low et al. 2011). This may be because they are poorly catered for by mainstream (i.e. non-ethno-specific) services. A survey of Melbourne aged care facilities found that just under half did not have a staff member who could converse with the 19% of residents who preferred to speak a language other than English, and a quarter of the facilities did not offer any language-relevant services (Runci et al. 2005a). Italian speakers in mainstream Australian residential aged care facilities spend less time communicating with other residents, and are prescribed higher rates of daytime benzodiazepines than are Italians in Italian-specific facilities (Runci et al. 2005b). Models of care have been proposed whereby residents from the same cultural background are clustered within facilities, and partnerships are developed between cultural experts and these mainstream facilities (Radermacher et al. 2009).

Family Carers A critical component of management of dementia is the education and support of family carers (Brodaty et al. 2005).

Carers from immigrant backgrounds in Australia may have higher levels of depression and more unmet needs (Wu et al.

2009a, Schofield et al. 1998).

Australian carers from culturally diverse backgrounds have been reported to have a lower level of access to information, respite care and home- and community-based services compared to those from Caucasian backgrounds (Schofield 1998). An American dementiaspecific outreach and services program targeting Latino carers (The El Portal Latino Alzheimer’s Project, in Los Angeles County) provided coordinated, ethnic-sensitive services and resulted in fewer barriers to care and greater service utilisation (Aranda et al. 2003).

In general, cultural norms in migrant communities are such that older people will be cared for at home by the family. The carer role is typically seen as part of normal family responsibilities and is thus often shared between multiple family members, most commonly (continued on Page 34)

November 2012

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Features

Working With Dementia: The Counselling Needs of Personhood is a standing or status bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition, respect and trust. (Kitwood 1997) “Living with dementia, in whatever capacity, could be described as the biggest challenge in twenty-first-century western society.”

So says Danuta Lipinska (2009). As people live longer, and with dementia set to become a more common experience, directly or indirectly, for many Australians, it is timely to ask the question: “What do counsellors and therapists need to know to enhance their ability to help in this circumstance?” The answer, of course, depends upon which sector of the ‘dementia community’ presents in the therapeutic setting. There are two main groups, the first being the immediate or primary carers of persons with dementia— generally the spouse or partner plus other family members such as daughters, sons and siblings—and other friends and relatives who may, unwittingly and unwillingly, find themselves involved in or responsible for the person’s care. Generally, this group will be seeking strategies to help them cope with their new and unexpected role and understanding of what it means to become the carer of a person with one of the hundred-plus brain illnesses that cause dementia (defined as a chronic or persistent disorder of the mental processes caused by brain disease or injury and marked by memory disorders, personality changes, and impaired reasoning). Counselling services for this group have been available for a considerable time through the National Dementia Helpline and Alzheimer’s Australia’s faceto-face counselling service, though such services are often accessed only at times of crisis.

The second group is, of course, persons with dementia themselves. Counselling/therapy for this group tends to be specialised and requires a sound understanding of the syndrome of dementia. It is less likely that those with dementia will seek therapy of their own accord, although this does occur.

A third, less obvious but highly significant cohort, whose members are increasingly likely to present for counselling, are those employed in the aged care sector, specifically those working in the residential care setting. This cohort, which can be divided into subgroups—management, senior staff, direct care workers and care service employees—forms the focus of this article. Collectively, all play a crucial role on a daily basis in creating quality of life for and well being in, persons with dementia who reside in long-term residential care. The types of concerns and problems with which they are likely to present will be as varied as the group members themselves (Brooker 2007).

Workers in the long-term care setting have long been viewed as the poor relations of those who work in acute care. In the 1980s, work in the aged care sector was perceived as “aimless residual care” (Evers 1981: 205) and by the 1990s was perceived to have acquired the status of “good geriatric care” (Reed & Bond 1991: 55), which focussed purely on attending to basic needs of residents. Then, as now, this view failed to take into consideration the “complex and skilled nature of work in longterm care” (Nolan, 2006) with its need to balance the provision of appropriate medical interventions within a ‘care not cure’ environment that came with high physical demands and emotional tolls on staff, particularly direct care staff.

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Despite moves to improve care practices in recent years, it is apparent that a large proportion of direct care workers remains ill trained and under prepared for the challenge of working with residents who are impaired in cognition and functional ability due to dementia. Low levels of literacy and language proficiency problems are prominent amongst direct care and care service staff. Evaluations at the end of many education sessions are left incomplete, with participants admitting that they cannot read well enough to understand the questions or write well enough to provide answers to questions requiring more than a tick in a box—and even that challenges some. Attitudes and skills that should be prerequisites to employment in the residential setting and that are essential for the delivery of good psychological care are absent or unformed due to poor or non-existent induction programs and relevant education and training programs (Nolan 2006). Few of the staff who are new to aged care—particularly those from cultural backgrounds that do not confer the care of their elderly on others outside the home—will have any real idea of what will be expected of them. Along with the heavy physical tasks of caring for residents’ personal hygiene and grooming and the emotional impact of caring for residents who are palliative, they will encounter behaviours that will undoubtedly both challenge and frighten them. Such staff will likely find themselves dealing with physical and verbal aggression and, perhaps, find themselves subject to unwanted sexual advances from a resident who has dementia. They will be challenged in trying to provide care to people—encountering frailty, dying and death on a daily basis— ways of dealing which may be experienced as very different from their own cultural expectations. These challenges can also lead to confusion when their own emotional health and well being is not a high priority for their employing organisation.

For direct care staff in the residential workplace, uncomfortable realities include a perceived lack of support and recognition from management, lack of inclusion in decision-making processes, poor internal communication, inter-shift rivalry, unrealistic staff-toresident ratios, cultural differences and insensitivities, denigration of staff, and the experience of cumulative grief and loss all whilst trying to meet the multiple and multi-faceted needs of residents with dementia. The picture painted is not an encouraging one and raises a number of questions about how a situation like this can exist and, for the therapist, many questions about how they can expect the experiences of these individuals to unfold in the counselling session.

Answers are possibly best explored by looking at the directional change of residential care away from providing basic care to one in which the psychological care of the person with dementia takes precedence, in theory at least. In 1997, British psychologist and founder of the Bradford Dementia Group, Tom Kitwood, promulgated a new approach to dementia care.

The uptake of Person-Centred Care, grounded in the tenets of Carl Rogers’ theory of Client-Centred Therapy, has slowly manoeuvred the aged care sector towards a more compassionate and humane model of care for people living CQ: The CAPA Quarterly

Professional Carers Georgene McNeil with dementia and has resulted in a great many changes to the ways in which the care practices and principles for carers of people with dementia are viewed (Morton 2008:28). Central to Kitwood’s work was the notion that the pervading culture of an organisation and in particular the beliefs and attitudes held, are a significant determinant of quality of life for people with dementia. His vision was a new culture of care that held the maintenance of ‘personhood’—“a standing or status bestowed upon one human being, by others, in the context of relationship and social being”—as the all-important focus of care staff (Kitwood cited in Bredin, 1992a:275). For Rogers, each client was a unique and whole person and the attitude of the counsellor “toward the worth and the significance of the individual” was of prime importance. His highlighting of the propensity of others to view the individual as “an object to be dissected, diagnosed, manipulated” (Mearns & Thorne 2007) actually reflected the reality of the life of persons with dementia in institutional settings at the time—in other words, they were dehumanised and devalued by those who cared for them. Distressingly, the lack of status and value that applied to people with dementia and their carers, paid and unpaid, in the ’80s and ’90s persists, even now. The latest research by Alzheimer’s Australia NSW (July 2012) reveals that there is still stigma attached to having dementia and to being a carer of a person with dementia. A report by Innes et al. (2006) found a “lack of value by society of those employed to provide direct care … and a workforce that felt undervalued, untrained and unsupported by their managers.” It is reasonable to consider that a sense of personhood may be missing in this staff group and for the therapist or counsellor to consider how they might facilitate its restoration.

For Kitwood, the term ‘person-centred’ in the context of dementia care was also an attempt to conceptualise ways of working with people that focussed on communication and relationships. He saw these relationships as being undermined in the care setting by the way in which staff communicated (through their behaviour) with residents. Disparagement, disempowerment, intimidation, blame, mockery, invalidation and intimidation were and continue to be some of the distinguishing features of life in residential care, and all came together, collectively creating what Kitwood termed ‘Malignant Social Psychology’ (MSP). While he conceded that they were not necessarily intentional, he recognised that these behaviours created a culture of care that was toxic to the personhood and well being of both the person with dementia and the care staff. In other words, MSP was viral in its effect, spreading throughout the workplace from one member of staff to another, eventually becoming the accepted way of caring. Brooker (2007) concurs with Innes et al (2006) that the root of MSP is contained in our societal values: persons with dementia (with its implied association with ageing, madness and mental health disorders) and their carers, are not valued in a society where intellect

and youth are prized attributes. Indeed, the continuing lack of status and value of the aged care worker can be inferred from significantly lower pay rates than those of the acute care worker.

A brief visit to any number of aged care facilities today reveals that neither the care delivered to residents nor the treatment of direct care and care service employees is necessarily based on the recognition, respect or trust that Kitwood felt were implied in the bestowing of personhood, despite some twenty years having passed since he first spearheaded the person-centred approach.

