Journal of Dementia Care May/June 2020

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For all who work with people with dementia

Vol 28 No 3 May/June 2020

Graphic memoirs: going beyond what only words can say

Also inside this issue:

n The ‘personal present’ – a helpful concept of time

n How to gain confidence in assessing mental capacity

AWARD ENTRIES NOW OPEN THURSDAY 12TH NOVEMBER BOURNEMOUTH Note to entrants: We have tried to keep many of the awards categories as open as possible so that a variety of people, organisations and collaborations involved in the dementia care community are eligible to apply. This includes, but is not limited to, day care and community settings, home care providers, third sector organisations, hospitals, businesses, social enterprises, housing and extra care organisations. If you have a question, don’t hesitate to contact us.

Outstanding Dementia Care Resource This award will be made to an outstanding resource which can be shown to have transformed the lives of those living with dementia and/or their carers.

Outstanding Dementia Care Innovation This award recognises the vital role of new and stimulating innovations in developing high quality services for people living with dementia.

Best Dementia Carer This award recognises the vital role of the care assistant in providing quality care. Evidence of dedication, sensitive handling of matters of importance to residents, and career progress through training will all be taken into account.

Best Activities Co-ordinator for People Living with Dementia This award will be made to a person within a care home or community setting with more than 50% of people living with dementia who has made an exceptional contribution to the quality of life, health and happiness of all the people they work with through the activities they facilitate.

Best Dementia Care Practitioner • NEW FOR 2020 This award will be made to an outstanding dementia care practitioner (eg nurse, dementia lead or allied professional) who has demonstrated an expert level of skill, knowledge, management and leadership. They will have supported their colleagues in delivering high quality dementia care either in an acute, residential or community setting, facilitating staff training, developing person-centred care pathways and delivering improvements in dementia care practice.

Best Dementia Care Manager This award will be made to an outstanding dementia manager (or deputy) in a dementia focused environment.

They will be expected to show exceptional leadership, caring, training and management skills for the benefit of people with dementia and staff.

Best Dementia Garden This award will be made to a dementia focused garden in any setting which has outstanding features that significantly enhance the quality of life of people with dementia and staff.

Best Dementia Training Initiative This award recognises the vital role of effective training in dementia care. It will be made to an individual, organisation or collaboration that can demonstrate the value and impact of a training initiative which they have successfully implemented.

Dementia Care Champion This award will go to an exceptional person, whether they are a member of staff, a relative, person with dementia or a volunteer who has gone above and beyond and made a real difference. It could be a charitable achievement or making life better for people with dementia and relatives, or simply someone who has done great things but may not have had the recognition they deserve.

AWARD ENTRIES NOW OPEN #DementiaCareAwards

Outstanding Arts and Creativity in Dementia Care This award will be made to an organisation, collaboration or person that has developed and delivered an outstanding creative arts project, in any setting, to improve the quality of lives of people living with dementia.

Best Dementia Team This award will be made to a dementia-focused team which has developed and maintained an excellent standard of care within any care setting.

Exceptional Contribution by an Informal/Family Carer • NEW FOR 2020 To recognise the valuable contribution of family or informal carers, this award is made by the Journal of Dementia Care to a person, or group of people, to acknowledge the difference they have made. This could be to a person with dementia, to a community or nationally. This award does not require an entry from individuals, however if you would like to nominate someone for the panel to consider please do so along with 500 words to support your nomination.

Best Dementia Friendly Hospital This award will be made to an acute or community hospital which can demonstrate that it has developed outstanding and innovative services for people living with dementia admitted for treatment of medical/surgical conditions.

Dementia Friendly Employer • NEW FOR 2020 This award will be made to an employer that can demonstrate they have developed an open and supportive working culture that values everyone and who flexibly support and enable staff affected by dementia.

Exceptional Contribution by a Person/People Living with Dementia This award is made by the Journal of Dementia Care to a person, or group of people, living with dementia who live and work with incredible passion and commitment to improve the lives and wellbeing of others living with dementia, and who inspire so many within the dementia community. This award does not require an entry from individuals, however if you would like to nominate someone for the panel to consider please do so along with 500 words to support your nomination.

Best Dementia Care Home This award will be made to a care home with more than 50% of residents living with dementia which provides an outstanding environment with exceptional standards of care and support for people with dementia as well as relatives and staff, and is a well-respected place in the local community.

Deadline for entries: Friday 17th July 2020

careinfo.org/awards

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For all who work with people with dementia

Vol 28 No 3 May/June 2020

Covid-19: an unprecedented challenge

9

Covid-19 has created numerous challenges for care homes, especially where dementia care is concerned. Jackie Pool, Aliyyah-Begum Nasser and Peter Bewert give contrasting perspectives on coping with the pandemic

Lockdown can bring too much proximity

Inside this issue...

18

10

Ron Coleman and Keith Oliver give their very different reactions to life in coronavirus Britain.

While Ron longs for his own space, Keith says social connections are the answer

n Project updates & viewpoints

Deprescribing anti-dementia drugs, the French way

13

Should cholinesterase inhibitors to “improve” cognitive function be prescribed on the NHS? Jill Manthorpe and Steve Iliffe argue that the UK should should take note of experience in France, where funding has been ended for them

Better information – improved outcomes

32

14

Early detection of infections is vital if unnecessary hospital admissions are to be prevented.

Emma Sadler describes an initiative to equip live-in carers for the task

Picture perfect? Murals need careful consideration

16

Murals in care homes may look pretty but people with dementia can react badly to them.

Mary Marshall considers the pros and cons

Individual CST brings many benefits for all involved

18

37

Maintaining strong relationships between family carers and those they care for is crucial, but how? Phuong Leung says carer-delivered cognitive stimulation therapy could be an answer

Moving and being moved: dance movement therapy

20

Ros Howell believes in giving people with dementia a chance to have not just their physical needs cared for but also their emotional and spiritual needs. She sets out how dance movement psychotherapy can help

n Features

Staying afloat with the help of graphic art

22

In his graphic memoir ‘Afloat’, Nigel Baines charts the experience of caring for his mother with dementia, alongside childhood memories and thoughts about how we navigate life, ageing and the awkward bit at the end

The ‘personal present’: a helpful concept of time

25

Past and future collide with our present selves in ways that confound ordinary notions of time, argues eminent psychologist Steven Sabat. Drawing on his Tom Kitwood Memorial Address, delivered at the UK Dementia Congress, he explains the concept of “psychological time” and how it can change our view of dementia care

Regulars n Comment by Mark Ivory n News

n JDC Asks

5 6 11

n Dementia Diaries

12

28

n Perspectives Hilary Woodhead19

Always assume someone has mental capacity unless proven otherwise. In her contribution to our series on hospital dementia care, Elizabeth Champion shows how to put the Mental Capacity Act front and centre

n Research reports

35

Meeting psychosocial needs in multicultural groups

n Resources

How to gain confidence in assessing mental capacity

Tom Kitwood’s hierarchy of needs is a valuable model for working with people with dementia in multicultural group settings. Laura Bolton and Zara Quail explain their approach in one London community

4 The Journal of Dementia Care May/June 2020 Vol 28 No 3

32

n Books

n Events

37 37 39

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COMMENT

@JDementiaCare @JournalofDementiaCare www.facebook.com/ JournalOfDementiaCare Editor Mark Ivory Managing Editor Sue Benson Assistant Editor Theresa Ellmers Production Andrew Chapman Designer Rob Wheele Editor-in-chief Dr Richard Hawkins Advertisement Manager Caroline Bowern Subscriptions Tel: 020 7104 2000 subscriptions@investorpublishing.co.uk The Journal of Dementia Care is published six times a year by Investor Publishing Ltd, 1st Floor, Greener House, 66-68 Haymarket, London, SW1Y 4RF. Editorial: Mark Ivory mark.ivory@investorpublishing.co.uk Advertising: Caroline Bowern 07974 643292 caroline.bowern@investorpublishing.co.uk Subscriptions Investor Publishing Ltd, 1st Floor, Greener House, 66-68 Haymarket, London, SW1Y 4RF. Tel: 020 7104 2000 subscriptions@investorpublishing.co.uk

Subscription rate, zero-rated for VAT: £101.00 if paying by credit card or invoice £91.00 if paying by Direct Debit (UK only).

Add £20.00 mailing charge for Europe Add £30.00 mailing charge for Worldwide More details at: www.journalofdementiacare.co.uk

© HAV 2018 Ltd ISSN 1351-8372

Journal of Dementia Care Advisory Board Caroline Baker, Barchester Healthcare Professor Dawn Brooker, University of Worcester Dr Nori Graham, Vice President, Alzheimer’s Society and Alzheimer’s Disease International Tessa Gutteridge,Young Dementia UK Jo James, Imperial College Heathcare NHS Trust Rachel Niblock Dementia Engagement and Empowerment – people living with dementia Sahdia Parveen, University of Bradford Maria Pasiecznik Parsons, Creative Dementia Arts Network Lynne Phair, independent consultant nurse & expert witness Jackie Pool, Sunrise Senior Living Professor Graham Stokes, HC-One Professor Claire Surr, Leeds Beckett University Dr Amanda Thompsell, South London and the Maudsley NHS Foundation Trust Toby Williamson, independent consultant Lucy Whitman, writer, editor and trainer in dementia care

Consultant editors Professor Jill Manthorpe, Professor of Social Work, King’s College London.

Dr Hazel Heath, independent nurse consultant: older people

Older lives must not be ‘airbrushed out’ Mark Ivory, Editor, Journal of Dementia Care “The rule is for the household to hang a bunch of straw outside the door as sign of infection, and then restrict entry for forty days, and go abroad as little as possible.” o says Hilary Mantel in Wolf Hall, her novel about the rise of Thomas Cromwell in Henry VIII’s court, when a deadly contagion comes to 1520s London. “Go abroad” in this context of course means “go outside the house” and what would have struck me as a mere historical curiosity a few months ago now strikes me (minus the bunch of straw) as all too real.

In truth, the general stay at home rule for our own deadly contagion is the reason I was belatedly reading Wolf Hall in the first place. But for many of our own readers, who are essential workers, staying put has not been an option while they are well. They “go abroad” most days to care homes, people’s own homes and other care settings, and often do so in spite of a scandalous shortage of personal protective equipment (PPE). Given that epidemics are a centuries-old problem and that we have had lesser ones in living memory, we as a country seem to have been terribly unprepared for what has happened.

As I write this column, it is forecast that there will have been a marked downturn in the numbers of new coronavirus cases in the UK by the time it is published. We very much hope so. But it is also clear that care home deaths from the virus have been vastly under-reported, provoking Age UK’s Caroline Abrahams to suggest that older people were being “airbrushed out” as if they didn’t matter. Staff are anxious not just about the lack of PPE but of carrying the virus home to their families.

Testing for the virus has also been scarce, so we do not know how many people with dementia have been affected. In one of many reflections on the impact of Covid-19 in this issue of JDC, Jackie Pool comments that dementia may raise the risk of infection in the most basic of ways, perhaps because people forget to wash their hands and do not remember recommended precautions. And, as so often happens in adversity, the pandemic has also brought out the best in people: the selflessness of staff and the “outpouring of support” from volunteers and relatives described here by Aliyyah-Begum Nasser.

In a letter to health secretary Matt Hancock, co-signed by Alzheimer’s Society, leading care bodies urged the government to publish a comprehensive plan to support social care through the pandemic. “Older people’s lives are not worth less. Care home staff are not second class carers,” the letter says. These things had to be said, obvious though they seem, and sooner or later an official inquiry will have to establish what went wrong. Contagion can tear through a community now just as it did 500 years ago, but today we should have been much better equipped to respond.

S

The Journal of Dementia Care is a multidisciplinary journal for all professional staff working with people with dementia, in hospitals, nursing and residential care homes, day units and the community. The journal is committed to improving the quality of care provided for people with dementia, by keeping readers abreast of news and views, research, developments, practice and training issues. The Journal of Dementia Care is grounded firmly in practice and provides a lively forum for ideas and opinions.

Writing for JDC:

Do you have a project or survey to report, or a change in practice organisation or structure which has worked well (or not), and would you like to share this experience with others? Do you have a strong opinion you would like to express?

We welcome letters and contributions that promote discussion and debate about dementia care.

Contact the editor, Mark Ivory: mark.ivory@investorpublishing.co.uk

Vol 28 No 3 May/June 2020 The Journal of Dementia Care 5

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NEWS

News in brief Samaritans reverses Hughes appointment Charity trustees at the Samaritans reversed their decision to appoint Jeremy Hughes as chief executive after claims of a “toxic culture” at Alzheimer’s Society. Kate Lee took over from Hughes as CEO of Alzheimer’s Society in March, but Hughes’ departure was overshadowed by allegations published in the Guardian of bullying behaviour. The Unite union, which represents about 50 staff at the Samaritans, campaigned against Hughes’ appointment claiming he was unsuitable for the job because the charity was already “in the very early stages of recovering from a toxic bullying culture.” Alzheimer’s Society said it had “zero tolerance” of bullying and discrimination, adding that an annual engagement survey had shown 91% of staff and volunteers were “proud” to work there. Hughes had been at Alzheimer’s Society for 10 years and Lee was previously CEO of the cancer charity CLIC Sargent.

Negative attitudes to ageing A new study from the Centre for Ageing Better (CAB) claims that UK attitudes to ageing are “overwhelmingly negative” and that older people are “subject to a litany of damaging stereotypes”. CAB chief executive Anna Dixon said ageism had a profound effect on older people’s selfesteem, wellbeing and experience of day-to-day life. “Our new research shows that in spite of the progress we’ve made towards challenging discrimination in Britain, we still have an ingrained culture of pity, dislike and disassociation towards older people,” Dixon added. “Most of us are living many years longer than previous generations and this is a gift to be celebrated. But the outdated and harmful attitudes laid bare in this research are preventing too many people from making the most of those extra years.” For Doddery but dear? Examining age-related stereotypes, go to www.ageing-better.org.uk.

Football training drops ball heading The associations governing football in England, Scotland and Northern Ireland have said that children aged 11 and under will no longer head the ball in training. The move follows research from Glasgow University indicating that former professional footballers were five times more likely to develop Alzheimer’s disease than the general population. In a joint announcement from the English, Scottish and Irish football associations, coaches were told there should be “no heading in training in the foundation phase,” which effectively covers children of primary school age.

‘Letters with Love’ sent to care homes Following the clampdown on care home visits, children and young people across the country were urged to write to residents to provide them with some good cheer. Among dozens of initiatives are the efforts of Plymouth businessman Sam Bruty, who is running a local campaign for children and families to send drawings to residents and has so far drummed up support for around 40 care homes. “In my job I have instant access to pretty much every care/nursing home in Plymouth, so I felt well placed to be able to start this up,” he told the PlymouthLive website. Royal Star & Garter launched a “Letters with Love” campaign to encourage young people to send letters, cards and artwork to residents. The veterans’ charity decided to launch the appeal after residents in its Solihull and Surbiton homes said receiving the letters and artwork “brightens up their days”.

‘Multiplex Model’ for Alzheimer’s disease A new model of Alzheimer’s disease bringing together all the known risk factors will speed up discovery of new treatments, the research team behind it have said. Scientists from Cardiff University created the “Multiplex Model” as a new way of looking at Alzheimer’s, identifying all the recognised genetic risk factors to deepen understanding of the triggers and the development of the disease. More than 50 risk genes have been identified so far. Professor Julie Williams, director of the UK Dementia Research Institute at Cardiff, said: “We now know that Alzheimer’s can be triggered by a number of different defects in the genetic make-up. By using this multi-faceted approach, we can pinpoint our research and work even faster towards developing new therapies.”

6 The Journal of Dementia Care May/June 2020 Vol 28 No 3

Concerns over access to critical care for people with dementia As the coronavirus pandemic took hold, there were widespread concerns among people with dementia that they could be denied critical care in hospital.

Alzheimer’s Society said its Dementia Connect support line had been “inundated” with calls about coronavirus, often from people worried that they would not receive the right hospital care. Some feared that a score system for assessing whether frail people should be moved to scarce critical care beds would be misused to deny such care even to someone with mild dementia.

“As the world faces the unprecedented challenge of the Covid-19 pandemic, people living with dementia face the greatest threat,” the charity said, calling for a review of coronavirus critical care guidelines by the National Institute for Health and Care Excellence (NICE), “NICE have made it clear to us that no decisions on critical care should be taken using the

frailty score in isolation, with decisions purely based on a number,” the Society said.

“Instead the most important thing is that clinicians are expected to carry out a holistic assessment that looks at all aspects of the person’s health and wellbeing, not just their dementia or frailty score.”

While Alzheimer’s Society was seeking further assurances that the frailty score would not disadvantage people with dementia, the Care Quality Commission (CQC) said it was “unacceptable” for advance care plans, including Do Not Attempt Resuscitation (DNAR) forms, to be applied to whole groups of people.

“These decisions must continue to be made on an individual basis according to need,” the CQC said in a joint statement with the British Medical Association, Care Provider Alliance and the Royal College of GPs. Go to the Resources section (p37) for a selection of those relevant to Covid-19.

Covid-19: call to protect care homes In a letter to health secretary Matt Hancock, Alzheimer’s Society called for immediate action to stop the spread of Covid-19 in care homes.

Sent just as it was announced that 15 people died in a Luton care home after a coronavirus outbreak, the letter said that staff were struggling to cope without proper testing or protective equipment.

Care home leaders have also spoken out about the battle to get personal protective equipment (PPE) to protect staff and residents from infection during the Covid-19 crisis.

On Radio 4’s World at One (8 April) National Care Home Association chair Nadra Ahmed said the biggest challenges were staff and PPE: “Our members are really, really concerned. They’re trying to source PPE from anywhere and

everywhere and when they get it they’re paying up to 1000% more [than normal].”

