Public dementia care in terms of equal services

The public dementia care project

In this multi method project we explore local and individual variation in use and non-use of public municipal health and care services for home-dwelling persons with dementia and their family caregivers in Northern Norway.

The project was funded by The Norwegian Research Council (HELSEVEL, project number 238146) in the period 2015-2019.

Results from the project are still published.

The project purpose is:

to generate knowledge about local and individual variations in use and non-use of municipal health and care services
explore practices to identify and explain similarities and variations between municipalities, ethnic groups and social groups

Sub-study 1

The family caregiver survey: A survey for persons who provide help and support to home-dwelling older adults (>65) with memory impairment or dementia

Several municipal health and care services are aimed at persons with dementia and their family caregivers. Knowledge is sparse about who are using these services and why services are not used. Moreover, little is known about family caregivers’ access to help and support, their satisfaction with services, and with what they need more help.

To learn more about this, we have conducted a survey among family caregivers for persons with dementia in 32 municipalities in Northern Norway. The survey was conducted between April and November 2016. 430 family caregivers participated in the study.

We explore associations between use of health and care services and ethnicity, gender, income, education, and place of residency. Moreover, we investigate the impact on use of services of the geographical distance between the service users’ place of residency and the services. We also explore the extent of the help and support provided by family caregivers, how they cope with the family caregiver role, and how they experience their life situation.

Sub-study 2

Similarities and differences in access to and use of municipal dementia care: A qualitative study of the collaboration between formal and informal caregivers in municipalities included in the Sami language administrative area

This study generates knowledge about local and individual variations in use and non-use of municipal care services in the Sami language administrative area. The study purpose is to generate knowledge about the services that are available for families in which one person has dementia. The study generates knowledge about services not available for or not used by the families.

The study is based on individual qualitative interviews with family caregivers and focus group discussions with health care professionals in the municipal health and care services.

Sub-study 3

Family caregivers’ involvement in collaboration processes in municipal home care services for persons with dementia

This sub-study was funded by Centre for care research north and the Elisabeth trust.

The purpose of the study is to generate knowledge about the services available for families in which one person has dementia. The study generates knowledge about family caregivers’ experiences with information about the services, the service content, and their experiences with being included in the tailoring of services for the individual user.

The study is based on qualitative interviews with family caregivers for persons with dementia.

Sub-study 4

The family caregiver training program study

The purpose of this study is to generate knowledge about family caregivers’ experiences with family caregiver training programs with a specific attention to everyday life and collaboration with the health and care services.

The study is based on qualitative interviews with family caregivers.

Publications from the project

Blix BH, Munkejord M-C. (2022). Indigenous Sami Family Caregivers’ Experiences With Accessing and Collaborating With Municipal Health and Care Services. Global Qualitative Nursing Research 9. https://doi.org/10.1177/23333936221123333

Blix BH, Hamran T. (2021). Brukermedvirkning og representasjon i helse- og omsorgsforskning. Tidsskrift for omsorgsforskning 7(3): 1-15. https://doi.org/10.18261/issn.2387-5984-2021-03-07

Moholt J-M, Friborg O, Henriksen N, Hamran T, Blix BH. (2021). Non-use of community health-care services – an exploratory cross-sectional study among family care-givers for older, home-dwelling persons with dementia. Ageing and Society 41(9):2074-2098. https://doi.org/10.1017/S0144686X2000015X

Moholt J-M, Friborg O, Blix BH, Henriksen N. (2020). Factors affecting the use of home-based services and out-of-home respite care services: A survey of family caregivers for older persons with dementia in Northern Norway. Dementia 19(5):1712-1731. https://doi.org/10.1177/1471301218804981

Larsen LS, Moholt J-M, Hamran T, Henriksen N, Blix BH. (2020). Erfaringer med deltakelse på kommunale pårørendeskoler. Tidsskrift for omsorgsforskning 6(1). https://doi.org/10.18261/issn.2387-5984-2020-01-03

Larsen LS, Blix BH, Hamran T. (2020). Family caregivers’ involvement in decision-making processes regarding admission of persons with dementia to nursing homes. Dementia 19(6):2038-2055. https://doi.org/10.1177/1471301218814641

Henriksen N , Moholt J-M, Blix BH. (2020). Perceptions of Family Caregivers of Home-Dwelling Persons with Dementia regarding Access to Information and Involvement in Decisions. Journal of Aging & Social Policy, 32 (3): 260-275 https://doi.org/10.1080/08959420.2019.1707058

Moholt J-M, Friborg O, Skaalvik MW, Henriksen N. (2018). Psychometric validation of the Carers of Older People in Europe Index among family caregivers of older persons with dementia. SAGE Open Medicine 6. https://doi.org/10.1177/2050312118792812

Blix BH, Hamran T. (2018). ‘When the saints go marching in’: constructions of senior volunteering in Norwegian government white papers, and in Norwegian senior volunteers’ and health-care professionals’ stories. Ageing and Society 38(7):1399-1428. https://doi.org/10.1017/S0144686X17000046

Blix BH, Hamran T. (2017). “They take care of their own”: healthcare professionals’ constructions of Sami persons with dementia and their families’ reluctance to seek and accept help through attributions to multiple contexts. International Journal of Circumpolar Health 76(1). https://doi.org/10.1080/22423982.2017.1328962