INsite May 2014

April/May 2014 | $10.95

AGED-care & retirement

We’ve got your industry covered I www.insitemagazine.co.nz

Focus

Scrutinising

Spark of Life Soap box

Sector leaders

reveal their biggest challenges

FOCUS: Retirement villages as a business

The importance of having THAT conversation:

Advance Care Planning Featured in this issue:

Kristine Bartlett Julian Cook Alan Edwards Julie Haggie Colin Mathura-Jeffree Grainne Moss Helene Ritchie Graham Stokes Martin Taylor and many more

Tacera

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Email us at info@austco.co.nz Call us on 0800 287 826 TACERA is an advanced IP based nurse call solution for healthcare facilities that has plug-and-play functionality.

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Alerts generated from Patient Monitors, Ventilators, IV Pumps and Stat Lab results may be integrated into TACERA allowing “one click” staff allocation.

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Austco

In this issue...

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FOCUS: retirement villages as a business

AGED-care & retirement

Ed’s LETTER INsite Magazine April/May 2014 Volume 8/Issue 4 Editor: Jude Barback @INsite_NZ T: 07 575 8493 E: editor@insitemagazine.co.nz Advertising: Belle Hanrahan T: 04 915 9783 E: belle@apn-ed.co.nz Production: Aaron Morey Dan Phillips Scott Irvine Editor-in-chief: Shane Cummings @ShaneJCummings General Manager/Publisher: Bronwen Wilkins Subscriptions: T: 04 471 1600 F: 04 471 1080 E: subscriptions@apn-ed.co.nz Publisher’s note: © Copyright 2013/2014.

No part of this publication can be used or reproduced in any format without express permission in writing from APN Educational Media (NZ) Ltd.

Editorial & business address Level 1, Saatchi & Saatchi Building, 101-103 Courtenay Place, PO Box 200, Wellington 6140, New Zealand T: (04) 471 1600 F: (04) 471 1080 ISSN 2324-4755 INsite is distributed to key decision makers in the aged care sector and its distribution is audited by New Zealand Audit Bureau of Circulation (ABC).

It is almost impossible to discuss the challenges presented by the growing ageing population without the phrase “baby boomers” cropping up.

At a recent dementia seminar in Auckland, Bupa’s director of dementia services, Professor Graham Stokes, was discussing the impact that the boomer generation was about to have on aged care services. “Baby boomers think they’re the solution. In reality, they’re the problem!” he said.

Shortly thereafter, I put this notion to Minister of Health Tony Ryall and he shook his head. “They’re the opportunity,” he said.

After reflecting on the two conversations, it occurs to me that both are correct. New Zealand’s growing ageing population presents problems for aged care providers as we forge ahead on inadequate levels of funding.

But the influx also presents opportunities for how we think about ageing and aged care. Ryall says he thinks we will see more retirement villages that incorporate aged care facilities, providing a full continuum of care.

He also thinks home and community support services will become increasingly important as more and more people choose to remain independent in their own homes for longer, or “age in place”.

At my suggestion that there needed to be considerably more funding directed at the home and community support services sector to allow this to play out effectively, he nodded, then changed the subject.

There are so many different areas tugging at the health purse strings, all with legitimate claims to funding. How do you prioritise funding for a bowel cancer screening programme, funding for low cost primary care clinics, funding for better wages for aged care workers?

Allocating taxpayer dollars strikes me as a daunting task, but when confronted with the boomer wave, it seems clear that more needs to be flung into the aged care pot.

I asked sector leaders what they perceive as the biggest challenge facing the aged care sector in New Zealand and a variety of issues emerged – attitudes to ageing, social isolation, changing needs, concern about how to manage the growing number of people with dementia, and so on. However, the overriding concern appears to the lack of adequate funding and strong cases are made as to why the soughtafter health dollar needs to be directed toward aged care to address the current and future demands on the system. Opportunity, indeed.

Editor, Jude Barback editor@insitemagazine.co.nz www.insitemagazine.co.nz

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Advanced care planning - the importance of having that conversation

6

Finding the sexiness in dementia

8

In sickness and in health

11

Spark of life approach: is it the way to go?

12

Do we care about carers?

14

Age against the machine

15

Loneliness - the last problem

6

Finding the sexiness in dementia

Regulars 2

NEWS Snippets and updates from the industry

16

On the Soapbox...

Sector leaders

18

Let’s snoop around: Glenburn Retirement Village

19

Up Close & Personal with...

Colin Mathura-Jeffree

20

Last Word...

Kristine Barlett

Connect with INsite Magazine on Twitter Follow INsite for breaking news, the latest innovations, and conversations with editor Jude Barback on the professional issues close to your heart. Find us on Twitter@INsite_NZ

www.insitemagazine.co.nz | April/May 2014

1

News New Zealand Aged Care Workforce Survey

Researchers from the New Zealand Work Research Institute (AUT University) are carrying out a survey of the New Zealand aged care workforce in April and May this year.

Dr Katherine Ravenswood, along with colleagues, Dr Julie Douglas and Professor Stephen Teo, believe that this survey will give a picture of the total aged care workforce in New Zealand across both residential and home aged care. The survey itself is adapted from the Australian National Aged Care Workforce Census and Survey.

Ravenswood says it is the first of its kind in New Zealand and will complement existing workforce projections and organisational benchmarking. It is expected to provide data on workforce trends and demographics, which will benefit industry stakeholders in a number of areas, including planning, benchmarking in New Zealand, and trends in staff/client ratios.

All residential and home aged care providers should receive a survey by post during April.

The survey comprises both a survey for managers of each facility to complete and employee surveys for employees to complete and return to the research team. Managers may also complete the survey online.

Ravenswood confirms that the survey is anonymous and the final report will not use information that can identify any single organisation.

A final report will be made publicly available through the New Zealand Work Research Institute on www.workresearch.aut.ac.nz In case you do not receive the survey and wish to, contact Dr Katherine Ravenswood on kravensw@aut.ac.nz

Negotiations to start for

care workers’ travel time The Government has decided to begin negotiations for a sector-wide settlement over travel time for home care workers – a move that will be welcomed by many in the home and community support services sector.

Reimbursement for travel time has been a long-simmering and contentious issue in the home and community support services sector, mainly due to the wide variation in DHBs’ travel policies. Negotiations are expected to address these disparities, as well issues such as back-claiming.

The Public Service Association (PSA) has been instrumental in bringing the matter to court, filing a case with the Employment Relations Authority, but National Secretary Richard Wagstaff says a negotiated sector wide settlement is preferable to a lengthy legal process.

“The PSA looks forward to sitting around the table with the Ministry of Health, DHBs, and contracted providers to find a solution that works for everyone,” says Wagstaff.

The PSA will work alongside the Council of Trade Unions and the Service and Food Workers Union to negotiate on behalf of the thousands of workers they represent to find a solution.

“Some of our members in the home care sector have to drive 600km per week between jobs, but at the moment they are not paid for this time,” says Wagstaff.

“Workers being paid close to the minimum wage have been effectively subsidising their employers in this issue which has dogged the sector for decades.”

Julie Haggie, chief executive of New Zealand Home and Community Health Association says they are looking forward to being part of the negotiations.

“The best outcome would be one where employers of home support workers can fairly compensate workers for both their travel time and their mileage, but the focus on travel time is an important step on that journey. It is heartening to know that the government has listened to providers at the centre of the dispute as well as the unions and the Association”.

Minimum Wage increase needs funding increase Last month, the Government announced a minimum wage increase from $13.75 to $14.25.

In a statement, the New Zealand Aged Care Association (NZACA) said that while it agrees that those on low wages deserve to benefit from a booming economy, the Government will need to increase its funding for the aged care sector by $15 million to cover the cost of increasing the minimum wage.

“The aged care sector is directly funded by the Government, which is why wages are so low, on average about $15.31 per hour,” said chief executive, Martin Taylor.

“We note the increase in the minimum wage will not affect DHB hospitals as they are funded by the Government to support wages of more than $17.00 per hour for their caregivers.”

Taylor outlined how the Government’s funding increase of one per cent did not cover aged care inflation (3.6 per cent), last year’s KiwiSaver increases (1 per cent), soaring insurance premiums (1 per cent) and now an increase in the minimum wage (1.5 per cent).

“All we ask is for the Government to cover the direct costs of their decisions on the services we provide to the elderly. It’s not much to ask for people who have worked their lives so they can live comfortably in their sunset years,” Mr Taylor said.

Ryman expands into Auckland Ryman Healthcare plans to build eight new retirement villages, with five of the new villages to be built in the Auckland region, although the specific locations have not yet been released.

Managing director Simon Challies says Ryman is aiming to lift its build rate in New Zealand to 850 units and beds a year by 2017 to meet increasing demand.

“At this increased build rate, we’ve got four years of development work in the pipeline in New Zealand,” says Challies.

“We are experiencing great demand for our existing villages and we know we’re about to hit a 30-year growth period as the

population ages. Auckland is the biggest market in New Zealand and it’s growing strongly.”

Meanwhile, the aged care provider also continues to expand across the Tasman, with its first site in Melbourne soon to be opened and has its sights set on securing a second site in the city.

Investors appear to be reacting positively to Ryman’s plans to expand. However, Morningstar senior analyst Nachi Moghe told Radio New Zealand news that he believed the market was overestimating Ryman’s long-term growth rate.

Got an opinion? Have your say online at www.insitemagazine.co.nz 2

April/May 2014 | www.insitemagazine.co.nz

Focus

Advance Care Planning:

the importance of having that conversation JUDE BARBACK looks at the ins and outs surrounding advance care planning in New Zealand.

I

f we could write our own scripts, most people would like to see themselves living a long, full, and happy life that ends peacefully, at home, with loved ones all around. For some, this is how life and death will pan out. Others may find themselves in need of more long-term care and support as their health deteriorates; others may be confronted with an unexpected illness or injury that changes everything. Either way, it is best to think about long-term care before it is needed and to make the necessary health, legal, and financial decisions before it is too late.

What is Advance Care Planning?

Advanced Care Planning (ACP) is based around an anticipated deterioration in the health of an individual. It focuses on an individual’s preferences for medical treatment and end-of-life care in anticipation that they may lose capacity to make decisions.

The profile of Advance Care Planning in New Zealand has been significantly raised in the past five years. Following the Inaugural International Advance Care Planning Conference in Melbourne in April 2010, the group of New Zealand delegates set up the National Advance Care Planning Cooperative.

Conversations that Count Day – 16th April April 16th is “Conversations that Count Day” - a national awareness day for advance care planning to encourage people to think about, talk about and plan for their future health care.

This is the first time this national day has been held in New Zealand and to help kiwis get behind “Conversations That Count Day” a series of online and printed postcards have been created to help people to talk with their friends and families about this important matter.

