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

Poorer dementia patients in England less likely to be prescribed drugs

Dr Claudia Cooper is Reader in Old Age Psychiatry at University College London. (560 words)

Dementia patients from more affluent areas in England are 27% more likely to be prescribed anti-dementia drugs than patients from poorer areas, finds a new UCL study of 77,045 dementia patients across the UK. This inequality was not seen in Scotland, Northern Ireland or Wales.

The new research, published in Age and Ageing, also found that compared to English practices, anti-dementia drugs were prescribed more often in Northern Ireland and Scotland but less often in Wales. Continue reading

Dementia and ethnicity deepen housing needs

Gearing upThe 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

What’s the evidence behind the Dementia ‘I’ statements?

 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