Health Economic Analysis on a Psychosocial Intervention for Family Caregivers of Persons with Dementia.

Background/Aims: Psychosocial intervention has shown positive effects on the caregivers' burden and satisfaction. The aims of this study were to describe the cost and cost-effectiveness of such an intervention. Methods: We analyzed resource use and costs of formal care for 308 persons with dementia and their caregivers' health-related quality of life (HRQoL). Results: The costs of home help services were lower in the subgroup of spouse caregivers in the intervention group and the cost of nursing home placement was lower in the intervention group. While the person with dementia lived at home, caregivers in the intervention group reported a higher HRQoL (p < 0.01). After the person with dementia had moved to a nursing home, spouses in the control group had a lower HRQoL (p < 0.001). Conclusion: The result can be interpreted as a positive effect of the intervention focusing on the identified specific needs of the family caregivers. © 2013 S. Karger AG, Basel

Family caregivers' assessment of symptoms in persons with dementia using the GBS-scale: differences in rating after psychosocial intervention - an 18-month follow-up study.

The purpose of this study was to examine if psychosocial intervention for family caregivers made any differences in describing symptoms of dementia in the persons they cared for. The study population comprised family caregivers of persons aged 70 years and older receiving social services and diagnosed with dementia disorders. A group of 129 family caregivers underwent psychosocial intervention including education, information, and provision of a support group, while 133 family caregivers did not and these formed the control group. Family caregivers were followed-up every 6 months for a total of 18 months. They rated intellectual, emotional, and activity of daily living (ADL) functions in persons with dementia using 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 irrespective of relationship and education. Most notably, decrease in function of recent memory, ability to increase tempo, long-windedness, distractibility, and blunting were better identified. Our findings suggest that the family caregivers who underwent psychosocial intervention achieved better understanding of different symptoms and the behaviors of dementia. These findings may explain earlier findings of positive effects after psychosocial intervention on family caregivers' sense of burden, satisfaction, and ability to delay nursing home placement

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

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

Coping as a caregiver: A question of strain and its consequences on life satisfaction and health-related quality of life.

A majority of us will at some point in our lives take care of family members, relatives and friends in need of assistance. How will this affect us? Strain related to life satisfaction (LS) and health related quality of life (HRQoL) among caregivers aged 60 years and older has not been previously studied

Family caregivers&rsquo; assessment of symptoms in persons with dementia using the GBS-scale: differences in rating after psychosocial intervention &ndash; an 18-month follow-up study

Beth Dahlrup, Eva Nordell, Signe Andr&eacute;n, S&ouml;lve Elmst&aring;hlDepartment of Health Sciences, Division of Geriatric Medicine, Lund University, SwedenAbstract: The purpose of this study was to examine if psychosocial intervention for family caregivers made any differences in describing symptoms of dementia in the persons they cared for. The study population comprised family caregivers of persons aged 70 years and older receiving social services and diagnosed with dementia disorders. A group of 129 family caregivers underwent psychosocial intervention including education, information, and provision of a support group, while 133 family caregivers did not and these formed the control group. Family caregivers were followed-up every 6 months for a total of 18 months. They rated intellectual, emotional, and activity of daily living (ADL) functions in persons with dementia using the Gottfries-Br&aring;ne-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 irrespective of relationship and education. Most notably, decrease in function of recent memory, ability to increase tempo, long-windedness, distractibility, and blunting were better identified. Our findings suggest that the family caregivers who underwent psychosocial intervention achieved better understanding of different symptoms and the behaviors of dementia. These findings may explain earlier findings of positive effects after psychosocial intervention on family caregivers&rsquo; sense of burden, satisfaction, and ability to delay nursing home placement.Keywords: intervention, dementia, family caregivers, education, GBS-scal

The association between medical diagnosis and caregiver burden : a cross-sectional study of recipients of informal support and caregivers from the general population study ‘Good Aging in Skåne’, Sweden

Background: Different kinds of chronic diseases might imply different dimensions of caregiver burden, not previously described among the caregivers to recipients from the general elder population. Aim: The main objective was to examine differences in burden between the 343 caregivers to persons with different diagnoses. Methods: A group of elderly recipients of informal care (n = 343) from the general population study ‘Good Aging in Skåne’ (GÅS) Sweden, were divided into five diagnostic groups: dementia (n = 90), heart and lung diseases (n = 48), stroke (n = 62), fractures (n = 66), depression (n = 40) and the group “other”, consisting of different diagnoses (n = 37) according to ICD-10. Differences in burden were analyzed using the Caregiver Burden Scale (CBS), a 22-item scale consisting of five dimensions: general strain, isolation, disappointment, emotional involvement and environmental burden. A total burden index comprises the mean of all the 22 items and a higher score indicates a higher burden. Results: The most common diagnosis associated to caregiving was dementia and fracture and the median hours weekly for informal support with instrumental ADL for the five diagnostic groups ranged from 7 to 45 h for spouses and from 4 to 7 h for parents. The highest proportion of caregivers scoring high total burden was seen among recipients with dementia (50%) and depression (38%); the OR for high total burden for the dementia group was 4.26 (2.29–7.92) and depression group 2.38 (1.08–5.24) adjusted for covariates like age, gender and ADL and these two groups had higher self-perception of burden in all the dimensions, especially the dimension’s emotional burden and strain. Conclusion: Informal support constitutes a substantial time for instrumental ADL for the diseased elders. Caregivers to persons with dementia and depression experience high burden

The caregiving phenomenon and caregiver participation in dementia

Background: Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads’ needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost-effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation. Methods: In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed. Discussion: The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia. Conclusion: Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia