Dementia: cure, care and causes

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


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?

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:


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.


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

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

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.

Making positive changes

In this guest post, Natalie Atkinson, a student at the University of Cumbria, recounts her own experience of entering further education as a care leaver and ex-offender. Natalie took part in the Communities of Practice programme: Delivering on the integration agenda for people with multiple and complex needs as an ‘expert by experience’. The project was run by the Social Care Workforce Research Unit (SCWRU) at King’s and Revolving Doors.

Having taken part in the ‘Communities of Practice’ programme run by SCWRU and Revolving Doors Agency as an ‘expert by experience’ I learnt a lot about the professional practices which are intended to support people like myself. Much so called recovery orientated practice for example, is about ‘encouraging’ excluded people to take up education, training and employment opportunities.

However, despite these ‘good practices’, I still experience many barriers on a daily basis including financial, discriminatory, stereotypical views that exist around care leavers and ex-offenders. I had to fight to be accepted into University and be given a chance to prove I was a ‘worthwhile’ candidate as I was not the typical ‘safe’ option that would be guaranteed to succeed. Some people still seem to look in shock if they find out I am a care leaver and previous prolific offender studying a Policing and Criminology degree, but I just highlight that I have got all the relevant experience to be successful. Who’s better to work with those in the Criminal Justice System and Care System? Those people with a degree or those with life experience and a degree? I would have to settle for the latter.

It has only just come to my attention that even though Social Services had closed my case at 21, I am entitled to request support for financial assistance for my undergraduate fees and accommodation as a former relevant care leaver… Not that I am expecting a quick response, as it concerns requesting money from a Local Authority. I would not have known about this support if I had not come about it by chance while doing University work. The question that needs to be asked is how many other former relevant care leavers are unaware of their entitlement to support when accessing higher education between the ages of 21 – 25? From my own personal experience I presume this is a substantial amount of people.

I am now entering my third year at University and have recently started to look for funding for a Masters Degree in Criminal Justice that I hope to start in 2014. Yes that’s right; I want to carry on studying in order to better myself and to be able to be in a position to encourage those who have been ‘excluded’ and ‘labelled’ by society to have the confidence and belief in themselves to return to education, training and employment, and build the future that they deserve. I have taken the first steps by nearly completing a degree and securing employment working as a support worker in homeless hostels through my own determination, but how many other people would have given up due to lack of support, knowledge, confidence and funding?

Natalie Atkinson was an expert by experience on the Communities of Practice programme. Lead researcher at King’s on this project was Senior Research Fellow, Dr Michelle Cornes.

Mobility and the researcher today

Dr Kritika Samsi

Dr Kritika Samsi

Kritika Samsi, Research Fellow at the Social Care Workforce Research Unit at King’s College London, was recently invited by the Irish University Association to attend the Researcher Careers & Mobility Conference in Dublin on 14-15 May 2013 (hosted by the European Presidency). Here she reflects on mobility and what it means for researchers today.

The Researcher Careers & Mobility Conference was a packed 24 hours, combining plenary sessions, with panel discussions, and interactive workshop discussions. Informative, challenging and controversial, the conference brought up some significant issues affecting researchers in Europe and globally today.

In our workshop on the subject of Mobility, four types of mobility were identified – geographic, when the individual physically moves countries for opportunities elsewhere; virtual, when the individual engages in collaborative work with partners in different countries; inter-sector, when scientists from academia make the move to industry; multi-disciplinary, when scientists moves between different disciplines within or beyond one single field of study.

Instead of focusing on the question “why is mobility good?” – our workshop group chose to discuss “is mobility good?” – clearly highlighting our orientation, and our need to explore thoroughly whether mobility was always necessary, and whether funding bodies give it too much or too little weight.

Geographic mobility is a significant criterion in most EU funding applications – it is considered useful for the applicant to have had international experience, to demonstrate networks and links with international universities, and to show the ability and willingness to move to other countries for collaborative research in the future. This is, no doubt, a wonderful opportunity for many researchers and one that many embrace with open arms. Not surprisingly, most conference participants had experience with mobility and almost all talked positively about it, saying that they were greatly enriched by the experience. Current initiatives at European immigration level, such as the introduction of the scientific visa that fast-tracks scientists from outside the EU to enable them to work in EU universities and research labs in Europe, were seen as a good development in this regard.

