Dementia is a progressive, incurable condition, and a fast-growing number of older people affected by this condition experience multi-faceted care needs until the end of life. However, these care needs often remain unmet, and thus many of them still live with distressing symptoms and problems and die with discomfort. A palliative care approach has been advocated widely for older people with dementia, as it can comprehensively address their care needs with the hopes to alleviate suffering and distress and to ultimately improve their quality of life and comfort at the end of life. Yet, there remains a paucity of high-quality evidence on palliative care for this population, especially for those living in nursing homes and at home where the majority of them live, receive care and die. To address this critical knowledge gap, we conducted a multi-country descriptive and interventional research. First, we described how many people with dementia die in nursing homes, how these residents die in relation to their palliative care service use and comfort in the last week of life, and if there were changes over time, as well as evaluated whether a generalist palliative care programme for nursing homes affects comfort at the end of life and quality of care and dying of residents with dementia. Second, focused on older people with dementia living at home, we described the current quality of primary palliative care and the current evidence on palliative home care interventions, as well as evaluated the effects of palliative home care support on quality and costs of end of life care in Belgium. Finally, based on the crucial findings that were also published in international high-impact journals, we offer several critical implications for practice, future research and policy for older people with dementia living in nursing homes and at home.
- Palliative care
- dementia living