Family caregiving, a long and winding road. Aspects on burden and life satisfaction among caregivers from the general population study 'Good Aging in Skåne' and effects of psychosocial intervention

Sammanfattning: With an aging population and a reduction in social services provided by the municipality, a huge majority of us will take care of elderly family members, relatives and friends in need of assistance. How will this affect our lives? Approximately 20% of the adult population in Sweden, mainly middle-aged persons, identify themselves as family caregivers. Many of these caregivers are working and, at the same time, helping and supporting someone within the family or among friends. Among the elderly, taking care of an equally elderly spouse or partner is also common. Although the risk of illness among family caregivers is thoroughly studied and well known, providing help and support seems to have positive aspects, at least as long as the caregivers’ perceived burden is not too high. The overall aim of the thesis was to study family caregivers’ perceived burden and its consequences on health related quality of life (HRQoL) and life satisfaction (LS) and find ways firstly to identify burden and secondly to describe ways to reduce burden. Data were extracted from two study populations: “Good aging in Skåne” (GÅS) and Malmö INtervention Study on Caregivers to persons with Dementia (MIND). In Paper I, a cross-sectional study was conducted with data from GÅS, a general population study on persons 60 years and older. The aims were to describe the characteristics of family caregivers (n=369) and non-caregivers (n=2233) and the differences in HRQoL and LS between family caregivers and non-caregivers, and between family caregivers stratified by level of perceived strain using the same non-caregivers as a control group. The family caregivers among the participants in GÅS was identified by the question “Are you helping a family member with impaired health within or outside your household?” The results shows that family caregivers were younger, had more years of formal education, were more often cohabiting and relied less on powerful others than non-caregivers. More than 30% (n=133) of the family caregivers reported high strain. In a three-group comparison including non-caregivers and family caregivers stratified by strain, high strain was associated with lower HRQoL and LS. Furthermore, the study revealed that family caregivers experiencing low strain reported a better LS and HRQoL compared to non-caregivers. These results stress the importance of identifying burden among family caregivers and offering support in order to prevent the occurrence of high burden with its possible implications on the family caregivers LS and HRQoL. Paper II is also a cross-sectional study but this paper includes data from the family caregivers (n= 343) of persons participating in GÅS, who in connection with the examination reported having informal help. The question asked was: Do you, due to impaired health, get help with household chores or personal care from someone in your family or among your friends or neighbors? After reviewing the medical protocols, five main diagnostic groups emerged among the participants: dementia disorders, heart and lung diseases, stroke, fractures, depression and a group called “other” consisting of a small number of various diagnoses. In this study we wanted to examine the associations between different diagnoses and caregiver burden. The family caregivers’ well-being, the content of and time spent on formal and informal care as well as the perceived burden was examined. A majority rated their health as very good or good but among family caregivers to persons diagnosed with heart and lung diseases and family caregivers to persons in the group “other,” ≥50% rated their health as poor. Pain and discomfort were common among family caregivers in all diagnostic groups except in the groups of stroke and fractures, and anxiety and depression were experienced by between 22- 42% of the family caregivers. A majority of the caregivers gave help with IADL more than once a week, with means ranging between 4.5 days per week in the group providing help to individuals with dementia disorders and 2 days per week within the heart and lung and “other” diagnosis groups. The family caregiver was most commonly a spouse/partner or an adult child and the average hours per week providing help on matters concerning IADL and PADL differed both between the groups and with respect to the relationship between family caregiver and care recipient within the groups. The highest reported time spent on IADL was reported in the diagnostic groups “dementia” and “heart and lung diseases,” in which spouse or partner caregivers provided help approximately 40 hours weekly. The highest reported time spent on PADL was seen among family caregivers in the group “heart and lung diseases,” with 112 hours weekly (md= 28). Caregiver Burden Scale (CBS), a 22-item scale comprising five factors of burden, was used to assess burden. The mean score of the five factors in the CBS comprises a total burden index. The highest percentage of total burden was seen among family caregivers to persons with dementia and family caregivers to persons with depression. Furthermore, family caregivers to persons with dementia and depression stood out in terms of a higher perception of burden in four out of five factors of the CBS. Burden among family caregivers to persons with dementia has been frequently studied but among caregivers to persons with depression the studies are scarce. The risk of high burden among family caregivers to persons with depression needs more attention among professionals in all areas within the healthcare sector. The aim of Paper III was to examine whether a psychosocial intervention for family caregivers to persons with dementia made any differences when describing symptoms in the person they cared for. In paper III we used data from the longitudinal cohort study MIND, and examined family caregivers’ assessment and rating of symptoms of dementia before and after the family caregivers participated in a psychosocial intervention including education, information and provision of support group. Family caregivers, 129 from the intervention group and 133 among controls, were followed every 6 months during 18 months. Intellectual, emotional and activity of daily living (ADL) functions were rated by the Gottfries-Bråne-Steen-scale (GBS-scale). Family caregivers who underwent psychosocial intervention rated the intellectual and emotional symptoms of dementia significantly higher 6 months later compared to controls and the effect was sustained during the 18 month follow-up. Our findings suggest that family caregivers who underwent psychosocial intervention achieved better knowledge regarding different symptoms and behaviours and interpreted these as signs of dementia. The findings may also explain earlier findings in studies of the MIND population of less caregiver burden, higher satisfaction and the ability to delay nursing home placement in the intervention group. In Paper IV, the aims were to describe the cost and cost-effectiveness of the psychosocial intervention developed within the MIND study. We analysed resource use and costs of formal care for persons with dementia (n=308) and their family caregivers (HRQoL) in the intervention group (n=153) and amongst the controls (n=155). The results showed that costs of home help services were lower among spouse caregivers in the intervention group and the cost of nursing home placement was lower in the intervention group. The family caregivers in the intervention group reported higher HRQoL both during the time when the person with dementia lived at home and after moving to nursing home. After the person with dementia had moved to nursing home, spouses in the control group reported a lower HRQoL, which can be interpreted as a positive effect of the intervention.