The day is being coordinated by the National Advance Care Planning cooperative which has over 800 members from many organisations across New Zealand. Events and talks are also being held across the country by nurses, GPs and other health professionals who are increasingly being trained in this important area.

The South Island Alliance, a member of the cooperative, works to support the promotion of Advance Care Planning

across the South Island through its Health of Older People Service Level Alliance (HOPSLA) working with other Alliance working groups such as the Cancer Network.

Chair of HOPSLA Jenny Keightley says HOSPLA is working to achieve standardised documentation and dedicated training to health professionals across the South Island to support more widespread use of Advance Care Planning.

Training opportunities are being rolled out nationally. Level 1 ACP training is available currently online at www.advancecareplanning.org.nz and level 2 training is currently being rolled out across the country. Level 2 training is available for any clinician in the health care system who is supported by their manager to attend.

To find out more or to send someone you care about a postcard by email visit www.conversationsthatcount.org.nz.

Continued on page 4 >> www.insitemagazine.co.nz | April/May 2014

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FOCUS << Continued from page 3 The cooperative set up a website (www.advancecareplanning.co.nz) with information and resources for individuals, their families and the health workforce, with a focus on training.

One of these resources, the Ministry of Health’s document Advance Care Planning: A guide for the New Zealand health care workforce, states that ACP discussions should be ongoing and encourage conversations about what is important for a person with regards to their hopes and fears about their future health and death and dying. By engaging others – family and caregivers, for example – the ACP process can help them to better understand the person’s wishes and help with decision making when the person is no longer able to communicate this themselves.

It can be difficult to know when to have discussions around ACP. The MOH document says all people who have an advanced life-limiting illness or condition should be given the opportunity to discuss their prognosis and end-of-life issues. If a health professional acknowledges that they would not be surprised if the patient were to die in the next 12 months, it is time to engage with family members and start these conversations.

However, ACP can start at any time.

Some people will prompt the ACP discussion themselves, others will rely on healthcare professionals. Some will welcome the opportunity for such discussions, others will not wish to participate. In any case, ACP discussions should be handled with sensitivity but also with knowledge of the legal framework so that any formal documentation can be completed if required.

The legal side of ACP is significant. The MOH document states that “plans made separately from discussions with health care professionals are likely to be less informed and might be more difficult to honour, especially if they are contested”. Although ACP discussions, advance care plans and advance directives may be completed orally, there are advantages to having written documents.

The actual plan can be documented on forms specifically designed for that purpose or written within the patient’s records, with the patient provided with the opportunity to confirm its accuracy. It should be able to be shared with those health professionals who may need to access it, whilst also respecting patient privacy.

Enduring Power of Attorney

If a person wishes someone else to make decisions on their behalf should they lose capacity then appointing that person as an enduring power of attorney is certainly worth considering, although it is a costly exercise, given the formal legal processes involved.

The MOH document describes an enduring power of attorney (EPA) as “an authority given by a patient (known as the donor) while they are competent, to another person (known 4

April/May 2014 | www.insitemagazine.co.nz

as the attorney) allowing that person to act for the patient once the patient is mentally incompetent”. Legally, a medical certificate stating that the patient is mentally incapable is required before attorneys can act in respect of significant matters, such as entering residential care or undergoing a major medical procedure.

An attorney must be at least 20 years old, a New Zealand resident, not bankrupt, legally capable and not subject to a personal or property order.

There are two types of EPA: one for property and one for personal care and welfare.

The same person can be attorney for both.

There are limitations to the EPA. A person with an EPA cannot refuse consent to the administration of any standard medical treatment intended to save a person’s life or prevent serious damage to their health. If the treatment is not standard, it may be possible for a person with an EPA to legally refuse consent. This limitation means that an advance directive is the best way for an individual to refuse a particular future treatment.

Advance directives

An EPA is actually a type of advance directive in itself. The Code of Health and Disability Consumers’ Rights describes advance directives as “a written or oral directive by which a consumer makes a choice about a possible future health care procedure, and that is intended to be effective only when he or she is not competent”.

Therefore if a patient has made a negative advance directive specifying that they do not wish to receive certain treatment in certain circumstances, and those circumstances have arisen, then that treatment should not be provided, irrespective of what health care providers consider to be in the patient’s best interest.

Positive advance directives, where a patient specifies a preference for a particular treatment, do not carry the same weight as there is no right to receive a particular treatment where the treatment is not offered or available.

However such preferences will certainly be taken into account and can be useful in cases of clinical uncertainty.

The key point, according to the New Zealand Medical Association (NZMA), is that patients cannot demand or refuse anything in advance that they cannot demand or refuse when conscious and competent. So

they cannot refuse in advance compulsory treatment provided under the mental health legislation; nor can they demand euthanasia or assisted dying.

For an advance directive to be legally valid, the individual needs to be competent at the time of decision-making, free from undue influence, and relate the directive to the present circumstances. It also needs to be made clear that there is a directive in existence and that it is valid. An advance directive can and should be incorporated into ACP documentation, as should documentation around the appointment of an EPA. The lines appear to be a little blurred between the legality of advanced care planning and advance directives. The MOH document states that in New Zealand it is “likely but as yet legally untested that a written advance care plan would constitute an advance directive for legal purposes” and suggests seeking legal advice if there is any uncertainty.

Rise of the euthanasia debate

For many, the idea that you can control your own health, even when you lack the mental capacity to do so at that time, is reassuring.

The upholding of a person’s autonomy is important to many. It is not surprising that advance directives are often supported by those who are pro-euthanasia.

With the increased likelihood of living much longer with dementia and chronic diseases in a state of total dependency, it is possible we shall see a rise in the euthanasia debate in New Zealand. Bupa’s director of dementia services Dr Graham Stokes says he expects more discussion around this topic, especially as the baby boomers enter this phase of life.

It is interesting to consider the experience in the Netherlands where euthanasia is legal.

A study published in Journal of the American Geriatrics Society found that despite the law, advance directives for euthanasia of people with dementia were rarely adhered to, although they did have a supportive role in setting limitations on life-sustaining treatments.

This echoes the experience in other jurisdictions where assisted dying is legal. After 15 years in Oregon and nearly 12 years in Belgium, for example, the number of patients who request assisted dying remains very low.

The Voluntary Euthanasia Society of New Zealand states on its website that while pain and symptom management delivered in hospice care is beneficial to most, some do not benefit from modern pain management protocols and this, combined with a loss of dignity, control and ability to enjoy life, can lead to a tedious and painful death.

An End of Life Choice Bill was proposed by a Labour List MP in 2012 but has since been withdrawn following political pressure.

However, there remains strong opposition to the legalisation of euthanasia and assisted suicide in New Zealand. The Care Alliance, an umbrella organisation representing palliative,

FOCUS medical, youth, elderly, disability, bioethics and faith sectors that are opposed to euthanasia, was established in 2012 in response to the Bill, and remains active in its opposition.

“Legalising euthanasia goes against the core values of the medical profession and will radically change the doctor-patient relationship, ultimately undermining good clinical and palliative care. It will devalue the lives of the elderly and people living with disabilities, and increase the risk of abuse among the most vulnerable New Zealanders,” said Dr Sinéad Donnelly, a palliative care physician.

“As long as there is a political intent to legalise euthanasia in New Zealand, we need to be vigilant,” said Care Alliance co-founder Maggie Barry.

Changing circumstances

Stepping away from the euthanasia argument, many are advocates for advance directives simply because they like the fact that family and healthcare professionals will have a better understanding of their choices at the time treatment is required. Directives can also help to lift the burden of decision from relatives when faced with difficult decisions. They can also serve to cut expensive health costs for family members.

However, The Life Resources Charitable Trust makes the point that these arguments, however valid, have no bearing on the wellbeing of the patient or accuracy of compliance with the patient’s health preferences.

Advance directives, or ‘living wills’ as they are often called, are often criticised for being unable to accurately anticipate circumstances at the time of treatment.

The NZMA points out the possibility that patients’ views and treatment options can significantly change in the time between when the directive is made and the treatment is required.

“Over time, patients’ views can also change about what constitutes a tolerable existence.

Advance directives cannot encompass unforeseen possibilities and options. Therefore, while upholding patients’ rights to decide in advance, the NZMA also emphasises that patients need to think carefully about the risks associated with committing themselves in advance.”

There are many case studies to illustrate the difficulties associated with advance directives.

In her article Palliative Care and Advance Directives, Joanne Doran, Area Medical Director of Palliative Care at St Vincent’s Hospital, in NSW, Australia, gives her account of dealing with a confused patient who, despite having an advance directive to the contrary, was adamant he wanted to receive treatment for his pneumonia.

“The situation was stressful for everyone involved.

His next of kin was very traumatised by the whole experience.”

Ethical and clinical challenges

The New Zealand Medical Council makes clear in its guideline for the use of advance directives in accordance with the

New Zealand Bill of Rights (1990) that a doctor cannot ignore an advance directive unless there are reasonable grounds to so.

However, there are many difficult issues for healthcare professionals to confront, around interpretation, validity, the obligation to provide palliative treatment in the case of refusal of all other treatment, whether food and fluids count as medical treatment, and whether “palliative/terminal sedation” is a right in situations of extreme pain or other distress.

In its position statement on advance directives the NZMA states that doctors should be under no obligation to follow an advance directive to which they hold a conscientious objection or which they see as unethical or not consistent with good medical practice, and in these events they should explain to the healthcare team and family why they are not willing to follow the advance directive and if possible remove themselves from the treatment team.

Ambiguous language

Such clinical challenges can arise through vague or ambiguous language used in advance directives.

As this example, taken from a “Living Wills” pamphlet by Mary C. Senander, Human Life Alliance of Minnesota, Inc. shows, many questions can arise from the use of catch-all terms.

“If I should have an incurable or irreversible condition [does this include asthma, diabetes, cerebral palsy, heart conditions, or AIDS that may worsen considerably in the future - or even be cured?] that will cause my death within a relatively short time [this could be hours or weeks or even months] and if I am no longer able to make decisions [what if the person is affected by medication or allergies? What if he is temporarily disoriented or depressed?

Stoned? Or senile?] regarding any medical treatment, I direct my attending physician [family doctor? Friend? Attorney-in-fact?

What about a doctor in a strange city who knows nothing about you?] to withhold or withdraw treatment [what about respirators or chemotherapy? How about insulin, nitroglycerin, blood pressure medicine, oxygen, antibiotics, even food and water?] that only prolongs the dying process and is not necessary to my comfort or to alleviate pain [if you are transitorily comatose or drugged, what degree of pain is being specified here?].”