By way of example, my role as the mentor of groups of dementia champions during a university research project afforded me the unexpected experience of witnessing at first hand the lack of respect, trust and recognition that was afforded to staff. Senior staff, usually Registered Nurses, frequently spoke derisively of the direct care staff, highlighting their lack of training and low levels of literacy which, while true in many cases, had not been a barrier to employment; AINs (Assistants in Nursing or direct care staff) were accused of being deliberately resistant to “doing what they were told” or “complying with orders”. Analogies were drawn between staff behaviour and the “challenging behaviours” of the residents who had dementia. Senior staff appeared to be oblivious to their contribution to the culture of care as in the body of work by Cohen-Mansfield (2005) that discussed “challenging behaviour” as a response to lack of validation and unmet needs. For their part, direct care staff intimated that their perceived resistance and unwillingness to ‘comply’ was simply the result of the lack of recognition for a job well done, the prospect of denigration when they ‘failed’ a task, and feelings of being undervalued: [W]e’re nothing around here. … [W]e’re expected just to do the work, management [the RNs] aren’t interested in anything we have to say … and if we do it never gets included in their notes and they would never tell us we’ve done a good job.

[W]e’ve tried talking to the DON [Director of Nursing] about the lack of staff and the uneven workload; she told us to get over it, that we should work smarter. We still have to do everything, afternoon shift have it easy and get annoyed if we leave any showers for them to do. …

Only if staff members feel valued can they in turn value those they care for (Brooker 2007). If they are to confer recognition, trust and respect in their work with people with dementia, then their workplace relationships—which include peers, senior staff and management as well as residents—must replicate this experience for them. In the event that the absence of this experience is a precipitator for counselling, then the therapist may be required to create that experience in the therapeutic setting.

Though issues around quality and quantity of dementia education for residential care staff do exist, senior staff and management tend to be conspicuous by their absence from these training sessions. In their defence, they are often used to backfill shifts for other staff who are attending education. Nonetheless, attendees at such training continuously complain that when they endeavour to implement their new knowledge and skills, they are (continued on Page 33)

November 2012

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In the Therapy Room

You–Me Stuff I’m not a big fan of technical language.

I could have called this article ‘The Real Relationship’ (with thanks to Charles J. Gelso) or ‘PhenomenologicalIntersubjective Perspectives on the Therapeutic Alliance’.

For me, however, it will always be ‘You-Me Stuff’. (Other technical terms I use at times are: God Stuff, Body Stuff and Shame Stuff. I’ve never resorted to ‘stuff it!’, but I must admit there are days…)

Let’s get back to you and me.

We’re sitting in a therapeutic space. Perhaps you are my client, or I am yours. Maybe you have come to me for supervision. The ‘space’ could be my counselling room, or Skype or the phone, but we are both there, we have a contract, and we are in the process of working together.

simplicity I’ve decided you are my client in this instance but it could have gone either way), I realise I enjoy you, and I suspect you enjoy me. The evidence of the strength of our connection is in the new places you are exploring, and the risks you are taking as you work towards change. It is also evident in the energy between us and the level of openness I feel to being available, fully present and self-aware as well as deeply genuine in our work.

I’m not in love, and I’m not feeling sexually attracted to you. (I’m sure I could be—you being so irresistible an’ all— but I want to keep it simple here.)

It’s just that it is ... well ... humming along.

(Whew! It’s sooo good when it’s good!)

By the end of the first session, it is clear that we have clicked, somehow. (This is not a ‘stuff it’ day!) We both sense the resonance between us. By the third session, we separately come to realise that we have a great working alliance: we’re on the same page and are both looking forward to our meetings together. As the therapist (for the sake of

We feel bonded in some way, and there is mutual respect and warmth in our interactions. Not only that, but our working alliance was well established at the beginning.

The contract was clear, and we both rolled up our sleeves from day one. Sometimes we go off track, but basically we are both committed to the work. Good foundations have been laid.

The above scenario is an example of the establishment of a good, strong relationship between client and counsellor/ therapist. This relational or bonding (attachment) aspect of the therapeutic work is sometimes seen as separate from—and needed in addition to—the working alliance, and some believe that when these come together in the therapeutic space, the best outcomes are achieved (Gelso 2011, Frank 2005).

That is, not only do we strive to use the best tools possible, engage clients well and establish clarity and motivation for the tasks of counselling, we also need to give attention to who we are, and how our selves are connecting in the here-and-now relationship with the client. Some theorists talk about presence, mindfulness, self awareness, deep congruence, being in the present moment, or participating in an ‘I-Thou’ relationship.

Most who write about this include elements of mutuality, self disclosure, immediacy and availability of our ‘self or selves’.

I need to add that this is not the whole story of what we do, but many would argue that it is foundational. Once we move into this way of working, it requires courage to stay with the moments when the relationship is salient, overt or explicit. Sometimes I catch myself pausing before I breathe into the moments and allow them to take the session where they will. And sometimes I miss the wave.

A relational approach requires an awareness of the reciprocity of the relationship, despite the focus being on the client’s needs and issues. Relationally, we are equals in this framework. We are different, but equal. In terms of the big picture, we are both sitting at the feet of Life; we are both students/ travellers/ wounded human beings. We approach the tasks and the relational aspects of our work as wounded healers, and we are open to learning, just as our clients are asked to be open to learning and growing. Speaking about what he called the “real” relationship, Gelso writes:

Consider qualities such as liking-disliking, caring-not caring, respecting-disrespecting, and valuing-devaluing as they might exist on a continuum. Generally speaking, the more positive the participants are towards one another .... the more effective will be the treatment. (Gelso 2011:62) and Although a competent therapist will likely work competently with patients in general, I believe we work more effectively with those patients to whom we “take”, who seem to grasp who we are personally, and who respond to us in genuinely human ways. Thus, a strong real relationship enhances both the therapist’s and the patient’s functioning in the work, and thus it facilitates better treatment outcomes (Gelso 2011:67-68).

Gelso is making explicit some elements of the work that have intrigued me for some time. Some clients and I work together really well; we are both focussed and have a good working bond.

It’s as if we are colleagues with a good working relationship engaged in a common task. With other clients, that is there, but there is something extra. We click, or connect. Our sentences, thoughts or even our silences leapfrog over each other, or the work ‘sings’. We are connected to each other as human beings, and that makes a difference.

It’s not comfortable for me to name this. Somehow it seems unforgiveable or disloyal to some of my clients. Yet it does not mean that I am less committed to the work or even less effective: it’s just that the something extra seems to make the work zing.

We dance better, not treading on each other’s toes, if you like.

Some of these ideas about mutuality and relationship are central to person-centred therapy, of course, and to the experiential therapies. Writers such as Carl Rogers, Les Greenberg and Fritz Perls all put the relationship and genuineness at the centre of the

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CQ: The CAPA Quarterly

Jewel Jones therapeutic endeavour. Existential approaches see ‘relatedness’ as central to the task of therapy. Ernesto Spinelli writes: In this sense, existential psychotherapy can be seen to be directed toward, and focused upon, not so much any individual who has been designated ‘the client’. Rather, its underpinning concerns rest predominantly upon relatedness as expressed between persons. … [E]xistential psychotherapy is as much ‘about’ the therapist as it may be ‘about’ the client. … [Therapy] centres itself upon that which emerges experientially between therapist and client ... (italics in original) (Spinelli 2007:76).

In an earlier book, Spinelli wrote: Existential-phenomenological theory argues that such encounters are occurring in an inter-subjective realm through which one’s experience of ‘being’ does not occur within each participant but, rather, is co-constituted between them. It is this ‘middle ground’ or ‘space’ between the engaging beings, which allows an accepting dialogue to occur (italics in original) (Spinelli, 1994:133).

These ideas take the whole ‘You-Me Stuff’ to another level.

We are creating each other as we work! That is humbling.

Exciting. More than that, there is a third reality in the room: the space between us. It is not a vacuum, but rather a space filled with possibility and energy contributed by both of us.

Neither of us will ever be the same after we open ourselves to this third reality. Neither of us owns it or has control of it. Both of us are its servants and its creators. It is not really an entity, yet naming it as a something can help make sense of it.

For me, the thing that stands out the most is the immediacy and reality of moments when the You-Me Stuff comes to the fore. Sometimes it is made explicit through words; at other times, it is left implicit. The relationship in these moments is the change agent, the opening to a new experience, or truth , or level of trust. It becomes figure rather than ground.

Daniel Stern, in The Present Moment in Psychotherapy and Everyday Life, examines in great detail the nuances and steps involved in intersubjective connecting. He argues strongly that these moments of relational depth or aliveness are what moves the therapy forward, and can become markers of significant change in the therapeutic process.

[T]he longer the therapist can stay with the present moment and explore it, the more different paths will open up. I suggest that there is great clinical value in a more lingering interest in the present moment. (Stern 2004:139) [I]n most psychodynamic treatments there is a rush toward meaning, leaving the present moment behind. We forget that there is a difference between meaning , in the sense of understanding enough to explain it, and experiencing something more and more deeply. (Stern 2004:140) Stern also argues that much of this relational/experiential work should remain implicit, rather than named or examined: Something is gained and something is lost when experience is put into words. The loss is of wholeness, felt truth, richness, and honesty. … Change can come about through shifts in implicit knowing (Stern 2004:144-145).