We, however, questioned whether geographic mobility was always possible or valuable, for a number of reasons…

The practicalities of moving are enormous – from understanding differences in tax structures, pension arrangements, and setting up other formalities like bank accounts. Although Euraxess provide some very practical assistance with this, there are additional stressors to finding and setting up home again, getting a new driving licence, that individual researchers have to take on themselves. Getting used to another workplace culture and lifestyle also takes time. If the move is not permanent, we wondered whether the set up costs outweighed the benefits, and whether the emphasis on geographic mobility takes all of these into consideration?

Do all of these practicalities weigh more heavily on certain groups of people – i.e. are some groups marginalized for being immobile? Men and women with families where dual jobs and incomes are necessary, researchers with physical disabilities or those reliant on social welfare for other reasons, researchers with responsibilities for caring for elderly family members, may all have commitments they are unable or choose not to disengage from. Does the stringent need for geographic mobility marginalise what are a significant group of researchers that may be forced into choosing alternative careers?

Another question that arose in discussion was whether it was necessary for a researcher to move if the best place to do research in a certain topic was in the very research centre they were currently based in? Did the current over-emphasis of the value of geographic mobility sometimes mean that researchers and funding bodies do not value their current situations, roles and research centres sufficiently, and so they do not capitalize on current opportunities as much as possible?

We also questioned the concept of ‘over-mobility’ – of moving too much and creating a network of international contacts and support, moving from one post-doc position to another in various international universities, but failing to have ‘put down research roots’ and created a track record in one university long enough to progress up the career ladder. While some agreed that geographic mobility often results in a drop in salary and grade, others felt that this was not always the case and moving to another university/country could be a promotion, thereby increasing the chances of moving up the career ladder.

We debated this and other issues in relation to Horizon 2020 – which means that shorter-term grants are likely to be available under the new funding framework, encouraging those previously discouraged from committing to long-term mobility to apply for shorter spaces of time in other locations. There is also likely to be greater emphasis on the other types of mobility. The effective use of technology may make it less necessary for people to physically move to achieve successful collaboration.

We finished hopeful that this may be the way forward to achieving the right kind of mobility for the right reasons.

Dr Kritika Samsi is Research Fellow at the Social Care Workforce Research Unit, King’s College London. She is also active in the Voice of the Researchers (VoR) network, which aims to act as a bridge between researchers and policy-makers, bringing together researchers and enabling them to take an active role in shaping the European Research Area.

Practice into Research

Katie Graham, who recently joined the Social Care Workforce Research Unit at King’s College London, reflects on practice, research and the recent Department of Health conference on Adult Safeguarding.

The connections between practice and research seem pretty obvious in theory given the emphasis in social work training upon becoming ‘research-minded practitioners’. But they are often difficult to realize, with increasing workloads and the pressure of daily practice pressures of risky, even worrying, situations. I started working at the Social Care Workforce Research Unit at the beginning of April after having been a social worker in a specialist adult safeguarding team in a local council.

My transition between practice and research has been a fairly smooth one – particularly once I’d overcome the urge to case note each conversation I had! I am working on the ‘Models of Safeguarding’ project, so this research is directly connected to my recent practice. Last week I attended a Department of Health organised conference ‘Adult Safeguarding: A Return to Practice’ which further helped to ease my transition as it was a conference specifically designed to make research available to practitioners. The event was an interesting mix of policy discussion related to the Care and Support Bill and practice guidance from ADASS. There was a discussion of the neglected role of housing in adult safeguarding and practice innovations in the prevention in adult safeguarding. Of great relevance to the Unit was a discussion by representatives from SENSE about the complexity of safeguarding alerts with adults who may be perceived to be ‘at risk’ but where no intentional harm is evident. The speakers from SENSE described their approach to safeguarding when working with deafblind people who communicate through touch. I will be talking more to the Unit’s Phd student, Peter Simcock, about this – since this topic is the focus of his doctoral research. A final presentation from Dr David Orr related to his research around self-neglect.

Mike Briggs from ADASS (2013) outlined its new ‘top tips’ for adult safeguarding. His presentation contained vital information for any practitioner and researcher in this area. However, what was striking was how policy statements hide the complexity of daily work in social care, whether working as a social worker, personal assistant (independently for an employer) or support worker in a large organisation. The potential to place adult safeguarding on a firmer statutory footing with the Care and Support Bill (2012) is welcome, however it will be its eventual guidance that will likely be most useful to social workers’ daily decision-making. Jeremy Hunt, the Secretary of State for Health, has said of adult safeguarding that councils have been “ticking the box, but missing the point” (in ADASS 2013: 3) suggesting an over-reliance on processes rather than outcomes for people.  Rigid constructions of ‘abuse’ and ‘harm’ and a person ‘at risk’ may be as damaging as inaction but, as a recent article by Angie Ash (in the British Journal of Social Work) suggests, social workers often do not take action.