Overcoming barriers to ACP

Aside from objections to advance directives, there are other barriers which prevent ACP from taking place. Quality ACP requires time to prepare and hold the discussions, and due to many demands placed on health care professionals, such time is not always readily available. This is compounded by the fact that end-of-life discussions are not always easy to initiate and may be uncomfortable to hold.

International studies have shown that the quality of end-of-life and ACP discussions

between patients and their health care providers are predominantly poor.

However, the enhanced focus on ACP in New Zealand suggests we are getting better at holding these important conversations and thinking ahead to the future with all its possibilities.

Importance of ACP on the public purse The ACP process has the potential to improve the individual patient’s quality of life, but does it make any difference to public health expenditure?

Dr Ben Gray of the University of Otago’s Primary Health Care & General Practice Department believes ACP can potentially minimise this rise in health expenditure, saving health dollars for use elsewhere in a system.

Apparently expenditure on dying people is increasing. In a blog entry last year entitled ‘Advance Care Planning – good for patient care and better use of health dollars?’ Gray points to research that shows we spend around seven times more in the last year of life than the average spent in all other years of a patient’s life, and this problem will be exacerbated as the baby boomers die.

In his post, Gray outlines the case of his patient Joan (not real name) who suffered from emphysema and grew increasingly despondent about living. She was admitted to hospital with a chest infection, and treated with antibiotics. When Gray visited her, she said she didn’t want the treatment, or to go on living. She was then taken off the antibiotics and died the next day.

No one at the hospital had been able to have the conversation with her about whether she wanted treatment or not.

Gray also believes many health professionals are too trigger-happy with offering treatment, without considering what the patient really wants for the final phase of his or her life. He makes the point that some people live longer if given palliative care than if offered interventional care. “As long as a clinician’s presumptions that extending life at any cost is worth it goes unchallenged, ineffective intervention is more likely to continue.”

“If all the patients like Joan could have their wishes for less health sector resources provided, and we only offered treatment to patients that we knew would be likely to benefit, a lot of resource could be saved, making it easier to fund other deserving options.”

www.insitemagazine.co.nz | April/May 2014

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FOCUS

Finding the sexiness in dementia Bupa’s global director of dementia services, Professor Graham Stokes talks to JUDE BARBACK about why we need to turn our attention to person-centred care and society’s attitudes need to change.

“I

’m going to take off your clothes,” the professor says to me.

It sounds like a line from a frisky paperback, rather than a dementia seminar.

Yet it was indeed the latter; having foolishly chosen a seat near the front, I was - to my embarrassment and others’ amusement - to be the example in Professor Graham Stokes’ scenario, in which he was a carer and I was a resident with dementia who had apparently soiled herself.

The point of the exercise was that my unwillingness for him to undress me now was unlikely to change just because I was older and demented. Stokes, a world-renowned expert on dementia, says personal care can be difficult for an older person to accept in any case, but even more so for someone who cannot comprehend that they need care.

So, not such a sexy moment after all. Actually, dementia is a not a sexy topic, it transpires.

No cure on the horizon

‘Sexy’ would be to find a cure. In the last few decades pharmaceutical companies have flung themselves into finding a cure or effective treatment for dementia. Phenomenal amounts of money and years of research have been spent on clinical trials, and all to no avail. Apparently 103 drugs have reached final phase and all have failed. Inevitably the pharma companies have become despondent and are pulling back from directing their energies and finance into finding a cure.

I find this very unsettling. There is, after all, a high chance that I will have dementia one day and the degrading scenario acted out in Stokes’ seminar will materialise. Apparently one in five people dement in their eighties, and one in three in their nineties.

Yet oddly, I wasn’t really that worried about it. It wasn’t until I reflected on my glib attitude that it occurred to me that the 2050s felt so far into the future that I was subconsciously relying on the fact that some cure will be found by then, some wonder-drug that will take me out of the throes of dementia and return me to lucidity and an independent life.

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April/May 2014 | www.insitemagazine.co.nz

And perhaps there will be. But as things stand today, ‘incurable’ must be added to the long list of unappealing adjectives so often associated with dementia.

Unsettling indeed, and not just for the individual, but for the governments that are slowly awakening to the beckoning crisis.

The fact that dementia made it onto the agenda of the recent G8 conference in London is telling indeed. Life expectancy is increasing by more than two years with every decade that passes. To put that into context, in 2082 I shall be 100 years old, and this will be four years short of the average life expectancy for women.

But it isn’t just that people are living longer that is of concern to politicians, it is that more people are living longer. Throw in the risk of dementia and you begin to get a sense of the scale of the challenge.

Aged care budgets around the world are already experiencing uncomfortable stretches as they begin to feel the effects of ageing populations. But they are entirely inadequate for what is about to hit.

In 2024, the first of the baby boomer generation, generally defined as those born between the years of 1946 and 1960, will reach the age of great risk of dementia, 78 years.

What is dementia?

We tend to use dementia as a one-size-fits-all word, and for many purposes, this is acceptable.

However, it is worth understanding the different forms dementia can take.

Dementia is, in itself, not a disease; rather it is the result of having an untreatable disease, most commonly Alzheimer’s, in which the number of nerve cells in the brain gradually reduces, making daily living increasingly difficult as it begins to impede language, understanding, problem solving, orientation and movement. It is irreversible and can last for many years.

Vascular dementia is the second most common type to afflict older people, and is the result of small blood vessels in the brain becoming blocked, causing many tiny strokes (or strokelets) in the brain, leading to a gradual

decline in mental ability.

Dementia with Lewy bodies accounts for 10 to 15 per cent of all cases of dementia in older people and is caused by the presence of tiny protein deposits in nerve cells which disrupts normal functioning and results in impairment of memory, language, reasoning, movement control and visual recognition.

Beyond these types of dementia, there are yet rarer forms, resulting from a wide range of diseases.

Warning signs (and lack thereof)

Professor Stokes asks us each to draw a clock with the hands pointing at ten past eleven.

Apparently this is a test for the early signs of dementia. What he watches for, he explains, is any hesitancy in drawing the big hand. Someone showing the early signs of dementia might waver between the two and the ten as his or her mind grapples with what should be a facile and familiar task.

Apparently there are four years of uncertainty prior to the onset of dementia, and a person’s failure to complete such a task with accuracy and confidence is a sign that they may have entered these four years. There are other signs too, of course, such as forgetfulness, comprehension, difficulties with thinking, judgement, and learning new skills.

The problematic thing is that dementia can be difficult to detect. Diagnosing dementia is complicated by visual and hearing impairments; forgetfulness can be put down to a number of reasons. There is also a huge amount of stigma and mythology around dementia, which can lead people to avoid confronting early signs. For these reasons, and many others, only 20-50 per cent of dementia cases are typically recorded in primary care and this proportion drops to just 10 per cent in poorer countries.

I am confident that I do not have any early signs of dementia – yet – so I feel smug as I draw my clock with certainty. However, any sense of self-satisfaction is quickly replaced when Stokes reveals that prior to the four years of uncertainty, Alzheimer’s disease can slowly

FOCUS

Bupa’s global director of dementia services Professor Graham Stokes

grow for 20 years with no signs that anything is wrong.

Stokes then drops another bombshell: that after 30 years of age, we begin to lose 1000 brain cells every hour. It is a sobering thought; the more astute readers will have already worked out that I have passed my thirtieth birthday. Suddenly 2060, the year when my risk of dementia is heightened, doesn’t seem so far away. Where’s this cure already?

model of care and the Spark of Life programme are just some that hinge on focusing care on the individual’s needs.

Beyond the rest home: dementia-friendly communities

Prevention – understanding more each day

But we’ve already established that a cure is not forthcoming, which leaves us with directing our efforts into finding out more about dementia care and prevention.

There are glimmers of hope on the prevention front. We are learning more every day about what can trigger dementia.

We know that mental health plays a part and that there is a correlation between depression and dementia. Mental stimulation and social activity are said to help delay its onset.

We know that alcohol, obesity and a poor diet all increase the risk of developing dementia.

Research consistently shows that people who have type 2 diabetes are on average more likely to develop dementia compared to those without diabetes. A review of relevant studies found that diabetes was associated with a 47 per cent increased risk of any dementia, a 39 per cent increased risk of Alzheimer’s disease, and a 138 per cent increased risk of vascular dementia.

A recent study even claims that eating barbecued meat could speed up the process of dementia. Advanced glycation end-products (or Ages) are harmful compounds that suppress a protective anti-ageing enzyme and are derived from fried or grilled meat as well as cheese, eggs, white bread, pasta, and sugary treats such as pastries, cakes and biscuits. The study found that a high-Age diet was linked to agerelated brain diseases, including Alzheimer’s, prompting a call for more research in this area.

Stokes agrees there needs to be more significant evidence-based research in the area of prevention in order to truly promote preventative behaviours in the general public.

However, he remains pragmatic about the limitations of prevention. “Even he who eats an apple a day and visits his GP regularly, still might find himself with dementia,” he says.

Care – the last bastion

This is perhaps why many believe there is a need for more evidence-based research into dementia care. While arguably not as “sexy” as research into cure or prevention, Stokes believes this is the next big step that needs to be taken for dementia.

It is not easy caring for people with dementia, particularly when they can exhibit challenging behaviour.

Stokes makes the point that a person is not wandering or disruptive because they have dementia, rather it is because they are living with dementia.

A resident may not like to sit in a certain place, or eat certain foods, but when faced with situations they don’t like, their dementia prevents them from expressing, or perhaps even understanding why they feel dissatisfied. So they might wander off, or get aggressive.

The key thing is to remember that they are a person and the goal should be to meet his or her individual needs. In the absence of detailed care plans made prior to the onset of dementia, it can be difficult to know a person’s needs and preferences, but not impossible.

Stokes says there are some who question the point of going to any effort to create five seconds of happiness for a person who promptly forgets it; however it is the five seconds that we need to focus on, he says, not the forgetting.

Person-centred care is not a new concept, but it is one that appears to be constantly reinventing itself as it becomes clear that in the absence of a cure we need to find a way to bring quality to the lives of those with age-related conditions, including dementia.

The Eden Alternative, Australia’s new consumer-directed care model, the restorative

Rest homes, many with secure dementia units, are generally well equipped to care for people with dementia.

However, Stokes relays to me the wish of a dementia facility manager he met recently in Australia; her fervent hope is that she can open the doors and gates of her facility and let the residents freely come and go into the community, which in turn is aware and accepting towards those with dementia.

But how to achieve such a vision? It is almost utopian to expect society to embrace dementia to the extent that those living with the condition can feel safe and comfortable in their wider community.

Supermarkets are a good example of how profits can fly in the face of social conscience.

Stokes tells me that in the UK, while many supermarkets are seemingly keen to wave the dementia-friendly flag, most have drawn the line at the one truly meaningful change they could make: to cease moving stock around – a common source of confusion for the customer with dementia. And let’s not forget that 60 per cent of people with dementia are living in community on their own, using these supermarkets on a regular basis.