November 2012

Much of what he says relates to what I have learned to call ‘taking a client from their gut to their head’. It also brings focus to an imbalance of power in the moment when the therapist is no longer a participant but becomes the observer of the interaction.

It may feel safer to do that, but it is not necessarily more helpful.

We need to be brave enough to stay with our relational moments and not to say, “Oh look we’re having a moment!” or “Wow. Have you realised what this means?” That ends the moment. It cuts across the relational experience.

Sometimes, though, naming something in the here and now can deepen and extend the learning from the moment.

Gelso writes: The kind of response that embodies working with and through and with the real relationship has been termed therapist immediacy … metacommunication … and “talking in the here and now about the here and now”… (italics in original) (Gelso 2011:78).

This process of “talking in the here and now about the here and now” can deepen the relationship in the therapeutic space, and invite the client to explore her experience more fully. Of course such talking needs to be timely and appropriate to the client’s needs.

In any case, the writers here support using this relationship as a key factor in successful therapy: The more the therapist works with and through the real relationship, the more the patient is likely to respond to the person of the therapist and express him- or herself genuinely (Gelso 2011:79).

Yalom’s statement seems to be a good summary: Proper use of the here-and-now during therapy creates a safe laboratory, a comfortable arena in which patients can take risks, reveal their darkest and brightest selves, hear and accept feedback and—most important of all— experiment with personal change (Yalom 2008:223).

Good foundations were laid. Then we were able to use the present moment and—sometimes—immediacy about the process of our work together. This one element does not constitute the whole story, but it has been an important part of our journey together. You have surprised yourself at the new areas that you have been willing to explore, and I have been changed by you.

It’s been real.

References: Buber, M 1958 (2nd Ed), I and Thou, New York: Charles Scribner’s Sons Frank, KA 2005, ‘Toward a Conceptualisation of the Personal Relationship in Therapeutic Action: Beyond the “Real Relationship”’, Psychoanalytic Perspectives, 3: 15-56 Gelso, CJ 2011, The Real Relationship in Psychotherapy: The Hidden Foundation of Change, Washington, DC: American Psychological Association Spinelli, E 1994, Demystifying Therapy, London: Constable & Co ——— 2007, Practising Existential Psychotherapy: The Relational World, London: Sage Stern, DN 2004, The Present Moment in Psychotherapy and Everyday Life, New York: WW Norton & Co. Yalom, ID 2008, Staring at The Sun: Overcoming the Dread of Death, Melbourne: Scribe Jewel Jones is a counsellor with over 14 years’ counselling experience in agencies and in private practice. She has a Masters in Adult Education and her private practice is increasingly concerned with having influence through training and supervision. www.jewel-jones.com.au, jeweljones@iprimus.com.au

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Professional Development

Communicative Musicality:

Gestural Narratives in the Therapeutic Relationship Review by Juliana Triml

Stephen Malloch, a counsellor and executive coach based in Mosman, Sydney, first trained in performance (violin) and musicology, completing an MMus at the University of London and a PhD at the University of Edinburgh. At Edinburgh, he began his collaboration with Prof Colwyn Trevarthen, researching and publishing on the psychology of mother-infant communication. Out of this work came his theory of Communicative Musicality, now used by a wide variety of authors and researchers. (For further information, see www.heartmind.com.au.)

After the CAPA AGM on 11 August 2012, Stephen Malloch gave a presentation about his findings on musicality and how it is reflected in a therapeutic practice.

It is the nature of a therapeutic relationship that makes an impact on the outcome. This relationship is based on alliance, empathy, collaboration and positive regard.

What happens when a positive alliance is formulated?

Stephen gave us an example of how it is practiced in Infant Intensive Care Unit, where infants receive a vocal stimulation by a therapist. In this audiovisual recording, the musicality comes from the therapist in the form of simple vocal sounds of varying pitches, accompanied by congruent facial expression, engaging gazes and touching.

The infant responds with hand and legs movement in a contingency manner: “I respond to you as a human being to another being”.

We were then shown another example of an intense communication between a mother and a baby. As the mother was talking in an engaging, musical voice, her baby responded in the same vocal pitch level and rhythm within the responses. When analysed, the soothing voice was coordinated with the mother’s and baby’s movements.

Stephen posits that music actually comes from observing such interactions.

This was juxtaposed with another mother-baby interaction where the mother was suffering from depression. Her words 28

seem fast-flowing, forced, unpredictable and hyperactive.

The baby was responding with signs of discomfort and crying when a soothing and continuous connection seemed lacking.

Research shows that, in vitro, the foetus can already respond to a music style that is soothing and, later, that newborns seem to recognise it and respond accordingly to the music after it is born.

In a therapeutic relationship between the client and therapist, the pitch of the voice represents the inner theme and usually indicates any change in the feeling as the client describes it. As a musician and therapist, Stephen notices musicality (tone, pitch, speed, etc.) and how pacing and mirroring occurs within the client’s voice and body movement.

The second part of the presentation was interactive, and we formed small groups of about three, consisting of a therapist, client and observer. It was an exercise in awareness of how we manage ‘music and dance’ in therapy. This often becomes easier when we observe the musicality of the voice and place less focus on the content of the story. When groups were debriefed, participants observed that musicality of the voice congruently supported the narrative and any changes within the client.

This presentation was an invitation to us to become conscious of our own ‘musical performance’ while hearing that of our client at the same time. Usually the response we get ref lects the message we send (verbally and non-verbally), and we need to be aware of the musicality of our own message, although quite often other factors are attached to the ‘echo’ that may contribute to a more dramatic ‘musical performance’ within a dyadic relationship.

Juliana Triml is the CAPA NSW PD Coordinator. If you have any suggestions regarding future professional development events, please contact her at: pd@capa.asn.au

CQ: The CAPA Quarterly

CAPA NSW Professional Development Events CAPA NSW members must complete twenty hours of approved professional development each year. To help members meet this requirement, CAPA is hosting PDEs on the following dates: Saturday 14 November 2012 7.00 pm–9.00 pm PD hours: 2 Elisabeth Shaw

Exploring Ethical Practice

When there are, theoretically, so many rules to guide us, how does practice still get so complicated?

Drawing on research about ethics, transgressions, and all sorts of things in between, this will be a discussion to challenge your thinking about an area you probably feel is well resolved. For most practitioners, it is not about whether they are likely to commit a heinous boundary violation, but how to respond well to the ordinary, challenging moments in therapy.

We will look at how to think thoroughly and well about ethical practice, how to know your own mind, and how to work when all seems unclear.

Elisabeth Shaw is an individual, couple and family therapist, supervisor and trainer in private practice in Drummoyne, NSW. Previously a Manager & Director of Relationships Australia NSW, she has presented and published papers over many years focused on the couple bond, intimacy and sexuality, violence, working with men in therapy, ethical and legal issues in therapy and supervision, and other areas of supervision best practice. She is the co-editor (with Jim Crawley) of Couple Therapy in Australia; Issues Emerging from Practice (Psychoz Publications, 2007).

Elisabeth has considerable experience as a trainer of clinical practitioners, and supervises and consults extensively with individuals and teams, from nursing and welfare to psychotherapy and the corporate sector, responding to clients with very diverse presenting problems and needs. She is Chair of the PACFA Ethics Committee, and writes a regular column for Psychotherapy in Australia on ethical issues in practice entitled ‘Sacred Cows and Sleeping Dogs’. She has completed a book called Ethical Maturity in the Helping Professions: Making Difficult Work and Life Decisions (2012) with Michael Carroll.

Tuesday 12 March 2013 7.00–9.00 pm PD hours: 2 Leon Cowen

The Remarkable Marriage of Hypnosis and Psychotherapy

What underpins all aspects of hypnosis and clinical hypnotherapy to make it such a growing therapy in the minds of our clients? Hypnosis is not magical but it can look like it. Some of the things hypnosis can achieve are truly remarkable. This workshop will help you understand how hypnosis works, and you’ll learn some pre-hypnotic techniques that reflect the client’s responsiveness to the hypnotic state, the foundation on which all hypnosis and clinical hypnotherapy is based and how it can complement the practice of counselling/psychotherapy.

Leon Cowen has been a clinical hypnotherapist for 37 years and is at the forefront of clinical hypnotherapy and clinical hypnotherapy training. He is Director of Australian College of Hypnotherapy in Northern Sydney. He has been accepted as a PhD Candidate by the University of Western Sydney, which gives some evidence about acceptance of hypnosis.

Wednesday 20 May 2013 7.00–9.00 pm PD hours: 2 Kevin Keith

How Can Attachment Theory ‘Inform’ My Practice?

Attachment Theory has in recent years begun to importantly inform counselling and psychotherapy. These enhancements do not represent another modality but rather provide a framework for understanding emotional development and change with our clients. This workshop combines current theory and research with practical exercises to enhance our capacities for effective assessment, goal setting and work with our clients.

