Older people dying with dementia: a nationwide study

<jats:title>ABSTRACT</jats:title><jats:p><jats:bold>Background:</jats:bold> 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.</jats:p><jats:p><jats:bold>Methods:</jats:bold> 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.</jats:p><jats:p><jats:bold>Results:</jats:bold> 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%).</jats:p><jats:p><jats:bold>Conclusions:</jats:bold> 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.</jats:p>