The increasing numbers of older people with dementia and older people from minority ethnic groups in the UK present new challenges for many housing services according to Gearing Up: Housing, Ethnicity and Dementia, a report just published by Age UK. Valerie Lipman and Jill Manthorpe from the Social Care Workforce Research Unit at the Policy Institute at King’s College London examined the ways in which Housing Associations in England and Scotland are preparing themselves for tenants who develop dementia, especially those who are from minority ethnic groups. Continue reading
Dr Linda Birt,Senior Research Associate at the School of Health Sciences, University of East Anglia, discusses the Dementia ‘I’ statements and the PRIDE programme. (439 words)
I was diagnosed in a timely way
I know what I can do to help myself and who else can help me
Those around me are well supported and in good health
I get the treatment and support, which are best for my dementia, and my life
I feel included as part of society
I understand so I make good decisions and provide for future decision making
I am treated with dignity and respect
I am confident my end of life wishes will be respected. I can expect a good death
I know how to participate in research
(Abbreviated from outcomes derived from the work of the Dementia Action Alliance)
The ‘I’ statements in dementia are having an impact, being discussed by the Prime Minister and Professor Alistair Burns. These statements indicate what a good experience of living with dementia should look like. Continue reading
Mark Ivory, new editor at the Journal of Dementia Care, spoke yesterday at the Margaret Butterworth Care Home Forum. This is a transcript of his talk. (2,712 words)
Good afternoon. So far as they can be separated, this is partly about policy and partly about politics. Where better to start than the Conservative party election manifesto? Pledges:
- Delivering on the Prime Minister’s Challenge, “making sure that everyone diagnosed with the condition gets a meaningful care plan to support them and their family.”
- UK will be world leaders in finding a cure for dementia by the target date of 2025.
- All companies with more than 250 employees would be required to allow them three days of volunteering time each year, something the Alzheimer’s Society welcomed in the context of the Dementia Friends initiative.
It’s the one about volunteering, considered more broadly, that I really want to focus on. In case we were under any illusions that the Tories had dropped the rhetoric of the Big Society, there was a section of the manifesto with the heading “Helping you build the Big Society”. “Volunteering is at a 10-year high,” it boasts, “with 3 million more adults giving their time last year than in 2010.” Continue reading
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
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.
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.
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.
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.
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.
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.