But there are silver linings of hope shimmering.

In the UK, for example, the Dementia Friends initiative is making good headway with its goal of attracting one million dementia friends by 2015. It is also doing much to promote dementia-friendly communities.

In Japan, over four million people have already completed training as volunteer supporters for the country’s dementia-affected population, with a goal to have at least six million by 2017.

As the message begins to sink in that the number of people living with dementia is set to explode, as we learn about the realities of what it means to live a long life with dementia, perhaps it is time to think big.

Perhaps a society that shows tolerance, understanding and acceptance towards dementia might be within the realms of possibility after all. Now that’s a sexy thought, indeed.

edward@activerehabequipment.co.nz

www.insitemagazine.co.nz | April/May 2014

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FOCUS

In sickness

and in health JUDE BARBACK considers the burdens placed on the older person caring for their spouse or partner and what support is out there for them.

U

ntil death do us part, in sickness and in health – there are great expectations placed on a marriage. For many couples it isn’t until the later stages of life when the ‘sickness’ becomes a reality and one spouse, typically when his or her own health is beginning to ail, assumes the role of ‘carer’ in addition to husband or wife.

Are spousal carers coping with this late-life burden? What are the impacts on their own health and wellbeing? And where do they turn for support if they find themselves unable to cope?

Roy and Betty’s story

In March last year Home Support North Charitable Trust received a district health board (DHB) referral for Roy* who was diagnosed with Parkinson’s disease. Roy was allocated four personal care hours each week for a support worker to provide assistance so that his wife, Betty*, his sole carer, could go to her embroidery class. Carer support hours were also allocated and Betty arranged for a friend to come and be with Roy for twice a week, allowing her to attend a weekly social day at a nearby retirement village for four hours.

By July Roy was now allocated ten hours of personal care assistance in which the support worker provides showering assistance six days a week as well as four hours supervision so that Betty could continue attending her embroidery class. Roy was put on the respite programme 8

April/May 2014 | www.insitemagazine.co.nz

and would spend one week in every six residing at the retirement village.

But despite the increase in hours and the respite programme, Betty did not appear to be coping with the strain of being the main carer of a spouse whose health was deteriorating. She came into the office on several occasions and cried on the coordinator’s shoulder. While the family appeared caring, they were not supportive with the day-to-day care of Roy.

By February this year, it all got too much for Betty and Roy was exited from the trust’s service and entered permanent residential care.

“I have found that there is tremendous pressure on the main carer of a spouse who has declining health. Some people appear to cope and others don’t,” says Fiona Barrett of Home Support North Charitable Trust.

Detrimental to health

Betty’s failure to cope with the strain of caring for her husband is not an isolated case. Research consistently shows that the emotional and physical burden on those who care for their spouse or partner can have a detrimental effect on the carer’s health.

The Caregiver Health Effects Study, as published in Preventative Medicine by Burton et al, found that spousal caregivers were significantly more likely than noncaregivers to not get enough rest, to miss

meals, to not take enough time to exercise or recuperate from illness, to forget to take prescription medications, and to miss doctor appointments.

A US report conducted by the National Alliance for Caregiving in 2006 found 17 per cent of family caregivers reported their health as fair or poor – compared to the national average of nine per cent. Fifteen per cent of the caregivers surveyed said their health had become “a lot worse” because of providing care, while 44 per cent said it had got “moderately worse”.

Common complaints included energy and sleep deprivation, stress and panic attacks, pain, depression, and headaches.

Many of these ailments were also found in research analysis compiled by Michael Fine and Caroline Glendinning in Ageing & Society . For example, the role of dementia in creating needs for care in advanced old age is associated with high levels of stress and depression amongst carers.

However, research shows that it makes little difference what illness or disease is affecting the patient. A study published in the International Journal of Geriatric Psychiatry in 2002 by Thommessen et al looked specifically at spouses caring for patients with dementia, stroke and Parkinson’s disease and concluded that these spousal caregivers perceive a similar type and level of psychosocial burden, independent of the disease, although the cognitive functioning of the patient was found to be a particularly

FOCUS important factor. Disorganization of household “The big area where there is a major problem routines, difficulties with going away for holidays, is using their carer support hours,” says restrictions on social life, and the disturbances of Jennifer Jones from Access. “Often we found sleep were the most frequently reported problems. people would use this to give them a morning out of the house. Because of the dollar value The blurred line between placed on the carer support we may do four ‘carer’ and ‘dependent’ hours and claim one day (eight hours) of carer There are two misconceptions around spousal support which the client was very happy about. care. The first is that women are always the When the Ministry of Health stopped this and caregivers in a relationship and men the recipients said we had to charge only the hours we were of care. This, in part is attributed to the longer life there it meant the carer was paying a big top up expectancy of women and the fact that husbands for each hour of carer support they used. This are often older than their wives. The 1996 Census has meant many people now do not use the showed that of the 54 percent of elderly who carer support hours as it is financially too hard.” lived with a spouse or a partner, two-thirds of elderly men and two-fifths of elderly women were Financial support living with a spouse/partner. It also stems from Financial support for family carers has been a traditional notions of women fulfilling caregiver sensitive topic in recent years. roles.

The Government’s highly criticised Funded However, social trends appear to be changing, Family Care policy came into play on 1 suggesting that more men provide care for their October last year. Under the new policy, eligible spouses than previously acknowledged. Fine and adult disabled people are allocated Ministry of Glendinning point out that the growing visibility Health funding to employ certain family carers of older men as carers suggests that gender is no for the delivery of personal care and household longer the most influential factor in caregiving for management services. The funding, estimated at a spouse or partner. $23 million a year over the next four years, will The second misconception stems from the enable around 1600 parents of disabled adults generalisation that one person in a couple is the who have high-support needs to receive the carer and the other is the recipient of care. In minimum wage for up to 40 hours per week. most cases, a couple will live in a state of mutual However, the scheme does not extend to dependence; while this may fluctuate in the case children, spouses or partners, and neither of ill health of one spouse, it doesn’t eliminate the spouses nor partners of older people qualify for needs of the other spouse. Fine and Glendinning the Supported Living Payment (which replaced suggest that it is increasingly inappropriate to the Domestic Purposes Benefit – Caring for distinguish a ‘dependent’ older person from a the Sick or Infirm last year), for which other ‘carer’ as it is likely that both will have some needs at-home family carers who give up an income that need to be met. are eligible.

Ruth, a resident at Bupa’s Glenburn So what financial support is available for Retirement Village in Auckland, and her husband those caring for their elderly spouse? In these in the aged care facility next door, provide an circumstances, the supported person and their example of mutual dependency. Ruth was the partner may qualify for a benefit in their own sole carer for her husband – who has dementia right, including the Invalid’s Benefit or – before he entered permanent residential care, New Zealand Superannuation, and the carer but as she has a sight and hearing impairment, can receive financial support as a partner. she still depends on her husband to help her with New Zealand Superannuation provides various tasks. regular income for older people, but there is extra targeted financial support for those in Home support services need, such as the accommodation supplement, Spouses need not shoulder the burden of caring disability allowance, and hardship assistance, in for their partner all by themselves. Home support the form of Special Needs Grants and Advance is a way of providing a break for them, or for Payment of New Zealand Superannuation, for helping with the more daunting personal care tasks.

Often the system works well to support spouses. Bridget Smith from Access Homehealth says they take a proactive approach to supporting the spouse or partner, devising a plan in preparation that recognises that if the client needs to goes into hospital, the spouse may still require some support at home, with heavy household tasks, for example.

However it transpires that tightening up of the funding rules around home support services has meant home support providers now have to charge clients a ‘top up’ fee for each hour of carer support used, the cost creating a barrier for many spouses in seeking home support.

people who have immediate or emergency need and have no other way of meeting that need.

In 2012, hardship assistance totalling $12.6 million was paid to people aged over 65.

Problems with respite care

Of course for many, it is not about the money, but about the available support.

It appears there is need for more and better respite options. NZ Doctor’s 2010 “Report into Aged Care” revealed several examples when the quality of respite care was reportedly inadequate. In one submission, a daughter maintained that “everything that went wrong with her [mother] was done in the rest home respite care” where she went once a week for 24 hours. Another submitter told of her husband being cared for by “several teenagers” who bullied the residents to hurry up getting their meals or they would be taken away from them.

Garry Bell, general manager of Waiheke Health Trust says respite is an ongoing issue for his organisation as there is no in-patient facility to provide this service.

“The loss of a rest home in our area has really impacted on options in this area,” says Bell, “It is very difficult finding a place in the city and getting the person there even if they do find somewhere they like. There is funding for some in-home respite available if the person meets the criteria, however it is sometimes required at very short notice [such as] times of extreme carer stress or the full-time caregiver becoming ill, and in those cases it can be difficult to get funding quickly.”

Bridget Smith from Access agrees.

“Most respite from a two week point of view is really difficult for clients as they have to prebook the respite, yet they more likely need to have respite up sleeve in case anything happens – like sickness - but then they often can’t use it as they have to pre-book.

“We also often find that respite hasn’t been put into a care package either and only becomes an issue once there is a care package in place or if a client is already assessed as rest home or hospital level.”

Smith thinks more funded day care – or night care if the person wanders at night should be accessible to families, in order to give the spouse a break.

“Often the spouse is requiring some relief just to be able to have a sleep in, go shopping, catch up with family or get out of the house without relying on others. For the client, day care provides activities, social engagement, and some provide a clinical review.”

Carers’ Strategy Action Plan Despite the limitations and inadequacies of respite care in its current form, it remains an important factor for family.

The recent announcement of the Carers’ Strategy Action Plan for 2014 to 2018 by Senior Citizens Minister Jo Goodhew suggests the Government is aware of the need for some improvement to respite services.

Continued on page 10 >>

www.insitemagazine.co.nz | April/May 2014

9

<< Continued from page 9

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The plan, which Goodhew promises does not take a “one size fits all” approach, is the result of extensive consultation last year, including the consideration of over 400 written submissions.

Among other things, the plan recognises that carers need support to balance their caring with their work and studies. It also acknowledges “a top priority for carers is being able to take a break when required”.

The plan details the intention to develop a carers’ resource on respite, and to develop a range of respite options, through trialling different types of respite options – not just facility-based care. It also outlines the development of an online carer matching service.

The proposed online service will hold a database of key carer criteria that the family carer may search to select the most suitable alternative carer or option available in “real time” to support the person they care for when the family carer needs a break.

‘Arduous’ assessment processes

Another area of concern is the assessment process to determine the need for the client to receive some home support in addition to the care delivered by the spouse.