Claiming that suppliers were diverting PPE supplies to the NHS, Ahmed added: “Between 20% and 25% of our staff are off at the moment because they’re either self-isolating or showing symptoms, so we’re working in this perfect storm scenario with providers doing absolutely everything they can.”

The GMB union has demanded full pay for all social care workers in self-isolation or sick due to coronavirus, as well as making them a priority for PPE. “Our carers are distraught that they have to work with little or no PPE,” said GMB care lead Kelly Andrews.

On 9 April, the Department of Health and Social Care said it had provided PPE to more than 26,000 care homes.

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NEWS

Charities face funding plunge Dementia charities are confronting a massive fall in income during the pandemic, with Alzheimer’s Society launching an emergency appeal for funds as it predicts a shortfall of £20 million this year.

By the start of April, the Society said it had furloughed 20% of its staff in a bid to prioritise frontline staff and concentrate resources on the frontline.

“People affected by dementia need our support more than ever, but the coronavirus pandemic is hitting us hard,” said the charity’s new chief executive Kate Lee. “We are launching an emergency appeal to increase our telephone and virtual support offering, so we can continue to be there for everyone with dementia, and no one has to face it alone.”

Admiral Nurse charity Dementia UK’s revenues have

also been hit with chief executive Hilda Hayo appealing for donations.

“When we need our Admiral Nurses the most, we are facing a substantial fall in our fundraising income,” she wrote on the charity’s website.

“Events and activities across the country have been cancelled or postponed.

Dementia UK receives no government funding. I am entirely reliant on supporters like you to keep the [Admiral Nurse Dementia] Helpline running.”

Services were suspended north and south of the border as dementia charities reacted to the outbreak. Alzheimer’s Society temporarily suspended all of its face-to-face or group services and replaced them with telephone support, while Alzheimer Scotland said many groups would need to be cancelled.

News in brief Wearable devices to detect dementia Alzheimer’s Research UK (ARUK) has launched plans to develop wearable devices that can detect early signs of dementia. In what the charity describes as a “global initiative to use wearables to revolutionise disease detection,” the project aims to find “digital fingerprints” which can be spotted by devices like smart watches. ARUK hopes to attract up to £100 million in investment by 2030 to build and trial a diagnostic device on a large scale. The Early Detection of Neurodegenerative Diseases (EDoN) initiative will team the charity up with organisations in data science, and clinical and neurodegenerative research to collect and analyse data relating to sleep, gait and speech patterns, among other things, so that a digital fingerprint can be devised. “Developing digital fingerprints that can be detected using phone apps or wearable technologies like smart watches would provide a low-cost approach to identifying those most at risk of disease,” said Carol Routledge, ARUK’s director of research. See JDC Asks, p11.

Care Home Open Day cancelled Care Home Open Day, which had been due to take place on 26 June, has been cancelled. The eighth Open Day, a partnership with Care England, National Activity Providers Association (NAPA), and the National Care Forum (NCF), had been due to be themed around music, arts, innovation and technology, and was seen as a chance to strengthen bonds between homes and the communities where they are based. NCF promised that next year’s event would be “bigger and better than ever before” - the 2021 Open Day will also be held in June, although the precise date was still to be confirmed as we went to press.

Scotland: progress on clinical leadership Scotland’s national framework for enhancing the contribution of allied health professionals (AHPs) to dementia care has made “great progress” towards its aim of building their clinical leadership in the field. Publishing a progress report on the Connecting People, Connecting Support (CPCS) initiative, launched in 2017 to improve access to AHPs for people with dementia, Alzheimer Scotland chief executive Henry Simmons said the aim had been to “help people understand the value and potential support an AHP could offer each person at all stages of living with dementia.” Statistics in the report show that 51 AHPs have completed an MSc module on rightsbased practice, more than 500 AHP students and staff have become Dementia Friends, and 42 AHPs have become members of Alzheimer Scotland’s Dementia Forum, a national group of AHP clinical leaders.

Assessment of dementia care environments Sisterly feelings: Eileen and Julia O’Connor celebrated National Sibling Day on 10 April. The sisters have lived together at Bryn Haven care home in Stockport since 2018, until when Eileen (left) cared for Julia who has a dementia diagnosis. Both enjoy craft activities, including making cards.

Plans to double dementia research spending Government plans to double its dementia research spending over the next decade, described in the Conservative election manifesto as a “Dementia Moonshot,” should include five key priorities, according to Alzheimer’s Society.

It has written to all MPs outlining the priorities, which include a National Network of Excellence for Dementia Care Research, transforming care through technology, prioritising prevention and public health, funding for new treatments, and building capacity in dementia research. “The government’s ‘Dementia Moonshot’ is a big step forward,” said Society chief policy and research officer Fiona Carragher. “However, it’s crucial that they allocate the funding appropriately. Research towards a biomedical cure is important but, at the same time, so is addressing the needs of people with dementia today and the care they require from the NHS and social care.”

NHS Digital’s annual patient-led assessment of dementia care environments has given them an average score of 80.7%, although individual scores ranged from 45.7% to 100%. The annual survey, which looks at non-clinical aspects of NHS care such as flooring, decor and signage, assessed 889 sites against dementia criteria and gave acute/specialist sites the lowest average score at just below 80% and mental health/learning disability sites the highest average at just above 90%. While the 80.7% average for the “dementia domain” appears respectable, other domains assessed in the patient-led assessment did better: cleanliness (98.6%), food and hydration (92.2%), privacy, dignity and wellbeing (86.1%), condition, appearance and maintenance (96.4%), and disability (82.5%).

Poor dental health and dementia Poor dental health is associated with dementia, claim researchers, who suggest that dementia-related brain damage can be microbial in origin and that bad oral health may provide a reservoir of these microbes.

Working on this hypothesis a research team led by Dr James Caffrey, University of North Texas, looked at more than 200,000 new dementia cases and found that a history of chronic dental problems raised the odds of dementia. Conversely, dental interventions that quickly restored oral health lowered the odds of dementia. The study was published in the journal Experimental Biology and Medicine.

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Local councils urge government to show commitment to social care Local council leaders urged the government to show the same commitment to social care as it showed to the NHS in the March Budget delivered by chancellor of the exchequer Rishi Sunak.

While Sunak said the NHS would get “whatever resources it needs to cope with coronavirus,” there was no similar pledge for local authority social care nor any sign of the widely hoped-for long-term plan for funding it.

“It is clear that local government needs the same commitment the NHS has

received from the chancellor today, that it will get any immediate financial support it needs to help adult social care services keep vulnerable residents safe and reduce pressure on the NHS,” said Ian Hudspeth, chair of the Local Government Association’s community wellbeing board.

Although the Budget did include an additional £5 billion for the NHS and councils to fight coronavirus, Alzheimer’s Society said the pandemic risked turning the social care crisis “into a catastrophe”. Policy director

Sally Copley said: “The fact that the chancellor appears to have completely ignored social care is astonishing and crushing for people with dementia.”

The government said £2.9 billion of the emergency funding would go to strengthen care for vulnerable people and free up 15,000 hospital beds. Health secretary Matt Hancock wrote to MPs in early March with a view to initiating cross-party talks on social care in May, but the fate of these was unclear as we went to press.

Dementia expected to double by 2050 despite healthier lifestyles Healthier lifestyles have led to a reduction in the prevalence of dementia in Europe over the past 10 years, but the number of people living with dementia is still expected to almost double by 2050.

Figures from Alzheimer Europe (AE), published in its new yearbook, indicate that there are 9.78 million people with dementia in Europe as a whole, which is lower than previous estimates putting the number at 10.93 million.

But AE’s analysis still suggests that the numbers of people with dementia across Europe will still soar to 18.84 million over the next 30 years.

AE executive director Jean Georges said healthier lifestyles, better education and AI and risk assessment: Artificial intelligence technology may be able to assess a person’s risk of developing Alzheimer’s disease based purely on information gathered from routine visits to their GP. Scientists from Indiana University, writing in the Journal of the American Geriatrics Society, say that they have had a significant degree of predictive success from running people’s electronic medical records through a specially developed machine learning algorithm. “The great thing about this method is that it’s passive, and it provides similar accuracy to the more intrusive tests that are currently used,” said lead researcher Malaz Boustani, a professor at Indiana University School of Medicine. “This is a low cost, scalable solution that can provide substantial benefit to patients and their families by helping them prepare for the possibility of life with dementia and enabling them to take action.”

improved control of cardiovascular risk factors appeared to have contributed to the reduction in dementia prevalence. But he added that services must be prepared for rising demand.

“Our report demonstrates that the number of people living with the condition is set to increase substantially in the years ahead, which will only place greater pressure on care and support services unless better ways of treating and preventing dementia are identified,” he said.

“If people with dementia, their families and carers are to receive the high-quality and person-centred care they need, governments must ensure their health and care systems are ready to meet this demand and greater.”

Lack of non-drug therapies in hospitals Four in every 10 hospitals fail to offer patients with dementia non-drug therapies to alleviate distress, despite official guidelines that they should make a range of nonpharmacological approaches available.

According to figures obtained by the Pharmaceutical Journal, under a fifth (17%) of the 87 acute trusts which provided data offered all the non-drug therapies suggested by the National Institute for Health and Care Excellence (NICE).

Just under 45% of acute trusts said they offered one or more of the therapies in NICE guidance, but 39% said they did not offer any, results described as “a concern” by Dementia UK head of research Karen Harrison Dening.

“Depending on where you are in the country, you could have a very different experience of dementia care,” Harrison Dening added. “Some services might say they provide cognitive stimulation therapy, for example, but you often find it’s not open to everyone, but targeted towards only a few individuals or in certain circumstances.

“It needs to be mandated in all localities that all services and providers work together in a proper strategic way.”

8 The Journal of Dementia Care May/June 2020 Vol 28 No 3

Covid-19: a Physical health and well-being Dementia-related behaviours, increased age and common health conditions that often accompany dementia may increase risk for Covid-19. For example, people with dementia may forget to wash their hands or take other recommended precautions to prevent illness.

There are some simple steps to support people who are living with dementia, while this situation lasts, relating to infection control, reducing the impact of social isolation, and paying attention to physical health and wellbeing. Here, I will focus on the last of these.

First, exercise is believed to protect the brain by reducing cortisol levels in the body, cutting vascular risk, and increasing the growth of nerve cells related to memory. People who are inactive are at a greater risk of dementia because they don’t get the extra protection exercise confers. Support indoor exercise with walking trails that lead to interesting objects and encourage meaningful activities like movement to music, bowls or skittles.

Second, manage high blood pressure because stress on the circulatory system increases the risk of neurodegeneration.

Support relaxation techniques through the use of apps, YouTube and other online guided practice. Offer hand massage using hand cream scented with relaxing aromas such as lavender. Ensure good hydration by offering regular opportunities to have favourite drinks, yoghurts, jellies, smoothies, ice lollies etc Keep blood sugar in check as having more sugar in your blood stream means more sugar in your organs, including the brain. Just as diabetes can damage other organs in the body, it also damages the brain.

Support continuing good nutrition and any diabetic regimes for specific individuals.

Third, support good sleep,

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9: an unprecedented challenge Covid-19 has created numerous challenges for care homes, especially where dementia care is concerned. Jackie Pool, Aliyyah-Begum Nasser and Peter Bewert give contrasting perspectives on coping with the pandemic trying to maintain a familiar routine that the person finds reassuring and comforting, including a plan for night-time preparation for sleep. Also significant for wellbeing is a “do-able” activity programme that provides a range of engagement opportunities. If you are a group care setting, consider asking entertainers who normally visit to provide you with remote sessions, for example through video via livestreaming services such as FaceTime or Zoom.

Finally, don’t forget the importance of attending to the wellbeing of care workers and support staff. A team-working partnership approach that provides regular communication updates, clear guidance as well as an empathic and validating response to their own concerns will reduce carer stress and potential burn-out.

We will all get through this by working together!

Jackie Pool is director of memory care, Sunrise Senior Living

Knowing our residents has been fundamental Like others we’ve been fighting an ongoing battle to overcome coronavirus. The challenges are many and varied but are particularly profound when it comes to providing care for people with dementia.

Routine and familiarity are often a great comfort for our residents. Our decision to restrict visits from friends and relatives was incredibly tough, but of course we had to prioritise the risk of infection spread over the risk of a negative impact on mental health and wellbeing. It was a heart-breaking decision to make on behalf of our residents, particularly as for many of those with dementia visitors offer a rhythm and comfort that each day is built around.

Left to right: Jackie Pool, Aliyyah-Begum Nasser, Peter Bewert

To enable engagement with loved ones, we’ve equipped our homes with tablets to facilitate video calls, allowing residents to stay connected while also giving comfort to their families. We have also seen an incredible amount of connection taking place through social media – with videos, photos, and even letters from grandchildren who are off school being posted for us to share with residents.

Government guidance to implement physical distancing for all has been a challenge and has not been easy to explain to some of our residents with dementia. Restrictions on movement around the home can be upsetting, as can the need to manage or avoid those important sensations of touch and closeness.

Knowing our residents, their context, history and behaviours, has been fundamental to enabling appropriate infection control to take place in the home. But, at the same time, staffing levels are likely to be stretched as the prolific spread of Covid-19 sees staff self-isolating or tending to family members in need. In some circumstances, we may need to bring in staff who are unfamiliar to residents.

Of course, this brings up significant issues in terms of continuity of care. The outpouring of support from volunteers and from relatives who have offered to move on to the site to support us is heart-warming and does go a

long way to giving all of us comfort about what the future may hold.

Aliyyah-Begum Nasser is operations director at Askham Village Community in Cambridgeshire.

Keep calm and know fact from fiction The prolific amount of information on social media, newspapers and television can lead to panic and hysteria. A lot of misinformation is being circulated, so go to reliable sources such as government websites to make sure you know the right information, to glean fact from fiction and follow the right advice.

It is important that we talk about any worries and concerns individuals may be having, discussing news headlines openly and freely, alleviating any feelings of concern that may have arisen. Make sure you provide emotional support.

But don’t underestimate the resilience of the people we care for. Many have lived through

wars, natural disasters and other epidemics. Members of the care team may find that they feel more reassured by talking with people who have lived through similar events before!

At a time where it may not be possible to go to places in person, get creative about how to keep occupied and engaged, as well as how to still have some shared experiences. You can provide activity baskets for people to keep them busy and occupied, send a “virtual” hug or bunch of flowers, watch the same movie at the same time and talk about it during or after you’ve watched it, do a virtual museum tour, and try and keep as regular a routine as possible to normalise life.

Essential workers, including those who care for people in care homes or in the community, continue to work in order to meet the care needs of our loved ones. Services may need to be changed slightly to meet the essential needs of as many people as possible and we need to be understanding about this.

Let’s continue the kindness, compassion and community connections as we support vulnerable people and each other. Together we can create meaningful moments during these uncertain times.

Peter Bewert is managing director of Meaningful Care Matters

Care and Covid-19: Is the sector up to the challenge?

In this Investor Publishing Webinar on April 6, Professor Martin Green paid tribute to the way the whole social care sector is responding to the pandemic, while calling for greater recognition of the sector’s vital contribution as well as the resources of Personal Protective Equipment they desperately need. Distribution of this vital equipment needed to be equitable and based on need, not on whether the setting was NHS or social care, he said. He expressed hopes that after the pandemic there would be greater recognition of the equal importance and interdependence of NHS and social care, and of the skills and value of the social care workforce. But this optimism needed to be tempered because the pandemic was bound to be followed by a deep recession, he said.

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Dear Alzheimer’s When my book Dear Alzheimer’s was published last year, I thought that would be my last communication with you. But now you have recruited a new, insidious ally into your invisible army of mayhem and grief, namely coronavirus, I thought I would write to you again.

Let me say quite plainly to you, we have many more allies than you and ours are united to ensure that we stay as safe as possible so that neither you nor your wicked partner gain the ascendancy. Our true friends and our caring communities are standing alongside us, assisted by technology that all of us are now embracing to combat you more confidently.

We need to stay physically distanced but socially connected You have worked hard to cause me and others to be scared and anxious and for some your long-established cousin depression has revisited. But the human spirit is resilient and we will emerge stronger than you. We are told to “socially distance” – I’m sure you are putting these words into people’s minds but my advice is instead to stay physically distanced from others but socially connected.

By doing this we will emerge back into the light from this tunnel that we are all treading carefully along. We must protect our safety physically and psychologically because when your ally is defeated, we will resume our very best efforts, united against you “Dear Alzheimer’s”.

Your socially connected antagonist Keith Oliver n Keith Oliver is an Alzheimer's Society ambassador; Ron Coleman is a Dementia Diarist.

Lockdown can bring too much proximity Ron Coleman (below) and Keith Oliver (left) give their very different reactions to life in coronavirus Britain. While Ron longs for his own space, Keith says social connections are the answer hen I returned to the Isle of Lewis in February, it had not crossed my mind that my life was about to change in ways that would a couple of months earlier have seemed impossible. I had left the Island to visit my very sick mother in Dundee and by the time I came back home I was a 62-year-old orphan full of the pain.

We travelled back to Dundee for mum’s funeral in early March, the same day as the first person died in Scotland from coronavirus. This happened in Dundee too. So, the day after the funeral, aware that things were changing quickly, we headed once more to our home on Lewis.

All three of us started showing flu-like symptoms and a quick call to our doctor confirmed that we should selfisolate for 14 days. During these first days of isolation I was amazed at the capacity of my youngest child to talk herself into near-death experiences, associated in her mind with a post-apocalyptic society in which under-18s ruled the world. In other words, she and she alone should be in charge of that icon of power within the family, the remote control.

As our symptoms subsided, we all realised we had probably just been victims of the usual cold virus and would live. We began to look forward to the freedom that would come to our house – or to my daughter and my wife, not to mention my dog. As for me, I’m in the highrisk group so had to continue self-isolating.

