Building Compassionate Communities for People Affected by Dementia V1
Research type
Research Study
Full title
Understanding how networks of community members support end-of-life care for people affected by dementia: A realist evaluation
IRAS ID
281423
Contact name
Joseph Sawyer
Contact email
Sponsor organisation
Joint Research Office
Clinicaltrials.gov Identifier
513, Grant reference number; 3901, Grant application reference number; 556999, New Project Number (UCL); 203181, SiP form ID
Duration of Study in the UK
1 years, 7 months, 1 days
Research summary
Background:
The journey through to the end-of-life can be particularly difficult for people affected by dementia. Despite this, people spend a lot of this time without professional help, relying on their own resources such as family, friends and other community members. For some people, this can be isolating and overwhelming, leading to considerable distress. It may also affect the physical health of those around and close to them.
‘Compassionate Communities’ use community resource combined with naturally occurring networks of care in order to support people experiencing death, dying, loss and car- giving. There is a growing body of evidence to support their development in order to improve health and well-being for all those involved in the end stages of life.
Question:
I want to see how this approach could work for people affected by dementia. To do this, I need to understand how naturally occurring communities support people affected by dementia at the end-of-life and the challenges they face in doing this. Where communities are unable to support people with dementia, I want to understand why.
How?
I will investigate how social networks change when someone with dementia is dying. I will observe care-giving relationships in a variety of settings from the home to NHS care institutions. Lastly I will interview people caring for someone with dementia to listen to their experiences. This work will be done in over a 3 year period.
Why?
I will learn how communities currently contribute to end-of-life care for people with dementia and how this can be maximised. This will help to; (i) design interventions that support communities and improve access to end-of-life care; (ii) make end-of-life policy recommendations for people affected by dementia (iii) promote community care-giving, reducing stigma and social isolation (iv) motivate further study in this area.REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
21/YH/0184
Date of REC Opinion
29 Sep 2021
REC opinion
Further Information Favourable Opinion