Garry Bell of Waiheke Health Trust says feedback to his team from most people in this particular situation is that the assessment process is arduous, with the assessment taking between two to three hours.

“We have not had any positive feedback re the interRAI experience to date, however regrettably plenty of negative comments. Often the spouse that is looking after a partner with a high level of need finds the assessment exhausting and finds some of the questions too personal.”

However, not everyone shares this view. Carmel Conaghan, general manager of Home and Community Support Services at Geneva Healthcare concedes that some may find the interRAI process long-winded, but believes the assessment tool will prove to be hugely beneficial to the sector.

“The beauty of interRAI is that it is used on a global platform and we will start to form a picture of where there are pockets of carer stress and where there aren’t, for example, and learn from these areas.”

Another criticism of assessment processes is that clients can feel like they are answering the same questions over and over again for different organisations. Conaghan says interRAI will eventually replace the need for so many people to come in and essentially do the same assessment.

Restorative model of care

Conaghan is an advocate for the restorative model of care, which was championed by the Auckland District Health Board and is now being adopted by an increasing number of DHBs around the country and providers.

The restorative model is essentially about providing assessments of clients in the community and responding to the person’s individual needs. The assessment takes into account their home environment and the needs of their spouse or partner in order to devise a practical programme of support that aims to build functional ability where possible, reinforce independence and limit the impact of ill health and disability.

“It is all about encouraging client independence, about empowering the client,” says Conaghan.

A restorative pathway should take into account the needs of the spouse or partner who is delivering much of the care and support carers to maintain their own health and wellbeing. This could include the provision of home support or flexible respite options that suit the needs of the client and the spouse.

It is common knowledge that person-centred care is the way forward; but in order to truly take into account the needs of a person, the needs of the people closest to that person also have to be considered if it is going to have any chance of success. *names have been changed.

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April/May 2014 | www.insitemagazine.co.nz

FOCUS

Spark of Life approach: is it the way to go?

JUDE BARBACK takes a closer look at the Spark of Life approach and how it is transforming dementia care around the world, including here in New Zealand.

T

o be honest, when I was first confronted with the Spark of Life approach, I was ever so slightly underwhelmed. A person-centred approach focused on meeting the emotional needs of a person seemed a lovely, but fairly obvious notion. Yet as I visited more rest homes and dementia units, I heard more and more about what a difference this ‘Spark of Life’ approach was making. I sensed I was probably missing something …

And as I became more aware of what dementia care involved, I realized what it was I was missing: just how challenging dementia care can be – not least because the people being cared for may not know they need care, or because they may have difficulty communicating their needs which can result in challenging behaviour.

With no cure in sight, and some skepticism around drug treatments, it seemed that carers, in both the home and aged care facility setting, needed to look to other methods in order to bring some joy and meaning to the lives of those living with dementia.

If I were a carer – and this is very much a hypothetical scenario; even with the benefit of training, I don’t believe I would be very good at it – I imagine it would be difficult to look beyond the daily motions of basic care.

Simply ensuring residents are all dressed, clean, fed, toileted and so on, sounds rather onerous without factoring in engaging with them and enriching their lives.

I think my other issue with Spark of Life was that initially it seemed a fairly touchy-feely sort of approach. Talk of ‘lifting the spirit’ and ‘restoring happiness’ did not appeal to my practical, let’s-see-results way of thinking. How could such tactics bring the ‘lasting results’ the approach promised?

But there is actually a raft of evidence-based research out there to give the approach clinical validation. A qualitative study from Curtin University of Technology in Perth examined the perceptions of carers and families of the impact of the Spark of Life Club Programme on the personal and emotional well-being of people with dementia and found, among other things that reigniting the spirit helped people gain confidence, improve social and communication skills and reengage in life with renewed energy, demonstrated improvements in memory and were oriented in time, events and dates. The study also found that staff and family members perceived people with dementia in a new light, and recognised their potential for improvement and learning.

The Spark of Life approach hinges on the notion of person-centred care, a philosophy largely championed by Professor Tom Kitwood, who identified 17 negative behaviours of people in care environments. His concept provides a method to transform those behaviours into actions that lift the spirit and add to a person’s wellbeing.

In addition to Kitwood’s research, on closer reading, it transpires there are many scientific principles underpinning the Spark of Life approach. For example, quantum physics helps provide the scientific background behind the philosophy of igniting the human spirit, which affects the thoughts, which in turn affects the health of both body and mind. Occupational science acknowledges the importance of focusing on a person’s strengths and abilities, which helps them redefine their disabilities in terms of their abilities. Neuro-linguistic programming has also influenced Spark of Life by looking for the underlying cause of challenging behaviour, and identifying preferred sensory channels and tools for communication.

The Spark of Life approach is the brainchild of Australian Dr Jane Verity and began as a therapeutic club programme specifically developed for people with advanced dementia.

When the results of this programme showed that people with dementia could improve, the framework and principles were then adapted to all levels of dementia and to the frail elderly.

It was then researched as part of a Masters degree and from its findings the Whole Systems Approach to dementia care and rehabilitation was developed. Subsequently, Spark of Life as we know it today was launched in September 2007 and the first International Master Practitioners graduated from the Inaugural Master Course in March 2010, including some from New Zealand.

The Spark of Life approach is fairly new to New Zealand, but is growing in popularity among rest homes and dementia units up and down the country.

Mercy Parklands, a residential care facility in Auckland, has worked hard over the past four years to implement the Spark of Life Whole System Approach to dementia rehabilitation.

In recognition of its efforts, the facility became the first in the world to receive Centre of Excellence status for a specialised programme for dementia care.

Since the programme’s introduction in 2009, the facility reports a dramatic 51 percent reduction in the number of falls and an overall decrease of 31.5 percent in incidents of residents’ challenging behaviour. Most

significantly, there has not been the need to transfer a resident to a dementia secure unit for the past two years, due to the improved understanding and management of residents.

Nor have there been increases in medication or other forms of restraint.

This was achieved partly through a complete restructure of one of Mercy Parkland’s wings, providing a more homely environment for its 13 residents, all with dementia.

“The residents in this wing feel much more strongly that this space is their home,” says Helen Delmonte, the facility’s OT and manager of its Allied Health team. “The programme in place enables the resident more involvement in activities that are meaningful to them with participation in specific Spark of Life clubs and contributing to daily living tasks such as cooking and gardening. The environment helps facilitate rementia – recovery of lost abilities when the social and emotional environment becomes more supportive and understanding.”

And it isn’t just the residents who are benefitting from the changes. A 2013 Press Ganey survey showed improved resident and family levels of satisfaction, improved staff knowledge skills across disciplines. An impressive 41 staff have achieved certified Spark of Life practitioner status, including Master Spark of Life practitioner status for Delmonte.

The cynic in me is certainly quelled when I hear such success. However, I have heard some facilities describe Spark of Life as an ‘all or nothing’ approach; that it is only really effective if the whole package is implemented across the whole facility; that it doesn’t lend itself to working alongside other programmes or initiatives. Some have told me it is better suited to rest home level care and is not really sufficient for the more intensive requirements of more challenging residents, such as those in psychogeriatric units, for example. Then there is the cost to consider; Spark of Life is not cheap to implement properly and facilities do need to think very carefully about whether it is right for them before forging ahead.

But that isn’t to detract from the amazing things being accomplished through the Spark of Life approach in facilities like Mercy Parklands.

It is not easy to pithily sum up what Spark of Life actually involves – the approach is so multi facetted, which is a reflection of dementia itself. It is easy, however, to take a look at the outcomes being reported from facilities all around the globe, to conclude that the approach is having a great impact on those with dementia, their families, and caregivers. www.insitemagazine.co.nz | April/May 2014

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Carers

Do we care about carers?

HELENE RITCHIE shares her firsthand experience of becoming a 24/7 carer for her husband in a “failing and ad hoc health system”.

“Care I am caring for Peter?

I am taking care of Peter I care for Peter Caring for me Taking care of me Cares for me?

Cares” I believe there are lessons to learn from my experience of being a 24/7 carer of my husband Peter during his last four years.

Caring for Peter – who had early onset (diagnosed aged 55) Parkinson’s with Lewy Body dementia – led me to write about the impact of complex chronic and degenerative disease and the frustrations of dealing with a failing and ad hoc health system. This story was written with the need for change and significant improvement constantly in my mind.

My story exposes the system, and tells it as it was from my experience. The issues are systemic, and they exist daily and sometimes hourly for many, many thousands of other carers. It is about caring, systems and the quite special circumstance of caring for someone with one of the most demanding (for carers) dementias - Lewy Body dementia, a pernicious and unpredictable degenerative illness.

We know that carers, especially those in their own homes, are the most exploited of all in the health ‘workforce’. Isolated, unpaid, untrained, inadequately supported – many do demanding, complex and often 24/7 work with insufficient relief.

We know too that those dedicated carers in privately-owned, publicly-funded rest homes and aged care hospitals are minimally trained and paid and, in my experience, often only supported by one on-duty registered nurse at night for very many patients.

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April/May 2014 | www.insitemagazine.co.nz

“The system felt like a mountain with an elusive peak hidden in fog: a mountain of slippery glass with jagged pieces rising out of it which periodically pierced my heart and stomach, and made me bleed and lose my breath, as I tried to find a way through.”

I am a registered psychologist, working in developmental and behavioural psychology, and an experienced local body politician well versed in finding my way through systems and bureaucracies.

But despite my professional background and experience, thrust as I was into being a ‘carer’ without warning or sufficient support this new role was nearly a role too hard.

My story not only exposes a deficient system, it also shows up deficient practice evident within it and I hope it will provoke questioning, discussion, and debate for people working in or studying to join the ‘helping’ professions.

“The meaning of dementia is unknown unless you experience it.”

It is important that health professionals do try to understand the experience of the home spouse, daughter or son carer. It is also important to try to understand, as closely as is possible, the experience of dementia.

The need to support carers and the ‘caredfor’ with quality treatment and support at home will be even greater in future.

Carers New Zealand tell us that the number of carers in New Zealand (2006 census) are at least 420,000 (not all 24/7).

According to Alzheimers New Zealand the number of people with dementia will grow from 48,182 in 2011 to a predicted 148,359 by 2050.

There is no doubt that in future this is a growing part of our health and home health/community support (ageing in place) ‘system’.

Viable system solutions are complex.

Perpetual haphazard tinkering offers little solace or solution but invariably compounds the challenges. What is needed above all else, is a whole of system approach, that is integrated, collaborative and innovative, to create a viable system(s) for the future.

My hope is that as a result of our story, and a greater voice and awareness of carer issues, a Royal Commission will be set up by Parliament with a ‘bi-partisan’ commitment to take action.

