Category Archives: Older people

Dementia: cure, care and causes

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Jill Manthorpe

Jill Manthorpe

At year’s end, and following on from the recent meeting of the All-Party Parliamentary Group on Dementia and the G8 Dementia Summit, Professor Jill Manthorpe, Director of the Social Care Workforce Research Unit, considers the state of play in dementia research.

Preventing dementia—what an optimistic title for researchers to address. Everyone is interested. So, not surprisingly, the recent All-Party Parliamentary Group on Dementia held on 27 November 2013 heard that one way to do this is to invest in research. Optimism can be catching and the dementia scientific research community optimistically now takes an historical approach by drawing parallels with the linear developments of cancer. The story goes that cancer was rarely ‘named’ as a disease until the 1970s when mass investment in cures for cancer and greater understanding of its causes were assembled in the ‘war on cancer’. The same may now be possible for dementia—or so it seems.

Professor David Smith, University of Oxford, spoke of the myths around dementia—it’s normal ageing or it’s in the genes. But the key for him are environmental risk factors, especially ones that may be modified. These include length of education, high blood pressure in mid-life, lack of exercise, obesity and so on. But proving that these can be modified and can then prevent dementia—well, that needs research. As such risk factors also are risk factors for heart disease that’s good too. Deaths from heart disease are declining so, historically, optimism is contagious. Some of the evidence for this is recent and local—which is not always the quality of evidence one wants.

The research community has had to be nimble in responding to one recent study that counters notions of a ‘tsunami’ of dementia, with its associated fall-out (to mix metaphors) of imminent risk of bankrupting nations. This is the study of the prevalence of dementia which suggests it is on the decline or that numbers predicted were rather pessimistic: Fiona Matthews and colleagues’ study in The Lancet suggests that there are and will be fewer cases of dementia than were being predicted, possible because risk factors have been modified.

So there is hope for prevention—especially as their study reflects findings elsewhere.

Professor Smith called for more research with people who have not got dementia or who have mild cognitive impairment, arguing that such studies may be really relevant to prevention or the slowing down of cognitive decline. But this needs funding and he proposed that the balance of existing funding needs to change to funding prevention research. And this approach needs to focus on what might be modified. Professor Smith thinks that risk factor work could make a big difference—not by curing Alzheimer’s disease, but by preventing some of it. Some of the most popular of Britain’s newspapers would have to revise their notions that cures are just round the corner as a consequence.

Neurologist Professor Nick Fox (UCL) pointed out that dementia knows no national boundaries and affects the population pretty broadly. Like Professor Smith he spoke of his mother’s dementia. Like Professor Smith he also talked of dementia coming out ‘of the closet’. Naming it more specifically, e.g. by type, he thinks is also helpful so that targeted treatment might be developed for the specific form of the disease. This could go hand in hand with prevention to diffuse the ‘demographic time bomb’. But there is a problem: trials are failing—research needs to ‘try better’. Did it do ‘too little’ and with people ’too late’? He argued that drawing a parallel with HIV research could give cause for optimism. Or, in another analogy, is the focus on current dementia research with people who have already got dementia similar to doing research on cancer with people with cancer who are in a hospice? But new research on rare dementia, on genetics, on people with very early brain scan suggestions of change—all these are underway, and, again, promising.

People living with dementia at the moment also need to benefit from research, added Dr Alison Cook from the Alzheimer’s Society. She drew attention to the recent BMJ articles on strategies to promote the mental health of carers of people with dementia (SMART) by Livingston and colleagues and the economic evaluation by Knapp and the same colleagues.

If these had been drug treatments they would have been called a ‘breakthrough’ in the media, she claimed. They are hugely important studies—manualised interventions (for the curious, that means that what to do is written in a book or manual)—that really make a difference. In her view, the language around dementia care also needs to change and interventions such as arts therapy (or what might be called pleasant activities) should be put into practice when they are proved to be effective.

Dr Cook spoke of the roles of the Alzheimer’s Society in involving people with dementia and their carers in research at all levels. This was done to help set the agenda for the G8 Summit. The Alzheimer’s Society seeks to triple research funding – hoping, for example, to look at how drugs used for one condition can be useful in another, such as dementia. The Alzheimer’s Society wants also to see more ‘excitement’ around dementia research and to ensure that the momentum of the G8 summit is not lost. Baroness Sally Greengross, Chair of the APPG, added that more attention should be paid to developments around design and environment as well as encouraging the public to volunteer to take part in research.

Hazel Blears MP is one of the Vice-Chairs of the APPG and has personal, professional and political interest in dementia. She had just raised a Prime Minister’s Question on dementia, and a parliamentary debate took place on 28 November.

She had noted a real change in recognition of dementia—in no small way due to the Prime Minister whose interest, she acknowledged, galvanises the ‘system’ in politics. Hazel Blears also talked of the importance of research on care quality as well as cure—this too needs to include prevention.

Interestingly, in her focus on care she pointed to the importance of evidence for service commissioners, so that they knew (through a sort of possible kitemark system) what works. In her view the situation of homecare workers was similarly ‘incredibly important’. The G8 Summit was providing the opportunity for global commitments but Hazel Blears also talked of local community developments, such as Salford’s Dementia Action Alliance, for instance, that was involving a private taxi firm and training its drivers about good customer care for passengers with dementia. Similarly, her constituency office had looked at itself—its signage, correspondence style and approach, access and so on, as well as the need to be warm and friendly. She ended by pointing to the importance of such local as well as high level initiatives.