Kevin Keith is a Counsellor, Psychotherapist and Supervisor. He is a Clinical Member CAPA NSW/PACFA and a lecturer in JNI’s Masters Program. He is also a PhD candidate, University of Sydney, Faculty of Science (History and Philosophy of Science Unit) with research interests in Attachment Theory.

Bookings: (02) 9235 1500 or office@capa.asn.au Please book as soon as possible. Spaces are limited due to Occupational Health and Safety requirements.

Cost: Free for CAPA members. $30 for non-members Venue: Crows Nest Centre, 2 Ernest Place, Crows Nest, Sydney (unless otherwise stated)

If you have any suggestions for future PDEs, contact PD Coordinator, Juliana Triml, on pd@capa.asn.au. CAPA is also exploring more options for members in rural and regional areas. Please email the Regional and Rural Committee with your suggestions regional@capa.asn.au.

November 2012

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Features (continued)

missing Queen Street, Woollahra, thin woman in plaid slacks holding tight her empty black handbag, plastic wristband identification Elizabeth Bay retirement home. bus door opens with a hiss, where do you want to go, luv? silence, foggy absence wherein to think, all erased. squiggles swim before the eyes unfamiliar names, unknown numbers. who am I? where am I? what must I do? questions futile as search for forgotten dreams.

Take you up to St Vincent’s, sit down luv, sit.

Holocaust survivor? another Iron Lady, with dementia slipping out for milk? leaning forward eager to depart – Zen present in the eternal moment, lost her Way. absent in our lives, imprisoned for own protection. three men in blue security uniforms meet the bus at Circular Quay. we will take you back all the way home sweetheart in a car. © jenni nixon

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Sometimes I don’t know where my wife is and I feel very inadequate.

I don’t have the resources to go out alone and be safe due to the fact that I don’t have immediate and independent transport. I lost my driving licence (November 2009) and have lost all skills in that department. I feel trapped and claustrophobic, which is the single most difficult thing, other than not being able to relate to Jenny.

Communication is key. When I am out of sorts, the obvious thing to do is sit down and talk about it, but when the situation is hot, it doesn’t always work that way. Frequently, I feel upset but can’t remember why. I feel frustrated, but it is hard to talk about my feelings when I don’t know why I feel them. I think one recurrent issue is that I keep trying to do things that I can’t do. It is probably better to let it be until someone else can sort out the task or implement. Jenny reminds me of what has happened so we can talk about it. Sometimes I remember then and can sort through my feelings.

CQ: How has the disease affected your relationship with your wife?

NH: Our relationship is complex. There is obviously a shift in the relationship. There is no way there could not be. I can’t compartmentalise it. I have lost the ability to contribute to our life together in many ways. The sickness called Alzheimer’s Disease has allowed Jenny and me to explore our relationship more fully than the relationship which previously existed.

The couple in relationship can, if they choose, explore each other’s feelings.

Talking about our feelings and how we are managing my decline helps us both. I tell her, “If you weren’t here, I wouldn’t be here.”

Recently, Jenny and I went away for a couple of days and experienced magnificent waterfalls and bushwalks. It was rustic and beautiful. We wandered into a small church. It was quiet and peaceful. Being away from the city and close to nature helps us be close to each other in our relationship. Simply being together is important and good.

The effect on our sexual life is part of it. Sexuality is a big part of my being, despite the fact that I am dysfunctional. My whole experience of sexuality is now different. Even at the level of conversation; we often had important conversations in bed. Jenny now leads our sexual activities.

A major shift in our relationship has resulted from the fact that Jenny has finished working and spends more time at home. We live more slowly now, and there is more time and thoughtfulness to me in trying to dialogue. We get out and about a lot now, and that is a big thing for me. Sometimes we meet with friends. Sometimes we simply sit around and read and listen to music and are quite happy to sit side by side and do such things. She gives me guidance and spiritual support. I am capable of limited responses but am a moral support to her. I love Jenny!

CQ: Do you know what to expect?

NH: I experienced my mother’s slow dying from dementia, hence I do have awareness of what this disease does, progressively. My siblings were involved in that process, too, and those who lived nearer to my mum shared with me the very harsh and debilitating realities of her dementia.

Check out the PACFA website at

www.pacfa.org.au for an update on all the current events

CQ: Do you know what will happen to you?

NH: I have no fear of dying. I don’t dread the future. I have a sense of going slowly into the darkness of dementia. I have a sense that what is now gradually creeping up on me will overtake me. The poet, Mr Yeats wrote: Cast a cold Eye On Life, on Death.

Horseman, pass by!

Yeats, WB 1939, ‘Under Ben Bulben’. (One of his final poems, the last three lines of which, at his command, are his epitaph.)

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gliosis in the paraventricular and periaqueductal grey matter regions of the brain. Converging evidence now points to the degeneration of the mammillary bodies, the mammillothalamic tract, and the anterior thalamus in the genesis of memory dysfunction in KS (Kopelman et al. 2009). The most profound cognitive complaint pertains to the gross disturbance in memory for incidents and events from one’s past, often extending back 20–30 years. As with Alzheimer’s disease, earlier memories tend to be better preserved than more recent events, and individuals can be upset by reminders that a loved one has died, or that they are in fact divorced. Often the individual will confabulate—produce false memories—as they attempt to fill in the blanks in their memory. Given the early onset of KS, dementia services are typically not equipped to deal with such individuals, who are physically more active, prone to agitation, disinhibition, delusional experiences, and aggression (Kopelman et al. 2009). Longitudinal studies have demonstrated partial recovery from KS in patients treated with high doses of parenteral B vitamins; these are expected to have a normal life expectancy, particularly if the individual remains abstinent. As such, alcohol-related dementia is often referred to as static.

Conclusion Currently no disease-specific treatments exist for dementia, most interventions remaining largely supportive. A multidisciplinary approach is therefore required, aimed at lessening the effect of distressing symptoms for both the

November 2012

individual and their caregivers. Increased knowledge regarding the cognitive and behavioural features of each dementia type is central to this process, enabling caregivers to anticipate and respond in a sensitive and empathic manner to challenges faced by the individual.

References Access Economics 2003, The Dementia Epidemic: Economic Impact and Positive Solutions for Australia, Canberra: Alzheimers Australia Ha, AD and Fung, VSC 2012, ‘Huntington’s Disease’, Current Opinion in Neurology 25: 491-498 Hodges, JR, Gregory, C, McKinnon, C, Kelso, W, Mioshi, E and Piguet, O 2009, Younger Onset Dementia: A Practical Guide, Sydney: Alzheimers Australia and Frontier Kipps, CM, Knibb, JA and Hodges, JR 2007, ‘Clinical Presentations of Frontotemporal Dementia’, in JR Hodges (Ed.), Frontotemporal Dementia Syndromes, New York: Cambridge University Press Kopelman, MD, Thomson, AD, Guerrini I and Marshall, EJ 2009, ‘The Korsakoff Syndrome: Clinical Aspects, Psychology, and Treatment’, Alcohol and Alcoholism 44(2): 148-154 Piguet, O, Hornberger, M, Mioshi, E and Hodges, JR 2011, ‘Behavioural-Variant Frontotemporal Dementia: Diagnosis, Clinical Staging, and Management’, Lancet Neurology 10(2): 162-172 Sperling, RA, Dickerson, BC, Pihlajamaki, M, Vannini, P, LaViolette, PS, Vitolo, OV, Hedden, T, Becker, JA, Rentz, DM, Selkoe, DJ and Johnson, KA 2010, ‘Functional Alterations in Memory Networks in Early Alzheimer’s Disease’, Neuromolecular Medicine 12(1): 27-43

Muireann Irish, PhD is a Senior postdoctoral research officer at Neuroscience Research Australia, Sydney, a Conjoint Lecturer in the School of Medical Sciences at the University of NSW, and an Associate Investigator of the Australian Research Council Centre of Excellence in Cognition and its Disorders. Muireann’s research interests include how memory for the past, and the ability to imagine the future, are affected in dementia syndromes with a view to identifying the brain regions critical for these complex cognitive abilities. m.irish@neura.edu.au

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younger-onset-specific programs and support groups, including a ‘young peoples’ group for adult children of people with YOD. The Living with Memory Loss Program Among the profound losses experienced by people living with YOD and their families is the loss of social relationships and friendships. Evidence suggests that support from friends and neighbours decreases as the dementia progresses, resulting in increasing isolation of people with dementia and their carers (Haase, 2005:36). Therefore, the development of a support network becomes a critical issue for families. The peer support element of early intervention programs and support groups is very important. It is often not until people are able to meet with others facing a similar situation that they are able to recognise and express how the diagnosis has impacted them (Alzheimer’s Australia 2007:23).

Alzheimer’s Australia’s Living with Memory Loss program (LWML) is an early intervention, psycho-educational program that aims to provide people in the early stage of dementia and their family carers with information, education, counselling and support through a group setting. The LWML program has been independently evaluated, and both people with dementia and their carers reported the information, education and support garnered through the program as helpful. People with a diagnosis described being less depressed on the Leeds Depression Scale at both 3 month and 15 month intervals post-program as compared to before attending the program (Bird et al. 2005:19-20).