This is the only real mechanism our nation has to seek people’s experiences and views and to address the complex combination of clinical, professional, structural, political and societal issues by recommending actions to achieve lasting, cohesive, and innovative system solutions.

“In the end society, a country, and a government, is best judged by how it looks after its weakest and most vulnerable citizens.”

Helene Ritchie’s book Peter and Me: When a Love Story Becomes a Carer’s Anguish was published last year. A registered psychologist, and former deputy mayor of Wellington, Ritchie is an elected member of the Capital & Coast District Health Board and the capital’s longest serving city councillor.

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Technology

Age

against the

machine

DR KEVIN DOUGHTY discusses how assistive technologies are becoming increasingly important in supporting older people in their own home.

P

rediction can be an uncertain art. We’ve yet to see the jetpacks and humanoid robot helpers become commonplace as promised by the best of 1950s science fiction, although robotic helpers are being developed in Japan – and at Auckland University.

Yet technology and innovation have developed in so many unexpected ways and can literally be a lifesaver for older members of our community.

Who would have thought that people would be ordering their groceries directly off their TV screens so it could be delivered to their homes? Or that older people would be using the video games consoles of their grandchildren to help them recover following a stroke or a fall?

Yet this is what is happening today, and such innovations are allowing older people to live actively and independently as they age.

The UK and other OECD countries are now entering the age of telecare – support provided at a distance to people in their own homes.

As the name implies, it includes remote monitoring and interaction of the home environment and in some cases

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of the individual, as well as the interaction of the individual with this environment.

In the UK, telecare alarm services have matured quickly using the infrastructure of social alarm systems that were originally used by tenants in sheltered housing schemes to seek help when they didn’t own a telephone.

The majority of telecare service users in the UK today live in their own homes and use dispersed alarm units to link with a monitoring centre through the telephone network.

Improved assessments of needs and risks to independence have resulted in combinations of sensors being used to support the option of staying put rather than moving into residential care or having increasing level of domestic support.

Telecare services have developed over the past decade to include an increasing range of standalone items such as reminder devices and automatic lights, which can help prevent emergency situations for older residents.

They are particularly beneficial for those who are frail and prone to falling and to those suffering from mild cognitive impairment, epilepsy, and

April/May 2014 | www.insitemagazine.co.nz

anxiety. People who have long-term conditions, including chronic conditions such as diabetes and hypertension, can also be managed more effectively through telecare support.

Telecare services also provide assurance to family caregivers, enabling them to continue to provide unpaid support to their loved one while holding down a job and maintaining a reasonable quality of life.

Links into smart devices that can, for example, remotely control the stove, the water supply, and door entry give peace of mind to carers and can mean the difference for the older person between staying in their own home and going into a nursing home.

These monitoring technologies are becoming smaller and easier to embed quickly within the home environment, making them more acceptable and less noticeable. The monitoring centre can become an information hub, offering both advice and a vehicle for checking that someone is coping, especially following a trigger event such as a stay in hospital or the illness of an informal carer.

New systems utilise web technology that allows family members to be more proactive

in the monitoring of their relatives. This can lead to greater interaction with them, especially when the relatives live a considerable distance away (perhaps in another country).

These next generation systems are starting to include video conferencing and the use of tablets, smart phones or smart TVs. Many developed countries are increasingly embracing assistive technologies to support older people and reaping the benefits it brings to them and their families.

We are well into the technological age and proving just how much we can use it to make a difference to the lives of older people – even without the jetpacks and humanoid robots.

Dr Kevin Doughty is co-director of the Centre for Usable Home Technology (CUHTec) in the UK and was guest speaker at the COTA Australia Assistive and Enabling Technologies forums.

He will be travelling to Australia and New Zealand in 2014 to conduct workshops for aged and community services, consumers and carers for Community Resourcing Worldwide.

community

Loneliness

– the last problem Social isolation is a serious concern for older people. INsite looks at what is being done about it.

T

ony lives alone in the house he has lived in for the last 35 years. His wife died two years ago and since then his quality of life has started to take a downward spiral. His eyesight has worsened and as a result he is no longer able to drive. His memory is starting to lapse and he no longer trusts himself in social situations. He has stopped attending his historians’ group and now only attends church once a month, but he leaves before the cup of tea at the end. Although he was always more introverted than his wife, he misses the social interaction that she encouraged. He misses his wife.

His misses his children who are scattered around the globe. He is desperately lonely.

From the outside looking in, there is nothing really wrong with Tony. Although his cognitive skills are starting to slip, he is still relatively astute.

His physical health is, for the most part, very good.

Neighbours smile when they see him, respecting that he is an older man who likes to keep to himself. They admire that he is managing to live independently by himself. While some guess that he might be a little lonely, none of them glean the extent to which his loneliness is contributing to his demise.

Alarming facts and figures

In New Zealand today, almost 50,000 older people are severely and chronically lonely, like Tony. This equals about eight per cent of people 65 years of age and over.

The idea of such a vast number of older people suffering from severe loneliness is distressing, especially when one considers the impact loneliness can have on a person’s health.

There has been much research on this subject over the years. A 2006 University of Auckland study found that an older person who is chronically lonely and depressed is almost twice as likely to enter residential care. Research from the United States also shows that people who feel very lonely are likely to die sooner. A United Kingdom study found that having weak social connections carries a similar health risk to being an alcoholic or smoking 15 cigarettes a day.

It is proven that loneliness is a risk factor for physical and mental health problems, including heart disease, dementia, and depression.

Loneliness affects health by raising blood

pressure, increasing the release of stress hormones; lowering immunity, especially to viral infections; reducing sleep quality and creating daytime fatigue; and reducing the body’s ability to fight infection and respond to inflammation. As with other risk factors, the effects develop over time.

We have all probably experienced loneliness in some form over the course of our lives, whether it was triggered by the first week of our OE in an unfamiliar city, or following a separation from a partner, or being bullied at school. However, older people are more at risk of loneliness because they are also more likely to experience losses such as bereavement; family moving away; retirement; decreased sight, hearing and mobility; and reduced ability to manage alone.

What’s being done about it?

The Government’s Positive Ageing Strategy has an emphasis on keeping older New Zealanders living independently in their own homes for longer – a worthy objective, but one of the unfortunate repercussions is that ageing in place puts our growing ageing population is at risk of loneliness.

However, coinciding nicely with last year’s International Day of Older Persons, Senior Citizens Minister Jo Goodhew recently launched the Older New Zealanders: Healthy, Independent, Connected, and Respected document.

The document outlines the services and support available to older people, and summarises the Government’s cross-agency approach to the Positive Ageing Strategy. It also highlights the need for a continued focus on older vulnerable New Zealanders, including those who may be socially isolated.

Advocacy groups also play an important role in bringing awareness to the plight of loneliness among older adults. Age Concern, for example, has been instrumental in helping to alleviate elderly social isolation. Its campaign, No New Zealander Should Ever Die of Loneliness has been effective in drawing attention to this issue.

One Age Concern initiative which has proven to be particularly effective is the Accredited Visiting Service (AVS), an intervention designed to improve the health and independence of the

loneliest older people. AVS has been operating for over 20 years and throughout New Zealand there are currently 23 services – at least one in each District Health Board area. Each AVS client is matched with a police-checked and trained visitor who provides regular caring contact through one-to-one visits. The clients and visitors share conversation, activities and outings as desired.

Clients are supported to make or renew other social contacts in their communities. Visitors are also able to identify and act upon the early signs of illness or increasing frailty.

Part of Age Concern’s campaign is also focused on encouraging older people to actively increase their social interaction with others, as well as letting people in the community know of how serious chronic loneliness can be and ways they can help.

Other initiatives like Senior Chef cooking classes and Total Mobility service which provides cheap transport in urban areas are also aimed to get older people out and about more in their communities. Meals on Wheels and other home and community support services that encourage some brief social interaction throughout the day all play their part in alleviating loneliness for older people.

The Selwyn Foundation offers a network of 39 community drop-in centres for older people across the upper North Island, as well as in Christchurch, offering a morning programme of social games, gentle exercises and occasional outings at a nominal fee. Respite for carers is offered at some venues, and in one location, the service is taken out to state-owned pensioner flat complexes, enabling the less mobile to socialise with their neighbours. The centres in South Auckland also have access to the services of a community liaison nurse employed by Selwyn, who assists with health concerns that guests, their carers, or the centre coordinators may have and who can engage with healthcare agencies on their behalf.

However, the problem is far from solved. We need to continue our awareness of how damaging the effects of social isolation can be for older people, and continue to find ways to lift the shrouds of loneliness from their shoulders. www.insitemagazine.co.nz | April/May 2014

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Opinion

On the soapbox ... sector leaders INsite asked industry leaders what they perceived as the biggest challenge facing aged care in New Zealand today.

Under-funding, ageist attitudes, and social isolation are among the issues on the horizon.

Martin Taylor, Chief Executive, NZACA

Almost everyone agrees the aged care sector is underfunded – even Government ministers from time to time. And it’s not just the aged residential care sector; it’s the entire aged care sector.

Everyone agrees because the facts are hard to deny: low wages, high acuity, and increasing demand. There is even a 2010 Government-funded report that confirms building aged care beds is uneconomic.

But is underfunding the biggest challenge for aged care? Or is it a symptom of something else?

We believe underfunding is a symptom of particular drivers in the public “mind” which in turn impact on the prioritisation of government spending.

These drivers are grounded in varying levels of discrimination based on a comparative valuation of age groups. Put simply ‘baby’, ‘young’, and ‘new’ are seen in a positive light, whereas ‘elderly’, ‘old’, and ‘superannuant’ are seen as less positive.

The good news is we believe these ageist views are undergoing change. In the last two years there has been a growing public view that low caregiver wages and the employment conditions of homecare workers are fundamental injustices.

These views are being supported and strengthened by litigation, media attention and lobbying from providers, unions and other NGOs.

The question is when will these changing views prevail over age discrimination and reach a level where Government priorities must shift to accommodate them? We believe that time has arrived and 2014 should see political parties better value the elderly and the people who look after them.

Alan Edwards, Chief Executive, Metlifecare

With the number of people aged over 65 years expected to nearly double in the next 30 years, we can no longer ignore the discussion about how we are going to care for our elderly. Meeting their housing and care needs is one of the key concerns we need to address.

Isolation can have a devastating effect on people. With increased isolation, the risks of loneliness, depression, and anxiety grow rapidly. For the elderly, it manifests more readily as the ability to get out of the home freely is often impaired.

The social, physical, and emotional benefits of living in a community such as a retirement village, with people of a similar age and surrounded by support, are manifold. Residents retain their independence but know that someone just like them is living next door. They have access to activities, companionship and care, if needed. Residents are more able to live life the way they choose.