The conference emphasized that adult safeguarding is ‘everybody’s business’. However, from my own perspective finding my feet in a research environment, it is also clear to me that research and practice are not (and should not be) far apart in this area of work. It is through dialogues (and the potential of action research –  see Joan Rapaport’s earlier blog), including the experiences of people perceived to be ‘at risk of harm’, that we can develop interventions and gain the skills and confidence to effectively minimise the risk of harm. Social workers have a strong tradition of respecting people’s rights to self-determination but also their rights to protection. The Models of Safeguarding project, investigating how different councils organise their safeguarding adults responsibilities, is engaging with these complexities.  I think that this resonates with everyday social work practice.

Katie Graham is Research Associate at the Social Care Workforce Research Unit.

What do social work and research have in common?

Joan Rapaport

by Joan Rapaport

At the Practitioner Research seminar on Tuesday 30 April Joan Rapaport will ask: ‘Why should social workers do research?’ Here she explains how she personally became interested in this question as an Approved Social Worker and PhD student. And, focusing in this post on Action Research, she points out the degree of overlap between methodology in research and social work practice.

There are still a few places left at the Practitioner Research seminar, which takes place at King’s College London, but please book by end of day Friday 26 April. | #practres

Imagine a world where social workers were enthusiastically sharing ideas, holding seminars to share their latest research findings and encouraging research developments through various support networks. Given the current shortage of practitioner research, could this position ever be achieved? And why should we strive to ensure that it does?

It was only during the course of my PhD study on the neglected role of the nearest relative under the Mental Health Act 1983 (for e-summary see Rapaport, 2012) that I began to be aware of the importance of research and theoretical frameworks to guide and develop practice. Officially recognised as a patient safeguard against unwarranted hospital detention, the nearest relative had attracted considerable concern, especially amongst social workers, because of the potential for the role to land in the hands of poorly motivated relatives. My research confirmed that it was better known for its vices than its virtues. However, it also found that when the nearest relative powers and social work duties worked reciprocally for the ‘patient’s’ benefit, the nearest relative was indeed an effective safeguard. This finding led to a development of normalisation and social role valorisation (‘SRV’) theories and the discovery of reciprocal role valorisation (‘RRV’). This was found to occur:

where the nearest relative and social worker supported each other to achieve mutually respected and identified goals to help the patient which were also recognised by the professionals and significant others involved. (Rapaport, 2012)

Although a discovery of the nearest relative study, RRV is relevant to practitioners because of its versatile potential for other social work settings, especially where professional duties and family responsibilities combine. It also demonstrates how social workers, in the course of fulfilling their duties, can simultaneously enhance their own professional image. The importance of practitioner engagement in research and theory development is once again gaining ground in professional circles (McLean et al., 2012). How might this laudable objective become a reality?

A PhD is a huge undertaking in terms of time and money. Typologies such as Action Research may therefore be more accessible and appealing especially as it is closely linked with practice and uses approaches familiar to practitioners such as qualitative interviews.  It is a strategy for change, can be undertaken by practitioners and service users alike, and readily meets the social work ideals of user empowerment. Models described by Beddoe and Harington (2012) and Frith (2012) amply demonstrate these characteristics. The former describes a project ‘Growing Research in Practice’ (GRIP) to enhance the research capability and confidence of groups of social workers in Auckland, New Zealand. The latter, conducted in Iceland, explored ways of helping children and young people facing predicaments. Both studies, (and also that of the nearest relative) involved full stakeholder participation and methods such as interviews, group discussions, evidence-based trials and evaluations and debriefing sessions – all part and parcel of social work – to gather data. The New Zealand project reported several positive outcomes including opportunities for professional enhancement, shifts in organisational culture, improved collaborative working and opportunities to educate and involve others. The main finding of the Icelandic study was a shift from practitioners making decisions for young people to giving them the knowledge, skills and resources to empower them to make decisions for themselves. In short, both studies had extremely valuable outcomes for all concerned.

Whilst the case for professional development is well made by the above, Action Research may also provide managers with a cost-effective way to conduct in-house evaluations and to shift obstructive cultures and help redefine objectives. Opportunities to develop leadership skills and gain recognition through the dissemination of project findings are also likely outcomes. As an illustration, the findings of the nearest relative study were used to inform the reform of the Mental Health Act 1983 and also a number of other carer and advocacy-type projects.