The program has been adapted to cater to the needs of younger people. Outcomes of the program, particularly for the person with the diagnosis, include but are not limited to: a reduction in feelings of isolation, distress and depression; an increase in self esteem and feelings of support; an increase in knowledge of strategies for living with and management of dementia; an increase in positive perceptions of living with dementia; a reduced sense of stigma; and, importantly, provision of a safe place for those with YOD and their carers to share their stories.

It is through the process of mutual aid and the sharing of experiences that the LWML program aims to reduce the incidence and impact of carer stress and burden. It has the potential to provide carers with the support and guidance needed to fulfil a most demanding and unrelenting role.

Moreover, it has been Alzheimer’s Australia NSW ’s experience that participants in the younger onset LWML program, younger onset carer support groups, and young people’s group are deeply grateful for the opportunity to meet others who are facing the challenges of living with dementia at a younger age.

Carers who participated in the research project spoke very highly of the younger onset LWML program: In terms of receiving support … it’s wonderful, absolutely wonderful … that’s been an amazing help along the way … being inspired by people who care so lovingly.

Conclusion People with a diagnosis of younger onset dementia can benefit from programs that provide emotional support as well as opportunities to maximise their remaining skills and abilities. Moreover, carers need support and guidance to fulfil a most demanding and unrelenting role. Family 32

structure, employment, financial stability and friendships are all impacted by a diagnosis of younger onset dementia.

Disenfranchisement, stigma, grief, stress and depression are common features of everyday living for many individuals and families. However, early diagnosis, early intervention and empathic service supports can serve to ameliorate some of the more distressing aspects of receiving and living with a diagnosis of younger onset dementia. Having the opportunity to both give and receive support for this most difficult of illnesses may enable better health outcomes for this vulnerable population..

References Alzheimer’s Australia NSW 2010, Addressing the Stigma Associated with Dementia, Discussion Paper 2, Sydney: Alzheimer’s Australia NSW Alzheimer’s Australia 2007, Exploring the Needs of Younger People with Dementia in Australia, Sydney: Alzheimer’s Australia NSW Bird, M, Caldwell, T, Jerome Maller, J and A Korten 2005, Alzheimer’s Australia Early Stage Dementia Support and Respite Project. Final Report on the National Evaluation Brodaty, H and Green, A 2002, “Who Cares for the Carer? The Often Forgotten Patient, Australian Family Physician 31(9): 1-4 Brown, J, Sait, K, Meltzer, A, Fisher, K and R Faine 2012, Service and Support Requirements of People with YOD and their Families, Sydney: Department of Family and Community Services NSW, Ageing, Disability and Home Care Davies, H, Robinson, D and Bevill L 1995, Supportive Group Experience for Patients with Early-Stage Alzheimer’s Disease, Journal American Geriatric Society 43 (9): 1068-69 Deloitte Access Economics 2011, Dementia Across Australia: 2011-2050, Canberra: Alzheimer’s Australia Doka, KJ 2006, “Caring for the Carer: The Lessons of Research, Grief Matters: The Australian Journal of Grief and Bereavement 9(1): 4-7 Frank, JB 2008, ‘Evidence for Grief as the Major Barrier Faced by Alzheimer’s Caregivers: A Qualitative Analysis, American Journal of Alzheimer’s Disease & Other Dementias 22(6): 516-526 Haase, T 2005, Early Onset Dementia: The Needs of Younger People with Dementia in Ireland, Dublin: The Alzheimer Society of Ireland Lavretsky, H 2005, ‘Stress and Depression in Informal Family Caregivers of Patients with Alzheimer’s Disease’, Aging Health 1(1): 117-133 Mocellin, R, Scholes, A and D Velakoulis 2008, Quality Dementia Care: Understanding YOD, Melbourne Neuropsychiatry Centre Royal Melbourne Hospital Noyes, BB, Hill, RD, Hicken, BL, Luptak, M, Rupper, R, Dailey, NK and Bair BD 2009, ‘The Role of Grief in Dementia Caregiving’, American Journal of Alzheimer’s Disease and Other Dementias 25(1): 9-17 Thompson, D 2011, Service and Support Requirements for People with YOD and Their Families, Social Policy Research Centre, University of New South Wales Workman, B, Dickson, F and S Green 2010, ‘Early Dementia: Optimal Management in General Practice, Australia Family Physician 39(10): 722-726

Acknowledgments The authors acknowledge the Department of Family and Community Services NSW, Ageing, Disability and Home Care (ADHC) for funding the research project ‘Service and Support Requirements of People with YOD and their Families’. The authors also acknowledge the other members of the research team: Jo-Ann Brown and Robyn Faine (Alzheimer’s Australia NSW), Karen Fisher, Ariella Meltzer and Denise Thompson (Social Policy Research Centre, UNSW) and Angela Robinson (UnitingCare Ageing).

Kylie Sait, BSocSci (Hons), PhD Candidate, is the Research and Policy Officer, Alzheimer’s Australia NSW. She is a member of the research team for the Service and Support Requirements of People with Younger Onset Dementia and their Families project. Kylie is a passionate advocate for people with dementia and their carers. kylie.sait@alzheimers.org.au

Lyndell Huskins, BSocSci (SocWelf), DipCommSvcs (Aged Care), Cert IV Workplace Training & Assessment, GCMHP, is the Early Intervention Group Programs Coordinator, Alzheimer’s Australia NSW. Lyndell has extensive group work practice and has worked closely with people who have a diagnosis of Younger Onset Dementia and their carers for the last four years. She facilitates a number of ongoing support groups including a group for young people who have a parent with Younger Onset Dementia .

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often prevented from doing so or instructed not to bother and are faced with dilemmas similar to the one described below: [T]he best thing to do is not let the RN think you know too much about them [the residents]—otherwise you get done for wasting time with the residents—you know, spending time talking to them, trying to put into practice what you learned at training, when there’s ‘more important stuff to do’…

While one example does not a general case prove, this one demonstrates how staff can become conflicted in their roles and how their confidence can be undermined by the very people whose role it is to support them. The way in which they are treated often does more to devalue them than to uphold their personhood.

It is a small wonder that staff themselves do not value training and education and see it merely as management ‘ticking the accreditation box’ at their expense.

The focus thus far has been on direct care staff, but it is essential to acknowledge also the stress and conditions under which senior staff and management must perform. On a daily basis, they have their own basket of problems and issues that must be resolved amidst many and competing priorities. For most, their fiscal responsibilities appear to have the greatest priority; their focus is on acquiring monetary resources and maximising funding, via the Aged Care Funding Instrument, to meet minimum standards of basic care. High rates of absenteeism and staff turnover, which cause the need for overtime and backfill, create a fiscal burden and impact their ‘bottom line’, which is the subject of regular financial reporting to Boards of Directors, executive management or owners. At the same time, as more than one Director of Nursing confided in me, this staff group must also “bear the brunt of relative and staff complaints while ensuring beds remain filled and new admissions, deaths, outbreaks of gastro and administrative and accreditation requirements are all taken care of.” According to Brooker (2007), this cocktail of responsibilities “grinds leaders down over time” and “diminishes their personhood”, leaving them also feeling devalued. She sees this as problematic in the group generally responsible for setting the value base for the residential facility. In an environment where leaders feel devalued, it is difficult to envision the possibility of residents, let alone staff, receiving the unconditional positive regard (love) that Kitwood postulated as characterising the relationships in a person-centred setting.

The obvious outcome of recurring assaults on personhood and the persistent experience of being devalued is the presentation of a group of clients suffering, ostensibly, from issues such as low self-esteem, anxiety, stress and depression, embedded in an attitude of cynicism and resignation, which can play out in the workplace in the form of frequent sick leave or last-minute absenteeism, poor care delivery, proneness to accidents, and even resident abuse. Combine this mix with issues around interpersonal relationships based in cultural differences—staff member to staff member and resident to staff member—and inter-shift rivalries, physical and emotional exhaustion, and cumulative grief and loss, and it is apparent that the role of the therapist in facilitating the restoration of personhood will be not only invaluable but essential.

How will this be achieved in the therapeutic setting? Is there one modality that lends itself more than another to a successful outcome? My inclination is to say no. There is room for Solution Focused, ACT and Cognitive Behavioural Therapies to be used.

Certainly, in creating a space for self reflective practice that Kitwood November 2012

deemed essential to delivering person centred care (Loveday & Kitwood 1998)—and in the spirit of Rogerian client centred therapy—entering the frame of reference of the care worker and understanding the world from the care worker’s perspective in the context of dementia care will be central to working therapeutically.

However, it is useful for the therapist to be cognisant of The Senses Framework developed by Nolan in 1997 and elaborated by Nolan et al. in 2006. In this framework for practice, Nolan purported that aged care staff should work towards the creation of an environment in which older people experienced six senses: Sense of Security: to feel safe Sense of Belonging: to feel part of things Sense of Continuity: to experience links and connection Sense of Purpose: to have a goal(s) to aspire to Sense of Achievement: to make progress towards these goals Sense of Significance: to feel that you matter as a person.