While the number of people living in retirement villages in New Zealand

is growing steadily, there is still a large percentage of the population who may be unable to afford this lifestyle as it currently stands. Making access to a retirement village available to more people is something we believe provides an ideal solution to the social housing needs of our elderly – and housing, in general.

Potentially there may be some solutions via partnership arrangements between the Crown, local authorities, and retirement village providers. This partnership approach to housing for our elderly would not only provide more people with age-appropriate housing, but would also deliver numerous social benefits including companionship, increased security and peace of mind whilst freeing up homes in established suburban areas.

Alastair Duncan, Strategic Industry Leader, Service and Food Workers Union

With the sharemarket rising almost as fast as the ageing population, the sector is finally beginning to capture the headlines … but for all the wrong reasons. On the business pages, we see the record returns being made by listed providers as they and the other corporates continue to expand their market share.

For the elderly, the choices seem to be even more alluring … as long as you have the bank account and the mobility to genuinely choose their lifestyle options.

Got an opinion? Have your say online at www.insitemagazine.co.nz 16

April/May 2014 | www.insitemagazine.co.nz

Opinion But so far the only additional investment in the sector seems to be aimed at the legal profession as the litigation to try and overturn last year’s landmark equal pay ruling continues.

When Business NZ branded the Kristine Bartlett equal pay case a “Pandora’s box”, the allegory was perhaps apt, but not for the reasons they cited. Since Judy McGregor’s Caring Counts report lifted the lid on the sector, a conversation has begun that is long overdue. Now the workforce, through the New Zealand Nurses Organisation, and Service and Food Workers Union have begun a nationwide campaign to extend the legal proceedings to include every unionised worker, and by extension nearly every employer.

For carers, the challenge is to stand up and to validate the work they do by adding their names and their energy to the call for equal pay. Some will do that through the legal framework, some through community activism and later this year all will be able to vote for the political party which is most responsive to their needs.

For employers the challenge is similar but less clear. Do they continue to seek to overturn the Employment Court decision on the basis the sector cannot afford the cost, or do they embrace a decision which is as much about dignity and human rights as it is about pay?

Wouldn’t the operators, staff and residents be better served if that energy, and the ACA war chests, were directed in an election year toward the funder rather than continue to deny staff the right to equal pay.

Julian Cook, CEO-designate, Summerset

The recent census showed that the population of those aged 85 and over has risen nearly 30 per cent since the 2006 census – a staggering increase some have dubbed ‘the silver tsunami’, and one that the country seems ill prepared for.

There is increasing concern that the state will be unable to care for the incoming tide of dependent baby boomers. Government statistics show that this country will need an additional 12,000 to 20,000 aged care beds, on top of the current 32,000 to meet the projected increase in demand over the next 15 years.

Each district health board (DHB) sets the maximum cost of each different type of aged care bed. Nationally, the average cost of a rest home-level care bed is set at $119 per resident per day. Hospital-level care is $205 and dementia level care $173. If we assume the percentages of each care level remain the same, 20,000 extra beds will cost the tax payer more than $3 million a day. In a year that figure is above $1.1 billion.

This figure is startling, but it doesn’t include the cost of building the facilities that will house these beds. It costs on average

nearly $180,000 to build a single bed. For 20,000, that’s $3.6 billion. It also doesn’t include the replacement of current stock.

In 2010, when a DHB and aged care sector commissioned review into aged care by Grant Thornton was published, more than half of the existing beds were more than 20 years old. The accepted life of a bed is 20 to 30 years. If we were to need 40,000 new care beds to enable us to look after our elderly population it would cost society more than $7 billion. This isn’t something we can do on the cheap – our older people deserve care that treats them with dignity and respect, in care facilities staffed by dedicated nurses, diversional therapists, caregivers, and housekeeping staff.

But we’re lucky. The state isn’t going to be building these beds on its own. There are retirement village operators to help. If the current trend continues, retirement villages will be a large part of the solution to our ageing population.

Julie Haggie, Chief Executive, New Zealand Home Health Association

For most providers the biggest challenge is providing safe care for clients; the second is attracting, training and retaining enough staff to provide safe care for our clients; the third is financial survival. They are of course interdependent.

The government trumpets an improving economy, but community health and social services are frantic and collapsing.

The message from the Minister of Health remains depressingly constant: ‘Cut deficits’, which translates to ‘Cut allocations per client, cut wages, cut safety and quality, do more for the same or less’.

District health boards trying to live within their means place high and complex clients on minimum, and at times, dangerously low support allocations. In many areas they expect providers to do care work that requires much higher levels of competency or input than the organisation is funded for and can safely provide. Many of our providers feel like they are porters on a hope train which has no driver. In the worst regions the needs of the individual older person receiving care is definitely now secondary to economic efficiency.

One of the consequences is that in more than half of the DHB regions we are unable to now reward our workforce for gaining training and experience, despite the obvious need. The latest rise of 50c in the minimum wage equates to a 3.4-3.6 per cent increase in provider expenditure, without any increase from DHBs or the Government.

Providers who have been trying to pay a margin above the minimum wage, to recruit staff and to recognise increased competency, now have to limit or stop training because they cannot pay the additional 50c-$1.00 more per hour for qualification attainment.

But it is exactly that training which enables our staff to care for people with more complex skills in the community.

Last year the government openly recognised the inequity of rates paid across New Zealand, and provided 2 per cent targeted as a rate increase for the lower paying half of the District Health Boards - 11 of the 20. The worst paying of those funders would need to pass through a 15 per cent increase to bring them up to the median, so two per cent was not going to make much difference.

The remaining DHBs were able to use the increase to meet service volume increases. Providers who received the rate increase were able to use it to partly meet a combination of the 2013 minimum wage increase and the one per cent increase in the employer Kiwisaver contribution. It can’t be spent twice. This year they will go into debt. The contribution to cost pressure funding in the upcoming budget looks to be just over half of one per cent, and there is no mechanism to ensure that DHBs pass that through to their contracted service providers.

Gráinne Moss, Managing Director, Bupa Care Services NZ

The health of our population and the population’s needs are changing. We are living longer lives. Life expectancy has increased. Technology, training, drugs, diagnostic procedures, equipment, building design, research – these and more are changing the face of our health system.

Residential aged care does not stand alone – it is part of this changing and evolving system.

Our residents are changing, their needs are changing, their expectations are changing and as an industry this is the biggest challenge we face. Our residents are coming to us with higher clinical needs and their length of stay is shorter.

Meeting needs is multi-faceted. It requires well trained, kind and caring staff.

It requires funding. It requires partnership with families and with funders. It requires leadership from those within the sector and across the health system. It requires gaining an understanding of the needs of residents, evidence of performance, openness and transparency. It requires recognition of cost shifting, rising costs and the need to reward and motivate caregivers who are at the heart of meeting the needs of these residents.

All responses are abridged. To see the full responses of these and other sector leaders, please view our online supplement Sector voices: the biggest challenges facing aged care in New Zealand today at www.insitemagazine.co.nz.

www.insitemagazine.co.nz | April/May 2014

17

Editor’s Eye

Let’s snoop around...

Glenburn Retirement Village JUDE BARBACK visits Bupa’s Glenburn Retirement Village in New Lynn, Auckland.

M

y tour of Glenburn Village begins in village manager Barbara Johnson’s office. We are chatting about the usual things – how many apartments at Glenburn (55), how many residents (65) and so on, when suddenly a resident enters the room. Her name is Ruth.

She is blind, deaf and cannot talk clearly, but proceeds to tell Barbara, with the aid of mime, that she is looking forward to the next Tai Chi class. She performs some graceful stretching movement and then laughs at herself. It is lovely to watch the interaction between manager and resident.

Ruth – who is also learning Mah Jong – is the just sort of resident Barbara loves to have on board at Glenburn.

“Couch potatoes really bother me,” Barbara says. “There are so many opportunities here for residents. It frustrates me when people don’t get involved.”

The village’s motto, borrowed from 86-year-old social worker, Marie Hull-Brown, from the Mental Health Foundation, is “Wake up, get up, dress up, show up”.

Prior to taking up the manager position at Glenburn three years ago, Barbara was a secondary school teacher and then a real estate agent - past experience that she believes has given her the perfect combination of skills for managing a village.

Even so, it has been a steep learning curve, she says. With the help of Helen, who works four hours a day at the village, mainly in the area of activities, Barbara steers the ship herself.

“I’ve had to learn about healthcare, engineering, gardening – all sorts of things.”

The village is five years old and still

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April/May 2014 | www.insitemagazine.co.nz

feels relatively new. It is not overly plush and lavish like some villages, but it is comfortable, tastefully decorated, light and spacious throughout. The apartments range from $312,000 to $390,000.

The village was built next door to Bupaowned Glenburn Care Home and Hospital and is connected by an adjoining door. The care home and village are separate, but as village residents do get priority for the home, the proximity is seen as an advantage.

The declining health of residents is a challenging issue for villages, particularly when the focus of villages tends to be on living independently. Barbara worries particularly about those with rapidly advancing dementia. She keeps the family in the loop with any concerns she has, and the residents’ GPs when necessary. Glenburn residents also receive a free medical alarm – a Bupa perk.

The link with the care home appears to be a particular drawcard for couples seeking to live at the village. Barbara says she has noticed an increase in the number of couples, in which one spouse has dementia and the other is caring for them. In order to live at Glenburn, residents must be able to live independently, and so if one spouse can care for the other within the village, then that is fine. The beauty of this situation is that when the time comes that the spouse can no longer provide the level of care needed by their husband or wife, the care home and hospital is just next door to accommodate the spouse in need of more advanced care, leaving the healthier half of the couple in a secure, familiar and neighbouring environment.

This is exactly what happened for Ruth, the resident I encountered earlier in

Barbara’s office. Her husband, who suffered with dementia, eventually moved from their apartment in the village into care next door.

The couple still see each other every day, but he is able to receive the care he needs and she is able to enjoy the Tai Chi and computer classes (the village has started offering Senior Net and iPad classes to residents) and other things she enjoys.

There is certainly a lot on offer. On my tour I take in a gym, several lounge areas, a library leading out onto a petanque court, several gardens and outdoor spaces. As we walk through a lounge area adjoining the foyer entrance, Barbara tells me about the mid-winter ball they held here, which proved to be an excellent evening.

The residents come and go and flit about during my tour; one is “off to the shops”, another returns reeking of fish as he carries a bundle of smoked fish back to his apartment, another – Dorothy – is enjoying a book by herself in the library, until her husband comes to find her.

They are seemingly enjoying life at a retirement village just as intended. Barbara admits her biggest bugbear is when residents don’t get involved with all the activities that are on offer that are designed to keep residents mentally, physically and socially stimulated.

Barbara says the relatively small size of the village at just 65 residents means they have a real sense of community, although she says she’s had to learn to accept that “not everyone gets along!”

