Background: Most persons with DRD live at home, and relatives can be deeply affected. Public health care services targeting relatives and persons with DRD are already established. It is crucial that such services are taken into use. This is described as particularly relevant in areas with a Sami population.
Objective: The objective was to provide knowledge about local and individual differences in use and non-use of services as well as explore practice conditions to reveal and explain similarities and differences among communities, and ethnic and social groups.
Design: The study was conducted in municipalities (within and outside the Sami language administrative district) in Northern Norway. The design was sequential, and we started with developing a survey to family caregivers for home-dwelling older adults (65+), with dementia. We conducted focus group interviews with health care professionals and older adults involved in volunteer work. We recruited family caregivers for individual interviews among the survey respondents. In total, 430 family caregivers in 32 municipalities participated in the survey (response rate 54.6), 39 family caregivers participated in individual interviews, 23 health care professionals participated in five focus groups, and five senior volunteers participated in one focus group.
Results: So far, four articles have been published from the survey study. The results show that the majority of the family caregivers reported use of homebased services such as home care, whereas respite services were less used. Use of services varied among groups of persons with dementia and family caregivers. Some variations were unwarranted, e.g., persons with dementia residing in rural areas used fewer services than persons residing in urban areas. Sami family caregivers used fewer homebased services than their non-Sami counterparts, and family caregivers with lower levels of education used fewer services than those with higher levels of education. Family caregivers? awareness of unused services varied, and reasons for non-use were related to the persons with dementia (e.g., reluctance to use services) and/or the family caregivers (e.g., no need for services) and/or the services (e.g., the services did not fit the families? needs). Family caregivers with lower levels of education and those who experienced higher caregiver burden reported lower levels of information compared to family caregivers with higher levels of education and those who experienced lower caregiver burden. We have also validated the COPE Index, an instrument that may be used of health care professionals to identify family caregivers who need more help and support from the health care services. The results demonstrate that COPE is a valid and reliable instrument, however the instrument should be tested in clinical practice. So far, four articles have been published based on the focus groups and the individual interviews. One article demonstrates challenges related to the provision of high-quality home-based services in rural areas. Older adults with extensive needs for help and support must move to assisted living facilities where both family caregivers and health care professionals experience challenges with respect to safety, sharing of responsibilities, and continuity of care when the residents? needs for care change. Another article demonstrates challenges related to the involvement of volunteers in care services and the necessity of dialogue and authentic partnerships between volunteers and public care services. A third article demonstrates how family caregivers are or are not involved in decision making processes regarding admission of persons with dementia to nursing homes by taking expedient positions. A fourth article demonstrates health care professionals? assumptions that the Sami are reluctant to seek and accept help from the public services. The health care professionals attributed the reluctance to traditions for self-help, socio-historical processes, and competence in and about Sami language and culture. A fifth article (under revision after peer review) demonstrates that although family caregivers are satisfied with caregiver courses [Pårørendeskolen], several topics should be further developed and there is room for improvements with respect to the course organizing.
In total, 14 reports including specific results from the survey at the municipal level were completed and distributed to healthcare managers in the participating municipalities in 2017. The PhD student in the project defended her PhD thesis in November 2019. In October 2019, we hosted a conference (funded by The Norwegian Research Council ) with 121 participants, mainly from the municipal health care services in Northern Norway. As a consequence of the conference, the project received attention in the media (forskning.no and NRK Troms).
Most persons with DRD live at home, in accordance with current health policy. Relatives can be deeply affected by the disease in their next of kin, and it is known that early support to relatives can contribute to prevent health problems and burnout and make it possible to sustain their role as informal caregivers. A number of public health care services targeting relatives and persons with DRD are already established. Access to health care services has a tendency to vary inversely with the needs in the population served. It is a public policy goal to reduce inequalities in access to and use of services. A sound understanding of how services interact with the needs of informal caregivers is required in order to tailor the needs in families where a person is affected by DRD and secure that relevant services are taken into use. This is described as especially true in areas with a Sami population. This study will provide knowledge about local and individual differences in use and non-use of services as well as explore practice conditions to reveal and explain similarities and differences between communities, ethnic and social groups. A use of both qualitative and quantitative methods is appropriate as it gives the opportunity to investigate convergent, diverse and contradictory findings: Quantitative data from selected communities will be collected in order to describe, analyze and compare the level and use of public health care services as well as the situation in the families where a person has DRD. The project will provide qualitative data to examine the statements in Public documents about what affects the interaction between Public service providers and Sami families and whether Sami kinship traditions influence the use of Public services. The results will inform user and politicians, strengthen the knowledge base in Health care services and contribute to confidene building at a micro level, which is a prerequisite for equity and justice at the macro level.