Nolan believed this would create an environment that would not only enhance the quality of life of the elderly in care but would also simultaneously accord status and significance to this area of work. More than that, he held the view that staff must experience these senses for themselves, that they had the right to feel secure physically, emotionally and psychologically, that they should feel part of something bigger than themselves—for example, a care team in which their contribution is valued and acknowledged.

I believe that an onsite or visiting counsellor could replicate or create such an environment in the therapeutic setting, facilitating care workers’ reframing of their work as being significant and witnessing the restoration of these clients’ status and standing.

A likely outcome from the therapeutic intervention may be the formation of a foundation of resilience that will be brought to bear not only in the workplace but also in life itself.

References

Alzheimer’s Australia, Exploring Dementia and Stigma Beliefs. Position Paper No. 28, June 2012 Brooker, D 2007, Person-Centred Dementia Care: Making Services Better, London: Jessica Kingsley Publishers Cohen-Mansfield, J 2005, ‘Non-Pharmacological Interventions for Persons with Dementia’, Alzheimer’s Care Quarterly 6(2): 129-45 Evers, HK 1981(a) ‘Tender Loving Care? Patients and Nurses in Geriatric Wards’, in LA Copp (Ed.), Care of the Elderly, Edinburgh: Churchill Livingstone Innes, A, Macpherson, S and McCabe, L 2006, Promoting Person-Centred Care at the Frontline, York: Joseph Rowntree Foundation Kitwood, T 1997 Dementia Reconsidered: The Person Comes First, Buckingham: Open University Press Kitwood, T and Bredin, K 1992a, ‘Towards a Theory of Dementia Care: Personhood and Well-being’, Ageing and Society 12(3): 275 Loveday, B and Kitwood, T 1998, Improving Dementia Care: A Training Manual for Professional Development, London: Hawker Publications Lupinska, D 2009, Person-Centred Counselling for People with Dementia, London: Jessica Kingsley Publishers Mearns, D and Thorne, B 2007, Person-Centred Counselling in Action, Los Angeles: Sage Publications Morton, I 1999, Person-Centred Approaches to Dementia Care, Milton Keynes: Speechmark Publishing Morton, I 2000 ‘Just What is Person-Centred Dementia Care?’’ Journal of Dementia Care May/June 2000:28 Reed, K and Bond, S 1991, ‘Nurses Assessment of Elderly Patients in Hospital’, International Journal of Nursing Studies 28: 55-64 Nolan, MR 1997, Health and Social Care What the Future Holds for Nursing, Keynote Address at Third Royal College of Nursing Older Person European Conference and Exhibition, Harrogate Nolan, MR, Brown, J, Davies, S, Nolan, J and Keady, J 2006, The Senses Framework: Improving Care for Older People through a Relationship-Centred Approach, Getting Research into Practice (GRiP) Report No 2, Project Report, University of Sheffield

Georgene McNeil, BA (Psych) (Hons), Dip Counselling & Psychotherapy, Dip Relationship Counselling, Adv Dip Clinical Hypnotherapy, Dip Ed, Dementia Care Mapping, P3 Trainer is a Senior Educator and Behavioural Consultant for Alzheimer’s Australia, NSW. She has a specific interest in the psychosocial approach to dementia and the care of staff in the residential setting. She has worked with the University of Technology and the University of Sydney on a number of research projects based in the residential care setting where she has observed at first hand the complex nature of the care setting and its impact on staff.

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the women, who usually have responsibility for domestic caring duties (Boughtwood et al. 2011, Legge and Westbrook 1993, Berisic and Nesvadba 2008, Cultural & Indigenous Research Centre Australia 2008).

Persons born overseas are generally unfamiliar with the concept of care-giving, and do not identify as carers, seeing caring as part of their normal family roles, hence they do not recognise that services and support structures offered to carers in Australia apply to them (St George Migrant Resource Centre 2002, Boughtwood et al. 2011).

The aged care system in Australia is complex. For persons with poor English skills and poor knowledge of available services or the system, this is a formidable barrier to accessing those services. Carers of older persons from some cultures may feel an overwhelming sense of duty to provide support care and may, therefore, feel guilt, shame or inadequacy if seeking outside assistance. In addition, their families may expect problems to be dealt with inside the family unit and may pressure the carer not to seek help. Additionally, there may be cultural/community norms that make it unacceptable to seek social services (Dilworth-Anderson and Gibson 2002, St George Migrant Resource Centre 2002).

Issues which may face family carers of persons with dementia include: continual adjustment to the condition and the deteriorating symptoms depression and burden as a result of physical and psychological care needs conflict within families about the symptoms, care requirements and who provides care; this may include clashes between traditional expectations and realities in Australia feelings of guilt regarding the type and amount of care they provide difficulty negotiating the aged care system; receiving services that are not culturally sensitive exacerbation of pre-existing family conflicts having to act as cultural interpreters between aperson with dementia and medical and health workers.

Overseas research suggests that carer support is beneficial to persons from non-English-speaking backgrounds (Belle et al.

2006). Language- and culture-specific carer support groups are available in different parts of Australia, but more needs to be

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done to ensure systemic provision of such services to all who would benefit from them. It is the carers, the younger members of the family, who are more likely to present for counselling, and therapists can best serve them by becoming aware of the cultural and ethno-specific issues they face in this circumstance.

References Access Economics 2009, Keeping Dementia Front of Mind: Incidence and Prevalence 20092050, Canberra: Access Ecomomics Anderson, TM, Sachdev, PS, Brodaty, H, Trollor, JN and Andrews, G 2007, ‘Effects of Sociodemographic and Health Variables on Mini-Mental State Exam Scores in Older Australians’, American Journal of Geriatric Psychiatry 15: 467-476 Aranda, MP, Villa, VM, Trejo, L, Ramírez, R and Ranney, M 2003, ‘El Portal Latino Alzheimer’s Project: Model Program for Latino Caregivers of Alzheimer’s Disease-Affected People’, Social Work 48: 259-271 Australian Bureau of Statistics 2012, Cultural Diversity in Australia: Reflecting a Nation: Stories from the 2011 Census, 2012-2013 Canberra, ACT: Australian Bureau of Statistics Australian Institute of Health and Welfare 2011a, Aged Care Packages in the Community 2009-10: A Statistical Overview, Canberra, ACT: AIHW Australian Institute of Health and Welfare 2011b, Residential Aged Care in Australia 2009-10: A Statistical Overview, Canberra, ACT: AIHW Barberger-Gateau, P, Raffatain, C, Letenneur, L, Berr, C, Tzourio, C, Dartigues, JF and Alperovitch, A 2007, ‘Dietary Patterns and Risk of Dementia: The Three-City Cohort Study’, Neurology 69: 1921-1930 Basic, D, Khoo, A, Conforti, D, Rowland, J, Vrantsidis, F, Loguidice, D, Hill, K, Harry, J, Lucero, K and Prowse, R 2009, ‘Rowland Universal Dementia Assessment Scale, Mini-Mental State Examination and General Practitioner Assessment of Cognition in a Multicultural Cohort of Community-Dwelling Older Persons with Early Dementia’, Australian Psychologist 44: 40-53 Belle, SH, Burgio, L, Burns, R, Coon, D, Czaja, SJ, Gallagher-Thompson, D, Gitlin, LN, Klinger, J, Koepke, KM, Lee, C C, Martindale-Adams, J, Nichols, L, Sshulz, R, Stahl, S, Stevens, A, Winter, L. and Zhang, S 2006, ‘Enhancing the Quality of Life of Dementia Caregivers from Different Ethnic or Racial Groups: A Randomized, Controlled Trial’, Annals of Internal Medicine 145: 727-738 Berisic, M and Nesvadba, N 2008, Perceptions of Dementia in Ethnic Communities, Melbourne: Alzheimer’s Australia Victoria Borson, S, Scanlan, JM, Watanabe, J, Tu, SP and Lessig, M 2005, ‘Simplifying Detection of Cognitive Impairment: Comparison of the Mini-Cog and Mini-Mental State Examination in a Multiethnic Sample’, Journal of the American Geriatrics Society 53: 871-874 Boughtwood, D, Shanley, C, Adams, J, Santalucia, Y, Kyriazopoulos, H, Pond, D and Rowland, J 2011, ‘Culturally and Linguistically Diverse (CALD) Families Dealing with Dementia: An Examination of the Experiences and Perceptions of Multicultural Community Link Workers, Journal of Cross-Cultural Gerontology 26: 365-377 Brodaty, H, Green, A and Low, L-F 2005, ‘Family Carers for People with Dementia’, in J O’Brien, D Ames and A Burns (Eds) Dementia (3rd edn), London: Edward Arnold Chow, TW, Liu, CK, Fuh, JL, Leung, VPY, Tai, CT, Chen, LW, Wang, SJ, Chiu, HFK, Lam, LCW, Chen, Q L and Cummings, J L 2002, ‘Neuropsychiatric Symptoms of Alzheimer’s Disease Differ in Chinese and American Patients’, International Journal of Geriatric Psychiatry 17: 22-28 Cohen, CI, Hyland, K and Magai,C 1998a, ‘Depression Among African American Nursing Home Patients with Dementia’, American Journal of Geriatric Psychiatry 6: 162-175 Cohen, CI, Hyland, K and Magai,C 1998b, ‘Interracial and Intraracial Differences in Neuropsychiatric Symptoms, Sociodemography, and Treatment Among Nursing Home Patients with Dementia’, Gerontologist 38: 353-361 Cultural & Indigenous Research Centre Australia 2008, CALD Dementia Strategic Model: Literature Review, Report, Model, Sydney: NSW Department of Family & Community Services/Ageing, Disability & Home Care Dilworth-Anderson, P and Gibson, BE 2002, ‘The Cultural Influence of Values, Norms, Meanings, and Perceptions in Understanding Dementia in Ethnic Minorities’, Alzheimer Disease & Associated Disorders 16: S56-S63 Escobar, JI, Burnam, A and Karno, M 1986, ‘Use of the Mini-Mental State Examination (MMSE) in a Community Population of Mixed Ethnicity: Cultural and Linguistic Artifacts’, Journal of Nervous and Mental Disease 174: 607-614