My freedom would therefore be measured by taking charge once more of the TV, the kitchen

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10 The Journal of Dementia Care May/June 2020 Vol 28 No 3

and my Alexa system. I would no longer be forced to watch endless episodes of Sabrina and would be rescued from the noise that is K pop while returning to the beauty that is glam rock.

Then I watched as things took a turn for the worse and more restrictions were imposed. For myself the second phase began when the school closures were announced and day after day I watched helplessly as my world grew smaller and smaller.

Having a cognitive impairment does not as yet allow me to opt out of my responsibilities as a husband and a father. I know this to be the truth because both my

Can I handle my splendid isolation being so badly disturbed, even by the ones I love? daughter and my wife have told me so. Indeed, it seems to me that my responsibilities are a moveable feast subject to what these most important people in my life have said they are.

In the very small world of my house I confess that I have found my little home office is my refuge from the overcrowding that is our shared space. One of my great fears is that my growing intolerance of people, which had been happening before this crisis started, will be turned inward more and more on to my family.

Being forced to remain

housebound takes its toll on us.

For the majority of people it is an unfamiliar feeling to be stuck in the house, but to those of us with cognitive impairments, dementia or other neurological problems this is often our norm and it will be interesting in the months ahead to see who deals with it best. In my house I think it will be me as being on my own creates no great hardship. Indeed, the question for me will be, can I handle my splendid isolation being so badly disturbed, even by the ones I love?

By the end of the first week of lockdown, I had already retreated either to my bedroom or my study for the bulk of the day, braving our shared living space only at meal times and for the dread family house meetings that my wife (who was a psychiatric nurse after all) has inflicted upon me and my daughter on a daily basis to ensure our mental wellbeing.

Personally, I think these meetings may well be the cause of a mental breakdown rather than preventing it. My feelings were summed up best during one of my regular Zoom meetings by a friend with dementia, who told us she replied “no” a bit too quickly when her daughter invited her to move in during the lockdown. Her daughter had been a little upset, but if only I was able to upset my family in such a way!

The saving grace for me has been the attitude of my dog, who hates his space being invaded by those two strangers and so spends much of his time lying on the bottom of my bed in silent sympathy with my plight. n

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JDC asks...

Caring well for people with dementia and preventing the condition in the first place are among the major challenges of our time. How important will technological innovation be to success? echnology is going to transform the way we think about dementia. To date we have been quite slow to take advantage of technologies that already exist.

Items such as smart phones and tablets, voice-activated assistants and even gaming systems that use gestures to control them, have all been shown to benefit people living with dementia.

These items are available right now but because they are not viewed as medical devices, they are not easy for people to acquire due to cost, need for training and support and internet access. Using these everyday devices could rapidly change our expectations of life with dementia from one of dependency and care to self-management and independence.

Building on the everyday devices, we can use the data collected to create a mix of personalised human and technological support. This could include physical assistance from robotic devices or smart home technologies to complement input from family and friends. We can also expect much more use of remote participation in group social and leisure activities, support groups and videoconsultations with health professionals.

In addition, we can expect greater use of artificial intelligence (AI) to move forward our thinking about dementia. Currently we are using machine learning to examine large sets of data from clinical assessments and brain imaging to improve early detection and better target interventions.

In future this will focus

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From left: Arlene Astell, Grant Gibson, Carol Routledge, Ron Coleman and Ramin Nilforooshan

more on predictive factors with a view to preventing dementia. This could include potential technology solutions to the cognitive difficulties people face, perhaps through brain-computer interfaces or implantable devices.

Professor Arlene Astell is director of the DATE (Dementia, Aging, Technology and Engagement) Lab in Toronto echnology has been identified as a key feature of dementia care, with local authorities making significant investment in technology-enabled care.

Innovative technologies such as smart care platforms and social care robotics have been identified as a priority across several national dementia strategies.

Yet this hopeful rhetoric, that technology will solve the crisis in dementia care, doesn’t meet the reality of technologyenabled care on the ground.

For example, the recent ATTILA trial of technology in dementia care found that despite large investment, assistive technologies neither delay entry into residential care nor provide cost effective care. Such findings suggest that technology innovations are unlikely to provide the magic bullet solution seen in policy rhetoric.

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Alongside technological innovation, we need to change our thinking about how we deliver technology-enabled care. Research indicates that successful technology use is characterised by people with dementia and their carers “tinkering with” or “bodging” technologies, creatively adapting them according to their individual circumstances.

Services need to respond in a similar manner, adapting provision to suit individual needs. However, the research also suggests that both services and the devices they provide will need to change significantly to achieve this.

If innovations in technology-enabled dementia care are to be successful, we also need to explore as a priority how technologies and the services providing them - can be used in more individualised, adaptable and person-centred ways.

Dr Grant Gibson is lecturer in dementia studies at the University of Stirling n 2017, research by the Lancet Commission showed that around a third of dementia cases could be prevented if it were possible to eliminate key lifestyle and health risk factors for the condition. We believe technology has a huge role to play in helping people reduce

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their risk of dementia and in changing public perceptions.

Cardiovascular exercise is a great, accessible and fun route to risk reduction. Now more than ever, with many people at home due to the coronavirus outbreak, it’s important for people to keep active – while maintaining social distancing, of course.

Recently Alzheimer’s Research UK teamed up with the sports company, Garmin, to encourage people to stay active, no matter what their age or fitness level. Using a smart watch is a great way to track progress, stay motivated, and encourage anyone to get into good habits to achieve their individual fitness goals whether to simply stay active or for bigger challenges.

We have also launched an initiative to revolutionise the early detection of diseases like Alzheimer’s. The Early Detection of Neurodegenerative diseases (EDoN) initiative will harness the growing power of digital health technology and big data to revolutionise how we develop early tests for these diseases.

Developing technology that can detect digital fingerprints of diseases, using phone apps or wearable technologies like smart watches, would provide a low-cost approach to identifying people before they

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develop symptoms.

Identifying the very earliest changes in these diseases would transform research efforts today, giving us the best chance of stopping these diseases before the symptoms of dementia start to get in the way of life.

Dr Carol Routledge is director of research at Alzheimer’s Research UK s I write I am sitting in my house like many others in lockdown, having been advised to selfisolate for 12 weeks. I’ve written a diary about it elsewhere in this issue of JDC but, added to dementia, these weeks sometimes look almost impossible to navigate.

Without technology my selfisolation would indeed be mission impossible.

My artificial intelligence (AI) unit is at the centre of my life from the moment she wakes me up with the music I enjoy to giving me a news update, telling me what meetings I have that day, reminding me to take my meds - oh, and to have a shower.

She doesn’t pick the clothes I wear yet, my wife does that, but she does brain training that keeps my mind active, and she allows me to hear music and play the books I am listening to (I can no longer read). If the temperature falls below a set figure she will turn the heating up. I can ask her to order my shopping at the local shop which will deliver it to me on that day.

I use technology all day. I use a voice program to write, I can boil the kettle or turn lights on and off by using my voice. I feel in control and secure that, as pressure builds up on services over the coming weeks, I will be doing my bit to remove pressure on services that, without my AI, I would need myself. Could this be a way forward? I will leave that for you to decide - I have already made my decision.

Ron Coleman is a Dementia Diarist and Amazon Alexa user

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lready more than 50 million are living with dementia worldwide with that figure set to more than treble by 2050. Health care systems will struggle to support this number of people if we do not make the most of what new technology has to offer.

At our NHS trust, we have been trialling a network of digital devices in combination with artificial intelligence in people’s homes. This has allowed us to remotely monitor the health of people with dementia and provide appropriate support.

The technology has alerted us to range of health and wellbeing issues, such as infections and changes in behaviour, enabling early detection and intervention, and allowed us to monitor the effects of new medications.

Carers have felt better supported and crucially the wellbeing of people with dementia has improved.

The potential of this technology to provide large populations with healthcare tailored to their needs at a cost that could be afforded by health care systems is clearly huge.

Artificial intelligence (AI) can help us to better measure brain atrophy in MRI scans and more sophisticated digital memory tests will eventually replace pen and paper ones to help us improve diagnosis.

Eventually, technology in the home could help us to identify a person developing dementia before they have developed clinical symptoms.

Early diagnosis could then help people plan and prepare for their future and increase their access to new drug trials, often targeted at those with very mild dementia.

Professor Ramin Nilforooshan is consultant psychiatrist at Surrey and Borders Partnership NHS Foundation Trust and affiliated to the UK Dementia Research Institute Care Research and Technology Centre.

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12 The Journal of Dementia Care May/June 2020 Vol 28 No 3

Dementia Diaries People living with dementia from groups in the DEEP network are using a voicemail number on their phones to record their thoughts and experiences of living with dementia, wherever and whenever they feel like doing so.

This time we feature three of the Diarists – Stephen, Agnes and Chris – reflecting on the coronavirus crisis. They’re surprisingly positive and pragmatic!

First, Stephen Tamlin: “A bit of bad news really.

Our COPD club has been suspended for three or four weeks because of this coronavirus outbreak… But there you go, it’s for our safety, because people with breathing problems and COPD are more vulnerable than anybody else really. So, you’ve got to keep away from some things...

Hopefully next month will be the proper spring, proper spring weather and the coronavirus will probably just go as quick as it came I think…”

Next, Agnes Houston finds a real silver lining in the cloud: “Joanna, my PA, started two weeks ago to cancel most of my commitments due to my condition, and then, with this coronavirus, the ones which will have to be cancelled in April. So I look at my diary, and instead of having that dread of ‘Oh no, my pain’s going to get worse’, I am putting things in place to keep Agnes’s pain occupied. Learning a new crochet stitch, doing arty things, bringing my planters inside so that I can play with the soil… And also, with all these cancellations, it’s giving me time to process what I’m involved in and what will need to desist, and so I can be more… ‘choosy’. It’s going to be MY choice, I’m in the driving seat of what is important to me … So yes, every cloud has a silver lining…”

And, finally, Chris Maddocks (who is currently using crutches) tells us about an act of kindness by a stranger, who helps her get back to her London hotel… She finishes her story with this reflection: “Smile and be kind, because it costs nothing but means an awful lot. Especially…with the coronavirus, because there are so many people who live alone. And I’ve just left a friend of mine I’ve been staying with who lives alone, she has no family. So just look out for other people and just pay forwards an act of kindness if you can. And certainly look out for people living with dementia, and also their carers, because having to self-isolate and stay indoors is not fun for anybody. So let’s just see what we can do to help one another.”

The Dementia Diaries project was started by On Our Radar and is now part of DEEP, ‘The UK Network of Dementia Voices’, with support from Innovations in Dementia.

Find out more and listen to the Dementia Diaries at www.dementiadiaries.org, or on Twitter @dementiatweets. For more information about DEEP, visit www.dementiavoices.org.uk.

Finally, are you - or do you know someone who is - living with dementia who may like to become a Diarist? We’re always looking to recruit more people, and it’s very simple to record your own reports. Or you may have ideas about using the Diaries for research, media, education or other projects. If so, do contact philly@myid.org.uk. Thank you for your support!

Philly Hare, director, Innovations in Dementia

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Deprescribinganti-dementia drugs, the French way Should cholinesterase inhibitors to “improve” cognitive function be prescribed on the NHS? Jill Manthorpe and Steve Iliffe argue that the UK should take note of experience in France, where funding has been ended for them wenty years ago, the French journal Prescrire International said of the cholinesterase inhibitors that their effects were “only moderate and of doubtful clinical significance” (Anon 1999). Nothing much has changed, judging by the French government’s decision to stop reimbursing its health care system for prescribing this group of drugs, which are claimed to improve cognitive function (BBC 2018, Walsh et al 2019).

Prescrire is a monthly medical journal which reports on developments in diseases, medications, and on medical techniques and technologies. It contains no advertising, unlike most medical journals, and its nearest equivalent in the UK is the journal Drugs & Therapeutic Bulletin.

The French government’s move, made in 2018, has attracted controversy, with a jointly authored article stating that the “main French scientific and medical societies and professional associations want to state here their deep disagreement regarding this unfair decision” (KrolakSalmon et al 2018). In the UK, the BBC covered the decision in

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n Jill Manthorpe is professor of social work and director of the NIHR Health & Social Care Workforce Research Unit, King’s College London, and Steve Iliffe is emeritus professor of primary care for older people, University College London.

its Radio 4 programme Inside Health on 17 October 2018, presenting arguments on both sides and including information about the National Institute of Health and Care Excellence’s (NICE) approval of the drugs (BBC 2018).

Cholinesterase inhibitors have been prescribed to millions world-wide, but they have been controversial because the evidence of their benefit is so limited.

Cholinesterase inhibitors may seem effective for some individuals, for a time, but their overall clinical benefits appear negligible when a large group of people living with dementia is studied.

In 2014, Hugh Rickards, a consultant neuropsychiatrist in Birmingham, posed himself the question: “If a patient were sitting in front of me with this disorder, how best could I

inform the discussion about whether or not to prescribe these medications?” He reviewed the literature and came to the conclusion that cholinesterase inhibitors had a mild beneficial effect of doubtful realworld significance on cognition, but with a higher chance of side effects in people living with Parkinson’s disease and Lewy body disorders.

There was a similar, but less marked, cognitive benefit in vascular dementia, while people living with mild cognitive impairment (MCI) tended to benefit from the drugs but showed no difference in the “conversion to dementia” rate. Cholinesterase inhibitors did not affect behavioural and psychological symptoms in people living with dementia.

Finally, Rickards noted a synthesis of research studies which calculated the probability of a randomly chosen person with dementia achieving significant benefit on treatment when compared to a placebo, i.e. taking something that looks like the treatment but with no active ingredient. The probability was expressed as 1.0 being “certain of benefit” and 0.0 being “certain of no benefit”.

Weighing up the probabilities For people with Alzheimer’s disease the probability of cognitive benefit was 0.58 and for overall functioning 0.55.

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The probability of harm, leading to withdrawal from the research, was 0.56. In summary, “probability of benefit” was roughly equal to “probability of harm”. Rickard ended by saying “patients and carers may have specific viewpoints on these probabilities in terms of their own values and these should be discussed”. This is wise, we think, but hardly a ringing endorsement of the drugs.

The decision of the French government to stop funding cholinesterase inhibitors is understandable, but it set off a polarising political row.

The “cold-hearted” but scientifically minded guardians of the public purse point to the weakness of the evidence as justification for withdrawing their support, while the drugs’ “humanitarian” advocates – some clinicians, some people living with dementia, family carers, and the manufacturers – amass anecdotes about the ability of cholinesterase inhibitors to stabilise or reduce distressing behavioural and psychological symptoms.

Commercial interests and biases aside, underlying this political conflict are two problems with scientific knowledge. The first is that basic science seems to have been barking up the wrong biological tree; a single cure for Alzheimer's disease is unlikely to be found and the approach to drug development for the dementias needs to be reconsidered, a task for the new UK Dementia Research‰

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‰ Institute, perhaps. The second is a wider crisis in medicine, which has assumed that an ever-deeper knowledge of subcellular biology coupled with information technology will transform human health.

Unfortunately, this approach is not yet making great advances, and we need to be wary of claims of great promise for it.

France was the first European country to develop a national dementia plan. It now hopes to shift priorities (and resources) from a drive for ever earlier diagnosis and treatment to a more personcentred approach. This would fit with an understanding of dementia as a disorder that unfolds over the life course, shaped by exposures to harmful (but also protective) factors which accumulate over time, as described by the Lancet Commission (Livingston et al 2017).

More resources would be welcome in the UK too and with extra interest in research from Boris Johnson’s government it would be timely to think about how these might be spent.

Meanwhile, we should watch the French experiment in deprescribing the cholinesterase inhibitors with interest – it might just work. n References Anon (1999) Rivastigmine no better than donepezil. Prescrire International 8 47-48.

BBC (2018) “Inside Health”, Radio 4, 17 October. www.bbc.co.uk/programmes/m00 00qlz Krolak-Salmon P, Dubois B, Sellal F, Delabrousse-Mayoux JP et al (2018) France Will No More Reimburse Available Symptomatic Drugs Against Alzheimer's Disease.

Journal of Alzheimer’s Disease 66(2) 425-427.

Livingston G, Sommerlad A, Orgeta V, Costafreda SG et al (2017) Dementia prevention, intervention and care. The Lancet Commissions 390(10113) 2673-2734.

Rickards H (2014) Do Cholinesterase Inhibitors work?

Journal of Neurology, Neurosurgery & Psychiatry 85(8) e3.

Walsh S, King E, Brayne C (2019) France removes state funding for dementia drugs. British Medical Journal 367 l6930.

14 The Journal of Dementia Care

Better information – improved outcomes Early detection of infections is vital if unnecessary hospital admissions are to be prevented.

Emma Sadler describes an initiative to equip live-in carers for the task t the Good Care Group we provide live-in care services for older people, and 53% of our clients are living with a form of dementia. If they catch an infection, it can have a farreaching impact on their health and wellbeing.

As part of our overall commitment to quality we regularly review our client incident data and in early 2017 began to see that urinary tract infections (UTI) were the number one reason older people in our care were admitted to hospital. UTIs were also the cause of many falls, incidents of distressed behaviour and periods of being generally unwell.

For our clients who wish to receive care in the comfort of their own home, hospital is one of the worst places they can be. It is widely recognised that people with dementia do not fare well in acute hospital settings; they can be confusing, distressing places, and people do not always bounce back to their original state of health following a stay.

It is for this reason that we have worked hard over the past two years to reduce incidents of infections, focussing first on UTI and more recently on chest infections.

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Spotting infection early Our quality assurance team recognised that live-in carers were well placed to identify signs and symptoms of a UTI, but also saw that there was an opportunity to improve the quality of information they

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passed on to healthcare professionals.

For example, an all-toocommon narrative was that one of our professional carers would report to the GP that their client was out of sorts; they would then be advised that the older person should be monitored. Later in the day (often out of hours) the older person would become acutely unwell, our carer would telephone 111 and communicate their concerns to an out of hours doctor unfamiliar with the person, who would then have to go to A&E and possibly be admitted to the hospital.

Improved quality of information We wanted to help our professional carers give more precise information about what was wrong with the older person, so we introduced Insight Urinalysis testing kits and trained the carers to use them. These kits have a dipstick that can be dipped into a urine sample to capture information about potential abnormalities. Our carers are not diagnosing UTIs, but they are able now to pass on a better quality of information to medical professionals.

As a result, professional carers can give GPs information not just about symptoms they have observed, but also the levels of various substances such as proteins and ketones in the urine. We have typically found that healthcare professionals are able to

respond quicker to this type of information, enabling swift treatment for clients at home.

The kits are low cost and easy to obtain. An important feature of the planning process was to ensure that the training strategy we devised suited the needs of a remote and spreadout workforce. We provide care for almost 400 people across England and Scotland and so kits had to be packaged up centrally and manually posted to each placement.

We opted to take six months to introduce the kits to one locality and then another, taking time before distributing them to provide resources and training videos on infection prevention, signs and symptoms of UTI and use of the dipstick kits. We also made use of online quizzes sent out in a weekly newsletter, provided face-to-face training for existing carers and introduced a module on urinalysis to our mandatory induction training for all new staff.

Encouraging outcomes We were delighted with the outcomes we achieved, which included reducing emergency interventions for UTIs (involving a 999 call or ambulance call-out) by a staggering 68%. A 32% reduction in overall UTIrelated hospital admissions was also achieved.

Our analysis indicates that fewer emergency n Emma Sadler is head of quality assurance at the Good Care Group.

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Figure 1: Client trajectories with a UTI pre- and post-implementation of urinalysis kits

interventions resulted in a 77% cost saving for the NHS, in terms of support for the older people with whom we work, and a 28% cost saving through lower admission rates. These results are highly significant, not only in terms of potential cost savings and efficiencies for the NHS, but also as a demonstration of what can be achieved when social care providers seek to collaborate with healthcare services.

Most importantly, the test kits resulted in much improved health and wellbeing outcomes for some of the most vulnerable people in our society. Interestingly, in

Professional carer Sue supports Anne

the six months following the introduction of urinalysis kits the number of UTIs diagnosed actually increased, very likely because professional carers were better trained to spot potential signs and symptoms, so infections were less likely to go undetected.

Key learning A key learning point from the project was that urine samples obtained from catheter bags cannot be reliably tested for indicators of a UTI using the dipstick method. So we took a different approach with this group, training professional carers to look out for signs and symptoms unique to older people with indwelling catheters.

The second key learning point was that professional carers should be encouraged to pass on the results of urinalysis tests, whatever those results were. It was important for us to communicate that the carers were not assuming the role of healthcare professionals and should not attempt to interpret results. In order to ensure that the correct process is followed, central support teams at head

office now have a question on incident reports which they are required to fill in asking “has the GP been notified of urine test results?”.

Chest infections – the next challenge Owing to our success with the urinalysis kits, the leading cause of hospital admissions for our clients is now chest infections, so we have been exploring how we can take a similar approach to these. In other words, is there a mechanism for identifying chest infections early enough to enable treatment at home rather than via emergency intervention?

We have learned that chest infections in older people are frequently complicated by the fact that, by the time signs and symptoms have been observed, the person is typically very unwell. We have explored the health technology market, looking for something non-invasive, but with a strong track record of achieving successful outcomes.

We are currently working on a pilot programme with Feebris, a company providing

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vital signs monitoring kits powered by artificial intelligence (AI). We are completing at-home monitoring with 20 “at risk” clients for a period of three months. It involves capturing vital sign readings using medical grade sensors (including temperature, blood pressure, heart rate and oxygen saturations). The system then provides early warning signs of acute respiratory illness.

Measurements captured by professional carers in the older person’s home will be reviewed by powerful AI algorithms to ensure quality and highlight abnormalities.

Data can be passed on to a doctor to inform appropriate triage and accelerate access to diagnosis and treatment.

Feebris’ AI technology learns what is “normal” for each individual so as to deliver a more personalised and holistic evaluation of people with long-term conditions. Our hope is that, as with the urinalysis kits, we will be able to pass better quality information to medical professionals leading to better outcomes for older people.n

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Picture perfect? Murals need careful consideration Murals in care homes may look pretty but people with dementia can react badly to them.

Mary Marshall considers the pros and cons odern technology has enabled the use of lifesized wall coverings of any photograph or artwork. But I would argue for careful consideration when thinking of using a realistic mural in a care setting for people with dementia.

Take these four very different reactions to care home murals:

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Mr Hoskins was very agitated and often aggressive near a fire door covered by a mural of a beach and the sea. He wanted to get out and was prevented. He had always lived by the sea and enjoyed the beach.

Mrs Alvarez was indifferent to a mural in the café of her care home which showed a bus coming towards her.

Mrs Horowitz liked to sit quietly in the hall of her care home where there was a wall covered in a woodland photograph. She had always liked to walk in the woods.

Mrs Mackie found the mural of a street scene in the lounge overwhelming. She would avoid looking at it and did not enjoy conversations which drew attention to it.

The key point to consider from these mixed responses is that people with dementia vary hugely, one from the other.

What suits one person may not suit another, so providing for a group, as in a care home or hospital, is an enormous challenge. If people react negatively, what can you do?

Murals are often located in a corridor or lounge, so can be difficult for residents to avoid, and they cannot easily be removed or covered up. n Professor Mary Marshall is senior consultant at HammondCare. She is the author of a new e-book Talking Murals

16 The Journal of Dementia Care

Some people with dementia may be unable to understand the fact that a mural is not reality, which may not matter if they enjoy it like Mrs Horowitz, but it may upset those like Mr Hoskins. They may bring a negative experience from their earlier lives, such as severe trauma, and may have been able to block it out until encountering this “trigger”. A woodland scene might, for example, have been where something unpleasant took place and they could be very disturbed by it.

Other people may have a visual impairment and be unable to see sufficiently well to know what is on the wall. This may not matter – or it may be alarming or confusing. In some cases, perceptual problems as a result of dementia will mean that they can no longer correctly interpret what they are looking at, perhaps seeing frightening objects or things moving within the mural.

Many people with dementia react negatively to overstimulation and cannot make sense of things that are too complicated. They often struggle to pick out relevant items from a busy background or become agitated like Mrs Mackie in my example. Murals are usually not a problem to people with full cognition and no sensory impairments, but these people are rarely in care homes unless they are staff or relatives. And it is usually the staff and relatives who make the decision to have a mural.

We all come from very different backgrounds and those among us who happen to have dementia are no exception.

Some will have been reared in the countryside, others in the inner city, and still others will have come from other countries.

May/June 2020 Vol 28 No 3

The most vivid memories are from childhood and early adulthood, so background needs to be taken seriously in any design decisions.

The reactions of people with dementia can also vary hugely depending on how well they are feeling, whether they have slept well, whether they have had a good meal and so on. What may not affect them one day, may distress them another. Dementia is a progressive condition so reactions can change over time.

Managers who consider commissioning a mural will be confronted with a very hard sell from the design companies making them, whose web pages make unequivocal statements about their usefulness. They claim that murals help with reminiscence, improve environments and assist with wayfinding, among other things. Search on the internet for “murals in care homes” for numerous examples. But where is the evidence? Sadly, there is as yet no research on the effect of murals, although there is a lot of anecdotal material and any positive feedback is often quoted by design companies while not being backed up by research.

I do not intend to suggest that murals should never be used, but I do argue for great care and consideration. As with any other product in a care home or hospital setting, its usefulness often depends on the circumstances. If a mural is used as a background to a café, for example, with chairs and tables in front of it and tea and coffee available, then it may work.

But this is different from a situation in which there are no additional features to support the mural. A mural of shelves of books can be really confusing

unless there are real shelves of books as well and some easy chairs to encourage a quiet space for reading.

A mural of a wood in springtime can be confusing when it is really (say) winter or summer outside, given that many people with dementia are already disorientated by time and struggle to know what time of year it is. There is research on the emotional benefits of looking out of a window on nature, but none on whether the same advantages accrue from a fake window looking out on nature.

There are also ethical issues. Is it right to mislead people with a mural? Is it right for example to have a fake window with a view of a garden in a dull corridor? Is a mural contributing to limiting the freedom of someone with dementia by, for example, being used to conceal an exit door?

Ethical questions I think the ethical questions should be considered from three angles. The first is to refer to principles. Who is going to benefit? Does this product help people? Might this product harm residents or patients in

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some way? The second is to consult all relevant people such as the person with dementia, their relatives and friends, and the staff.

The third is to imagine that you are dealing with a different group of people. Would this mural be used for people with a learning disability or for people from a very different culture or religious background, for example? When someone’s human rights are going to be affected it is important to have an ethical protocol on file.

Other options Of course, murals can be very tempting for care home managers. A surprising number of care homes have dull décor that can make them feel very institutional, and a mural can brighten the place up and make staff and relatives feel less gloomy about it. But there are other options to think about and I will suggest a few.

For brightening up a dull environment, use a strong colour for a wall. Older people are less able to see colour than their younger counterparts, so it needs to be really “saturated”.

This can also aid an understanding of the shape of a space such as an alcove and can make it easier to see what is in front of it.

Where wayfinding is concerned, objects are the most effective. Potted plants, large ornaments, furniture, and oldfashioned things on the walls like carpet beaters, are among the items that will make a space distinctive and help some people to find their room or the way to another room.

For reminiscence, pictures and objects can be very successful. They need to be displayed at the right height for older people (who often stoop) to see them. They have the great additional advantage of being replaceable if they cause distress or do not work and can also be changed to suit residents. A 1950s picture of women in their swimsuits can generate a great deal of comment and enjoyable reminiscence; if there are residents who have been at sea,

some photographs of old liners and merchant ships can provide plenty of lively conversation.

Fire doors are best concealed by making them look the same as the adjacent walls, which can be done by removing words such as “push bar to exit,” painting the door the same colour as the wall and perhaps putting curtains up if there is a window in the door.

Ensure, though, that the escape route sign of a running man is still clear and obvious above the door.

Some murals are stuck on doors to help people identify which room is theirs. This can work well if it depicts something familiar to the individual occupying the room, but problems can arise if it needs to be changed when someone else is in the room. An easier solution is to put up a holder on the door where pictures can be inserted that make sense to each successive resident.

A personal object near the door can also help, as can the occupant’s former house name or number if the person remembers it. The actual door number used for the fire service can be put higher up.

In conclusion, stop and consider carefully the benefits and possible disadvantages of a mural. As a backdrop to associated furniture, objects and activities, all of which make sense to someone with dementia, a mural is very different from when it is used simply as attractive wallpaper.

Consider as well how very different people with dementia are, one from another, and the fact that there is a turnover of residents. Finally, give thought to the ethical issues and the possibility that people’s lives are not so much enhanced by the attractiveness of the mural as diminished by the deception involved.

For more information, download my new e-book, Talking Murals, free from www. dementiacentre.com/resources /news where you can also find HammondCare’s position paper The Use of Murals in Places Where People with Dementia Live. n

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Vol 28 No 3

May/June 2020 The Journal of Dementia Care 17

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Individual CST brings many benefits for all involved Maintaining strong relationships between family carers and those they care for is crucial, but how? Phuong Leung says carerdelivered cognitive stimulation therapy could be an answer ndividual cognitive stimulation therapy (iCST) is a cognitive and psychosocial one-to-one intervention offering mentally stimulating and enjoyable activities for people with dementia. It was developed based on the evidence for group cognitive stimulation therapy (CST) for people with mild to moderate dementia, which has been found to be beneficial for cognition and quality of life (Woods et al 2012).

Although CST is becoming more widely available, both in the UK and internationally, some people may not have access to groups, either because groups do not exist locally, or people have transport, health or mobility problems, or they are not keen to participate in such settings.

We decided to study carerdelivered iCST with the aim of evaluating its clinical effectiveness for people with dementia and their family carers. A total of 356 pairs (“dyads”) of people with dementia and their carers participated in a randomised controlled trial.

People in the iCST group received a total of 75 activity sessions (30 minute session three times a week) over 25

I

n Dr Phuong Leung is a dementia research fellow in the Division of Psychiatry, University College London, and a head of the iCST Dementia Training and Consultancy.

She developed the iCST dementia training programme and is a coauthor of Making a difference 3, Individual Cognitive Stimulation Therapy: A manual for carers.

18 The Journal of Dementia Care

weeks. Sessions consisted of a variety of themes including current affairs, being creative, word games and quizzes (Yates et al 2015). Carers were trained to deliver iCST by using the manual with guidance and key principles (Yates et al 2014).

Enhanced relationships Our findings show that iCST enhanced relationship quality between people with dementia and their carers, as measured on the Quality of the CarerPatient Relationship Scale Carers (Spruytte et al 2002).

Carers delivering ICST reported a significant improvement in health-related quality of life (QoL) (European Quality of Life–5 Dimensions (EQ-5D)) (Brook 1996) and those giving more sessions had fewer depressive symptoms (Hospital Anxiety and Depression Scale (HADS)) (Zigmond & Snaith 1983) This study did not find a statistically significant benefit for cognition and QoL of people with dementia, perhaps arising from lack of treatment adherence in the iCST group. For example, the carer-patient dyads were invited to complete three iCST sessions per week; however, only 40% of people with dementia (72/180) completed at least two sessions per week and 21% (39/180) did not complete any sessions.

Therefore, the power of the study to identify significant differences in outcomes between the iCST and treatment-as-usual groups may have been compromised (Orrell et al 2017).

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However, what we did find was that iCST offered mentally stimulating and enjoyable activity for both members of the dyad. We undertook further research through semistructured in-depth interviews with 23 pairs of people with dementia and their carers who took part in the programme.

In most cases, iCST was received positively.

Most people with dementia perceived mental stimulation as an activity that provided opportunities to keep “the brain going”, reflect, concentrate and stay alert.

They also emphasised the importance of being mentally active because “if you do not use it you lose it” and said they enjoyed doing iCST "even though like things might not stay with me… but it's brilliant".

Stimulation and laughter Some reported that the programme made them look for more information about mental stimulation: “It made me start thinking about doing what I used to do which was paintings over there, that I've done … I can get up and do things more easily.” People with dementia enjoyed doing iCST together with their carers as “you can get a laugh out of it, the barriers come down”.

Carers, on the other hand, said they thought their relative “more alert" when taking part in iCST. They found iCST helped them to frame conversations and enhanced the caregiving relationship: “Doing this kind of activities together cements our relationship and makes you

stay involved in each other’s lives”(Leung et al 2017).

From a clinical perspective, there were reductions in depressive symptoms and improvements in QoL in carers which can form the basis of a low-cost, non-drug intervention. This has the potential to prolong carers’ ability to provide care for the person with dementia and contribute to the costeffectiveness of dementia care (Yaffe et al 2002). Enhancing the caregiving relationship through iCST may reduce carers’ “role strain” (Yang et al 2014) and the risk of requiring more support and resources from healthcare services (Yaffe et al 2002). Given that iCST has a positive effect on the caregiving relationship and carer wellbeing, the programme could contribute to personally tailored home care packages, possibly helping maintain people with dementia in their homes for longer (Orrell & Bebbington 1995). iCST is an adaptable approach which can benefit a wide range of people with dementia and their carers. We believe it should be part of clinical practice in future.

Indeed, we have already started delivering the iCST training programme to family carers of people with dementia and healthcare professionals in

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PERSPECTIVES Activities in care homes are now more important than ever

n Hilary Woodhead is executive director of NAPA (National Activity Providers Association)

By Hilary Woodhead

Covid-19 has created many challenges and it has changed the way we all live our daily lives. Under government direction men and women over the age of 70 have been asked to stay at home and those who live in care homes have been shielded with doors closed to visitors.

Our Helpline at NAPA is busy, busier than ever. Usually our responders receive calls and emails from care and activity staff, arts practitioners and family members keen to talk through their ideas or their dilemmas. But over the last few weeks the nature of the calls has changed, approximately 90% of them now being about coronavirus and the impact on activity provision.

It is notable that our Helpline responders are reporting a large number of contacts acknowledging the essential nature of activity.

One caller told us: “My manager told me that great activities are really important now, because of the pandemic; she called me an essential worker! She has never said that before!”

iCST training sessions in progress

the community.

For further information, contact Dr Phuong Leung at phuong@icstdementiatraining .co.uk. Her web address is www.icstdementiatraining.co. uk n References Brooks R (1996) EuroQol: the current state of play. Health Policy 37(1) 53-72.

Leung P, Orgeta V, Orrell M (2017) The experiences of people with dementia and their carers participating in individual cognitive stimulation therapy. International Journal of Geriatric Psychiatry 32(12) e34-e42.

Orrell M, Bebbington P (1995) Life events and senile dementia. 1.

Admission, deterioration and social environment change. Psychological Medicine 25(2) 373-386.

Orrell M, Yates L, Leung P, Kang S et al (2017). The impact of individual Cognitive Stimulation Therapy (iCST) on cognition, quality of life, caregiver health, and family relationships in dementia: A randomised controlled trial. Plos Medicine14(3) 22.

Spruytte N, Van Audenhove C, Lammertyn F, Storms G (2002) The quality of the caregiving relationship in informal care for older adults with dementia and chronic psychiatric

patients. Psychology and Psychotherapy -Theory Research and Practice 75 295-311.

Woods B, Aguirre E, Spector AE, Orrell M (2012) Cognitive stimulation to improve cognitive functioning in people with dementia. Cochrane Database of Systematic Reviews 2 CD005562.

Yaffe K, Fox P, Newcomer R, Sands L et al (2002) Patient and caregiver characteristics and nursing home placement in patients with dementia. JAMA 287(16) 20902097.