MP for Bridgend, Madeleine Moon, a former service manager whose husband has Pick’s Disease, spoke of the enormity of the cuts to local authority budgets and their impact on care packages—leading to minimal ‘wash, dress, feed’ care routines.

Cross-bencher peer Lord Walton spoke of the early scientific work on dementia and Alzheimer’s disease. As someone aged 92 he wondered if forgetting the occasional name was mild cognitive impairment and enquired why B12 vitamins seem to work for people with raised levels of homocysteine.

Other questions in the APPG meeting covered involving people in producing evidence and dissemination; whether homocysteine testing should be routine; the role of advocacy; planning restrictions; advice for ‘middle age kids’; and, whether UK research could really say it is leading the world? (Answer: probably not, but some is excellent. So, for example, USA has a national prevention plan, but Matthews et al.’s Lancet study is terrific.) Professor Fox commented that dementia research has grown, but capacity still needs to be built (otherwise what he described as a Battle of Britain syndrome may be developing where some people/pilots are doing too many sorties, with inadequate equipment, etc.).

Lastly psychologist Lindsay Royan spoke of the lack of support for frontline dementia care workers—which justified my presence there. We left the meeting better informed, possibly more curious about research, but not completely optimistic that research had cures round the corner. And I went back to the office to read the studies mentioned and their commentaries (see, for example, Laakkonen & Pitkälä) more closely.

Jill Manthorpe is Professor of Social Work at King’s College London, Director of the Social Care Workforce Research Unit, and Associate Director of the NIHR School for Social Care Research. Her extensive work on the topic of dementia includes EVIDEM (examining the impact of the Mental Capacity Act 2005 in relation to dementia) and a new study considering dementia in relation to the homeless population.

Follow the Social Care Workforce Research Unit on Twitter @scwru

References

Laakkonen, M.-L. & Pitkälä, K. (2013) ‘Supporting people who care for adults with dementia’, BMJ, 347:f6691. 

Livingston, G., Barber, J., Rapaport, P., Knapp, M., Griffin, M., King, D., Livingston, D., Mummery, C., Walker, Z., Hoe, J., Sampson, E.L. & Cooper, C. (2013) ‘Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial’, BMJ, 347:f6276.

Knapp, M., King, D., Romeo, R., Schehl, B., Barber, J., Griffin, M., Rapaport, P., Livingston, D., Mummery, C., Walker, Z., Hoe, J., Sampson, E.L., Cooper, C. & Livingston, G. (2013) ‘Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): a pragmatic randomised controlled trial’, BMJ, 347:f6342.

Matthews, F.E., Arthur, A., Barnes, L.E., Bond, J., Jagger, C., Robinson, L. & Brayne, C. (2013) ‘A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II’, The Lancet, 382(9902): 1405-1412.

Another transition in the NHS – another difficulty in recruiting people to take part in research?

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Nathan Davies

by Nathan Davies

Nathan Davies is a PhD student based within the Research Department of Primary Care and Population Health at University College London (UCL). He is working on a palliative care study called IMPACT and here reflects on the difficulties of recruiting general practitioners for the project in light of the changes at the National Health Service (NHS) in England.

IMPACT is a European study working across five different countries: England, Germany, Italy, the Netherlands and Norway. The aim is to improve the organisation of palliative care for people with dementia and/or cancer. In England the project is led by Professor Steve Iliffe from UCL working in collaboration with Professor Sam Ahmedzhai at the University of Sheffield, and Professor Jill Manthorpe from the Social Care Workforce Research Unit at King’s College London. As a researcher on this project I have been part-responsible for the recruitment of various organisations and services to participate in England at a time of massive upheaval and change. What we found was surprising to some extent; however, with hindsight it was not.

I work in a Primary Care research department with strong links to doctors and medical students interested in becoming general practitioners (GPs), yet despite this, our biggest headache in recruitment was in relation to general practice. Why is this? We are not one hundred percent sure and I really don’t think we have the answers about how to improve this; however, I can share some of the difficulties that we encountered. There are several possible reasons, which tend to demonstrate the huge pressures that our GPs are facing at the moment:

Time

GPs have so little time to see their patients, with us all wanting a piece of our GP’s valuable time and often wanting it now. Our GP services are so stretched that we find that fewer and fewer GPs seem to be able to afford the time to do additional work such as research and some struggle to make a home visit as often as would have been expected a few years back. Initiatives requiring GP surgeries to be open later in the evening and seven days a week may increase this sense of busyness. With the new role that some GPs are taking on within Clinical Commissioning Groups they are also having more of their time taken up with this. So when a researcher arrives in a health centre with a new research project, which also demands a piece of their time, then it is not such a surprise they are not quite so able to donate some of their time to work with researchers, despite being enthusiastic about research.

Incentives

Our Primary Care system in the UK rests on a basis of incentives, for example, the Quality and Outcomes Framework (QOF) points system. However, in our project we could not offer very large numbers of points or substantial financial inducements such as these. What we could offer was €1000 per site with additional service support costs, together with hopefully a valuable learning experience which could potentially help improve the organisation and patient service, but this was still not enough. Reflecting upon our attempts I think the closest we came to recruiting GPs was when we were discussing introducing a Locally Enhanced Service, which is again an incentive based system.

