International Psychogeriatrics

Research Article

Older people dying with dementia: a nationwide study

Koen Meeussena1 c1, Lieve Van den Blocka1a2, Michael Echtelda3, Nicole Boffina4, Johan Bilsena1a5, Viviane Van Casterena4 and Luc Deliensa1a3

a1 End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Brussels, Belgium

a2 Department of General Practice, Vrije Universiteit Brussel, Brussels, Belgium

a3 VU University Medical Centre, Department of Public and Occupational Health, EMGO Institute for Health and Care Research, Expertise Centre for Palliative Care, Amsterdam, The Netherlands

a4 Scientific Institute of Public Health, Public Health and Surveillance, Brussels, Belgium

a5 Department of Public Health, Vrije Universiteit Brussel, Brussels, Belgium

ABSTRACT

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.

(Received January 31 2012)

(Revised February 19 2012)

(Revised April 16 2012)

(Accepted April 22 2012)

(Online publication May 30 2012)

Correspondence:

c1 Correspondence should be addressed to: Koen Meeussen, MA, PhD, End-of-Life Care Research Group, Ghent University & Vrije Universiteit Brussel, Laarbeeklaan 103, 1090 Brussels, Belgium. Phone: +0032-(0)2-477-47-49; Fax: +0032-(0)2-477-47-11. Email: koen.meeussen@vub.ac.be.