EVIDEM-EOL: Quality of Care at the End of Life |
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1. What is EVIDEM –EOL about? |
| This study focuses on the needs for support and end of life care of older people with dementia that are living in care homes. |
2. Why is it important to study EVIDEM –EOL? |
| In the UK there are over 13000 care homes that offer personal care and approximately 405,000 older people receiving care in residential settings. A significant proportion of older people resident in care homes have dementia in addition to other health and social care needs. Health and social care policy place is placing an increasing emphasis on improving the standards and quality of end of life care for older people living in care homes. The national strategy for end of life care in England includes a special section on care homes. More needs to be known however, about how having dementia affects the experience of living and dying in a care home, how peoples’ views and wishes are discussed and implemented, the kind of interventions that ensure the older person’s needs are prioritised and the training practitioners and care workers need to provide quality end of life care to people with dementia. |
3. How will you carry out EVIDEM –EOL? |
This study will study the experiences and different possible pathways to death of older people with dementia who are living in care homes and then in a second phase develop and test dementia specific interventions that support health care professionals, community workers and care home staff when caring for someone with dementia at the end of their life.
We hope to recruit ten care homes and study up to 250 older people. To date, most research in this area has relied on retrospective data and care worker and family members’ accounts of events leading up to the death or progressive deterioration of the older person. By tracking the care older people with dementia receive over a two year period, we hope to document in detail, key events, everyday experiences and the older person’s changing needs and begin to pinpoint when support from the NHS is most needed, what form it should take and how care home staff and NHS professionals working primary care can work more effectively together to improve end of life care for people with dementia. |
4. How can I get involved in EVIDEM –EOL? |
There is a range of ways that you can become involved.
We are very interested to receive comments on this study and personal accounts about living in a care home and how this experience affects how older people with dementia, their family, carers ( paid and family) anticipate and discuss end of life
The study will be establishing an expert advisory group to be a “critical friend” to the study, their role will be to challenge the assumptions of the study, review progress and study materials used and comment on preliminary findings. The group members will include professionals working in the field of dementia care and research who are independent of the EviDem research team and members of the public who through their personal experience of living with dementia or looking after someone with dementia have particular insights and expertise that can inform (and challenge) the study. If you would be interested in becoming involved in this advisory group please contact on (please contact Natasha Baron)
If you would still like to receive further information and newsletters about the study then we would be happy to add you to an e mailing list about this and the related studies on the programme |
5. When will EVIDEM –EOL happen? |
| We are currently at the beginning of the study. We have just completed a literature review of the research evidence for end of life care interventions for older people with dementia. We are also in discussion with care homes about their possible participation in the study. |
6. What difference do you think EVIDEM –EOL Will make? |
| We hope that through our research older people and their families in the future will be able to have their end of life wishes followed. The findings from this study will also help ensure that the staff looking after older people with dementia in care home will have the support and training they need to provide person centred, responsive and appropriate end of life care . |
7. Who is working on this project |
| The team is led by Prof Claire Goodman, and also relies on the contributions of Natasha Baron. |
8. Progress to date |
Phase 1 – Explore what end of life care currently looks like for people with dementia
- Develop protocol complete
- Review literature on path ways of care for people with dementia at the end of their lives complete
- Constitute a Steering Group completed with most recent meeting held in December 09
- Recruit care homes, their residents and staff 133 older people recruited from 6 care homes
- Review residents notes and interview staff/professionals /small sample of residents
- Interviewed (4) district nurses
- Interviewed 5 care home managers
- Held (4) Focus groups with 17 care home staff to date
- Baseline data & Timepoint 2 data collected fo r all older people
- Timepoint 3 began in December 2009 for 1 st 3 homes
- Timepoint 3 begins in March 2010 for final 3 homes
- Recruit and interview NHS professionals who visit care homes (i.e., GPs and district nurses, etc..)
- Conduct further staff focus groups
- Summary report of baseline findings complete
- Publication on methodological challenges of securing consent and ongoing participation of older people with dementia in care homes In preparation
Phase 2 – Develop an educational tool to support staff delivering end of life care to people with dementia
- Expert group to review emergent findngs and plan second phase based on findings
- MREC submission
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9. Reports from this project |
| To view outputs generated from the work of this project click here. |
Health Research: Programme Grant for Applied Research (RP-PG-0606-1005)