People living with dementia using eldercare in Sweden

Sammanfattning: Dementia is a major public health concern. Due to the progressive nature of the disease, people living with dementia (PlwD) may experience challenges at different stages of dementia deriving from functional, cognitive, and communicative disabilities and as a consequence experience restriction in performing everyday tasks. As a result, PlwD have an increasing demand for eldercare (including homecare and residential care), especially during the last years of life. This thesis aims at contributing to the understanding of the utilization of eldercare among older adults with and without dementia aged 65+ in Sweden. Although previous studies on eldercare use largely focused on older adults in general, less attention has been paid to PlwD. Little is also known about the group of PlwD who do not have any eldercare at all and the relationship between the likelihood of having or not having eldercare, the number of years with a dementia diagnosis, and the influence of social demographic factors. In order to be able to offer an integrated life in society for PlwD it is important to understand the structure of care provisions. The objective of this thesis is to investigate (1) what type of eldercare services people with and without dementia aged 65+ use during the last years of life; (2) who the people diagnosed with dementia are that do not use any eldercare at all; and (3) which socio-demographic factors influence the use of eldercare among PlwD. Using multiple health registers, the thesis captured cross-sectional as well as longitudinal data in order to examine the utilization of eldercare among people with and without dementia. The main findings showed that (1) the use of residential care was more common among PlwD compared with those without dementia diagnosis during the last years of life; (2) PlwD with no eldercare were comprised of people in their early stage of dementia, living with partners/married/cohabiting, were more likely men as well as foreign-born; and (3) cohabitation status of PlwD was one of the crucial factors for utilizing eldercare during the last years of life. The thesis identified that a considerable proportion of older adults aged 65+ do not use dementia care even if they have a dementia diagnosis—something that is especially true for people with an older age, women, and living alone. The main argument drawn from this thesis is that not only the diagnosis of dementia but the years living with the diagnosis was the primary predictor for eldercare utilization among older adults aged 65+ years in Sweden. More explorative research is needed about the care needs of PlwD and policy makers must be aware of the need for individualized homecare services for PlwD in order to provide possibilities for a good life quality for PlwD.