CQ: The CAPA Quarterly

Espino, DV, Lichtenstein, MJ, Palmer, RF and Hszuda, HP 2001, ‘Ethnic Differences in Mini-Mental State Examination (MMSE) Scores: Where You Live Makes a Difference’, Journal of the American Geriatrics Society 49: 538-548 Farias, ST, Mungas, D, Hinton, L and Haan, M 2011, ‘Demographic, Neuropsychological, and Functional Predictors of Rate of Longitudinal Cognitive Decline in Hispanic Older Adults’, American Journal of Geriatric Psychiatry 19: 440-450 Ferri, CP, Prince, M, Brayne, C, Brodaty, H, Fratiglioni, L, Ganguli, M, Hall, K, Hasegawa, K, Hendrie, H and Huang, Y 2005, ‘Global Prevalence of Dementia: A Delphi Consensus Study’, The Lancet 366: 2112-2117 Folnegovic-Smalc, V, Folnegovic, Z, Uzun, S, Vilibic, M, Dujmic, S and Makaric, G 1997, ‘Psychotrauma Related to War and Exile as a Risk Factor for the Development of Dementia of Alzheimer’s Type in Refugees’, Croatian Medical Journal 38: 273-276 Folstein, MF, Folstein, SE and McHugh, PR 1975, ‘“Mini Mental State”: A Practical Method for Grading the Cognitive State of Patients for the Clinician’, Journal of Psychiatric Research 12: 189-198 Gonçales, DC, Arnold, E, Appadurai, K and Byrne, G J 2011, ‘Case Finding in Dementia: Comparative Utility of Three Brief Instruments in the Memory Clinic Setting’, International Psychogeriatrics 23: 788-796 Hou, CE, Yaffe, K, Perez-Stable, EJ and Miller, BL 2006, ‘Frequency of Dementia Etiologies in Four Ethnic Groups’, Dementia and Geriatric Cognitive Disorders 22: 42-47 Kalaria, RN, Maestre, G E, Arizaga, R, Friedland, RP, Galasko, D, Hall, K, Luchsinger, JA, Ogunniyi, A, Perry, EK, Potocnik, F, Prince, M, Stewart, R, Wimo, A, Zhang, Z-X and Antuono, P 2008, ‘Alzheimer’s Disease and Vascular Dementia in Developing Countries: Prevalence, Management, and Risk Factors’, The Lancet Neurology 7: 812-826 Kouris-Blazos, A, Gnardellis, C, Wahlqvist, ML, Trichopoulos, D, Lukito, W and Trichopoulos, A 1999, ‘Are the Advantages of the Mediterranean Diet Transferable to Other Populations? A Cohort Study in Melbourne, Australia’, British Journal of Nutrition 82: 57-61 Legge, I and Westbrook, M 1993, ‘Intergenerational Help Giving and Receiving: Attitudes of Six Australian Communities’, Australasian Journal on Ageing 12: 14-20 Lobo, A, Launer, LJ, Fratigioni, L, Andersen, K, Di Carlo, A, Breteler, MM, Copeland, JR, Dartigues, JF, Jagger, C, Martinez-Lage, J, Soininen, H, Hofman, A 2000, ‘Prevalence of Dementia and Major Subtypes in Europe: A Collaborative Study of Population-Based Cohorts. Neurologic Diseases In The Elderly Research Group’, Neurology 54: S4-S9 Loguidice, D, Hassett, A, Cook, R, Flicker, L and Ames, D 2001, ‘Equity of Access to a Memory Clinic in Melbourne? Non-English Speaking Background Attenders are More Severely Demented and Have Increased Rates of Psychiatric Disorders’, International Journal of Geriatric Psychiatry 16: 327-334 Low, L-F, Anstey, KJ, Lackersteen, SM, Camit, M, Harrison, F, Draper, B and Brodaty, H 2010, ‘Recognition, Attitudes and Causal Beliefs Regarding Dementia of Italian, Greek and Chinese Australians’, Dementia and Geriatric Cognitive Disorders 30: 499-508 Low, L-F, Anstey, KJ, Lackersteen, SMP and Camit, M 2011, ‘Help-Seeking and Service Use for Dementia in Italian, Greek and Chinese Australians’, Aging and Mental Health 15: 397-404 Low, L-F, Harrison, F, Kochan, NA, Draper, B, Slavin, MJ, Reppermund, S, Sachdev, PS and Brodaty, H 2012, ‘Can Mild Cognitive Impairment Be Accurately Diagnosed in English Speakers from Linguistic Minorities? Results from the Sydney Memory and Ageing Study’, American Journal of Geriatric Psychiatry [ePub ahead of print 18 January 2012: http://www.ncbi.nlm.nih.gov/pubmed/22261551] Mendez, MF, Perryman, KM, Ponton, MO and Cummings, JL 1999, ‘Bilingualism and Dementia’, The Journal of Neuropsychiatry & Clinical Neurosciences 11: 411-412 Mintzer, JE, Nietert, P, Costa, K and Waid, LR 1996, ‘Cross-Cultural Perspective: Agitation in Dementia Patients in the United States’, International Psychogeriatrics 8: 473-478 NSW Government Community Relations Commission 2012, ‘Terminology and Concepts,’ [Online], Sydney, NSW: NSW Government. Available: http://www.crc.nsw.gov.au/ multicultural_policies_and_services_program_formally_eaps/terminology [Accessed June 27th 2012] Prince, M 2007, ‘Epidemiology of Dementia, Psychiatry 6: 488-490 Qureshi, SU, Kimbrell, T, Pyne, JM, Magruder, KM, Hudson, TJ, Petersen, NJ, YU, HJ, Schulz, PE and Kunik, ME 2010, ‘Greater Prevalence and Incidence of Dementia in Older Veterans With Posttraumatic Stress Disorder’, Journal of the American Geriatrics Society 58: 1627-1633 Radermacher, H, Feldman, S and Browning, C 2009, ‘Mainstream Versus Ethno-Specific Community Aged Care Services: It’s Not An Either Or’, Australasian Journal on Ageing 28: 58-63 Rodriguez, JJL, Ferri, CP, Acosta, D, Guerra, M, Huang, Y, Jacob, KS, Krishnamoorthy, ES, Salas, A, Sosa, AL, Acosta, I, Dewey, ME, Gaona, C, Jotheeswaran, AT, Li, S,

Rodriguez, D, Rodriguez, G, Kumar, PS, Valhuerida, A and Prince, M 2008, ‘Prevalence of Dementia in Latin America, India, and China: A Population-Based Cross-Sectional Survey, The Lancet 372: 464-474 Rowland, JT, Basic, D, Storey, JE and Conforti, DA 2006, ‘The Rowland Universal Dementia Assessment Scale (RUDAS) and the Folstein MMSE in a Multicultural Cohort of Elderly Persons’, International Psychogeriatrics 18: 111-20 Runci, S, O’Connor, DW and Redman, JR 2005a, ‘Language Needs and Service Provision for Older Persons from Culturally and Linguistically Diverse Backgrounds in South-East Melbourne Residential Care Facilities’, Australasian Journal on Ageing 24: 157-161 Runci, SJ, Redman , JR and O’Connor, DW 2005b, ‘Language Use of Older ItalianBackground Persons with Dementia in Mainstream and Ethno-Specific Residential Care’, International Psychogeriatrics 17: 699-708 Schofiels, H, Murphy, B, Herrman, HE, Bloch, S and Singh, BS 1998, ‘Carers of People Aged Over 50 with Physical Impairment, Memory Loss and Dementia: A Comparative Study’, Ageing and Society 18: 355-369 Simpao, MP, Espino, DV, Palmer, RF, Lichtenstein, MJ and Hazuda, HP 2005, ‘Association Between Acculturation and Structural Assimilation and Mini-Mental State ExaminationAssessed Cognitive Impairment in Older Mexican Americans: Findings from the San Antonio Longitudinal Study of Aging’, Journal of the American Geriatrics Society 53: 1234-1239 St George Migrant Resource Centre 2002, ‘“Nobody Cared About Me Before…” Report’, Consultation for “Carers” of Culturally and Linguistically Diverse Backgrounds, September 2002, Marana Hall, Hurstville, Bexley: St George Migrant Resource Centre Storey, JE, Rowland, JT, Basic, D, Confori, DA and Dickson, HG 2004, ‘The Rowland Universal Dementia Assessment Scale (RUDAS): A Multicultural Cognitive Assessment Scale’, International Psychogeriatrics 16: 13-31 Strickland, TL, Longobardi, PG, Alperson, BL and Andre, K 2005, ‘Mini-Mental State and Cognistat Performance in an Older African American Sample’, Clinical Neuropsychologist 19: 87-98 Valenzuela, MJ and Sachdev, P 2006, ‘Brain Reserve and Dementia: A Systematic Review’, Psychological Medicine 36: 441-54 Wu, HZY, Low, L-F, Xiao, S and Brodaty, H 2009a, ‘Differences in Psychological Morbidity Among Australian and Chinese Caregivers of Persons with Dementia in Residential Care’, International Journal of Geriatric Psychiatry 24: 1343-1351 Wu, HZY, Low, L-F, Xiao, S and Brodaty, H 2009b, ‘A Pilot Study of Differences in Behavioral and Psychological Symptoms of Dementia in Nursing Home Residents in Sydney and Shanghai’, International Psychogeriatrics 21: 476-484 Yaffe, K, Vittinghoff, E, Lindquist, K, Barnes, D, Covinsky, KE, Neylan, T, Kluse, M and Marmar, C 2010, ‘Posttraumatic Stress Disorder and Risk of Dementia Among US Veterans’, Archives of General Psychiatry 67: 608-613