Taboo and stigmatization

Within the general public death is still very much a taboo and dementia is still stigmatized. It appeared that many of the GPs that we encountered would rather leave end of life care and palliative care to the specialists. Further to that, many would also rather pass over dementia care to the specialists, such as an old age psychiatrist.

Uncertainty pre–NHS transition

The turmoil over the proposed reorganisation of the NHS before April 2013 caused us huge difficulties. GPs were generally uncertain about what their position would be and therefore questioned whether they could pledge support to a research project which would be an additional commitment.

Confusion post–NHS transition

After April 2013 we still had big problems, indeed probably more problems than before April 2013. Post April 2013 not only were we unable to recruit as many GPs as we needed, we were not even able to arrange meetings or appointments with them to discuss the study. The changes introduced were not a smooth transition. People were left unclear about their roles, responsibilities and how they would go about completing their tasks, balancing a clinical role, commissioning role and for some a research role. Some GPs appeared to be placed in commissioning roles without real choice, and having limited knowledge of that field.

I hope that over the coming months the organisational environment will stabilise and GPs become less anxious, about the new organisations, amended systems, dementia and palliative care. We remain hugely grateful to those GPs and other organisations such as care homes and hospices who have joined this study in these challenging times.

Nathan Davies is a PhD student based within the Research Department of Primary Care and Population Health at University College London.

@ImpactProject1 | @NathanDavies50 | IMPACT website

Is a Personal Budget right for you?

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Sarah Hamilton, Research Manager at The McPin Foundation, introduces new guides available for practitioners, service users and families getting to grips with Personal Budgets and Direct Payments for people with severe mental illness.

The transformation of social care services and the shift towards personalisation over the last few years has presented many, well discussed challenges for local authorities, social care professionals and service users and their families. In mental health, however, there are specific challenges that need to be addressed. Take up of personal budgets in mental health lags behind other disability groups. In 2012-13, 8.6% of people with mental health problems received self-directed support compared to 27.3% of people with a physical disability and 28.4% of people with a learning disability (HSCIC, 2013).

Is a Personal Budget right for youOur three year research project explored the challenges of introducing personal budgets for severe mental illness in four local authorities. We identified barriers to implementing personalisation that meant that some areas were still struggling to offer personal budgets at all. Chief among these is the difficulty posed by the integration of health and social care, such that personal budgets became the responsibility of both – or sometimes seemingly of neither (Larsen et al, 2013).

Where personal budgets are available, however, other difficulties arise in practice. In the PEOPLE Study we interviewed over 50 people who received, or were applying for, a personal budget to support their mental health, as well as care co-ordinators and families. We found, even among these service users, that there was little awareness of personal budgets, what they are for and how they can be used. The shifting policies and budget cuts of local authorities made it hard for practitioners and service users to get to grips with what was possible. Among many practitioners, patience with these problems had already run out, and we heard how many no longer saw any value in starting a process that was liable to disappoint.

Despite the challenges, however, we also saw how personal budgets and direct payments, when used creatively, could transform lives and give people the determination and the control to manage their lives in the way they wanted. The learning from this research showed how the experience of getting and using personal budgets could be improved, and how practitioners, service users and families can, between them, secure the type of support that makes the biggest difference.

Reaching goals and moving onFrom this research we have produced a series of guides for people with a mental illness, their families, and mental health staff. The guides tell it as it was for the people who shared their stories with us. They point out challenges and offer solutions, and provide examples of what can change for people when it works. They include recorded stories using people’s own words to describe what getting a personal budget was like for them. The guides are freely available to download, use and distribute from Rethink Mental Illness.

 

The research project which led to the guides was delivered in a partnership between The McPin Foundation and Rethink Mental Illness, with support from Jill Manthorpe of the Social Care Workforce Research Unit (SCWRU), King’s College London, and Jerry Tew of the University of Birmingham. It was funded by the Big Lottery.

Sarah Hamilton is based at The McPin Foundation in London. You can contact her on sarahhamilton@mcpin.org, or visit the Foundation’s website to see more of its work.

@McPinFoundation | @Rethink_ | @scwru

References

Adult Social Care Statistics team, Health & Social Care Information Centre, Measures from the Adult Social Care Outcomes Framework, England 2012-13, Provisional Release, 10 July, 2013.

Larsen, J., Ainsworth, E., Harrop, C., Patterson, S., Hamilton, S., Szymczynska, P. Tew, J., Manthorpe, J. & Pinfold, V. (2013). Implementing personalisation for people with mental health problems: A comparative case study of four local authorities in England. Journal of Mental Health, 22(2): 174-182.

Online dementia training – the future?

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In this guest post Professor Rose-Marie Dröes of the Department of Psychiatry at the VU University Medical Centre in Amsterdam relates her experience of developing an online training portal for carers of people with dementia.

It has been a long journey, but our new STAR Training portal was officially launched on 11 October 2013 at the Alzheimer Europe conference in Malta.

This European Lifelong Learning project (known as STAR) has created an online training portal with eight course modules covering the key competence areas for carers of people with dementia. Each module is available at two levels and we hope that the course will serve all kinds of carers, both family carers and professionals. The authors of the course modules are dementia experts from the Netherlands, UK, Sweden and Italy. The project has also included participants from Malta and Romania. Pilots are starting, and anyone can register and try it out.

STAR project

I have learned many things myself in this project, for instance, to really focus on the most relevant themes to include in the course modules so that they will be really useful for family carers and untrained volunteers, but also for professionals.  Also, I have had to learn how to effectively use different web-based interactive strategies to support the e-learning process.

