Supporting persons with dementia and their spouses' everyday occupations in the home environment

The overall aim of this thesis was to investigate how persons with dementia and their informal caregivers do every day activities together and to evaluate the result from an intervention designed to encourage mutual engagement.

The sample in all four studies consisted of 30 cohabiting couples, where one part was a healthy spouse caring for a partner diagnosed with mild to moderate stage dementia. Study I had a twofold focus: to identify the supportive acts that caregivers spontaneously use in everyday occupations, as well as to describe the consequences of those acts on the person with dementia. Study II describing the individual participants perception of their own, their spouses and their mutual engagements in everyday occupations. In Study III and IV a home-based collaborative intervention including training on a functional as well as activity level, was evaluated. In Study III the effects of the intervention was evaluated through assessing the individual and mutual episodic memory-functions in the persons with dementia and their caregivers. In Study IV the intervention effect on caregivers communication and interaction skills when performing an everyday occupation together with their spouses with dementia was evaluated.

The findings in Study I showed that the caregivers to the persons with dementia used a wide range of supports when working together with their partners. Most of these supports were shown to be beneficial to the occupational performance of the person with dementia, although some support that had negative impact on the performance of the latter was identified. The findings in Study II showed that both spouses perceived a loss of social and activity engagements as a consequence of the changes due to one having dementia. The caregivers described dilemmas they faced, but they also had management approaches to handle the altered everyday life. The results in Study III and IV showed that the collaborative intervention had a positive effect on the individual memory-performance of the persons with dementia. Also, Study III showed that the persons with dementia had a learning potential regarding individual episodic memory-functions when included in collaboration.

In conclusion, the findings of these studies showed that the persons with dementia and their spouses engagements in everyday occupations were perceived as altered by both of them. The caregivers and the persons with dementia demonstrated different resources in finding strategies to solve the consequences of dementia in their everyday life. The identification of how persons with dementia and their spouses can learn strategies to collaborate might be useful in designing future interventions.

List of scientific papers

I. Vikström S, Borell L, Stigsdotter Neely A, Josephsson S (2005). "Caregivers self-initiated support towards their partners with dementia when performing an everyday occupation together at home." OTJR: Occupation, Participation & Health 25(34): 1-11.
https://doi.org/10.1177/153944920502500404

II. Vikström S, Josephsson S, Stigsdotter Neely A, Nygård L (2008). "Engagement in occupations: Experiences of persons with dementia and their caregiving spouses." Dementia. [Accepted]

III. Stigsdotter Neely, A, Vikström, S, Josephsson S (2008). "Collaborative memory intervention in dementia: Caregiver participation matters." [Submitted]

IV. Vikström, S, Kjellberg, A, Josephsson J, Stigsdotter Neely A (2008). "Caregivers communication and interaction skills after a home-based intervention addressing everyday occupations in dementia." [Submitted]