Dying well with dementia. Studying mortality statistics and investigating the quality of end-of-life care according to the experiences of physicians, patients and their families.

Despite the growing number of persons dying with dementia and the need to improve their end-of-life care, important gaps remain in our knowledge of the quality of care delivered to persons dying with advanced dementia and their families. It is unclear which components of care or treatments influence the quality of end-of-life care or lead to positive and preferred outcomes for dementia patients and their families.

Overall goals of this research are:
(1) to build an epidemiological database on how patients with dementia are dying in Belgium (direct causes of death, diseases and co-morbidities; place of death, socio-demographic characteristics)
(2) to describe the (quality of) end-of-life care and treatment decisions
(3) to identify what entails good care (processes of care determining improved outcomes) for patients dying with dementia in care homes
(4) to make cross-national comparisons between Belgium and the Netherlands

A combination of large-scale quantitative retrospective research and prospective observational research in care homes will be conducted to attain these objectives.

Study I consists of a study of death certificate data in Belgium 2006 and will provide a robust statistical background of dying with dementia (N=all deaths in Belgium).

Study II entails secondary analyses of retrospective databases from previous or ongoing retrospective studies of the End-of-Life Research Group, more specifically death certificate studies with retrospective questionnaires to the attesting physicians concerning possibly life-shortening end-of-life decisions (in 2001 N=2950 studied deaths, and in 2007, sample will be 6000 deaths), and a mortality follow-back study via the nationwide Sentinel Surveillance Network of General Practitioners (ongoing between 2005 until 2008) concerning several process- and outcome measures of end-of-life care and medical end-of-life decisions (N=+/-1300 studied deaths each year). For Study I and II, we aim to provide insights in dementia care for all patients dying with dementia in Belgium, irrespective of setting of care. We estimated that 9% of the deaths in each database die following dementia.

Study III is a prospective cohort study of patients with dementia in 14 care homes, their families and the professional caregivers involved. It is aimed at investigating the components of end-of-life care determining improved or worsened outcomes for patients and families. Over a 12-month period, 560 patients with dementia will be enrolled and followed until death or until the end of the data collection (max 2.5 years). The design is based on ongoing research in the Netherlands and the US.
We aim to perform international comparative research for all sub-studies in this proposal.

Findings from the studies will inform practice and healthcare policy. They will provide crucial evidence on how patients with dementia are dying in Belgium, compared to other countries, and on how to decrease suffering of persons with dementia and their families.