What has been most exciting has been to work together both with dementia experts from different European countries and technology experts who have been able to help us to operationalize our ideas about e-learning for dementia care. This enabled us to compose an e-learning course in different languages and at the same time one that is adapted to different cultures.

But I have also found several things challenging as a researcher. For instance, the writing of the modules, adapting them to the different countries, developing and implementing games, film clips, and tests all took a lot of time. We probably underestimated this in the timeline of the project. As a result we had little time to evaluate the long term effects of the course, that is to say, how it impacts on the knowledge and attitudes of informal carers and professionals. This would be interesting to investigate.

Would I get involved in such a project again? Certainly yes! I think it is very rewarding to be involved in European projects in which educational products and psychosocial interventions are developed and evaluated which in the end may be used in dementia care throughout Europe.

My advice for new researchers, therefore, is to get in touch with international research groups, such as the Interdem network on research into timely psychosocial interventions, and to try to participate in joint international research projects.

Together we can make a much larger impact on innovations in dementia care in Europe.

Professor Rose-Marie Dröes is based at the Department of Psychiatry at the VU University Medical Centre, Amsterdam, the Netherlands: rm.droes@vumc.nl

The Alzheimer Europe conference in Malta at which STAR was launched took place 10-12 October 2013. Twitter hashtag: #23AEC. The conference was also attended by Social Care Workforce Research Unit Director, Professor Jill Manthorpe: see Unit news items.

Dreaming Spires: reflections on the 42nd British Society of Gerontology conference at Oxford

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John Miles, PhD candidate with the Centre for Social Gerontology at Keele University and researcher on the Social Care Workforce Research Unit’s Rebuilding Lives study, reports from the British Society of Gerontology conference held earlier this month.

Beginning on Wednesday 11 September around 500 people turned up for the three days of the 2013 British Society of Gerontology (BSG) conference, held this year at Keble College, Oxford, and hosted by the Oxford Institute of Population Ageing. A combination of the Institute’s unique international connections, the prestige of the university itself, and the growing diversity of age-related research, came close to doubling the BSG’s annual attendance. Three linked events drew in well over 100 people in advance on the Tuesday. The turnout required the continuous use of two sites with some occasional overspill on to a few more. Delegates either got an unusual amount of exercise or found themselves grappling with the painfully slow evolution of disability access in a great, listed, Victorian building!

Despite such challenges the conference inspired a great deal of warmth and enthusiasm and its eclectic programme was a constant source of surprise and intrigue. Gerontology is something of a conglomerate, and by its very nature often interdisciplinary. Sessions tended to be grouped by theme rather than discipline, so that a presentation about a survey of 1000 people could be followed by an ethnography of work with ten people in a nursing home. But therein lies some of the conference’s power: as a social gerontologist with sociological inclinations, for example, I found myself in a couple of rich, and productive, post-match discussions with social psychologists. At the ‘Emerging Researchers in Ageing’ event on the Tuesday, cellist Claire Garabedian’s account of her research into playing music to people with dementia was exemplary. She identified herself as a musician and not a therapist. She explained how she had filmed her encounters to supplement and contest her subjective experience of playing one-to-one to individuals in their rooms. She accounted for the complex processes to which her presence in the home gave rise through her dealings with the staff, and with other residents. And she reported a benign impact for many of her auditors.

The cross-currents of such an account with the second plenary at the main conference the following day were significant for me. Literary scholar Helen Small showed four clips from the award-winning documentary Room 335, where the then 19 year-old documentary film-maker Andrew Jencks recorded his stay in a huge Florida nursing home over a period of several weeks. Jencks’ approach might have its drawbacks but it radically demystified the boundaries that supposedly make institutional lives so inaccessible. Moreover, as Small pointed out in a compelling analysis, Jencks’ film established in sociological terms the existence of a robust form of mutual support operating among the residents themselves, none of whom showed any interest in being looked after by their families. Su Su Liu, alongside whom I presented a couple of days later, identified something similar in the outlook of the sixty people she interviewed who attend elders’ community centres in Hong Kong. Friendship among these resilient survivors is more a performance of rhetorical support and social engagement than a pursuit of intimacy or personal trust. In the same session the family sociologist Eric Widmer from Geneva drew on a Bourdieusian perspective to examine the distribution of personal resources within older people’s family networks. This, he argued with me later, is where the social capital that counts is to be found, rather than among the vaguer configurations of ‘community’ into which Robert Putnam’s Bowling Alone has steered so many government-promoted behaviour change initiatives during the last decade. Bola Amaike and Funmi Bammeke from the University of Lagos presented papers about care and support in Nigeria. Their uncompromising demand for men to change their attitudes and expectations underpinned a bold if not quite credible attempt to reconcile the restoration of filial piety with the overthrow of patriarchy!

At the plenary sessions social gerontology itself was interrogated: in its distant relationship to the biological sciences by distinguished stem-cell researcher Paul Fairchild, and to the humanities by Small, and then for being insufficiently ecumenical in its inter-disciplinary relationships at policy level by the World Health Organisation’s John Beard. Whatever the objective justification for these critiques such challenges are welcome and appeared to be well-received. From my perspective, it is our too limited exchanges with economics and political science that remain of greatest concern. Gerontology needs to play a fuller part in challenging government inertia, and contesting destructive corporate agendas, as we plan for, and live in, our ageing society.

John Miles, who works on the Social Care Workforce Research Unit’s Rebuilding Lives study (funded by NIHR School for Social Care Research), has just completed six years on the BSG executive and is a PhD candidate with the Centre for Social Gerontology at Keele University.

Several Unit staff are members of BSG – we organised a symposium on dementia where our mental capacity study work was presented and Unit director Jill Manthorpe chaired a further symposium.

The value of advocacy support for older people affected by cancer

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In a guest post Kath Parson, Chief Executive of the Older People’s Advocacy Alliance (OPAAL), writes about a project supporting older people affected by cancer.

‘Cancer, Older People and Advocacy’ is about supporting older people affected by cancer to find their voice and say what it is they want. Evidence from Macmillan Cancer Support, our project partner, and the Department of Health indicates ingrained age discrimination in cancer services: ‘Older people with cancer receive less intensive treatment than younger people. …… there is increasing evidence that under-treatment of older people may occur‘

image001We’re doing our best to change that by recruiting, training and supporting older people who have themselves been affected by cancer to become peer advocates. We’re working on the basis that those who’ve lived through the experience of cancer, either because they or someone close to them have had a cancer diagnosis, are best placed to empathise and support others in the same situation.

I’ve also been affected by cancer and lost relatives and very close friends – so I can relate to a lot of the issues that people have and some of the unfairness that happens… I’m not afraid to challenge. That’s the kind of thing people haven’t got when they have an illness. All those strengths are taken out because of the day to day – the appointments, the pain, and the personal issues they have to deal with. Advocate

image003

Where we’ve struggled so far has been in helping health professionals understand that there might be a problem in cancer services for some older people. Despite the evidence there seems to be a reluctance to refer to independent advocacy. Maybe it’s because they don’t like being questioned or maybe they simply don’t see the need. Whatever the reason, it is a problem. One advocate explains:

That was a difficult session, particularly because there were three consultants in the room. The consultants were quite apprehensive really, I would say, about me being there… One of them actually did ask what my role was, which I explained. I emphasised that my role was not to make decisions for my client. It was to help him to understand the situation, what was on offer, to help him to make some informed choices, and decisions about his treatment and that was OK after that.

To find out more about Cancer, Older People and Advocacy, check out our blog.

Evidence Based Interventions in Dementia: What have we found?

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Caroline Norrie reports on the presentation of findings yesterday from the major research programme known as EVIDEM, Evidence Based Interventions in Dementia.

Yesterday was a great day for those of us at the Social Care Workforce Research Unit, King’s College London who worked, together with colleagues from other universities, on the EVIDEM programme on changing practice in dementia care in the community. We joined an invited audience gathered at Friends House, Euston Road, London, to hear a summary of the EVIDEM programme research findings.

Presentations of the findings of this five year research programme were delivered to representatives from the Department of Health, the charity sector, health and social care professions, service user groups and research colleagues. This was the culmination of a huge amount of work and a fantastic opportunity to celebrate the project outputs.

EVIDEM was funded from a National Institute for Health Research (NIHR) grant of £2 million which ran from 2008-2012 with the aim of developing and testing interventions for people with dementia living in the community, including care homes.

Research teams were involved from King’s College London, UCL, LSE, St George’s & Kingston, University of London, University of Hertfordshire and Central and North West London NHS Foundation Trust.

The opening address was given by Professor Alistair Burns, the National Clinical Director for Dementia at NHS England, who outlined key policy goals in dementia such as: timely diagnosis and support for people with dementia; reduction in hospital admissions of people with dementia; improving services in care homes; reduction in the prescribing of anti-psychotic drugs; and care and support for carers. Professor Burns noted, “We are on the threshold of getting the data to change practice in dementia care.” 

Chairs Peter Ashley and Dr. James Warner, then introduced the five speakers and Professor Steve Iliffe from UCL gave an overview of the EVIDEM Programme. This consisted of: EVIDEM ED (education), EVIDEM E (exercise) EVIDEM C (continence) and EVIDEM MCA (Mental Capacity Act), EVIDEM EoL (end of life).

Professor Steve Iliffe opened the presentations with a discussion of EVIDEM ED. The aim of this intervention study was to test a customized educational intervention developed for general practice, promoting earlier diagnosis with management guidelines. Five NHS providers and two overseas organisations have now rolled out this training.This randomized trial, however, showed that the intervention did not appear to change the practice of GPs, which led to discussion of what other levers could be used to encourage GPs to follow best practice guidelines for dementia care.

Dr. James Warner from Central and North West London NHS Foundation Trust introduced EVIDEM E. He discussed results from this randomized trial of exercise as therapy for behavioral and psychological symptoms of dementia (BPSD). Dr Warner described how this was a simple intervention – a person with BPSD and a their carer went on a walk five times a week for 12 weeks. This study found that regular simple exercise does not improve symptoms of BPSD, but it does decrease caregiver burden.