With the high standards of professional registration and regulation in mind, Action Research would seem to hold promise for the social work profession and service user empowerment. Given its approaches are familiar to social workers, it could arguably become part and parcel of social work practice. Promotional seminars, product champions and support networks will be required to spread the word and further its worthy objectives.


Beddoe, L. and Harington, P. (2012) One Step in a Thousand-Mile Journey: Can Civic Practice Be Nurtured in Practitioner Research? Reporting on an Innovative Project. British Journal of Social Work, 42; 74 – 93.

Frith, E. (2012) Child-Directed Social Work Practice: Findings for an Action Research Study in Iceland. British Journal of Social Work, 1-19; doi:10.1093/bjsw/bcs099.

Maclean, S. with Collins, P., Dean, A., Moore, S., and Tucker, G. (2012) The food of good practice. July/August, Professional Social Work.

Rapaport, J. 2012 Reflections on ‘A Relative Affair’: The Nearest Relative under the Mental Health Act 1983.

A version of this piece originally appeared in Professional Social Work.

Joan Rapaport is Visiting Research Fellow, Social Care Workforce Research Unit, King’s College London.

Is the care worker perspective still overlooked in disability research?

Professor Karen Christensen

Professor Karen Christensen

A long time ago – at least as it is defined in the academic world – in the 1990s, the British professor of social policy Clare Ungerson published an article: “Give them the money: Is cash a route to empowerment?” In this article she forecast many of the challenges arising from welfare policies intended to empower disabled people in their everyday lives by means of cash payments. The idea was that instead of letting disabled people receive traditional services such as home help they should receive money to employ their own care workers and this should be “a route to empowerment”. The important contribution that Ungerson made with this early article about these cash payments was to point to the care worker’s perspective within a welfare scheme that aimed at providing services on the user’s terms. If she was critical of disability writers in this and later articles, and she was, so she was subject to criticism herself by disability writers such as Jenny Morris and others.

Since the late 1990s cash-for-care schemes have developed in different ways in many European countries and there is a growing literature investigating this form of welfare. However, this basic tension underpinning the field remains and also, reflecting this tension, the care worker perspective remains the perspective that is under-researched within the disability research field. Although currently ‘multidimensional aspects’ and ‘inter-disciplinary studies’ are keywords for new research projects, many networks and associated research areas are specialized or restricted within limits and this may take some of the research on ‘care’ – actually an unpopular concept within the independent living ideology, which has pushed forward welfare schemes that could empower disabled people – out of disability research. Interestingly, this does not seem to be the case with research on long-term care for older people, where studies about the care of older people are a central part of the research area.

I am currently working on a study about welfare, migration and care work, which is empirically based on life histories of migrant care workers in Norway and the UK, and these questions around disability research arise in the project for two reasons. One is empirical and concerns the life stories: in all of them care work, and particularly personal assistance work for disabled people, plays a role, though the role varies in relation to the different life projects of the migrants. The second reason is that migration is no longer an issue only for countries like the UK with its colonial past and long traditions of bringing migrant workers into the workforce; it has also become an issue in Nordic countries. So here, for example, the health and care sector is one of the main employment areas attracting migrants, in particular women. In the UK, migrants have played a role in the cash-for-care scheme since its start, while this is a more recent phenomenon in Norway. The difference is due to the different timing of the migration waves in the two countries; in the UK starting after the Second World War, while in Norway significant numbers of migrants first started coming after the EU extension in 2004, opening the borders to citizens from several East European countries. In other words: migration is now an issue for the cash-for-care system and for the discussion of disabled people’s empowerment in both countries.

Due to the ageing population in both countries there is a growing need for workers in the health and care sector. However, in the UK, and Norway (as well as the other Nordic countries), this sector is experiencing a recruitment problem, in particular regarding direct care jobs. This type of work is stigmatized as female low status work and, particularly in the UK, is associated with very low wages. Therefore the work is often seen as unattractive to indigenous workers and the shortages caused by this contribute to the explanation as to why the work appeals to migrant workers. Among the multiple motivations for migrants taking up this work are, for example, the lack of recognition of their qualifications and the necessity therefore to take the kind of jobs that are available and the flexibility of these kinds of jobs (part time, no fixed hours, live-in options etc.) which may appeal to their specific life situation. Overall, the structural point of departure, however, is of a reserve workforce situation which raises issues regarding, for example, the risks of developing working conditions which are below the general standards in these countries. Another risk, particularly in the UK, concerns the widespread use of private agencies supporting disabled people in their employer role, but often for a price that reduces the care workers’ wages significantly. Both disabled people and care workers are vulnerable groups under such circumstances.

