Older people dying with dementia: a nationwide study
- 30 May 2012
- journal article
- Published by Cambridge University Press (CUP) in International Psychogeriatrics
- Vol. 24 (10), 1581-1591
- https://doi.org/10.1017/s1041610212000865
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.Keywords
This publication has 27 references indexed in Scilit:
- Patterns of health care use and expenditure during the last 6 months of life in Belgium: Differences between age categories in cancer and non-cancer patientsHealth Policy, 2010
- Place of Death of Older Persons with Dementia. A Study in Five European CountriesJournal of the American Geriatrics Society, 2010
- The Clinical Course of Advanced DementiaNew England Journal of Medicine, 2009
- Euthanasia and other end of life decisions and care provided in final three months of life: nationwide retrospective study in BelgiumBMJ, 2009
- Care for Patients in the Last Months of LifeJAMA Internal Medicine, 2008
- Nationwide monitoring of end-of-life care via the Sentinel Network of General Practitioners in Belgium: the research protocol of the SENTI-MELC studyBMC Palliative Care, 2007
- Dying at home or in an institution: Using death certificates to explore the factors associated with place of deathHealth Policy, 2006
- Satisfaction with End‐of‐Life Care for Nursing Home Residents with Advanced DementiaJournal of the American Geriatrics Society, 2006
- Quality Indicators for End-of-Life Care in Vulnerable EldersAnnals of Internal Medicine, 2001
- Family Reports of Dying Patients' Distress: The Adaptation of a Research Tool to Assess Global Symptom Distress in the Last Week of LifeJournal of Pain and Symptom Management, 2001