Yang CT, Liu HY, Shyu YIL (2014) Dyadic relational resources and role strain in family caregivers of persons living with dementia at home: A cross-sectional survey.

International Journal of Nursing Studies 51(4) 593-602.

Yates LA, Leung P, Orgeta V, Spector A, Orrell M (2015) The development of individual Cognitive Stimulation Therapy (iCST) for dementia. Clinical Interventions in Aging 10 95-104.

Yates LA, Orrell M, Leung P, Spector A et al (2014) Making a Difference 3, Individual Cognitive Stimulation Therapy: A manual for carers. Hawker Publications.

Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 67(6) 361-370.

This acknowledgement is fantastic and, yes, activities are “really important”; in fact, they are integral to life and wellbeing, but let us not forget that they can take many forms. If care staff understand each resident’s wishes and needs, then “activities” are really just the way in which that particular person spends their day. Are they engaged, stimulated, involved, connected?

As contact with loved ones is restricted, people’s need for comfort and attachment may need attention. At least it can go some way to ensuring the wellbeing of those we support and provide opportunities for feelings of worry, loss and loneliness to be expressed and responded to. Activities at this time may need to acknowledge the sadness we are all experiencing, as well as provide opportunities for fun.

So how do most people “spend their day”? There is room for both planned and spontaneous activity, acknowledging and enjoying the everyday moments, not just organised and planned events. When a staff member can acknowledge that getting dressed is a positive activity for those they support, involving choice, conversation, connection, movement and sensory engagement, then they are contributing to that person’s wellbeing.

How do we ensure that activity and engagement remain a priority during the Covid-19 pandemic? We suggest holding a staff meeting to discuss activity provision, devising engagement plans for each resident, ensuring effective infection control practice to enable inclusion, phoning residents’ friends and relatives to plan how they will stay in touch, and recording how residents’ wellbeing has been enabled.

For FREE resources for family carers and the whole staff team: visit www.napa-activities.co.uk/membership/free-resources. Contact the NAPA Helpline by phoning 0207 078 9375 or emailing helpline@napa-activities.co.uk. For information on NAPA membership email membership@napa-activities.co.uk.

And please respond if you can to our Helpline Appeal to help meet the current need. Text NAPA20 to donate £20, NAPA10 to donate £10 and NAPA5 to donate £5 to 70085. We value your support.

Vol 28 No 3

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Moving and being moved: dance movement therapy Ros Howell believes in giving people with dementia a chance to have not just their physical needs cared for but also their emotional and spiritual needs. She sets out how dance movement psychotherapy can help ormer care home manager and Jungian analyst Angela Cotter notes in a recent book (White et al 2019) that people with dementia have a tendency to speak metaphorically. When Ruby, a participant in the weekly dance movement psychotherapy group I facilitate at Parris Lawn care home in East Sussex, watches the group’s beach ball sail over our heads and disappear behind our chairs says “well that's gone for good now”, it makes me wonder about the other things she has had to see disappear.

The beach ball as metaphor stands for something lost – not disappeared from view temporarily like the ball itself, but permanently, “gone for good”. People who live with dementia can lose all manner of things and not just the belongings they misplace.

They may lose their cognitive capacities, their memory, but also primary relationships may be lost or changed beyond recognition. Independence may be lost, the ability to make small autonomous decisions such as to take oneself to the toilet or make a cup of tea exactly when one wants to.

Even the sense of being a valued member of society may feel lost.

F

n Ros Howell is a dance movement psychotherapist and a registered member of the Association of Dance Movement Psychotherapy.

She will shortly qualify as a psychodynamic psychotherapeutic counsellor and has been working at Parris Lawn Care Home in Ringmer, East Sussex.

Dance movement psychotherapy (DMP) groups for people with dementia thrive on the creative act of listening to and looking out for possible metaphors that reveal something about the participants’ experience: their hopes, fears, losses and frustrations, as well as their joys and pleasures. These metaphors can emerge in what people say while they are in the group, as in Ruby’s comment, but they may also show up through the creative movement and gestures that occur in the session.

In many cultures, including our own, dance has long been associated with selfexpression, connecting with others and healing. DMP has built on this tradition by combining the creative use of movement and dance with a psychotherapeutic framework that allows people to explore their internal world and work through difficulties. The semistructured sessions, led by a qualified therapist, engage participants in simple creative movements that can express something of their individuality without relying on short-term memory or language skills. Instead, they draw on people’s strengths, feelings and continuing abilities.

Movement and props Working in a therapeutic framework, dance movement psychotherapists notice and validate participants’ movements, however small, and draw out themes that arise for them and the group

20 The Journal of Dementia Care May/June 2020 Vol 28 No 3

as a whole during each session. Techniques include mirroring back to residents their movements and supporting them to expand and develop whatever might be being communicated through them. Encouraging the use of rhythmic and shared movement, where appropriate, can help group members connect to others and their wider environment.

I often make use of props such as scarves, balls, ribbons and large parachute-like cloths. These props can have multiple uses: they can help facilitate movement, as in a scarf that allows the arm to travel further into space than it might without it and can evocatively suggest a wavelike motion. They can facilitate relationships, as in a ball that encourages eye contact while it is being passed round and prompts different qualities of movement such as pulling, stretching and squeezing.

Everyday objects can become props too by being invested with new meaning in the group, such as the walking stick that is passed around to dislodge the ball stuck between the chair legs and becomes transformed in that moment from a symbol of increasing vulnerability to the solution to the group’s problem.

In one session we were all holding some long brightly coloured scarves that after a while I tied together so we could move them together and perhaps feel more connected.

As the session came to an end, Arthur slowly but steadily

Ros Howell with her therapy beach ball

pulled the scarves out of everyone's grasp till he was holding the whole bundle and cradled them in his arms.

“Perhaps you would quite like to take the group with you when you go today Arthur,” I suggested, and he grinned.

The fear and frustration that people can experience when living with dementia can at times result in expressions of anger that may be hard for family and professional carers to cope with. In DMP, negative feelings can be validated and understood and strong feelings channelled appropriately, for example, kicking or hitting a ball hard or throwing down a beanbag with an accompanying sound.

Care home settings The culture of therapy can feel very different from that of social care and at times they can even seem like two languages that have no translator to help each party communicate. Nurses and care staff can be on the go all the time, attending to residents’ physical needs with a neverending list of things to do while psychotherapists focus

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Angry feelings expressed through the safe game of throwing a ball Doreen often came to the group and was an active participant, but then over several weeks, staff began to notice her mood deteriorating. She lost her warm and friendly demeanour, didn’t want to participate in activities and was at times snappy and intolerant of other residents.

movements with her hips that got bigger and I encouraged her to breathe out fully while she was doing it. She stopped saying that the pain in her tummy was unbearable but then became cross with another resident, Petra, for appearing to fall asleep in the group.

On one particular day when I encouraged her to come to the DMP group, Doreen complained of intense discomfort in her bladder and felt she needed the toilet constantly. She said she didn’t think she would be able to stay for the session as it felt too uncomfortable to sit down. I suggested she stay standing up even though the rest of the group were sitting in a circle either in chairs or wheelchairs, and I started the session encouraging everyone to move their torso in however small or large a way.

“Maybe you really want us all to be with you today?” I asked Doreen, trying to focus on her feeling. She picked up a beachball and said we should use it. The ball began to be passed between the group members with them kicking, patting, rolling, and hitting the ball, at times holding on to it and other times staging mock arguments about who should have it.

Doreen began to make figure-of-eight

less on “doing” and more on noticing and thinking.

Embedding a regular therapy group in a care home can take time and requires good communication between the therapist and staff as well as strong support from management. But it can complement the work of the care home by enhancing residents’ self-esteem and wellbeing. As one care home manager told me, DMP groups can be part of an “inclusive ethos” – “residents don’t necessarily need a great deal of mobility to join in and benefit from it.”

It may at times seem easier for psychotherapists and counsellors who deliver talking or arts-based therapies to remain working in dedicated clinics where there is no culture clash and the frame can remain as pure as possible. But, if working and living with dementia teaches us anything, it is that communication across difference requires us all to creatively adapt.

And as Isabel Menzies Lyth (1988) famously concluded from her consultancy at the nursing department of a major hospital, ideas from

When Petra got the ball, she became very focussed on Doreen and wanted to pass to her again and again. Both women used some force in their throwing and seemed to get satisfaction

psychotherapy, particularly those about unconscious processes we are not necessarily aware of but which in part govern our thoughts, feelings and actions, have much to offer organisations bearing the brunt of the stresses and strains of caring for the vulnerable people in our society.

Conclusion There are many reasons why in our society dementia continues to be seen only as “tragedy”: from our obsession with youthful, “perfect” bodies to a cultural difficulty in acknowledging we all have dependency needs no matter how independent we may feel.

There is a powerful societal fear of death as well as perhaps an over-valuing of cognition and “knowing”.

Angela Cotter goes so far as to say that the sense of “not knowing” and feeling “useless” that can come with the experience of dementia might in part be a healthy challenge to the values of our dominant culture, if only we could have a better relationship with this condition.

I want to stress the

when the other person caught the ball.

They ended up laughing and soon after the whole group became involved again in the activity.

I wondered whether Doreen had been able to relieve some of her bladder discomfort by moving and relaxing her lower torso. I also wondered whether the two women had been able to channel some of their angry feelings (ostensibly towards each other) through the safe game of throwing the ball and were left with a sense of relief afterwards.

As the session ended and each group member focussed on doing their “own dance” to the music - moving whatever parts of the body it felt comfortable to - I wondered if the other residents may have benefitted from seeing another group member find a way to feel more at ease in her body and to express feelings safely.

importance of giving people with dementia a chance to have not just their physical needs cared for but also their emotional, social, psychological and spiritual needs. Allowing them to speak of their experience metaphorically, in movement and words, might help all of us develop new creative ways to communicate with people when the old ways are not working any more.

Going back to the beachball, it is being passed, thrown and kicked around the room, moving fast, then slow, when suddenly it comes to a standstill in the middle of our circle out of reach to anyone. I could of course go and get it myself but I wait and see what might happen. “It doesn’t want to be pushed around anymore” says a member of the group. “Maybe we can all feel like that sometimes too”, I say. There are a few nods and a period of silence.

“I wonder if anyone feels like this ball, sometimes grinding to a halt suddenly after everything was moving fine”, I say. There is more nodding then I notice Mary making a forward-leaning motion with her body and

gradually she starts to inch forward in her chair. A few people in the group smile as they can see what is going to happen.

After several minutes Mary makes it to the ball, kicks it very slightly but it reaches someone else and the game is in motion again. There is a spontaneous round of applause and a smile of satisfaction from Mary.

Not all the group members contributed verbally to this session, but even their smallest movement, when treated as such, can be meaningful to both them and the group as a whole.

A participant from another group sums it up neatly: "Some people looking in might think we are just doing silly movements, but we are not!

It’s good when we do it all together. n" * Names of residents have been changed.

References Menzies Lyth I (1988) Containing anxiety in institutions: Selected essays volume 1. London: Free Association Books.

White K, Cotter A, Leventhal H (2019) Dementia: An attachment approach. London: Routledge.

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Staying afloat with the help of graphic art In his graphic memoir ‘Afloat’, Nigel Baines charts the experience of caring for his mother with dementia, alongside childhood memories and thoughts about how we navigate life, ageing and the awkward bit at the end loved comics as a youngster. I devoured them.

Quite literally once when a cousin made me bet I couldn't eat a full colour pull out of Old MacDonald’s Farm. As time moved on the comics gave way to textbooks and literature and yet now the form is resurgent with graphic novels and comics playing a significant role in adult publishing.

Words have long held the front and centre point of our communications. Images either exist on their own terms as works of art or, if standing with text,

I

are there merely as a servant illustrating the text and underlining the meaning. But there are many ways of ‘seeing’ the world. One can think of the three dimensional Polynesian stick charts that islanders used to chart the ocean. In the West we would see maps as a very real representation of something external. For the islanders the world they inhabit is integrated deeply with their lives. And so it is with the image which, together with text, can create a new way of understanding the human condition.

A way to show rather than tell As I researched for my Masters (for which this book was a final project piece) I found an increasing use of graphic narratives in patient medical discourse. The bulk of graphic novels are what might be termed illness narratives. In 2012 Dr Ian Williams coined the term ‘Graphic Medicine’ and a community was born. A community of doctors, researchers, lay people, those living with an illness, all understanding the vital role comics can play in showing rather than telling the lived experienced of a condition. A way of bridging the gap of patient experience and ‰

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Nigel Baines is a designer, artist and illustrator of over 80 children’s books. This book was produced as a final project piece for the MA in Authorial Illustration at Falmouth University. You can find out more about Nigel’s work and purchase a copy of Afloat (£10 +P&P) at www.nigelbaines.com and click on the SHOP link or book cover image.

As the book is self published it is only available currently through this outlet

‰medical language. We are all storytellers and for people going through an illness it is vital that they are still seen as such.

For me the form allowed many things to be done at once. I wanted to record some of the workingclass history I was raised in. I was able to find ways to show the impact of the illness on my Mum and the impact on me. I was also able to use visual jokes and metaphors to express things that language alone simply couldn’t do.

The carer’s perspective One of my main drivers though was to consider the carer’s perspective. People become isolated in

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May/June 2020 Vol 28 No 3

their care role with a storm of new information and new language to absorb as well as the real painful human experience of loss. At this point any chance of recognition is vital. It is that moment in watching comedy or a film or in reading where we recognise a connection between ourselves and the performer and say, “You too?”

I planned the narrative as one might do a text narrative. The story was already there so I didn’t need to create a plot arc but finding the pace and timing took a while. And what surprised me at the end was a sense of catharsis I didn’t expect. I’d found a way to externalise something internal and I’m convinced the comic form opened that door. n

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The ‘personal present’: a helpful concept of time Past and future collide with our present selves in ways that confound ordinary notions of time, argues eminent psychologist Steven Sabat.

Drawing on his Tom Kitwood Memorial Address, delivered at the UK Dementia Congress, he explains the concept of “psychological time” and how it can change our view of dementia care have learned that it is very important to try to understand the subjective experience of people living with dementia, to try to put myself in their shoes and to try to be with them so as to understand the world they are experiencing and in which they are living each moment. What is it like to see things through their eyes, to be in their position dealing with and reacting to the dysfunctions they experience due to brain damage while also having the cognitive and social strengths that they continue to possess?

If we do not understand another person’s perspective, whether or not they have a diagnosis of dementia, we cannot truly interact with them with the kind of authentic understanding and sensitivity that is required to help them in whatever ways are possible. Nor would we be able to convey the fact that we are “living in the moment” with them, making respectful and authentic contact, recognising and appreciating their personhood and its abiding value.

Following this line of thinking, it should be understood that when people living with dementia say or do something, it is possible that their actions are perfectly in tune with the surrounding circumstances. It is also possible in some instances, however, for the person diagnosed to be saying or doing something that the listener/observer does not immediately understand.

I

Misplaced interpretation In my experience, what often occurs in cases like this is that the listener makes a pathologically based interpretation about the person diagnosed. I will draw on examples I have encountered to show why I think this kind of interpretation is often misplaced.

For example, at one day centre a man diagnosed with Alzheimer’s type dementia was speaking rather rapidly and with what seemed to be great urgency and consternation, given his tone of voice and facial expressions. One of the day centre participants, who did not have a diagnosis of dementia, said of the man speaking, “He’s confused.” She said this because she did not understand what the man was trying to convey, given that the man’s words, though clear and articulated well, did not add up to a clearly coherent set of statements.

In fact, however, it was actually she who was confused about what the speaker was trying to say.

The speaker was clearly upset about something and was, at that moment, unable to convey to others exactly what it was that was upsetting to him. On a previous occasion, the same man was speaking in the same way and I said to him, “Do you feel like crying?” He replied immediately, “You’re damn right I do!”

This man clearly understood my question and his answer was perfectly in line with the emotional urgency with which he was speaking. He was not confused at all about how he felt. Rather, he was having difficulty, due to brain damage, summoning the correct sequence of words to explain clearly to others the reasons for his consternation (Sabat 2001).

The point of all this is to recognise that the brain damage that causes the syndrome called dementia can result in a person’s inability to communicate as clearly as he or she did in healthier days. This does not mean, however, that the person cannot communicate at all or have appropriate emotional reactions to situations they experience. What it does mean is that other people in the person’s midst need to help in the communicative process, in the attempt to understand what the person is trying to convey.

In the first place, we should assume that there is meaning in what the person diagnosed is saying, trying to say, or doing, and that it is our job to facilitate communication by seeking out that meaning. This applies to a variety of situations, one of which arises when healthy listeners are prone to conclude that the person “thinks it’s decades ago” and is “disoriented in time”. It is this matter that I should like to address now.

Steven R Sabat is professor emeritus of psychology at Georgetown University in Washington DC

Linear time We commonly think of time as being linear so that the past, present, and future are considered as being ordered in a fixed sequence. That is, what an older person experienced as a child or as an adult when young or middle-aged is considered to be in the past and what one anticipates happening weeks, months, or years from now is considered the future.

Just as commonly, when we talk about events in our lives that happened years or decades ago, we generally frame that discussion with a statement akin to “When I was in college I thought that…” or if a person whose current age is 80 says, “When I ‰

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It is important that we recognise that what people living with dementia say and do is often, if not always, an attempt at communicating something about their experience, be it from the distant past, the present, or related to some possible future ‰ discussed with my spouse my decision to go into business for myself at the age of 35, I said…” so that it is understood by one and all that these events happened in the past and are not occurring at the present time.

This is a very important point because in framing the sentence this way, the speaker is indicating that he or she knows that the events to be discussed took place in the past and is conveying that knowledge to his or her interlocutors. All this makes perfect sense in common everyday conversation; there is the past, the present, and the future and they exist in a strictly ordered linear timeline.

