Dementia Community Research Network celebrates in style!

The Dementia Community Research Network (DCRN) turns one this year, and what better way to celebrate than to showcase the incredible work of Network members and start a conversation about better, more inclusive, dementia care? On Thursday 9 May 2024, the DCRN held its first community engagement event to do just that…

The DCRN is a network of public, community, and research partners from across South London. We are connected though our shared goal of better care for all people affected by dementia, by giving equitable opportunities to people of all backgrounds and ethnicities to be involved in dementia research.

With thanks to generous funding from the British Society of Gerontology, and hosting by King’s College Hospital, we welcomed well over 50 guests to our event, including people living with dementia and their relatives, community staff from the voluntary sector, clinical and managerial staff from the NHS and dementia care researchers. Continue reading

Liberty, social care detention and the law of institutions

Stephen Martineau, Research Fellow at the NIHR Policy Research Unit in Health and Social Care Workforce at King’s College London, reviews Deprivation of Liberty in the Shadows of the Institution by Lucy Series (University of Bristol). Page numbers in brackets refer to the book, which was published in March 2022 (and is available for free). (2,642 words)

Introduction

One of the more familiar stories from recent UK history about the lives of people with longstanding serious mental illness or intellectual or cognitive disabilities is their move from large-scale institutional accommodation to living arrangements beyond the walls of such places. The extent of this ostensible deinstitutionalization is illustrated by the decline in hospital beds for ‘mental illness’, ‘geriatric’ patients and people with intellectual/learning disabilities—from over 200,000 in 1955 to under 20,000 in 2020 (Series, 2022: p.53). Much of this shift was to do with the closing of survivals of the Victorian era (which started out being called asylums, subsequently renamed mental hospitals) that took place through the second half of the twentieth century.

As Lucy Series describes in her book, Deprivation of Liberty in the Shadows of the Institution, these newer smaller-scale living arrangements may take the form of ‘quasi-institutions’ (residential care and nursing homes) or ‘quasi-domestic’ arrangements (‘supported living’, ‘independent living’, sheltered housing), or indeed ordinary homes.

Series describes this development as a passage from a ‘carceral’ to a ‘post-carceral’ era (after Unsworth, 1991). But in making the physical move away from institutions, to what degree have some less tangible aspects of the old institutional life been carried over to those new living arrangements, as far as these individuals are concerned? To what extent, Series asks, are they still living in ‘the shadows of the institution’?

This question was brought sharply into focus in the UK Supreme Court case of Cheshire West, the litigation that forms the dramatic fulcrum of this book. The court’s approach meant that its definition of deprivation of liberty applied to a much wider array of living arrangements than had hitherto been the case, extending to private homes, where family members were the carers (or custodians?) of the person concerned. It is the socio-legal ramifications of this move (which Series views as transgressive) that are the main concern of the book. To put it briefly and in human-rights terms, in its approach to concerns about liberty in the area of social care detention—under article 5 of the European Convention on Human Rights—the court seemed to set up a clash with a set of questions belonging more under article 8 (respect for private and family life), to do with the distinction between institutions and homes.

This review is split into five short sections: 1. Social care detention. 2. The acid test. 3. Liberty. 4. Home. 5. Out of the shadows? Continue reading

Is there an ‘optimal’ time for people living with dementia to move to a care home?

Kritika SamsiKritika Samsi, Research Fellow at the NIHR Health & Social Care Workforce Research Unit, introduces the findings from the optimal time study, which she led. (629 words)

Funded by the NIHR School for Social Care Research, this 3-year study investigated what (if any) may be an optimal time for people living with dementia to move to a care home.

A literature review, qualitative interviews and a factorial survey were conducted over the course of 3 years to reveal a complexity of findings around what may be seen as an ‘optimal’ time for a care home move. We found that the ‘right time’ for any move was highly individual, contextual and depended on myriad factors other than symptom severity. These include the wellbeing of the person living with dementia, family members’ ability to support them and the type and availability of care home places. Continue reading

Home care workers supporting people with dementia at end of life

John WoolhamJohn Woolham is Senior Research Fellow at the Social Care Workforce Research Unit. (560 words)

The latest seminar in the current Perspectives series focused on research with older people took place on Monday 9 July. Kritika Samsi from SCWRU and Tushna Vandrevala from Kingston University presented findings from their research into how home care workers support people with dementia towards the end of their life. Their study investigated the experiences of home care workers working with people with dementia who were living in their own homes, the challenges they face, how these are managed and their views of the contribution of their work. Their presentation was based on semi-structured interviews with 30 care workers and 13 managers from 10 home care agencies in London and the south east of England. It was funded by Dunhill Medical Trust. Continue reading

Campaigning for more Dementia Care at Home – a carer’s call

U Hla Htay is a former carer of his wife with dementia. Email: uhlahtay9@gmail.com (964 words)

I am involved in many research studies as someone with experience as a family carer. In this role I have come to understand that practitioners in health and social care can limit some of the negative effects of family caregiving on carers’ health. Some of them can use interventions such as therapy to increase family carers’ physical health and spiritual well-being. Improving carer well-being and increasing our ability to care for our family members is likely to increase quality of life for both carers and our family member (World Health Organization, 2012).

