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Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study
| Content Provider | SAGE Publishing |
|---|---|
| Author | Davies, Nathan Rait, Greta Maio, Laura Iliffe, Steve |
| Copyright Year | 2016 |
| Abstract | People with dementia have been described as the ‘disadvantaged dying’ with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers’ perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.Aim:This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.Design:Qualitative study using in-depth interviews and analysed using thematic analysis.Setting/participants:Purposive sampling from a third sector organisation’s caregiver network was used to recruit 47 caregivers in England (2012–2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.Results:Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.Conclusion:End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care. |
| Related Links | https://journals.sagepub.com/doi/pdf/10.1177/0269216316673552?download=true |
| Starting Page | 726 |
| Ending Page | 733 |
| Page Count | 8 |
| ISSN | 02692163 |
| Issue Number | 8 |
| Volume Number | 31 |
| Journal | Palliative Medicine (PMJ) |
| e-ISSN | 1477030X |
| DOI | 10.1177/0269216316673552 |
| Language | English |
| Publisher | Sage Publications UK |
| Publisher Date | 2016-10-26 |
| Publisher Place | London |
| Access Restriction | Open |
| Rights Holder | © The Author(s) 2016 |
| Subject Keyword | palliative care end-of-life care caregiver quality in health care Dementia |
| Content Type | Text |
| Resource Type | Article |
| Subject | Anesthesiology and Pain Medicine |