‘Psychological time’ But there may well be another way of understanding time, in addition to what we call linear time, and this other way of understanding time is termed “psychological time”. The idea of psychological time was discussed by the German psychologist William Stern (1938) when he introduced the concept of the “personal present”.

What Stern proposed was that for each person, what we call the present is “spatio-temporally neutral”; it is the unseparated here-now and what is here and now is always “determined according to the personal perspective” (1938, p93) of an individual.

What this means is that you or I can bring to the present moment any aspect of our lives, even though a particular aspect may have been lived by us in what we might call the distant past in terms of linear time. So a person may be, at the present moment in linear time, diagnosed with dementia, but that same individual’s personal present may include, depending on their current frame of mind, being an attorney, author, homemaker, son, daughter, mother, father, and the like. This may be the case even though the person is not actually living out those aspects of his or her life course at the present moment in linear time.

For example, someone could be a day centre participant but their personal present could also include aspects of life that flourished in healthier days, so that his or her psychological characteristics or attributes from “back then” in linear time can live easily within that person in the personal present moment – what is called “now” in linear time.

What holds for the dispositions and attitudes of time past holds as well for time future. Each time we engage in actions that are geared to achieving some

26 The Journal of Dementia Care May/June 2020 Vol 28 No 3

future goal, we bring into our personal present one or another vision of the future. And to the extent that we engage in such thinking, planning, and action, a repertoire of possible futures is made very much alive for us in the present moment.

Whether it is planning for the arrival of a new baby, or for retirement, or for a summer holiday, or for the possibility of having to place a loved one in a care home, we are incorporating into the present moments of our lives a time that is yet to come. So even though that time is in the future in one sense, the sense of linear time, it is also very much a part of the present for us as well, a part of our personal present as Stern would say.

In Stern’s view, then, psychological life in the present moment can include times distant both in the past and the future by the mere shifting of one’s personal perspective, thereby making the present moment unseparated from moments at other points in linear time. Psychological time is therefore quite different from linear time.

The past in the present With this in mind, we can begin now to examine how all this pertains to people living with dementia. One can bring the memory of one’s past feelings and abilities into the present moment and compare those abilities with how they are working now, for example. We hear Dr M, diagnosed as being in the moderate to severe stage, do exactly this in the following conversation with me (Sabat 2001, p243) in which she reacts to having been described by a neuropsychologist, two years earlier, as having language function within normal limits for people her age: SRS (me): You have to tell me what it is that you want to be able to do.

Dr M: I don't know how you go through the various steps, but I want to have a, a feel that when I talk, that when I caw, talk, I, I can talk.

SRS: Um hum.

Dr M: I can't always do that.

SRS: Um hum, well, you're doing it pretty well right now.

Dr M: No, but when I haven't, we're just talking uh, SRS: Light?

Dr M: Light, light stuff, and even light sa stuff are problems because I miss and word and I can't find it.

SRS: Um hum.

Dr M: And I'm probably able to do it as other people can, but uh, not it that good, it's not good enough for me.

In her final comment she has done two things: • She has concluded that she might be able to speak as other people can, evaluating herself vis-a-vis other people, and • She has evaluated her present ability, in light of the abilities she demonstrated and enjoyed over the course of her healthy adult life, as being “not good enough for me.”

In this case, good enough is being defined in

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terms of what she was able to do in the past, rather than in terms of what other people, whoever they might be, can do at present. Not only is her ability as affected by dementia part of her personal present, but so too is the cherished level of ability that was hers in decades of healthy days past.

Dr M’s perception of the blatant difference between the two levels of ability is also a powerful part of her personal present. The dialectic of “what I am not but might otherwise be” may be seen as having one possible basis here in the clash, in her personal present, of her abilities at two different linear times of her life. It is a clash that clearly causes her feelings of great despair.

On a related note, in order for her to feel this way, given her awareness of her past abilities to speak eloquently, she had to have an intact, retrievable memory of those abilities. That is, she could not have “memory loss” in this respect at the very least.

She revisited the same theme in another conversation (Sabat 2001, p243-244): Dr M: Well. I just show you, as I showed you the last week how many things I are, I am, and how many of them come from far, far back – and then making it include the present – that kind of thing, that's a...

SRS: That's a tough one to swallow Dr M: Ya, um hum, that's a lot SRS: It's hard to accept. Am I right?

Dr M: Ya, I guess it is.

SRS: The present is so different from the past?

Dr M: The working is different. Uh I go into the off (office), into my room, and I uh, say this time I'm going to get the, all the papers I want to have used for what was.

Um, that's a lot. And uh, I it's not like if I were, I have someone who sets a de (deadline), a program. And what I get from the days, the years, everything that are still left...

In one sense, the present was indeed very different from the past, but we can hear quite clearly that her personal present included both times quite prominently. She had revealed “how many things I are, I am, and how many of them come from far, far back”. And now, in her personal present, she was confronted not only with those many things, but also with the immense challenge of trying to be those things in the present moment in linear time.

She was so utterly tortured by this challenge. It was indeed a tough one to swallow, in that she could not bring to her present moments in linear time so much of what she was, as she lived it in the past, and was tormented by the prospective waste of “the days, the years, everything that is still left.”

In this way our personal present can contain time past, time present, and time future. Is it any wonder that people living with dementia can often feel adrift, alien to themselves, and that they can experience the appropriate sadness, indeed mourning, about the losses they have endured? How each person expresses those feelings outwardly is often in accordance with his or her lifelong dispositions and what any particular loss means to them, depending, of course, on the extent and location of brain damage they have experienced.

Key points • Understanding the subjective experience of a person with dementia is an important component of effective care • We should often avoid pathologically based interpretations when we fail to comprehend someone’s speech and try to see it as a valid response to circumstances • In attempting to grasp another’s meaning, the distinction between “psychological time” and “linear time” can be helpful • The concept of psychological time depends on the idea that we can bring any aspect of our lives to the present moment, even if it took place long ago • Mastering this concept enables us to recognise that people with dementia are communicating something about their experience • By recognising this fact, we can become active partners in the “communicative dance” of an interpersonal relationship and provide better care.

Problems with words, not time confusion Taking this line of reasoning a step further, is it any wonder that a person can revisit the past in memory images and then try to speak about them, but simultaneously experience word-finding and syntactic problems? In such cases it is entirely possible for an inexperienced outsider to conclude that “he or she thinks it’s 1942” because the person with dementia cannot precede comments by saying, “I was just thinking about this particular time during the war, when…”

Or similarly when one’s mother says, “I was just speaking with grandma this morning…” even though grandma died decades ago. Perhaps she was thinking about what she’d like to say to grandma if it were possible or recalling a conversation she had with her mother years ago, but cannot frame the idea as clearly in terms of linear time as she could in previous healthier days. Her current experience of “speaking with grandma” may be a way to embark on a conversation about what she said to grandma, what grandma said to her, and perhaps what grandma meant to her and what she always wanted to say to her mother but perhaps never did…until now.

In any case, it would do little good to say to her something akin to “grandma died 30 years ago!” It is important that we who are deemed healthy recognise that what people living with dementia say and do is often, if not always, an attempt at communicating something about their experience, be it from the distant past, the present, or related to some possible future.

Active partners By taking this stance in the first place, we can then become active partners in the communicative dance that we frequently call an interpersonal relationship.

It is hardly alien in our everyday experience to conjure up some feelings or thoughts related to our past experiences, our attributes past and present, and our ways of being in the world. I should like to suggest that this is true of us even when we are living with dementia, so that this would constitute yet another way in which there is much common ground between those of us who have been diagnosed with dementia and those of us who have yet to be. n

References Sabat SR (2001) The Experience of Alzheimer’s Disease: Life Through a Tangled Veil. Oxford: Blackwell.

Stern W (1938) General Psychology from the Personalistic Standpoint (translated by HD Spoerl).

New York: Macmillan.

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How to gain confidence in assessing mental capacity Always assume someone has mental capacity unless proven otherwise.

In her contribution to our series on hospital dementia care, Elizabeth Champion shows how to put the Mental Capacity Act front and centre here is a popular myth that everyone with dementia lacks capacity. My aim is to try and assist staff to understand whether someone has capacity to make a particular decision themselves and the processes required to help with this.

Understanding the relevant legislation is a crucial first step.

Dementia is a progressive condition, meaning that people with dementia and their families and carers have to cope with diminishing abilities over time.

These changes include an increasing and fluctuating impairment in the person’s capacity to make decisions about major life events as well as day-to day situations (Alzheimer’s Society 2015).

Knowing about the different subtypes and stages of dementia is helpful, but it is important to remember that everyone is an individual and “one size does not fit all!” It is the Mental Capacity Act 2005 (MCA) that sets out who can make decisions in which situations, and how, and it is not the person’s diagnosis that matters but their actual capacity to make a particular decision at a particular time.

Professionals are legally required to “have regard to” relevant guidance in the MCA code of practice (Department for Constitutional Affairs 2007).

T

Remember we are trying to help When considering someone’s decisionmaking capacity, we should always remember that we are trying to assist them, not catch them out or trip them up. There are five key messages to learn.

Key message 1 A person must be assumed to have capacity unless it is established that he or she lacks capacity.

This is the first principle of the MCA (section 1(2)). Some people may require help to be able to make a decision or to communicate their decision. However, this does not necessarily mean that they cannot make that decision, unless there is proof that they do lack capacity to do so. Anyone who believes that a person

This article is especially useful for staff training or discussion groups

lacks capacity should be able to prove their case.

Key message 2 A person is not to be treated as unable to make a decision unless all practicable steps to help him or her do so have been taken without success.

This is the second principle of the MCA (section 1(3)) and it is implicit that the support people may need to help them varies. It depends on personal circumstances, the kind of decision that has to be made and the time available to make the decision.

Key message 3 … [Mental] capacity is decision-specific, and an individual is assumed to have capacity unless, on the balance of probabilities, proven otherwise. The concept of capacity under the Mental Capacity Act 2005 is relevant to many decisions including care, support and treatment, financial matters and day-to-day living.

This statement from National Institute for Health and Care Excellence guidelines (NICE 2018) makes it clear that the MCA can apply to all sorts of decisions. Where there are concerns about someone’s capacity, an assessment should be undertaken for each decision that needs to be made, at the time that that decision needs to be made.

Key message 4 A person’s capacity to make a decision can fluctuate and they may also lack the capacity to make a decision about one issue but still have capacity to make decisions about others.

Someone can lack capacity to make a decision at the time it needs to be made even if: • Loss of capacity is partial • Loss of capacity is temporary • Capacity changes over time.

28 The Journal of Dementia Care May/June 2020 Vol 28 No 3

Elizabeth Champion is lead nurse for dementia care at Maidstone & Tunbridge Wells NHS Trust

Section 2(2) of the Act states that the underlying impairment or disturbance does not have to be permanent. An assessment of a person’s capacity must be based on their ability to make a specific decision at the time it needs to be made, and not on their ability to make decisions in general.

An assessment that a person lacks capacity to make a decision must never be based simply on: • Their age • Their appearance, including the physical characteristics of certain conditions • Assumptions about their condition, including conditions related to age • Any aspect of their behaviour, e.g. extrovert (shouting or gesticulating) and withdrawn (talking to self or avoiding eye contact).

Key message 5 Anybody who claims that an individual lacks capacity should be able to provide proof. They need to be able to show, on the balance of probabilities, that the individual lacks capacity to make a particular decision, at the time it needs to be made (section 2(4)).

In other words, professionals must be able to show that it is more likely than not that the person lacks capacity to make the decision in question. What must be remembered is that an assessment of capacity is subjective and that two people may have different views, but that does not mean one person is right and one person is wrong.

They just need to be able to provide proof as to how they reached their decision, so documenting the assessment clearly is important.

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Test of capacity A person lacks capacity to make a particular decision if they cannot do one or more of the following: • Understand information relevant to the decision.

Relevant information includes: the nature of the decision, the reason why the decision is needed, and the likely effects of deciding one way or another, or making no decision at all.

• Retain that information in their mind long enough to make the decision.

People who can only retain information for a short while must not automatically be assumed to lack the capacity to decide – it depends on what is necessary for the decision in question.

• Weigh up that information as part of the decision-making process.

Sometimes people can understand information but a mind or brain impairment or disturbance stops them using it. In other cases, the impairment or disturbance leads to a person making a specific decision without understanding or using the information they have been given.

• Communicate their decision, using verbal or non-verbal means.

Sometimes there is no way for a person to communicate, but before deciding that someone falls into this category all practical and appropriate efforts should be made to help them communicate.

Such help might include involvement of speech and language therapists, specialists in non-verbal communication or other professionals. Simple muscle movements can show that somebody can communicate and may have capacity to make a decision.

Supporting decision-making Don’t forget that a person is not to be treated as unable to make a decision unless all practicable steps to help them to do so have been taken without success.

Think about: • Is this a good time of day for the person?

• Is this the most appropriate environment for the person (e.g. have distractions been eliminated)?

• Is the necessary information being provided in the most appropriate format (e.g. written; spoken; pictures)?

• Is the information being provided in the most appropriate time frame?

• Is the person likely to attach particular

importance to any key considerations relating to the decision (e.g. previous wishes/beliefs/actions)?

• Are communication aids required?

• Have any medical conditions been identified and treated which may be affecting capacity?

• Have you considered utilising speech and language therapists for an assessment or use of assistive devices?

Before proceeding to a capacity assessment, three further principles of the MCA should be considered: • A person is not to be treated as unable to make a decision merely because they make an unwise decision.

It may not be what we would do – but it is not what we think is the best thing to do that is being decided here. Our capacity is not being assessed!

• An act done or decision made on behalf of someone assessed as lacking capacity must be in their best interests.

Vol 28 No 3

Best interests principles will be the subject of a future article, but refer to the MCA code of practice for further information.

• Regard must be had to whether the purpose for which a decision is needed can be as effectively achieved in a way that is less restrictive of the person’s rights and freedom of action.

Or, to put it another way, what is the easiest and least disruptive way of achieving the outcome?

Preparing for an assessment The professional who assesses an individual’s capacity to make a decision will usually be the one who is directly concerned with them at the time it needs to be made. Consequently, different people will be involved in assessing someone’s capacity to make different decisions at different times. If a doctor or healthcare professional proposes treatment or an examination, they must assess the person’s capacity to consent. ‰

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The Journal of Dementia Care 29

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‰ Points to bear in mind when preparing for a capacity assessment are as follows: • Allow enough time for the assessment, giving people with communication needs more time if needed.

• Introduce the assessment and conduct it in a way that is respectful, collaborative, non-judgemental and preserves the person’s dignity.

• Make reasonable adjustments including, for example, delaying the assessment until a time when the person feels less anxious or distressed and more able to make the decision.

• Ensure that the assessment takes place at a location and in an environment and through a means of communication with which the person is comfortable.

• Identify the steps a person is unable to carry out even with all practicable support.

• Involve people with whom the person has a trusted relationship to help with the assessment, if they have consented to this, e.g. their family or friends.

• Tools such as the Mini-Mental State Examination or Abbreviated Mental Test Score that are not designed to assess capacity may yield information that is relevant to the assessment, but practitioners should be aware that these should not be used as the basis for assessing capacity.

• If a person refuses to engage in some or all aspects of the assessment, the assessor should try to establish the reasons for this and identify what can be done to help them participate fully.

• Practitioners should understand that the person has to retain relevant information only for the purposes of making the specific decision and for the period of time necessary, both for making the decision and putting it into effect.

Practitioners should be aware that a person may have decision-making capacity even if they are described as lacking “insight” into their condition.

Capacity and insight are two distinct concepts. If a practitioner believes a person’s insight or lack of it is relevant to the capacity assessment, they must clearly record what they mean and how they believe it affects capacity.

Recording the assessment Whatever the outcome of the assessment, it should be clearly recorded and documented in the person’s healthcare records. This should be the case whether the person is found to have capacity or found to lack capacity. Using your

We have to ensure that the person has their voice and opinions heard regardless of pressures from outside, whether from other practitioners, carers or family members organisation’s formal documentation, the record should include: • Details of the two-stage assessment of capacity, i.e. does the person have an impairment or disturbance of their mind or brain, and are they unable to make a specific decision in consequence?

• What impairment or disturbance of the mind or brain has been identified?

• Practical steps that have been taken to help them make a decision themselves • Ability or not to understand, retain, weigh up and communicate, and the justification for making this claim.

Conclusion Assessing someone’s capacity is a complex task, but something we should all be involved with. It must be remembered that it is time and decision specific and not a blanket decision. As ambassadors for the Dementia-Friendly Hospital Charter (NDAA 2018) we must respect patients’ rights to make decisions themselves and support discussions about personal preferences on future care where appropriate.

All of this aligns with the National

Dementia Action Alliance’s Dementia Statements, which speak for people with dementia and their families, specifically: We have the right to be recognised as who we are, to make choices about our lives including taking risks, and to contribute to society. Our diagnosis should not define us, nor should we be ashamed of it.

Generally, we will have got to know the person and any weaknesses they may have with communicating or expressing themselves, and we have an important part to play in advocating for that person.

Everything depends on the decision to be made and how best to support that person in making that decision.

Each of us will assess capacity on an informal basis during our day-to-day practice. We just have to have the confidence to do it and to ensure that the person has their voice and opinions heard regardless of pressures from outside, whether from other health and social care practitioners, carers or family members.

If you believe someone has capacity to make a decision for themselves, even if this appears to be an unwise decision, you have a duty of care to ensure that this is formally assessed and documented.

Ultimately, always assume capacity until proven otherwise, and remember that a Lasting Power of Attorney for health and welfare is not valid until someone loses the capacity to make the decisions for themselves. n References Alzheimer’s Society (2015) Dementia 2015: aiming higher to transform lives. London: Alzheimer’s Society.

Department for Constitutional Affairs (2007) Mental Capacity Act 2005 Code of Practice.