Professor Vari Drennan from Kingston and St. George’s, University of London, presented EVIDEM C. Work on dementia and incontinence is of huge significance because this is a key factor in why people with dementia move into care homes. This group of studies included 4 elements: i) scoping the evidence on prevalence, effective interventions, local clinical guidance on provision of NHS funded incontinent products; and a nested study of the THIN database reporting incidents rates for the first time, for urinary and faecal incontinence in community dwelling people with dementia; ii) a longitudinal study exploring the experiences and strategies of people with dementia, their family carers and health and social care professionals; iii) a feasibility study of the investigation of the effectiveness and acceptability of different designs of continence pads; and, iv) the design of a continence assessment tool tailored to the needs of people with dementia. Findings from Professor Drennan’s research team showed that the incidence of incontinence in community dwelling people with dementia is at least double that in a matched population. The use of indwelling urinary catheters, a management strategy discouraged by international and national clinical guidelines was in fact found to be double the rate in people with dementia compared to a matched population. The presence of faecal incontinence was found to significantly increase expenditure by almost two-thirds from both a health and social care perspective. “This study suggests that there are strategies and responses that primary care professionals and others can employ to encourage greater openness, thereby lessening the taboo of incontinence within the stigma of dementia.” added Prof Drennan.

Professor Jill Manthorpe, Director of the Social Care Workforce Research Unit, King’s College London outlined EVIDEM MCA. This project involved developing practice in and building evidence on the use of the Mental Capacity Act 2005 (MCA). Professor Manthorpe’s research showed that dementia care services and practitioners have traditionally not conceptualised their practice as being framed by legal rules. The MCA has proved a major challenge to this and dementia care. Key points from this presentation were that practitioners in dementia care need to be legally literate and aware of the new clauses making neglect and abuse criminal offences. There are messages also for thinking about how future changes to the legal framework of social care contained within the Care and Support Bill may be sustained. (Jill Manthorpe and Kritika Samsi’s presentation from the event.)

Professor Claire Goodman, from University of Hertfordshire presented on EVIDEM-EoL: Quality of Care at the End of Life. The project team has found the trajectories of end of life in people with dementia (PWD) are often unclear to care home staff, family and healthcare practitioners. They used Appreciative Inquiry (AI) as a way to enhance professional relationships around the care home. It fostered rapid and sustained engagement between care home staff and GPs, did not increase resource use, reduced use of emergency services and appeared to improve the management of unexpected events and unplanned hospital admissions.

Finally, the afternoon was brought to a close by Professor Steve Iliffe who gave a short presentation on how EVIDEM has worked with the government funded Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) to help build systems to give people with dementia who are interested  in research more choice and opportunity to get involved.

Overall, from the point of view of someone who worked as a researcher on one of the studies, this was a fantastic day, as it was highly satisfying to view the whole, complex programme of studies coming together and the wide range of evidence and research outputs produced.

Caroline Norrie is Research Fellow at the Social Care Workforce Research Unit, King’s College London. She is working on a NIHR School for Social Care Research funded project comparing the costs and benefits of different models of adult safeguarding.

Invisible communities: Working with older people from Europe and beyond

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Joan Rapaport

by Joan Rapaport

Our fifth annual older people conference hosted jointly with Making Research Count and Age UK London was held on 30 January at the Guy’s campus of King’s College London.
Joan Rapaport, one of over a hundred attendees and a Visiting Research Fellow at the Social Care Workforce Research Unit, reflects on the findings reported during the day.
Presentations from the day are on our website.

 

Professor Jill Manthorpe: Addressing ‘invisible’ inequalities in social care – Why now?

In her opening comments, Professor Manthorpe described an ‘elastic’ Eurovision definition of ‘White Other’ which included non-EU and EU nationals who were also often defined as White Other as well as the more frequently cited migrants from Canada, USA and Australia. As usual, she noted, London is a hotbed of change. The backgrounds of ‘White Other’ people are extremely diverse, with huge implications for appropriate social care provision. However, although the Equality Act 2010 is now in force, the needs of this population group as they age have not been explored.  Professor Manthorpe acknowledged the challenges faced by busy social workers and the constraints of assessment forms but asked:

  • How can appropriate services be provided if vital biographies and life stories have not been recorded?
  • What happens to people with memory problems or whose speech is impaired after a stroke – who provides the life experience to inform the care plan?
  • How can we help people to recall their memories and help care staff to see the person behind the care plan, so that social care truly reflects their needs?

Professor Karen Christensen: Older Scandinavians in London – how do they fare?

Professor Christensen identified the longstanding historical connections between Norway and Britain. Norway’s population is small (5 million) and scattered amongst 429 municipalities. It is difficult to find out the exact numbers of Norwegians living in the UK today, as the government figures are workforce related.

Her recent and unique life course interviews of seven Norwegians living in London, ages ranging from 59 – 75, revealed that these women came to London for love and marriage, au pair work, freedom from close knit communities and disappointment about Norwegian welfare services. Their passage was made easier because their fathers had encouraged them to learn English, as a ‘useful’ language. Those who had trodden the au pair and marriage route had stayed for family reasons and had chosen part-time work to suit. Others, who had come for career reasons and later married here, had made their decision to stay right from the start. These women juggled their careers with family responsibilities and worked until retirement. None had come ‘to get a better life’ in the traditional migrant sense.

Only one, married to a black man, had faced discrimination. Although settled in Britain, none wanted to become British citizens. They had all their rights, bar the right to vote. Professor Christensen considered that if there had been the option of dual nationality, their decisions might have been different. However, they could keep in touch with their Norwegian culture through their community networks and work and telling their grandchildren about Norway. There was also the Norwegian ‘injection’ of the holiday cottage – but then straight back to Britain! These women had no fear of getting old in Britain, as long as they could avoid residential care. They hoped for help from their families in return for caring for grandchildren. Those who had worked for Norwegian agencies received higher pensions than their British counterparts. They could thus afford private care.

Dr Shereen Hussein: Older Turkish migrants’ care needs in the UK: cultural encounters and unmet needs – how do these compare?