Lee-Fay Low, BSc (Hons), PhD, is Research Fellow at the Dementia Collaborative Research Centre – Assessment and Better Care (DCRCABC), University of New South Wales. She leads the research into community care at the DCRC-ABC. Her other areas of research expertise include dementia literacy, dementia in persons from culturally and linguistically diverse backgrounds, non-pharmacological interventions in residential aged care and advanced research methodology including epidemiology, systematic reviews and clustered randomised trials. She is a Registered Psychologist with experience in providing case management for clients with dementia in community care.

Fleur Harrison, BA, GDipSc (Psych), is Research Assistant at the DCRC-ABC, University of New South Wales, and current candidate for the Master of Psychology (Health) at Monash University. Her areas of interest include chronic disease self-management and psychoneuroimmunology. She is a Provisional Psychologist with experience in providing biopsychosocial assessments and interventions for older persons with severely challenging behaviours associated with dementia and/or mental illness.

The Garden Gate:

An Inner Journey

An unlikely seeker’s encounter with a spiritual mentor who guides him through life-changing openings of awareness.

A new novel by Laura Daniel Available from www.mistymoonmountain.com November 2012

35

Noticeboard

Calls for Contributions August 2013 – Dreams

The rich world of dreams and the unconscious, while often immensely healing and a great source of individual creativity, can at times and for some be both overwhelming and terrifying. Seventy-three years on from the death of Sigmund Freud and half a century after the death of Carl Jung, how has our thinking evolved around the use and importance of dreams in the therapeutic context? How does a therapist best harness the wealth of insight offered by a client’s dream world and impart skills to the client to encourage greater selfawareness, healing and understanding? Share your perspective and experience by contributing to the August 2013 issue of CQ. Peer-reviewed papers due by: 1 February

Non-peer-reviewed due by: 1 May

November 2013 – The Profession

Every therapist and counsellor faces common challenges and issues in their practice that are specific to the profession. In this issue we invite you discuss the needs, challenges and issues therapists and counsellors face as normal hazards of the profession. How do we prevent burnout, find the time and discipline to ensure adequate supervision, maintain a steady client base while achieving a work-life balance, stay current and ensure that we are ‘good enough’? The November issue of CQ offers a forum for exploration of these and other questions about the personal side of being a therapist or counsellor. Step forward and have your say.

Peer-reviewed papers due by: 1 May

Non-peer-reviewed due by: 1 August

February 2014 – Open Forum

Do you have an insight to share about the practice of therapy, but haven’t been able to align it with any of the announced themes for CQ? Now we have an Open Forum each February so that articles on any aspect of therapeutic practice can be welcomed. Share your knowledge with your peers and open up discussion on topics of importance to you.

Peer-reviewed papers due by: 1 August

Non-peer-reviewed due by: 1 November

May 2014 – Mindfulness and Spirituality

Mindfulness is often thought of in relation to spirituality, given its roots in esoteric traditions; however, therapeutic models are increasingly incorporating a range of approaches focussing on mindfulness and acceptance due to a growing body of research suggesting that mindfulness-based therapies may be effective in treating a variety of disorders including stress, chronic pain, depression and anxiety.

In this issue, we will explore the historical and philosophical roots of mindfulness therapies, theoretical and empirical underpinnings, specific applications, and mindfulness treatment strategies—and how they might also relate to spirituality. We invite you to share in this exciting discussion by contributing to the May issue of CQ. Peer reviewed papers due by: 1 November

Non-peer-reviewed due by: 1 February

Deadlines are for articles that have been accepted, not for new ideas.

Please send expressions of interest as soon as possible, to maximise your chance of inclusion.

For Contributor Guidelines contact editor@capa.asn.au

Advertising rates for 2013 Ad size

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Book your ad for a year (4 issues) and receive a 12% discount Booking deadlines February issue 1 December May issue 1 March August issue 1 June November issue 1 September Artwork/copy deadlines February issue 1 January May issue 1 April August issue 1 July November issue 1 October

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36

CQ: The CAPA Quarterly

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A free service for CAPA NSW members, contact advertising@capa.asn.au

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CQ: The CAPA Quarterly – Peer-Reviewed Articles

Submitting your articles for peer review has many benefits, including: elevating the quality and authority of your work expanding your Higher Education Research Data Collection (HERDC) publication count enhancing the academic rigour of The CAPA Quarterly CQ uses a double-blind review process, where the identities of both author(s) and reviewers remain anonymous.

Articles submitted for peer review will be sent to 2-3 independent reviewers.

Guidelines for your submissions with a request for peer review are available by contacting editor@capa.asn.au

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Looking for a Conference?

To include your free conference listing here, contact editor@capa.asn.au

Looking for a conference? Some prominent psychology conferences in Australia and elsewhere this year are listed below. For a more comprehensive list of psychology conferences worldwide, visit http://www.conferencealerts.com/psychology.htm

17-18 November 2012 Melbourne

Profound Healing-Sustainable Wellbeing Conference

22-25 November 2012 Launceston

Australian Psychological Association 18th APS College of Clinical Neuropsychologists Conference – ‘Neuropsychology in Action’

22-25 November 2012 Melbourne

Australian and New Zealand Association of Psychiatry, Psychology and Law 2012 Annual Conference

http://www.gawler.org/speakers http://ccn2012.blogspot.com

http://www.anzappl.org/

24-25 November 2012 Bangkok

3rd International Conference on Behavioral, Cognitive and Psychological Sciences (BCPS 2012)

http://www.iedrc.org/bcps/index.htm

28-30 November 2012 Sydney

Australasian Society for Psychophysiology Conference 2012

http://www.asp.org.au/asp2012.html

29-30 November 2012 Melbourne 30 November–2 December 2012 Melbourne

11th Australian Conference for Personality and Individual Differences 6th Annual ANZ Conference of Acceptance and Commitment Therapy

3 December 2012 Burwood, Victoria

Victorian Tertiary Counsellors Conference

5-7 December 2012 Oxford, England

The British Psychological Society Division of Clinical Psychology Annual Conference 2012

http://www.psych.unimelb.edu.au/research/labs/ppl/ conference-ACPID.pdf http://www.anzact.com/conferences_&_workshops http://emgevents.com/event/vtcc2012/ http://www.bps.org.uk/dcp2012

16-18 December 2012 Lahore, Pakistan

International Conference of Applied Psychology

http://pu.edu.pk/icapp2012/

17-19 January 2013 New Orleans

The Society For Personality and Social Psychology 14th Annual Meeting

http://spspmeeting.org/2013/Welcome-to-SPSP-2013. aspx

7-10 February 2013 Los Angeles

The Evolution of Addiction Treatment 2012 Conference

http://theevolutionofaddictiontreatment.com/

21-24 February 2013 Melbourne

APS Counselling Psychology Conference Evidence-Based Approaches To Practice

www.groups.psychology.org.au/ccoun

25-26 February 2013 Singapore

2nd Annual International Conference on Cognitive and Behavioral Psychology

http://www.cognitive-behavior.org

March 19-23 2013 Stellenbosch, South Africa

1st World Conference on Personality

http://www.perpsy.org/

28-31 March 2013 Osaka

The Third Asian Conference on Psychology and the Behavioral Sciences

http://www.acp.iafor.org/

26-28 April 2013 Syracuse, New York

The 2013 Empathic Therapy Conference

http://www.empathictherapy.org/Conference.html

17-18 November 2012 Melbourne

Profound Healing-Sustainable Wellbeing Conference

22-25 November 2012 Launceston

Australian Psychological Association 18th APS College of Clinical Neuropsychologists Conference – ‘Neuropsychology in Action’

http://www.gawler.org/speakers http://ccn2012.blogspot.com