Home-dwelling persons with dementia. The impact of individual and organizational factors on the use of health resources and quality of life.

Background and aim The prevalence of dementia increases with age, and as the world’s population is growing older, the number of people with dementia is rising rapidly. Dementia is a progressive disease causing the affected to become increasingly care dependent and possibly experience reduced quality of life (QoL). A projected steep increase in the prevalence of persons with dementia poses a major threat to the sustainability of the primary health care sector. To enable this sector to absorb the massive increase in care needs, we have to enhance our knowledge about the factors that drive the need for care. In this thesis, we addressed some of these topics. We aimed to assess the use of primary health care services in home-dwelling persons with dementia and to assess relations between the use of formal and informal care and individual and organizational factors. In addition, we studied changes in the QoL of home-dwelling persons with dementia and its associated factors. Methods Adopting a quantitative approach, we analysed two datasets based on elderly recipients of municipality care services. For Papers I and II, we draw sub-samples from a cohort of 1,001 home-dwelling persons aged 70 years or older that was followed over three years (599 persons in Paper I and 412 persons in Paper II). In Paper I, we described the frequency of the use of general practitioners (GPs), and in Paper II, we assessed the longitudinal patient- and proxy-rated QoL. For Paper III, we drew a sub-sample of 395 persons from a cohort of 696 persons recently admitted to a nursing home. We described the use of formal care and of informal care rendered by primary caregivers and the wider social network, and analysed clinical and sociodemographic factors associated with the use of care during the last month before nursing home admission (NHA). Results We found that people with moderate to severe dementia made fewer visits to their GP than people with mild or no dementia. Older age, symptoms of agitation and psychosis were associated with fewer visits to the GP, while symptoms of apathy, anxiety, and depression were associated with a higher number of visits. Regarding QoL, we found three separate groups with different QoL trajectories for both patient- and proxy-rated QoL among home-dwelling persons with dementia. Changes in QoL over the 18 months study period were small and mostly non-significant, and the agreement between patient- and proxy-ratings was poor. Belonging to the group with the lowest QoL trajectory was associated with more depressive symptoms in proxy- and patient-rated QoL independent of the dementia status. Poor and fair physical health as compared to good and excellent physical health was associated with lower QoL independent of the dementia status in patient ratings. Impaired functioning in personal and instrumental activities of daily living was associated with reduced patient rated QoL among persons with dementia. In the month before NHA, half of the sample received formal care, and the amount of informal care was considerably higher than formal care. Help from the wider social network accounted for less than 5% of the informal care rendered. Co-residency was associated with more informal care compared to non-co-residency. Among co-resident participants, younger age of the participants, and non-working status of the caregivers were associated with more informal care provided by the primary caregivers. A higher provision of formal care was associated with poorer physical health. Conclusion As home-dwelling persons with moderate to severe dementia seem to be less active in seeking help from their GPs, we need to ensure that they are routinely followed up in order to secure handling of medical problems as well as mental and social issues related to dementia. Depression and other neuropsychiatric symptoms, poor physical health, and impairment in personal and instrumental activity of daily living function seem to reduce the QoL of persons with dementia and should be diagnosed and treated as far as possible. However, the QoL of persons with dementia appears to be more complex than what can be explained only by the clinical factors related to dementia. There is possibly an unrealized care potential in the wider social networks of persons with dementia that might help relieve the burden of primary caregivers. Future research should explore this potential. Future programs should also explore new and innovative formal and informal care services tailored to the specific needs of persons with dementia and their caregivers