London: Stationery Office.

National Dementia Action Alliance (2018) Dementia-Friendly Hospital Charter. London: NDAA. NICE (2018) Decision-making and mental capacity (NG108). London: NICE.

Hawker Publications offers • Best seller books • Cognitive stimulation therapy (CST) books • Dementia care books • A selection of care-related books Visit www.hawkerpublications.co.uk for • More information on the books • Buying the books

30 The Journal of Dementia Care May/June 2020 Vol 28 No 3

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Meeting psychosocial needs in multicultural groups Tom Kitwood’s hierarchy of needs is a valuable model for working with people with dementia in multicultural group settings. Laura Bolton and Zara Quail explain their approach in one London community orking in a London multicultural community, we are often reminded that the core sense of self in conditions such as dementia is deeply in need of care as cognitive decline erodes both memories and potentially self-esteem. As the stage and screen director Sir Richard Eyre once wrote in relation to his own mother, who had Alzheimer’s disease: “We can alleviate physical pain, but mental pain – grief, despair, depression, dementia – is less accessible to treatment. It’s connected to who we are – our personality, our character, our soul, if you like” (2011).

Person-centred care must be part of the answer, but there are barriers to providing it for older people living with dementia in multicultural communities such as ours in Camden (see diagram).

Social isolation (LBC 2017a), deprivation (LBC 2017b), language barriers, disorientation, reduced mobility, transport issues and different cultural beliefs are some of those barriers. In addition, high levels of carer stress have been observed in these communities, where Care Visions delivers programmes for people with dementia.

W

Multi-modal groups, activity and therapy Care Visions is a private social care organisation in which the Healthy Ageing division has been developing person-centred community solutions to respond to the challenges of our ageing society, both in China and the UK. As part of our dementia social care services, we design and deliver multi-modal groups and one-to-one activity and therapy sessions.

Group sessions incorporate nonpharmacological interventions designed with the aim of improving socialisation and where possible outcomes in terms of cognition, mood and sense of wellbeing.

Interventions include therapies and activities that stimulate the five senses, cognition and emotion through personcentred care.

The different groups meet once or twice a week with between five and 10

Right: Music therapist Laura Bolton works with a client. Below: Materials prepared for a group session

32 The Journal of Dementia Care May/June 2020 Vol 28 No 3

Laura Bolton is music therapist and dementia therapist at Care Visions. Zara Quail is clinical scientific research lead at Care Visions and is a GP people attending. Most group-based non-pharmacological interventions for dementia have been designed and trialled for country-specific cultural settings (Spector et al 2003, Bertrand et al 2019, Wong et al 2018). Our challenge in an ethnically diverse community affected by the barriers we have described has been how best to deliver person-centred care and create a sense of belonging in a multicultural group therapy setting.

Cultural awareness and inclusivity have been central to the way we design accessible and acceptable care for people living with dementia in medium- and large-sized urban communities. Our

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Estimated number of people by country of birth aged 65 or over in St Pancras and Somerstown and Holborn and Covent Garden wards, Borough of Camden. Data from Census Information Scheme (2011).

group sessions are located at well-known community centres locally and are free to attend. Most importantly, the sessions set out to meet people’s psychosocial needs by applying Tom Kitwood’s hierarchy of psychological and social needs (1997), a model which is integral to how we embed person-centred care.

Kitwood’s hierarchy of needs is often represented as a flower with love at the centre surrounded by petals of comfort, identity, occupation, inclusion, and attachment, and we use it as a base on which to build session activities (Kitwood 1993). This model is particularly applicable in our multicultural context in relation to identity, occupation and inclusion as part of person-centred care to support a sense of personhood through “recognition, respect and trust”.

Supporting identity Identity is fundamental to each person’s perception of who they are and their own story. Dementia can affect a person’s identity by stripping away the memories that were unique to their sense of self. It can also affect the functional capabilities that were core to a person’s identity such us being a good musician, taking care of household tasks or being the main income earner in the home. In a multicultural setting in which participants are distanced from their countries of origin, the sense of loss of

identity is compounded by an environment in which other people may look, speak and behave differently from them.

Experiencing cognitive symptoms of dementia with only short-lived memories of the newer country can be a real challenge for those who may rely on familiar prompts from the place they used to call home. Lack of familiarity and discomfort can be barriers to participation in any community activities in settings with which people have no prior connection.

Our own community engagement team is acutely aware of this fact and part of their role is to identify and act on barriers such as language barriers. In such cases, any family members or friends are encouraged to attend with the participant, or a translator is sought, to facilitate translation to ensure a sense of familiarity and inclusion in the activities.

If a group member struggles to understand verbal information but can process written information, instructions are always provided in both formats.

Our therapists also help participants build on their personal and cultural identity by talking with them and their families to construct biographical narratives using life story workbooks.

Not only does it strengthen identity, it enables people to share their diverse histories and capture the interest of fellow group members.

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As well as reinforcing individuals’ own experiences, life story work draws out similarities between people from different cultures. For example, group members from several different countries discovered that they had all moved to the UK at a similar time and age, and they had the same number of children and same gender mix of children. This synchronicity provided the opportunity to emphasise similarities between group members regardless of ethnicity.

Sharing different cultures A popular icebreaker has been to share different spoken and physical greetings from each person’s language or culture.

It is a learning experience in which participants show high levels of engagement. The same is the case for other activities relating to countries of origin such as those involving food, including looking at photographs of different foods, smelling spices and touching dried foods, stimulating the five senses while reinforcing aspects of each person’s own culture or making new connections with others.

Background music from the different cultures can intensify the experience and we have observed some dynamic group discussions resulting from memories associated with the activities.

Many people link their identity to occupation, and as one relinquishes an occupation, job or role in retirement,

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Group session participants discuss emotions

there may be a need to redefine what a meaningful occupation is. Symptoms of dementia may include apathy and depression (Livingston et al 2017), where people experience a lack of motivation and perhaps an accompanying loss of confidence in doing things that they had previously enjoyed or excelled at.

In our group settings we try to find therapeutic activities that will engage group members and help to maintain and cultivate skills, increasing motivation and improving wellbeing. We utilise skills and abilities participants already have and to which they would naturally be drawn, so we encourage them to bring their own hobbies or crafts. It has resulted in some culturally distinctive craft work of great interest - a real discussion point for everyone in the group.

Social inclusion Social isolation is both a risk factor for and a symptom of dementia (Livingston et al 2017). The social lives of people with dementia can be compromised as memory and communication skills diminish, often accompanied by symptoms of depression and a lack of motivation. But Kitwood suggests that personal inclusion can allow a person to “expand” again rather than increasingly withdraw and can be “recognised as having a distinct place in the shared life of the group” (1997).

In designing group sessions, we intentionally ensure that everyone has a chance to participate and express themselves, adapting and giving support as required to facilitate communication, often between people of different languages. In some groups we focus

more on non-verbal activities to bridge language barriers; for example, physical activities with a balloon or skittles are easy to demonstrate without words and visual arts-based activities can be communicated pictorially.

Facilitating meaningful interactions between people, regardless of language or verbal ability, can foster confidence in self-expression. Creating a sense of care and belonging generates mutually caring relationships between participants as they celebrate the development and success of fellow group members. Our community engagement team promotes social inclusion by reaching out to community, cultural and religious organisations, ensuring that all member groups in specific wards are contacted and invited to take part.

Person-centred care is at the heart of what we do, even in a group setting. By applying Kitwood’s model, we can establish bonds of mutual recognition and belonging highlighting the cultural richness of each person’s unique background. In supporting our service delivery, we assess outcomes through participant and facility feedback questionnaires, sessional engagement and mood scores, and interval measurements of Mini Mental State Examination and Geriatric Depression Scale scores to inform intervention acceptability, efficacy and improvement of service delivery.

The Kitwood model is also applicable beyond the confines of the group participant circle. Sustained community engagement is key and is about building long-term relationships with people living with dementia, their significant others and

34 The Journal of Dementia Care May/June 2020 Vol 28 No 3

other service providers. Initial engagement should include information and signposting to relevant services as well as keeping communication channels open.

Sensitive engagement, particularly with carers and families, is essential as we often meet them at points of crisis, especially if family members with dementia have not yet accessed or rejected services. Carers often have limited resources which are already stretched and enabling people to attend sessions and accept interventions can present a significant additional challenge.

While considering barriers of accessibility and acceptability, we also need to give people confidence that our sessions are part of a safe and beneficial service. Kitwood’s model helps us to do just that. The challenges and barriers faced by older people with dementia are not unique to wards in Camden and inclusive, multicultural models of care are needed worldwide, especially in larger urban centres of global migration.

Ultimately, we plan to expand this model to other cities as a way of enhancing identity, occupation and inclusion among groups for whom such needs are too easily overlooked. n References Bertrand E, Naylor R, Laks J, Marinho V et al (2019) Cognitive stimulation therapy for Brazilian people with dementia: examination of implementation issues and cultural adaptation.

Aging & Mental Health 23(10) 1400-1404.

Census Information Scheme (2011) Age by ethnic group by sex (CT0225). 2011 Census commissioned tables, webpage at https://data.london.gov.uk.

Eyre R (2011) The longest goodbye. Mail Online, 28 April.

Kitwood T (1997) Dementia Reconsidered: The Person Comes First. London: Open University Press.

Kitwood T (1993) Towards a Theory of Dementia Care: The Interpersonal Process.

Ageing and Society 13(1) 51-67.

Livingston G, Sommerlad A, Orgeta V, Costafreda SG et al (2017) Dementia prevention, intervention, and care. Lancet 390(10113) 2673-2734.

London Borough of Camden (LBC) (2017a) Social Isolation Infographic. Webpage at https://opendata.camden.gov.uk.

London Borough of Camden (LBC) (2017b) Camden Ward Profiles. Webpage at https://opendata.camden.gov.uk.

Spector A, Thorgrimsen L, Woods B, Royan L et al (2003) Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia: randomised controlled trial. British Journal of Psychiatry 183 248-254.

Wong GHY, Yek OPL, Zhang AY, Lum TYS, Spector A (2018) Cultural adaptation of cognitive stimulation therapy (CST) for Chinese people with dementia: multicentre pilot study.

International Journal of Geriatric Psychiatry 33(6) 841-848.

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Shared decision making in care homes Shared decision-making is an interprofessional approach to increasing resident and family engagement in care decisions which can lead to higher quality decisions and more relevant care interventions.

This small study explored shared decision-making among residents, families and staff in one care home to determine relevant strategies to support this approach in residential care. Four themes emerged: (a) oral communication pathways for information sharing, (b) supporting resident decision-making autonomy, (c) relational aspects of care facilitate shared decision-making, and (d) lack of effective communication creates barriers to shared decision-making. The article concludes that there are opportunities to facilitate a shared decision-making approach through more effective information sharing and communication thus supporting increased resident decision autonomy.

Cranley LA, Slaughter SE et al (2020) Strategies to facilitate shared decision‐making in long‐term care.

International Journal of Older People Nursing: e12314 (early view). Published online March 20 as doi 10.1111/opn.12314 (Open access)

Research summaries The research papers summarised here are selected for their relevance and importance to dementia care practice by the section editor (Theresa Ellmers). We welcome suggestions of papers to be included. If you would like to contribute a summary or a short comment on an important research paper recently published, drawing practitioners’ attention to new evidence and key points that should inform practice, please contact theresa.ellmers@investorpublishing.co.uk. skilled communicative and emotional work undertaken by HCWs. Pollock K, Wilkinson S et al (2020) What do family care-givers want from domiciliary care for relatives living with dementia? A qualitative study. Ageing and Society, 1-14 (First view). Published online 6 March as doi 10.1017/S0144686X20000185.

Creative storytelling This paper explores generativity, defined as “the human experience of contributing to and promoting the lives of others and oneself”, in narratives from a creative story telling programme. The programme enables people with dementia to express themselves without relying on memories and by creating a “failure-free” environment.

Data was collected from 21 residents with dementia who engaged in six weekly creative

story telling sessions, creating 24 collective stories. Thematic analysis of the narratives revealed various aspects of participants’ generative concerns. Three themes related to generativity: caring and promoting the well-being of others, family values, and positivity. The authors suggest that the findings reveal generative identities held by people living with dementia, which help destigmatise dementia and also shed light on why creative group storytelling may affect multiple positive outcomes for its participants.

Kim S, Chee KH, Gerhart O (2020) Generativity in Creative Storytelling: Evidence From a Dementia Care Community. Innovation in Aging 4 (2): igaa002. Published online 23 March as doi 10.1093/geroni/igaa002 (Open access)

28 nursing home care managers participated in focus groups that explored their perceptions of different types of abuse within different situations. Three categories emerged: 1) abuse from coresidents: ‘A normal part of nursing home life’; appeared to be so commonplace that participants perceived it as normal and had no strategy for handling it; 2) abuse from relatives: ‘a private affair’; relatives with abusive behaviour visiting residents was described as difficult and something that should be kept between the resident and the relatives; 3) abuse from care staff: ‘an unthinkable event’ considered to be difficult to talk about and not in accordance with the leaders’ trust in their staff. The authors conclude that the results indicate that abuse and neglect in care homes are an overlooked patient safety issue.

Myhre J, Saga S et al (2020) Elder abuse and neglect: an overlooked patient safety issue. A focus group study of nursing home leaders’ perceptions of elder abuse and neglect. BMC Health Services Research 20: 199. Published 12 March as doi 10.1186/s12913020-5047-4 (Open access)

Evaluating communitybased interventions

Home care This paper reports findings from a qualitative study with family carers about how home care workers (HCWs) support people with dementia living in the community. In all 14 participant cases, it was family carers who initiated the care for the person with dementia, highlighting ambiguity about who is the ‘client’. Rather than focusing on the HCWs’ work in undertaking practical tasks and personal care, participants prioritised HCWs as companions, providing emotional and social support for their relatives. The authors argue that there is a need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly

Focus group on abuse in care homes

Evidence for practice/Research news This section aims to keep readers up to date with research in dementia care and the current best evidence to support practice. We aim to provide a channel of two-way communication between researchers and practitioners, so that research findings influence practice and practitioners’ concerns are fed into the research agenda.

We welcome contributions such as: • Information on recently-completed studies that are available to readers • Notice of the publication (recent or imminent) of peer reviewed research papers with practical relevance to dementia • Requests or offers for sharing research information and experience in particular fields of interest.

• Short comment on important research papers recently published, drawing practitioners’ attention to new evidence and key points that should inform practice.

Please contact theresa.ellmers@investorpublishing.co.uk

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May/June 2020

Variability in outcomes and measurement instruments used in non-pharmacological dementia trials make it difficult to compare for effectiveness.

This mixed-method study sought to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people with dementia living at home. Using five key stakeholder groups, including people with dementia, the research identified 13 outcome items which are considered core, many relate to social health. Measuring these core outcome items will enhance comparisons for effectiveness making trial evidence more useful. It will also provide commissioners and service ‰

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‰planners with information on what types of interventions are most likely to be valued highly by people living with dementia.

Reilly ST, Harding AJE et al (2020) What is important to people with dementia living at home? A set of core outcome items for use in the evaluation of non-pharmacological community-based health and social care interventions. Age and Ageing: afaa015 (advance article). Published online 17 Feb as doi 10.1093/ageing/afaa015 (Open access)

Medicine management This qualitative study sought to develop an intervention to improve medicines management for people with dementia in primary care through understanding GPs and community pharmacists’ views and experiences. The research involved selection of a community pharmacist-based intervention that has been developed targeting medicines management for people with dementia in primary care, and future work will determine the usability and acceptability of implementing this intervention in clinical practice.

Barry HE, Bedford LE et al (2020) Improving medicines management for people with dementia in primary care: a qualitative study of healthcare professionals to develop a theory-informed intervention.

BMC Health Services Research 20: 120. Published online 14 Feb as doi 10.1186/s12913-020-4971-7 (Open access)

Meaningful activity The term ‘meaningful activity’ is widely used in policy, practice and the research literature. To establish some clarity in the use of the term, a concept analysis was conducted to explore the fundamental attributes that make an activity ‘meaningful’ for older people with dementia.

Twenty-nine papers were analysed and five attributes identified that make activities meaningful for people with dementia: (a) enjoyable; (b) suited to the individual's skills, abilities and preferences; (c) related to personally relevant goals; (d) engaging; and (e) related to an aspect of identity.

The authors comment that this

understanding of 'meaningful activity' can be used by those involved in research, planning or delivery of services and care for people with dementia to encourage and support participation in activities that are meaningful to individuals.

Tierney L, Beattie E (2020) Enjoyable, engaging and individualised: A concept analysis of meaningful activity for older adults with dementia. International Journal of Older People Nursing: e12306 (early view). Published online 5 Feb as doi 10.1111/opn.12306

Reducing hospital admissions from care homes Care home residents frequently attend emergency departments with a high conversion to admissions. For this purpose, a Care Home Innovation Programme (CHIP) was introduced with the aim of reducing potentially avoidable hospital admissions by 30% and this study evaluated the implementation. As part of the CHIP, community matrons were allocated to care homes, new protocols were developed to address common presentations, a 24-hr 7-day a week tele video system installed in homes and a training collaborative established to learn and share good practices.

Results found that in comparison to the 12 months prior to launch, over a four-year period, implementation of the CHIP resulted in a 15% reduction of emergency calls, and in a 19% reduction of conveyances to hospital.

Giebel C, Harvey D et al (2020) Reducing hospital admissions in older care home residents: a 4-year evaluation of the care home innovation Programme (CHIP). BMC Health Services Research 20: 94.

Published online 6 Feb as doi 10.1186/s12913-020-4945-9 (Open access)

Hospital care This systematic review aimed to assess the effectiveness of interventions designed to improve the care and management of people with dementia in hospitals. The authors found interventions that improved the care and management of people with dementia in hospital and these

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are explored, however it was classified as low- to very low-quality evidence.