Certainly on my brief visit, however, it appears to be one big happy family at Glenburn. There are nothing but smiling faces as I pass through on my tour.

Interview

Up close and personal with Colin Mathura-Jeffree Colin Mathura-Jeffree tells INsite what inspired him to become Alzheimer’s New Zealand’s Champion for Dementia.

I

n September 2013, I became Alzheimer’s New Zealand’s first ever Champion for Dementia, a role which sees me working alongside the team at Alzheimer’s NZ to promote wider understanding and awareness of dementia. But my journey to this role began many years ago, when I was just a child.

My grandmother Eileen was one of the most wonderful women you would ever meet. She was a huge influence on my childhood and I have the most amazing memories of the brightly coloured cordials she would make for my siblings and I, and her vast vegetable garden which she was forever trying to inspire us to tend to. And she had the most beautiful smile that never left her face.

Little by little though, it became clear to us all that something was wrong. Grandma seemed to be struggling with some basic situations, and then suddenly one day she wasn’t allowed to pick us up from school anymore. Grandma had been diagnosed with Alzheimer’s disease, the most common form of dementia.

The family very much tried to keep Grandma’s dementia hush-hush. As a child I was protected from the conversations though we knew there was talk about Grandma. Myself, my brother Eric and sister Kathleen didn’t miss a beat- we would listen in as best we could.

The family was divided in what care should be provided. No one really knew what to do,

although everyone wanted what was best for Grandma. Our family tried to keep Grandma’s dementia private – it was the 80s and there was a duality of keeping the situation private and trying to get a cure. But when you know someone with dementia you know they will display themselves unnaturally in a natural situation so I felt the adults were on high alert - to protect Grandma, and to protect her dignity.

After a brave fight, Grandma passed away in 1998 when I was 26 years old. Without a doubt I believe Grandma’s experience with dementia could have been different if it was talked about more freely, which is why years later I sought out Alzheimer’s NZ with the aim of helping New Zealanders to better understand the condition and talk about it more freely. We all need to share our knowledge and share our experiences with dementia.

I’d also like to encourage New Zealanders to be a hero to the person with dementia. Know your limits and know what you’re capable of and do not try to go beyond that. Get help. Ask questions. Sharing literally is caring and the right people in life will step forward to help you if they know you need it.

Treat the person with dementia with the same love and courage you would want to be treated with in the same situation. Showing love and protection to a person with dementia should never be seen as a burden.

About dementia

»» Dementia occurs as a result of physical changes in the structure of the brain. These changes can affect memory, thinking, behaviour, personality and emotion. Because dementia is a progressive syndrome, symptoms will gradually worsen. »» While there are no accurate figures, Alzheimer’s NZ’s best estimate is that around 50,000 people in New Zealand have dementia. This is forecast to increase to 150,000 by 2050 as the population ages. »» If you are worried that yourself or someone you care about may have dementia you should see your GP. »» Support and advice is available from Alzheimer’s NZ and local Alzheimer’s organisations.

Visit www.alzheimers.org.nz or phone 0800 004 001.

www.insitemagazine.co.nz | April/May 2014

19

last word

Last Word...

Kristine Bartlett When KRISTINE BARTLETT first appeared on TV3’s Campbell Live in August she said ‘I’m not on a pedestal. All the girls are up there with me’. With the equal pay test case still before the courts Kristine speaks about what drove her to take the case and what keeps her going.

F

irst off it’s important to say how much I love my work. I look at the “girls” I work with and I know how hard they work and the fact that they are making a difference everyday for the residents. That’s special. Every day we work small miracles.

But I also know how hard it is for many of the staff. The ones who are the main income earner for their families and the ones whose pay barely covers the rent. I see the girls who are desperate for more hours or an extra shift and for who every cent is precious.

And I know that it’s not just an issue at my work. I know there are thousands of carers in the same boat. I know how hard they work. It takes a special sort of person to work in aged care and when I look around at the interest the court case has generated I realise there’s a hunger for recognition out there.

Now here I am in the middle of a court case that’s essentially about respect. A year ago I’d have laughed if someone had said I’d have my photo in the paper and on badges but now I’m comfortable with that because as well as looking after the residents, “my darlings” as I call them, I know the case has given hope to women just like me. We’ve spent our lives being undervalued and while I don’t regret the career I’ve chosen and the path I’ve taken, I do regret that it’s been nearly 50 years since the law changed and in that 50 years we’ve not spoken out sooner.

In August I’ll have worked for 21 years at our facility and while I’ve always known carers were undervalued it’s only been in recent years that I’ve taken a stronger interest in the reasons behind it. Now that I think about it, it’s clear that this idea that some jobs are “women’s’ work” has been behind the undervaluing and the underfunding of the sector. What’s amazing is that it’s taken till now for a legal challenge to be made.

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When the Human Rights Caring Counts report came out in 2012, like a lot of others, I was thrilled to hear Judy McGregor lift the lid on the sector. She said what we’ve known for years but it takes someone to speak out.

And it was really interesting to see employers also supporting the recommendations of the report. That made it easier for me when Penny Clark from the SFWU approached me and said my union was looking for someone to take a test case. I went home and thought about it and talked with my family and friends and they said “go for it.”

By then the Caring Counts report had been around for about a year. But to be honest nothing had changed for the workers. The pay was still too low and the government had turned its back on the report and its recommendations – all of which seemed pretty obvious and pretty sensible.

And the funny thing is despite all the different organisations in the sector, from Grey Power to the Aged Care Association, came out and said the report was good and needed to be acted on nothing changed. So, that left the court case.

Because of the support from my union (the Service and Food Workers Union) I’ve grown in my confidence but to start with I was pretty nervous. In fact I still am. Going to court is a huge step but I’ve been overwhelmed with the support. I’ve spent days sitting in court rooms, attending briefings and reading the piles of legal papers that are used. When I arrived at the court in Auckland there were all these women with a banner that said “Caregivers thank you ” – and it was all so exciting.

And then sitting watching the lawyers in the Employment Court and then later in the Court of Appeal I wondered how many of them had family or friends in care. Whether they understood what goes on in a home for the darlings who may have no visits from

their family and whose only regular contact is with staff. What it’s like to go home so tired you can’t cook, collapse into bed and be back caring a few hours later. As the case has developed I’ve had my share of frustration, especially when the judges have been asking questions and I’ve wanted to stand up and answer them!

And part of me, just a small part, is a bit sad. Sad that the aged care industry is apparently so ready to spend hundreds of thousands of dollars to fight the Employment Court decision when they could be working with their staff to fix the problem and sort out the funding it will take to deliver equal pay.

For me the case has moved beyond Terra Nova – in fact it’s been good to see Terry Bell (Terra Nova CEO) sit in on the case.

Now it’s really about how the Government responds. I’m still trying to work out why the DHB or the Ministry of Health weren’t there at the first hearing and how the Government lawyers can now turn up and say that all of a sudden they have to be heard.

And now we are all waiting for the judges’ decision and it turns out that I’m busier than ever. Every week I’m meeting with other carers and other union members sharing my experience and sharing stories. Their stories are mine.

We’re all women who work damn hard.

And we’re all underpaid. The difference is that we are speaking out and standing up.

Hundreds of other carers have already joined the case and with the election due this year we are looking beyond the court.

Because whatever the decision and whatever the final outcome the lid has been lifted. In Auckand the lawyer for Business NZ said the case was like opening Pandora’s Box as if that was a terrible thing when in fact it was well past time to lift the lid.

Well the box is sure open now. And it’s not going to close.

Meningococcal C can take it all away Meningococcal disease can kill in less than 24 hours. Children and young adults in New Zealand are well known high risk groups for meningococcal disease.

Healthcare professionals have 25 times increased risk of invasive meningococcal disease compared to the general population1.

Protect with Meningitec Suspension for I.M. Injection Meningococcal Serogroup C Conjugate Suspension for I.M. Injection Vaccine Meningococcal Serogroup C Conjugate Vaccine

References: 1. Gilmore et al., Risk of secondary meningococcal disease in health-care workers. THE LANCET Vol 356 pg. 1644-1655. November 11, 2000.

MENINGITEC (Meningococcal Serogroup C Conjugate Vaccine) contains 10µg of Neisseria meningitides serogroup C conjugated to 15µg diphtheria toxoid.

Meningitec is given to protect children from 6 weeks of age, adolescents and adults against meningococcal disease caused by Neisseria meningitidis (c).

Meningitec will not prevent meningitis caused by other groups of Neisseria meningitides or meningitis caused by other organisms. Meningitec has benefits and risks Do not have this vaccine if you are allergic to any of the ingredients in the vaccine including diphtheria toxoid or if you have had a previous allergic reaction to Meningitec. Delay vaccination if you have severe acute fever. Precaution if you have a reduced immune response, are pregnant or breast feeding or are elderly.

Tell your healthcare professional if you are taking or have recently taken any other medicines. Side effects at injection site – pain, redness, swelling, tenderness.

Systemic side effects – tiredness, irritability, decreased appetite, vomiting, diarrhoea, drowsiness. Talk to your healthcare professional to see if MENINGITEC is right for you. If you have side effects, see your healthcare professional. Meningitec is an unfunded Prescription Medicine – a charge will apply. For more information call 0800 Te Arai (832 724) or visit www.medsafe.govt.nz. Te Arai BioFarma, Auckland. TAPS CH3935

Strong when wet1-6

Gentle on the budget1-6

A new generation, high performing, silver, gelling fibre dressing for infected, exuding wounds

NEW

With its unique fibre blend, the DURAFIBER™ and new DURAFIBER Ag™ range provides a combination of clinical and economic benefits that support your patient as well as your budget.

For more information please contact your local Smith & Nephew representative, or call Customer Service 0800 807 663 For patients. For budgets. For today.™

™Trademark of Smith & Nephew SN11217 (02/14)

References: 1. Dowler A. DURAFIBER Dressing Physical Properties. Data on file; 2010: report DS.10.056.R1. 2. Dowler A. Testing performed as part of DURAFIBER photoshoot. Data on file; 2011: report DS.11.187. 3. Dowler A. DURAFIBER Ag Dressing Physical Properties. Data on file; 2010: report DS.10.060.R1. 4. Barrett S, et al. Case Series Evaluation: The Use of DURAFIBER on Exuding Wounds. Wounds UK 2012, Vol 8, No 3. 5. Rafiq G. An prospective, open, multicentre study to evaluate a new fibrous silver dressing in the treatment of moderate to highly exuding chronic wounds. Data on file; 2013: report OR- DOF/28. 6. Dowler A. Integrity testing of DURAFIBER Ag in horse serum and ionic solution. Data on file; 2012: DS.12.093.DOF.