G5 Doctoral dissertation (article)
Muistisairaiden omaishoitajat palvelujärjestelmässä (2023)
Family carers for people with memory disorders in the service system

Halonen, U. (2023). Muistisairaiden omaishoitajat palvelujärjestelmässä [Doctoral dissertation]. Jyväskylän yliopisto. JYU dissertations, 635. http://urn.fi/URN:ISBN:978-951-39-9549-2

JYU authors or editors

Publication details

All authors or editorsHalonen, Ulla


Journal or seriesJYU dissertations


Publication year2023

Number in series635

Number of pages in the book1 verkkoaineisto (109 sivua, 63 sivua useina numerointijaksoina, 4 numeroimatonta sivua)

PublisherJyväskylän yliopisto

Place of PublicationJyväskylä

Publication countryFinland

Publication languageFinnish

Persistent website addresshttp://urn.fi/URN:ISBN:978-951-39-9549-2

Publication open accessOpenly available

Publication channel open accessOpen Access channel


This study examines family carers’ needs for support and services, as well as their role in the service system. The focus is on family carers for people with memory disorders living at home. The study investigates what kind of support is needed as well as the reasons why support and services are not received or applied for. In ad-dition, the importance of service coordination for the family carer is examined. The study’s survey and interview data were collected from spouses and adult children of persons with memory disorders living in different parts of Finland. The sub-studies analysed the link between service coordination and access to services, adult children as carers, factors that slow down or contribute to meeting the needs of close relatives and the use of services, and problems in applying for family care sup-port. This summary also presents new results on the experiences of close relatives in service coordination. The strategies for elderly care policy emphasise the importance of family mem-bers as partners in the service system. According to this study, however, their prima-ry role in the system is as resources. Spouses and adult children are responsible for various tasks related to the flow of everyday life of their close relative affected by a memory disorder. Some of them even have significant therapeutic responsibility. The family members have individual needs, but they are linked by the need for both in-formational and emotional support. However, the service system often focuses only on the person with the illness and their own assessment of their capacity to function. Therefore, it does not necessarily recognise or take into account the role of the family members at all, nor does it systematically assess their needs for support and services. On the other hand, the family carers’ attitudes to the use of services can also be complex. Especially the reluctance of the person affected by the illness makes re-ceiving services more difficult. In addition, services that are found to be of poor qua-lity or insufficient or those that are entirely missing will prevent them from being used. On the one hand, family carers fill in for the missing services and, on the other hand, they are left without support themselves. The results suggest that service coordination could serve as a support structure between the family carer and the service system, which would include taking into account the care provider’s perspective and assessing their service needs. In order to address the growing need for care due to the ageing of the population, it is important that family carers of people with memory disorders are genuinely taken into account as partners in the service system – and also as people in need of support.

Keywordsinformal carerscaring for close relativespeople with memory disordersadult childrenspousesservice systemsservice counsellingcare servicesservices for older people

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Ministry reportingYes

Reporting Year2023

Last updated on 2024-03-07 at 01:46