Dr Hussein identified three distinct Turkish population groups: Turks, Alevi/Kurds and Turkish Cypriots living in the UK, sometimes referred to as ‘invisible minorities’. Although separate in their homeland, ethnic divisions are less apparent over here. However, each group has different ethnic histories. Old age is taking some by surprise.

With a Turkish colleague, Dr Hussein has been interviewing older Turkish men and women (ages ranging from 55 – 102) as well as Turkish care and community care workers. These interviews were conducted in Turkish (crucial to the study). Typically, and in stark contrast to the Norwegian experience, people came to London for a ‘better life’, to find work and possibly to flee persecution. The jobs they found, often through friends, were low-skilled, with poor working conditions and without ‘formalities’ (regulated). They did not have to speak English because the whole workforce spoke Turkish. Many had been over here for 50 years and never learnt English. Once they left the labour market, they found a ‘sudden’ need to speak English and know the system. Language posed a huge barrier, although those with adult offspring who had grown up in the UK were more aware of services and activities. However, for others retirement has meant ‘when I became old’, nostalgia for their homeland, loss of identity and feelings of disempowerment. Whilst inter-changeable care responsibilities from and for older people were assumed within the culture and elsewhere, these expectations could not always be met and older people were sometimes obliged to use social care services with trepidation. The gap between actual and perceived social care needs was large and culturally sensitive services were viewed by the research participants to be limited. Overall, the Norwegian participants painted a far rosier picture of growing old in London than their Turkish counterparts.

What needs to change?

  • Awareness that family is an important care provider but is not always available;
  • A focus on working with younger and older Turkish communities to bridge language and care barriers;
  • Assessment of the cost implications of not providing culturally sensitive early intervention and preventative measures, on crisis and intensive care services.

Jo Moriarty: The Equality Act 2010: Protected or ignored characteristics?

Jo Moriarty explained that most of the provisions of the Equality Act had come into force in October 2010, and those relating to Age Discrimination later in October 2012. Direct and indirect discrimination, harassment and victimisation are now outlawed. There are nine protected ‘characteristics’ of which seven apply in her review on the needs of older people: age – disability – gender reassignment – race – religion or belief – sex and sexual orientation. The study considered the impact of the Equality Act for Age UK across five different services. However, the task was very difficult because of the invisibility of the population in question and the dearth of research focusing specifically on equality and diversity. Routine monitoring for different protected characteristics is uneven, there are differing reporting standards and detail relating to the characteristics is not picked out. For example, in respect of Falls Prevention and the known benefits of exercise classes, areas such as accessible publicity, opportunities to socialise, religious preferences and single sex facilities have not been researched and the impact of discrimination on take-up is unknown. Day service provision is similarly neglected. Faith-based services may provide communal social activities, but these too are very under-researched. Furthermore, as more older lesbian, gay and bisexual people live alone than other groups – does this mean they have an increased need for home and hospital services?

Jo Moriarty warned of the risks of making assumptions and cited the example of the famous film star, Merle Oberon who was elusive about her Anglo-Indian background, to the extent she hid the fact that her Indian mother was actually her dresser. Jo highlighted the similar trap of erroneous assumptions of heterosexual relationships and the impact on people’s feelings.

What are the key messages?

  • Carry out more research on the needs of people with protected characteristics;
  • Provide inclusive publicity to reassure people;
  • Show staff have been trained in equality and diversity issues;
  • Avoid stereotyping;
  • Seek service users’ views even on sensitive matters; people like to be asked, especially if they are consulted on how to ask the question.

Dr Nan Greenwood: Does ethnicity matter? Working with older people from minority ethnic groups

Dr Greenwood said that her literature review had confirmed that health and social care issues for older people from minority ethnic groups were truly invisible. There was some information, but no one collates it. Statistics are unreliable and research is limited. Older refugees in particular may be isolated because of health and social problems and cultural differences and face multiple layers of disadvantage. If they have no permanent address they may have difficulties registering with a GP and thus accessing health services. Cultural perceptions about illness and the process of ageing may also act as barriers to accessing services more generally. The experiences of carers from minority ethnic groups are additionally compounded by disadvantage and marginalisation and culturally insensitive services. The effort to obtain help (phone calls and forms) is a major barrier to seeking help. Carers value information, accessible, culturally sensitive services and, most importantly, face-to-face contact and first language support.

People from lower socio-economic status groups from all minority ethnic groups describe their health as poorer. This information is complex as ethnicity is multi-faceted and changing and given the opportunity people may define themselves as belonging to more than one race. Homogeneity within groups may be overemphasised and mask heterogeneity. Ethnicity needs to be considered against other aspects of identity such as gender, age, religion, disability and health. Dr Greenwood stressed that the general principles of good care need to be embedded throughout and cited recent research that showed people from minority ethnic groups also wanted to be treated with dignity and respect.

Dr Greenwood acknowledged pros and cons in respect of separate or mainstream services. Separate services may be more culturally sensitive and innovative and mediate with general services. However, they may also bleach culture and set people apart. Evidence is as yet lacking to help tease out these and other issues.

What are the key messages?

  • Be aware that the concept of ethnicity may sometimes obscure other facets of identity and difference;
  • Health and social care evidence about the needs of people from ethnic minorities exist despite the limitations of the research;
  • Stop problematising ethnicity and blaming the characteristics of ethnic minorities e.g. for low take-up of services;
  • Keep abreast of changing patterns of health and disease to improve take up of screening and early intervention;
  • Keep the common factors of care in sight.

