Background: Large-scale nationwide data describing the end-of-life characteristics of older people with dementia are lacking. This paper describes the dying process and end-of-life care provided to elderly people with mild or severe dementia in Belgium. It compares with elderly people dying without dementia.
Methods: A nationwide retrospective mortality study was conducted, via representative network of general practitioners (GPs) in 2008 in Belgium, with weekly registration of all deaths (aged ≥ 65) using a standardized form. GPs reported on diagnosis and severity of dementia, aspects of end-of-life care and communication, and on the last week of life in terms of symptoms that caused distress as judged by the GP, and the patients’ physical and cognitive abilities.
Results: Thirty-one percent of our sample (1,108 deaths) had dementia (43% mildly, 57% severely). Of those, 26% died suddenly, 59% in care home, and 74% received palliative treatment, versus 37%, 19%, and 55% in people without dementia. GP–patient conversations were less frequent among those with (45%) than those without (73%) dementia, and 11% of both groups had a proxy decision-maker. During the last week of life, physical and psychological distress was common in both groups. Of older people with dementia, 83% were incapable of decision-making and 83% were bedridden; both significantly higher percentages than found in the group without dementia (24% and 52%).
Conclusions: Several areas of end-of-life care provision could be improved. Early communication and exploration of wishes and appointment of proxy decision-makers are important components of an early palliative care approach which appears to be initiated too infrequently.