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“Being Free Like a Bird”?: The Meaning of Being an Informal Caregiver for Persons with Dementia Who Are Receiving Day Care Services
Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences. Centre for Care Research, Mid-Norway, Steinkjer, Norway; Nord-Trøndelag University College, Namsos, Norway.
Nord-Trøndelag University College, Namsos, Norway; Centre for Care Research, Mid-Norway, Steinkjer, Norway.
Norwegian University of Science and Technology, Trondheim, Norway.
Mid Sweden University, Faculty of Human Sciences, Department of Nursing Sciences.ORCID iD: 0000-0002-1614-7379
2015 (English)In: Open Journal of Nursing, ISSN 2162-5336, E-ISSN 2162-5344, Vol. 5, no 2, article id 53858Article in journal (Refereed) Published
Abstract [en]

Respite care in the form of day care is one of the several respite services that aims to provide temporary relief to informal caregivers from their responsibilities of caring for a person with dementia. The purpose of this study was to illuminate the meaning of being an informal caregiver for a person with dementia living at home and receiving day care services. Narrative interviews were conducted, and data were analyzed using the phenomenological hermeneutic method. Two main themes emerged: “Living with limitations in everyday life” and “Having a life besides being a caregiver”. The comprehensive understanding suggested living with a person with dementia, changes and influences the informal caregiver’s life through a set of new roles and a new way of living and thinking. The result is discussed in light of Goffman’s analysis of the structures of social encounters from the perspective of the dramatic performance.

Place, publisher, year, edition, pages
2015. Vol. 5, no 2, article id 53858
Keywords [en]
Dementia, Informal Caregivers, Day Care Services, Phenomenological Hermeneutic, Goffman
National Category
Nursing
Identifiers
URN: urn:nbn:se:miun:diva-33508DOI: 10.4236/ojn.2015.52013OAI: oai:DiVA.org:miun-33508DiVA, id: diva2:1199047
Available from: 2018-04-19 Created: 2018-04-19 Last updated: 2018-04-19Bibliographically approved
In thesis
1. Dagaktivitetstilbud for personer med demens som bor hjemme: ”Dagen i dag den kan bli vår beste dag”
Open this publication in new window or tab >>Dagaktivitetstilbud for personer med demens som bor hjemme: ”Dagen i dag den kan bli vår beste dag”
2018 (Norwegian)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The aim of the thesis was to examine how persons with dementia in who live at home experience day care services and what the services mean to them, their relatives and care staff. For persons with dementia, everyday life often lacks social and sensory stimuli, and research has shown that their relatives experience a burden of care that strains their quality of life. In response, more knowledge is necessary about how municipal services in should be designed to ensure that persons with dementia can stay at home for as long as possible. From 2020, municipalities in Norway, will have a statutory duty to offer day care services to persons with dementia. The thesis is based on four qualitative studies. In study I, fieldwork comprised observations and informal conversations with persons with dementia (participants) who receive care from two day care services and staff. Study II involved semi-structured interviews and study III, narrative interviews with relatives, whereas study IV involved semi-structured interviews with care staff. In study I, results revealed that location and buildings affected the inclusion of participants in activities. Where as homey, familiar environments contributed to greater activity among participants, institutional environments contributed to greater passivity, at least from the perspective of participants and staff. In turn, the meaningfulness of participants’ everyday lives depended on staff adaptiveness in exercising person-centred care. In study II, relatives of persons with dementia reported that the pre- and post-diagnosis periods were challenging for them and that the day care services, especially the daily routines that they established, were thus exceptionally meaningful. The relatives reported not only that could they afford to rest on days when the persons with dementia received day care services but that the participants experienced those days to be meaningful as well. At the same time, they reported struggling with deciding for how long it would be reasonable for the persons with dementia to live at home. In study III, results revealed that living with persons with dementia affected the everyday lives of spouses and cohabitants, who had to assume new roles and adapt to living lives full of commitment, singularity, anxiety and oneliness. Spouses and cohabitants not only sought to optimally manage their domestic arrangements but also conceal from others how they felt or thought about their situations. To those ends, day care services therefore helped them to persevere in caring for and living with their loved ones, as well as afforded them time to pursue their personal interests. Being visited by day care staff prevented them from having to ask for help because staff members were there to offer it instead.…Last, during study IV, staff reported striving to implement person-centred care by ensuring the dignity of participants and their relatives and facilitating meaningful activities according to individual needs. However, staff also reported facing various barriers in realising person-centred care, including staff shortages, different levels of functioning among participants and limitations in the design of spaces and their location. When developing day care services, it is important to consider both the physical design and location of buildings in which care will be offered. Person-centred care can guide the organization of adequate, tailored day care services able to afford persons with dementia meaningful everyday lives.

Place, publisher, year, edition, pages
Sundsvall: Mid Sweden University, 2018. p. 78
Series
Mid Sweden University doctoral thesis, ISSN 1652-893X ; 281
Keywords
dementia, relatives, day care services, person-centred care, meaningful days, Personer med demens, pårørende, dagaktivitetstilbud, personsentrert omsorg, meningsfulle aktiviteter
National Category
Nursing
Identifiers
urn:nbn:se:miun:diva-33510 (URN)978-91-88527-53-0 (ISBN)
Public defence
2018-05-04, Nord universitet ved campus Namsos, Norge, Juvika, 10:00 (Norwegian)
Supervisors
Note

Vid tidpunkten för disputationen var följande delarbete opublicerat: delarbete 4 manuskript

At the time of the doctoral defence the following paper was unpublished: paper 4 manuscript

Available from: 2018-04-19 Created: 2018-04-19 Last updated: 2019-01-29Bibliographically approved

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