The care profiles during the last years of life – the impact of dementia and age in 1998 and 2013
Mari Aaltonen | University of Tampere
Objective: With increasing longevity, death is postponed to very old age. Due very old age functional impairment and dementia are more prominent during the last years and months of life. This affects the need for care and care arrangements. The aim of this study is to investigate how the care profiles in last two years of life differ by dementia diagnosis and age in those who died in 1998 or in 2013.
Data: The study included all people who died at the age of 70 or older in the years 1998 or 2013 in Finland (N 72 203). Data were drawn from nationwide health and social care registers maintained by National Institute for Health and Welfare, and The Causes of Death Register, maintained by Statistics Finland. Data included each individual’s hospital and long-term care use in last 730 days. Dementia diagnosis was identified from registers with ICD10 codes F00-03, G30.
Methods: Identification of profiles was based on days stayed in care and at home, and end-of-life care transitions. They were constructed with sequential profiling scheme. Profiles were compared between people with and without dementia, and between age groups 70-79, 80-89, and 90 or over.
Results: Between the years 1998 and 2013 the proportion of people with dementia increased from 22% to 34%. Simultaneously, the proportion of those who died at the age of 90 increased from 26% to 36% in those with dementia, and from 14% to 21% in those without dementia. The care profiles differed clearly between those with and without dementia, but the differences remained the same between the study years. Over a half of those with dementia but less than every fifth of those without dementia stayed the majority or the entire last two years in care. Of those with dementia one third, and of those without dementia three out of four, stayed at home until the last months of life. Staying at home without any inpatient care at the end of life was rare especially for those with dementia. Irrespective of dementia diagnosis, being in care at least one of the two years was most frequent among those aged 90 or older. Yet being in care at least for one year became less frequent, and both, people with and without dementia, spent more time at home in 2013 than in 1998; even the oldest age groups stayed more frequently the majority of the last two years at home in 2013 than in 1998.
Policy implications: Due to increasing longevity the frequency of dementia is growing. Age and dementia remained major drivers of the use of long-term care although the increasing number of the oldest and those with dementia were also living outside formal care facilities near the time of death. This is probably a result of the Finnish care policy that prefers staying at home as long as possible over institutional care. The increasing longevity with increasing number of people in poor health is a great challenge for both home care and long-term care.