Mittelman and colleagues (2007) found managing the care of a relative with dementia is very lonely, time consuming and difficult, nevertheless, most of the family members they interviewed said they would prefer to keep their spouses at home with them for as long as possible. In my view the quality of life of both someone with dementia and family carers is generally better at home. These aspirations are achievable but come with a cost in human terms and financial terms. Most people with dementia want to remain living independently in their own homes as long as possible and to have a good quality of life and end of life. I am pleased to be supporting the new NIDUS (New Intervention for independence in Dementia) Study (being conducted by Claudia Cooper and colleagues) which is being funded by the Alzheimer’s Society.¹ The Social Care Workforce Research Unit is a partner in this study with other universities. Continue reading

At the 12th UK Dementia Congress

Jo Moriarty Nov 2014bJo Moriarty is Senior Research Fellow and Deputy Director at the Social Care Workforce Research Unit. (736 words)

The 12th UK Dementia Congress ran from the 7-9 November at Doncaster Racecourse. I was one of over 700 delegates who included people living with dementia, family carers, health and social care professionals, and researchers. Organised by the Journal of Dementia Care, in partnership with the University of Bradford and with support from the Alzheimer’s Society, there were over 150 different presentations and workshops. I spoke about the Unit’s completed study about handovers in care homes funded by the Abbeyfield Foundation and explained that we have just started a new phase which will focus on the views of residents and relatives. Continue reading

Exciting opportunity to be a global leader in dementia and brain health

NicoleBatschNicole Batsch is an Atlantic Fellow with the Global Brain Health Institute and completed her PhD at King’s College London, co-supervised in the Institute of Gerontology and the Social Care Workforce Research Unit. She can be reached at nicole.batsch@gbhi.org. (704 words)

While I was writing my PhD I craved the opportunity to discuss and debate the state of the dementia field, where it’s been and where it’s going and the often competing priorities of stakeholders including people living with dementia, families, health care professionals, researchers, policy makers and the charity sector. What I learned was that a PhD was often a long, lonely slog with only the warm glow from my computer screen to keep me company.

But for the past nine months, I’ve finally had that opportunity to discuss and debate and I’ve gotten to experience it in a multi-disciplinary setting to better understand the perspectives of other disciplines different to my own. Continue reading

Managing dementia where there is challenging behaviour

Esme Moniz-Cook and Jill Manthorpe summarise the findings from a study on the management of dementia. (609 words)

  • Help for family carers supporting people with dementia who are distressed is much needed but services struggle to provide effective responses
  • Both families and care home staff need more support to help them to care for people with dementia – especially when the ‘going gets tough’

Bookshelf_NBK447072-page-001The findings from a large research study on the Management of Dementia with clinically significant challenging behaviour at home and in care homes led by the University of Hull and Humber NHS FT are published today (11 August 2017). The research was funded by the National Institute for Health Research (NIHR), Programme Grants for Applied Research (PGfAR). The study examined the records of over 5,300 older people and their families who were referred for specialist help to NHS mental health services across England. Nearly two thirds (61%) of those with dementia and distressing behaviour had a mild dementia rather than severe dementia. Practitioners did not always recognise that people at this stage were experiencing problems such as agitation, aggression and distress; and over a six month period, they did not manage to reduce the difficulties faced by these families. Families bore most of the care costs, and many were untouched by the evidence, guidelines and scope that services should provide them with timely individually-tailored effective responses to their challenging circumstances. Continue reading

Which people with dementia receive less medical attention; what can social care do to promote equality?

Open Access from Age and AgeingClaudia Cooper and Jill Manthorpe introduce their new article, which is open access in Age and Ageing. (726 words)

Women with dementia make fewer visits to the GP, receive less health monitoring and take more potentially harmful medication than men with dementia, our new research has found.

The study, published in Age and Ageing in early December, was funded by Dunhill Medical Trust. We found that only half of all people with dementia had a documented annual review even though GPs are offered financial incentives to carry these out. Women were at particular risk of staying on antipsychotic or sedative medication for longer. This might be because they have fewer GP appointments where their treatment can be reviewed. Continue reading

Values, Equalities, Rights and Dementia

Laura Cole is Senior Research Associate at the Social Care Workforce Research Unit, King’s College London. (929 words)

It is often overlooked that two thirds of people with dementia are women, and caring is often viewed as a woman’s role; both in the family and the workplace. These seemingly obvious points were highlighted at the second* event of the VERDe Network, ‘Venus, Mars and Dementia – Gender perspectives on dementia’ held on 2 June 2016 in central London. Everyone who  attended was keen to explore the equalities dimensions arising from gender differences that affect the services, policies and practitioners that aim to support people with dementia and their carers. Continue reading