Loading...
People with dementia and family carers are welcoming of a model of dementia palliative care, but sceptical of its implementation.
Fox, Siobhan Faherty, Mary Drennan, Jonathan Guerin, Suzanne Kernohan, W George Murphy, Aileen Timmons, Suzanne
Fox, Siobhan
Faherty, Mary
Drennan, Jonathan
Guerin, Suzanne
Kernohan, W George
Murphy, Aileen
Timmons, Suzanne
Advisors
Editors
Other Contributors
Departments
Date
2024-08-09
Date Submitted
Keywords
advance care planning
community care
dementia
end-of-life
home care
model
palliative care
community care
dementia
end-of-life
home care
model
palliative care
Other Subjects
Subject Mesh
Planned Date
Start Date
Collaborators
Principal Investigators
Files
Alternative Titles
Publisher
Abstract
INTRODUCTION: A palliative care approach can improve quality-of-life for people with dementia. It is the preference of many people with dementia to remain living at home until death, with the appropriate care. To develop a successful model for dementia palliative care in the community, it is essential to assimilate the perspectives and experiences of those affected. The guiding research question for this study was: What are people with dementia and family carers' views on a model for dementia palliative care?.
METHODS: Focus groups ( = 3) were conducted with bereaved or current family carers ( = 11), and people with dementia ( = 2). Discussions centred around a proposed model of dementia palliative care. These were transcribed and analysed using thematic analysis.
RESULTS: Three main themes were identified: living and dying well with dementia; reducing carer burden to fulfil the wish for home care; and lack of faith in the healthcare system. One statement which summarised the analysis was: "Dementia palliative care is a dream, but not a reality." This reflected participants' repeated "wish" for this "ideal" model of care, but simultaneous scepticism regarding its implementation, based on their prior experiences of healthcare services.
CONCLUSION: All participants were welcoming of the proposed model for dementia palliative care and were generally positive about palliative care as a concept relating to dementia. There was consensus that the model would allow people to live and die well with dementia, and reducing the carer burden would fulfil the wish to remain at home. However systemic changes in the healthcare system will be needed to facilitate a truly person-centred, holistic, individualised and flexible model of care.
Language
en
Citation
ISSN
1741-2684
eISSN
ISBN
DOI
10.1177/14713012241270777
PMID
39121236