What I am trying to say is that empowerment for disabled people is not only a disability project, but also still – and maybe even more so now, due to the new groups of workers entering the labour market – a care work issue. Care work is increasingly globalized: labour markets are no longer restricted to localities or countries. New worldwide job seeker web sites have been established and the rapid development of technology makes it possible to keep in contact with families in the home country. Including these changes in the discussion requires paying attention to the ways migrant care workers themselves handle their work situation as part of their lives. The life history perspective affords us a way of understanding this as an ongoing process of balancing individual preferences with the structural conditions set by immigration policies and the way in which the welfare scheme is implemented, as well as enabling us to examine concrete interactions with disabled people about the assistance they need and want to control in their everyday lives. Without knowledge of the care worker side, future discussions on how to empower disabled people will lack insight. These future discussions will benefit from opening the borders between disability and care work.

A version of this piece, together with the photograph of Prof Christensen, was originally posted on the blog of Nordic Network on Disability Research, 12 December 2012.

Karen Christensen, Professor of Sociology at the University of Bergen, is Visiting Research Fellow at the Social Care Workforce Research Unit at King’s College London. Her co-authored report on the marketization of older people’s services in Scandinavia is forthcoming. She took part in the Invisible Communities conference here at King’s. For more of Professor Christensen’s work on the Norwegian context see the Research On Workforce Mobility network, of which she is a member.

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

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.

How should research evidence be used to improve adult social care policy and practice?

Martin Stevens

by Martin Stevens

This question has bothered me since I started as a social services research officer in 1992. Attending the NIHR School for Social Care Research (SSCR) Workshop: Maximising Research Impact in Adult Social Care last week was a chance to ponder this question and, more usefully, to hear other people’s ponderings. The event was very well attended, with a mix of academic (including Jo Moriarty, Jess Harris and me from the Social Care Workforce Research Unit) and local authority staff, with a small number of people who use services and carers. First up was a panel discussion, in which Martin Webber (York University); (Chris Rainey (West Sussex Social Services Research); and Deborah Rutter (Social Care Institute for Excellence – SCIE) gave short introductory accounts, followed by a long question and answer session. Three presentations followed: Sarah Carr (SCIE) emphasised the roles of service users and carers; George Julian (Research in Practice for Adults) gave some practical aspects using research evidence; and Jonathan Grant and Molly Morgan Jones (RAND Europe) presented various approaches to measuring research impact in social care.

Naturally, in the presentations and discussions, there was a sense of frustration about apparent lack of change over the years. Best metaphor of the day was from the Unit’s own Jess Harris, talking about the need to ‘bite people on the bottom’ when trying to encourage the use of research in policy. These feelings are understandable, the issues and barriers raised by all speakers – time, resources, attitudes of practitioners, managers and policy makers, levels of training, understanding of research methods, lack of good quality research presented in easy to understand formats, seem to have been around during my whole career as a researcher.

More positively, there was a welcome emphasis on dialogue and engagement of different stakeholders. This is valuable as there has often been a somewhat mechanical view of research evidence as a lever to change practice. This simplistic approach ignores important contextual factors, such as practitioners’ low level of discretion, making the direct application of research problematic. A focus on the need for dialogue and engagement, together with the idea of co-production, suggests an acceptance of the complexity of linking research evidence with policy and practice change.

However, I was left with three questions that need more attention in order to optimise the impact of research in policy and practice:

  • What is the most appropriate and proportionate impact we can expect from research compared to that from other influences (politics, values, professional and user knowledge), given the necessary uncertainty and contestability of research evidence in this sphere?
  • How should different kinds of evidence, which often arise from different assumptions about the nature of social world, be combined to make changes in policy and practice?
  • How can policy making be changed in order to make best use of research (in terms of timescales, but also increasing the influence of people using services, carers, practitioners and researchers)?

Dr Martin Stevens is Research Fellow at the Social Care Workforce Research Unit at King’s College London. With Jess Harris he is currently writing the final report for the evaluation of Jobs First (an initiative encouraging the employment of people with learning disabilities) for the Department of Health. He is also Principal Investigator in a study examining the vetting and barring of workers in the sector.