Therefore, the authors argue that new clinical recommendations could not be made based on current evidence, and robust trial designs are necessary to inform evidence-based care.

Feast AR, White N et al (2020) The effectiveness of interventions to improve the care and management of people with dementia in general hospitals: A systematic review.

International Journal of Geriatric Psychiatry 2020: 1– 26 (epub ahead of print). Published online 3 Feb as doi 10.1002/gps.5280.

Designing playful and creative practices This paper draws on a qualitative study that used a playful, participatory arts approach and develops practical recommendations, in the form of a set of playing cards, for other researchers and caregivers to work in similar ways. The authors suggest that the exact notion and nature of co-design within the context of working with people with dementia is unclear and they critically explore whether such participatory creative practices that engage people with dementia can be considered as purely ‘co-design’. They argue that such interaction is better described as co-creation and that this definition can still embrace considerable contribution and involvement by people with dementia in a co-design process.

Tsekleves E, Bingley A et al (2020) Engaging people with dementia in designing playful and creative practices: Co-design or co-creation?

Dementia: 19(3): 915–931.

Published online 8 August 2018 as doi 10.1177/1471301218791692

Crisis at home Home treatment of crisis for people with dementia is an alternative to hospital admission that can have better outcomes and this systematic review identifies modifiable factors in the crisis process that may facilitate crisis resolution.

The studies included show that for a person with dementia, crisis is a process that begins with a problem judged to put

them or others at risk of harm.

It leads to decision and action to treat this risk and resolve the crisis. Medical treatment, community resources and psychosocial support of personal resources, decision making, relationships and social networks, are all modifiable factors that can treat the risk of harm during crisis.

Carers’ and professionals’ knowledge and skills in dementia care are likely to play a key role in crisis resolution in the home. The authors conclude there is no consensus on critical components of home treatment to facilitate crisis resolution.

Hopkinson JB, King A et al (2020) What happens before, during and after crisis for someone with dementia living at home: A systematic review. Dementia (online first). Published online 3 Feb as doi 10.1177/1471301220901634

Supporting resilience in people with dementia Resilience is defined as a process through which people use resources to adapt to adversity. This literature review explores the factors through which interventions foster resilience in people with dementia and examines their efficacy. Five interventions aiming to foster resilience were identified: Dementia Advisors; Peer Support Network Services; Visual Arts Enrichment Activities; Memory Makers; and Early-Stage and Beyond Community Activities. The interventions impacted resilience by reducing the adversity of stigma and social isolation; increasing personal and social resources, providing stigma-free space and reciprocal support. The authors conclude that interventions need facilitators to ensure they are strength-based, personcentred and enable reciprocal social interactions, and they identify future research needs.

Whelan S, Teahan Á, Casey D (2020) Fostering the resilience of people with dementia: a narrative literature review. Frontiers in Medicine (7): 45. Published online 25 Feb as doi 10.3389/fmed.2020.00045 (Open access)

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BOOKS/RESOURCES n Supporting People Living with Dementia in Black, Asian and Minority Ethnic Communities: Key Issues and Strategies for Change David Truswell (ed), Jessica Kingsley Publishers, ISBN 9781784507480, £18.99 David Truswell brings together an important book, covering valuable topics touching the lives of black and minority ethnic (BAME) communities when living with dementia.

The book is easy to read and engaging for all audiences.

Five of the 11 chapters look closely at different communities and their experiences. The remaining chapters cover common issues among BAME communities, including the rights people have living with dementia or caring for someone with the condition, the diversity of spirituality, and being a single carer, and how these factors can influence coping when living or caring for someone with dementia.

In each chapter, the authors identify lessons that can be learned to ensure BAME

communities are given the tailored support they may need. Details are given of key issues and current implications of dementia for the individual and those caring for them in order to reduce stigma and provide quality care within each BAME group.

Chapters can be used as stand-alone guides to learn more about specific communities by policymakers, academics and those involved in the care of people.

Alternatively, the book can be read as a whole. Truswell and colleagues highlight through personal accounts the importance of holding on to identity and memory.

The personal touch the book brings is refreshing in understanding the reality of experiences of people from BAME communities,

emphasising the need for cultural sensitivity. Acting as an excellent aid, many of the chapters include touching reallife stories and histories that invite the reader to delve further into behaviour and the need to be culturally sensitive.

The five communities covered in detail are the Irish, African Caribbean, South Asian, Chinese and Jewish communities. It is uplifting for me, as a doctoral research student exploring the understanding of dementia to support the Irish and African Caribbean communities to find that the book includes chapters on these communities.

Not only does the book give personal accounts and data on the prevalence of dementia in each community, it also summarises key strategies for change. The seven actions

n Dementia: Support for Family and Friends (second edition) Dave Pulsford and Rachel Thompson, Jessica Kingsley Publishers, ISBN 9781785924378, £9.99 This is a lovely book – factual and informative, yet warm, real and positive. Whatever the perspectives of readers, the text aims to offer practical advice and suggestions on how to help someone with dementia live as positively and fully as possible, while also supporting themselves and each other.

Part 1, “Living with Dementia”, includes explanations on becoming familiar with dementia, being a family member or friend of a person with dementia and sources of support. Part 2, “Understanding dementia as it progresses”, includes sections on early years, managing change, social and leisure activities, the challenges, considering residential care, advanced dementia and the end of life.

There is also useful content on seldom heard groups such as people who are younger, have a learning disability, are

LGBT+ or from a black, Asian or ethnic minority.

Physical problems and other issues arising in dementia (such as reduced awareness or changes in behaviour) are considered but, rather than pathological or medical information, the authors focus on understanding people’s perspectives, what their feelings are likely to be and, importantly, how they experience the world through cognitive difficulties. The authors highlight that the ability to empathise is particularly important in successfully supporting a person with dementia.

The voices, experiences and perspectives of individuals remain central in the text through direct quotes from people with dementia and a range of family members.

These quotes are powerful, to the point and directly relevant to the sections they illustrate; they bring the text to life.

The work is clear, accessible, easy to read and straightforward to navigate.

The index is useful. I highly recommend this book for all professionals and staff working with older people in all specialties to consult whenever they encounter people living with dementia in their clinical practice, which they undoubtedly will.

I also highly recommend the book as a valuable companion for people concerned about their own cognitive health or going through their own dementia journey, as well as for family members, someone taking a caring role and friends of someone living with a dementia.

Ultimately this is a highly valuable resource for anyone who wants to know more about dementia and how to support those affected by it.

Hazel Heath, independent nurse consultant

proposed are crucial in improving dementia service information, access and support.

This is a must-read, essential for people from all walks of life, from researchers, health and social care practitioners and clinicians to those totally unaware of the impact of dementia on BAME communities.

Saba Shafiq, doctoral research student, Centre for Applied Dementia Studies, Bradford University

Resources Guidance for the care sector on handling Covid-19 is widely available, including official guidance from Public Health England (PHE). PHE guidance gives information about isolation, hygiene and personal protective equipment for care homes, home care and supported living providers, and the support they should be able to expect from the NHS locally. The Care Provider Alliance (CPA) has a useful webpage with links to a wide range of coronavirus resources, including PHE’s. The CPA’s own general guidance on infection prevention and control, a revised version of which was published in March, advises isolating people in their own rooms where possible to reduce the spread of infection, but admits this may not be possible for “those who need dementia support or other specialist needs”. It adds: “If affected people cannot be isolated, report this to the infection prevention and control lead at your local Public Health England team.” www.careprovideralliance.org.uk

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RESOURCES Resources, continued Additional government guidance published at the start of April covers Admission and Care of Residents during Covid-19 Incident in a Care Home. This guidance, from the Department of Health and Social Care, Public Health England, CQC and NHS, promises to ensure care homes can continue to care for vulnerable people through the crisis. www.gov.uk/government/ publications A free Covid-19 Information Tool Kit has been produced to help people living with dementia to understand what is happening and why. It takes the form of a book, which has been written to give an overview of the basic facts and includes poster material to help with relaying and remembering the facts. It has been put together

by Dementia: The Montessori

Way and the information in it has come from government websites and literature. www.dementiathemontessori way.co.uk Dementia specialist Professor Huali Wang shares her experience of the challenges facing dementia care and how services responded as Covid-19 spread through China, in a video from Alzheimer’s Disease International (ADI). In Dementia Care during the Covid-19 Outbreak, Professor Wang, who is executive vice-president of Alzheimer’s Disease Chinese, explains how China has addressed the specific challenges for people with dementia in unprecedented circumstances. She offers advice based on local experience “in the hope that it may help Alzheimer’s and dementia associations globally, as well as health and care

Blogs I’m watching

by Mark Ivory What can social beings do, asks Wendy Mitchell on the YoungDementia UK website, when social distancing is the rule and the government commands us to stay at home? “In these strange times we’re all living in at the moment, we’re all looking for different ways to keep connected, to avoid total isolation,” she says. “It must be an introverts’ paradise, but many humans are social beings and need others to keep in touch and feel connected. Even those introverts need human contact.” As a technology convert, she has an answer that has come into its own in recent months.

“Before I was diagnosed with young onset dementia, I’d never used technology,” she says. “I stayed away from the idea of smart phones, iPads were for other mortals, Zoom was a noise cars made! and what on earth was ‘WhatsApp’?... but now, I couldn’t do without any of them. They are my lifeline.

They have opened up a world that I never knew existed and I’m so grateful to all of them.” So, she ends by encapsulating her experience in this wise advice: “If you’ve never tried technology or seen its potential, then now is the ideal time to start. If you don’t like it, just stop. But what’s the harm in trying? You might well find you get a nice surprise of how it brings the wider world inside your isolated home….” www.youngdementiauk.org

professionals, people affected by dementia and their carers.” www.youtube.com (search “Huali Wang”) Digital news provider PressReader is offering care homes free access to online newspapers and magazines during the Covid-19 crisis. The arrangement has been agreed through the Independent Care Group, whose chair Mike Padgham said residents who were feeling isolated might find it useful to access their favourite reading matter. Care homes wishing to take advantage of the offer should contact Chantel at the email address below. chantelp@pressreader.com Alzheimer’s Society has set up a coronavirus information webpage for people affected by dementia, including advice and practical tips for people with the condition and those

The challenges for LGBTQ+ people as they navigate through the care system are captured in a play performed by actor Ian Baxter. It is called The Purple List… A Gay Dementia Venture and is a one-man play in which “Sam” talks about his relationship with “Derek”, who has dementia. By all accounts it is an excellent insight into the quandaries faced by anyone who is LGBT and has dementia, and those close to them. “Libby (Libby Pearson, the playwright) and I were noticing how much dementia was being discussed in the media and began to consider what it might be like for me and my friends if we had to use the care system,” Ian says in the guest blog section of the Dementia UK website.

“We wanted to open up the discussion about how a diagnosis, use of residential and domiciliary care might have further ramifications for certain minority groups.

We also wanted to make a piece of work that might influence training and good practice for those working in and around care.” Ian, who says he “came out” as gay more than 40 years ago, has been performing the play for professional audiences, including the Admiral Nurse Forum, and he says that theatre can enliven learning experiences. “Bringing a piece of accessible theatre into a learning environment can allow people to react in different ways to stimuli and can therefore have a huge impact on developing better practice,” he comments. “Seeing a real-life representation of life experiences can help

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supporting them - either in the same household or from a distance. It covers and gives links to activity ideas, such as listening to music via resources like BBC Music Memories and Playlist for Life, creative and games apps such as those available through AcToDementia, and various physical exercise programmes.

There is also advice on supporting people with dementia who live alone. www.alzheimers.org.uk Go to the Care Quality Commission (CQC) Coronavirus Information webpage for the latest on the suspension of routine inspections, links relating to personal protective equipment (PPE), and resources relevant to adult social care and health. It includes the joint statement on advance care planning produced by the CQC and other

students reflect on how they have treated patients and clients and how they may treat them in the future.” www.dementiauk.org/category/guestblog Writing a blog headlined “More power together” for the IDEA website, Karen Harrison Dening reflects on a lesson learned during a two-day course in Sheffield. “IDEA” stands for Improving Dementia Education and Awareness and the course seems to have had precisely that effect on her, though perhaps not in the way she intended. It was on end of life care, Karen’s dementia specialism, and the course mostly confirmed what she already knew, except one thing: poor access to end of life care is not confined to dementia but other neurological conditions like Parkinson’s, MND and MS are equally affected. “When the position on access to and quality of palliative and end-of-life care were discussed for each of the other conditions I was alarmed to see that there were shared issues,” she writes. “I had spent many years feeling that people with dementia were sadly unique in health and social care systems failing to recognise, assess and manage their symptoms at the end-of-life, but here we were being told that often people affected by each of these other neurological conditions also experienced similar unmet needs.” So lesson learned: we’re stronger together than apart. https://idea.nottingham.ac.uk/blogs

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RESOURCES & EVENTS national bodies, which stresses the importance of having a personalised care plan in place, especially for older people and people who are frail or have other serious conditions. www.cqc.org.uk Log My Care has produced what it describes as a “free and handy” infographic poster on coronavirus for care homes, as well as a suite of other resources such as a key worker template letter and a free coronavirus contingency plan for care services. The company said it had gathered up information from a variety of resources for the infographic poster, which covers symptoms and guidelines on how to stop the spread of the virus. It includes a “quick instruction set” on how to log a suspected coronavirus incident in the Log My Care carer app. www.logmycare.co.uk Safe sexual relationships are the subject of a resource from the Care Quality Commission (CQC) which looks at what can be done to support those in adult social care. Calling on social care leaders to create a “culture of openness,” the CQC says the best providers allow people the basic human right to express their sexuality while having an open culture where people feel they can raise concerns around safety. Over 650 sexual incident allegations were reviewed by the CQC, which also talked to people

A free one-month trial of a reminiscence app showing vintage TV adverts is on offer. The AdMemoire app makes historic adverts from some of Britain’s biggest advertisers available to view, both from TV and print media.

It includes themed reels of 1950s and 60s TV ads, on-screen prompts for conversation starters and quiz sheets, and is designed to be easy for care staff and activity leaders to use. An initiative by the History of Advertising Trust charity, the app was developed with academics at the University of East Anglia. www.hatads.org.uk using services and staff, finding that 48% of allegations concerned sexual assault, 11% indecent exposure and nudity, and 5% consensual sex.

Promoting Sexual Safety Through Empowerment highlights examples of care providers who have found ways of initiating open conversations about expressing sexuality.

“This support was found to not only help people express their sexual needs, but to potentially prevent incidents before they happen or ensure they are reported when they do,” the CQC said. www.cqc.org.uk Glasgow’s Herald and Times newspapers have launched a Think Dementia hub to help families affected by the condition. Expert advice and top tips will feature on the hub, which will help enquirers with a wide range of issues like care, research, drug treatments and

financial challenges. There are also regular podcasts. www.heraldscotland/news/thin k-dementia Guidance from the National Dementia Action Alliance (NDAA) gives practical advice on implementation of the Dementia Statements, considering them from the legal perspective of human rights.

The guidance - The Dementia Statements: Through a legal lens - looks at the legal basis of each of the statements. The “We” statements cover issues linked to identity, community, care, carers and research, each one asserting the rights of people with dementia and their carers under each of these headings. In the guidance the Dementia Statement on identity, for example, is considered in terms of the legal framework supporting it, which includes the Equality Act, Article 8 of the European

Convention on Human Rights, the Mental Capacity Act and the Care Act. www.nationaldementiaaction. org.uk/dementia-statements Dementia music charity Playlist for Life has launched a training package for health and care professionals so that they can learn about the benefits of personalised music for people with dementia. Music has been credited with reducing the use of psychotropic medication in care homes and Playlist for Life’s new Integrating into Care package is designed to train staff in a care home or hospital ward how to use playlists. A further Embedding into your Setting package takes the training to the next level by skilling up inhouse trainers who can roll out playlists at scale within their employing organisations. www. playlistforlife.org.uk/training John’s Campaign, originally set up to support family involvement with people wth dementia in hospital, has emphasised its relevance to care homes as well following publication of a new booklet.

Implementing John’s Campaign in Care Homes aims to identify barriers to family involvement when loved ones with dementia move to a care home. It promotes the idea of a “family welcome” pledge from care homes. www.johnscampaign.org.uk (Click “Resources”, then “Books”)

Events Many conferences due to take place in the Spring have been postponed due to coronavirus and new dates have yet to be announced. Here is the latest information as we went to press, including rescheduled events. n 29 October Dementia 2020: The Final Review London conference reviewing the government’s 2020 strategy and assessing the next steps to be made. More information at https:// 2020.alzheimers2020.co.uk.

n 9-10 November 2020 Dementia, Care & Nursing Home Expo Conference and exhibition in Birmingham for care home owners, managers and dementia specialists. Tickets free at www. carehomeexpo.co.uk/index.asp. n 11-12 November UK Dementia Congress 2020 Organised by JDC, the 15th UK Dementia Congress in Bournemouth will bring together the latest ideas, research and innovations, as well as being a great opportunity for professional networking. www.careinfo.org.

n 3 December Future of Ageing 2020 London conference on delivering a better society for all generations.

More information at https://ilcuk.org.uk. n 3 December Tackling Loneliness and Social Isolation in Older People Conference in London looking at progress,sharing successful and sustainable interventions. https:// localgovernment-insight.com n 10-12 December ADI International Conference Taking place in Singapore, the

Alzheimer’s Disease International event will be titled Hope in the Age of Dementia: New Science, New Knowledge, New Solutions. Go to www.adi2020.org. n 9-10 March Research Conference 2021 Alzheimer’s Research UK conference on the latest findings in dementia research taking place in Brighton. Registrations from the cancelled 2020 conference have been transferred to this date.

Information at www.alzheimersresearchuk.org.

Vol 28 No 3 May/June 2020 The Journal of Dementia Care 39

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