Abstract
Background: End-of-life care for older people with dementia is often sub-optimal. Understanding the experiences of the relatives involved in the care of the person with dementia may help to improve care practice. Aims: To investigate relatives' experiences with end-of-life care for people with dementia, comparing the nursing home and home setting. Methods: In-depth interviews were conducted with 32 individuals who were bereaved of someone with dementia. Thematic analysis was performed to identify main themes from the data. Findings: Experiences translated into four themes: acknowledging human dignity; being recognised as an important caregiver; (not) talking about death and dying and making decisions together. A lack of person-centered care was mainly evident in nursing homes. Relatives took on a more prominent role in the care of the older person with dementia when the relative was cared for in a home setting and this involvement in the care of the older person was something that the relatives valued. Surrogate decision-making induced similar challenges in both settings. Conclusion: It is important that healthcare professionals inform and support relatives to help them make decision about end-of-life care and preferences. Nursing homes should learn to offer the same standard of person-centred care as a home care setting, and ensure that relatives are still involved in the care of the person with dementia.
Original language | English |
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Pages (from-to) | 432-442 |
Number of pages | 10 |
Journal | International Journal of Palliative Nursing |
Volume | 25 |
Issue number | 9 |
DOIs | |
Publication status | Published - Sept 2019 |
Keywords
- BARRIERS
- DEATH
- Dementia
- End-of-life care
- Family caregiver
- Home care
- INFORMAL CAREGIVERS
- INSTITUTIONAL CARE
- LIFE
- NEEDS
- NURSING-HOME RESIDENTS
- Nursing home
- OLDER-PEOPLE
- PALLIATIVE CARE
- QUALITATIVE RESEARCH
- DECISIONS