Jean Lambert MEP: Does London work for older Europeans?

Jean Lambert explained that it is assumed there about 100,000 EU nationals living in London who are over 60 years of age. They have come at different times and for different purposes, some as a result of WWII, refugees fleeing persecution, Jews from various parts of Europe, to join families, for work and so on. Under EU directives, discrimination is forbidden. Information is available in twenty-three languages on the EU website to help people attain their rights. Whilst discrepancies exist between different health and welfare systems across all member states, problems for non-EU nationals living within the EU are even greater.

In respect of workforce mobility issues and the UK, Jean Lambert expressed concern about attitudes in the UK in respect of transitional arrangements relating to people coming into the country from Bulgaria and other parts of Eastern Europe. Previously, even when apparently welcoming people from Poland, a whole host of problems had arisen: lack of support, language problems and people not understanding their rights and entitlements and often those on the administering side likewise. People when they arrive know they have rights but not what these are. Nothing has since changed.

This is the Year of European Citizenship and to mark the occasion one million Euro has been set aside to put on a number of events. As part of the Year, the European Parliament has commissioned and will report on discrepancies between the different systems, including those between Europe and the UK. In addition, funding from the Citizen Rights to Equality Programme (under the former European Year of Active Ageing) is expected to report on the needs of people needing dementia care.

What are the key lessons?

  • More research on the needs of older people from these minority groups could be helpful;
  • People need to be able to access information about their rights in their own language;
  • People need a single point of expert help and someone to assist them through the process.

Conclusions and closing comments

Professor Manthorpe highlighted the importance of ensuring that the histories of people from ‘White Other’ population groups were not forgotten, given their relevance to appropriate health and social care provision. The day had demonstrated that people have very different trajectories and these need to be acknowledged. In particular, the question remains how can social workers respond under their current work pressures at a time of dwindling resources? Attention to a person’s story may help at least to get things right first time by making sure that services are both accessible and acceptable.

Joan Rapaport is Visiting Research Fellow at the Social Care Workforce Research Unit, King’s College London. The Invisible Communities conference was organised by Jess Harris. Twitter hashtag for the conference is #olderpeople5

Research on older Turkish migrants in the UK – emerging findings from ROWM

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Dr Shereen Hussein

by Shereen Hussein

With our conference on Invisible Communities: Working with older people from Europe and beyond coming up at the end of the month, Shereen Hussein, Senior Research Fellow at the Social Care Workforce Research Unit and co-founder of the Research On Workforce Mobility (ROWM) network, discusses her work on the Turkish community in the UK. 

There is increasing interest in the experiences of people who migrated in their youth during the mid-20th century and are now growing older in the UK and other European countries. While Turkish migrants are not as large a proportion of the UK migrant population as they are in other European countries such as Germany, they are a sizeable part of some migrant communities, especially in London.

We have recently been working on collaborative research focusing on the experiences of older Turkish migrants living in London. This has explored their perceptions of ageing, of possible long-term care needs and their access to services. Sixty-six interviews with older Turkish migrants (aged 55 years or more; 34 women and 32 men) revealed two major themes, 1) ageing and belonging, and 2) identity in old age.

Turkish migrants’ stories were full of accounts and examples of adjustments, compromises and nostalgia that surfaced in old age when labour participation and feelings of ‘importance’ started to fade. These feelings seem to be exacerbated by limited English language skills, resulting from living in relatively closed communities within the UK, working in ethnic economies and providing services for the Turkish community. Many older Turkish migrants interviewed showed signs of an ‘elective belonging’, referring to the way in which ‘place biographies’ have become less important when compared with personal biographies and identities. However, while the majority of older people interviewed appreciated being in the UK, they felt they had little choice over where they lived in retirement.

Early findings also show that older Turkish migrants who have educated offspring are more likely to be aware of their needs and how to access services. However, there were high expectations of family members, with family and kinship being centre-stage in later life. For some the strength of these ties could be tested in challenging situations. Moreover, older women felt strongly that their duty to care for their husbands, their children and their grandchildren was paramount. Despite or perhaps because of this, some older women did not feel that they were important or well supported.

The findings have wide implications for services and resonate with the experience of other older Black and Minority Ethnic communities in the UK. They highlight the need for more culturally appropriate services. It is also important to raise awareness of existing support to avoid social exclusion and facilitate access and participation, including volunteering, among older Turkish communities. The findings will be discussed in more detail at the upcoming event, Invisible communities: Working with older people from Europe and beyond (30 January 2013), taking place in London.

The experiences of older Turkish migrants living in Denmark is also a research interest of ROWM network member Dr Anika Liversage and her colleagues at the University of Copenhagen. In a recent visit to the Unit, Anika and I discussed potential similarities between Turkish migrants in the UK and Denmark. We observed the importance of migration history, changes over time or trajectories, and how the ways older Turkish people lived their lives shapes their ageing experiences.

I am conducting this research with Dr Sema Öglak (Dokuz Eylül University, Turkey). We are both members of the Research On Workforce Mobility (ROWM) network. The ROWM network is flourishing (new members are always welcome), with members from around the world intent on improving our understanding of the intertwined relationships between migration and long-term care, both for those receiving and providing such care.

Dr Hussein is Senior Research Fellow at the Social Care Workforce Research Unit, King’s College London. She tweets as @DrShereeHussein.