Title

The role of co-occupation when couples face dementia

Start Time

21-10-2011 12:25 PM

End Time

21-10-2011 12:55 PM

Session Type

Event

Abstract

Background: Dementia progressively affects people’s ability to engage in occupations successfully and independently. Work and complex instrumental activities of daily living (e.g., driving, banking) are affected early, but as the disorder progresses, even self care occupations are compromised. It is common for spousal caregivers to assist individuals with dementia in completing self care and other occupations (e.g., Phenny, 2006; Voekl, 1998), however there has been little exploration of the wider role co-occupations may play in the caregiver/care recipient relationship of couples when one spouse has dementia.

Objective: To explore the role of co-occupation in couples in which one partner has dementia Methods: Published accounts, written by either a person with dementia and/or his/her spouse, were analyzed for descriptions of shared occupations, including self care tasks, leisure activities, and work or household duties. Although uncommon, there is precedent for using published first person accounts as a data source in qualitative research. Relevant passages were analyzed using an iterative, inductive approach.

Results: Shared leisure was particularly meaningful to both partners. Couples continued to share leisure occupations as long as possible, and caregivers introduced new shared leisure activities to replace those abandoned.

Caregivers also supported spouses in continuing work or household duties for as long as possible. Both spouses found this meaningful, although the need for support signaled disease progression. Sharing self care activities arose from necessity and often represented unwanted work for the caregiver. However, it was very important to caregivers to assist with self care in order to sustain the personhood (personal identity) of the individual with dementia.

Conclusion: Caregivers treasured leisure co-occupations because they were instrumental in sustaining a couplehood connection between spouses as the disease progressed. Sharing other occupations detracted from that sense of partnership and emphasized dependency. In the face of this, spousal caregivers often re-conceptualized supporting the personhood of the individual with dementia as a spousal duty, thus seeming to reinforce the spousal role to themselves. Given the predicted rise in Alzheimer disease and other dementias and the fact that most of those with dementia are cared for by family (World Alzheimer International, 2009), further research is needed into the meaning of cooccupations and their role in coping with dementia in couples in which one spouse is affected.

Objectives for Discussion:

  1. explore whether shared self-care and productive occupations qualify as co-occupations
  2. consider whether co-occupation may support prolonged spousal caregiving
  3. discuss how co-occupations might be experienced differently when the care recipient is not a spouse or has some other diagnosis

References

Phenney, A. (2006). Family strategies for supporting involvement in meaningful activity by persons with dementia. Journal of Family and Nursing, 12, 80-101. http://dx.doi.org/10.1177/1074840705285382

Voekl, J. (1998). The shared activities of older adults with dementia and their caregivers. Therapeutic Recreation Journal, 32, 231- 239.

World Alzheimer International. (2009). World Alzheimer report. Available at: http://www.alz.co.uk/research/files/World%20Alzheimer%20Report.pdf

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Oct 21st, 12:25 PM Oct 21st, 12:55 PM

The role of co-occupation when couples face dementia

Background: Dementia progressively affects people’s ability to engage in occupations successfully and independently. Work and complex instrumental activities of daily living (e.g., driving, banking) are affected early, but as the disorder progresses, even self care occupations are compromised. It is common for spousal caregivers to assist individuals with dementia in completing self care and other occupations (e.g., Phenny, 2006; Voekl, 1998), however there has been little exploration of the wider role co-occupations may play in the caregiver/care recipient relationship of couples when one spouse has dementia.

Objective: To explore the role of co-occupation in couples in which one partner has dementia Methods: Published accounts, written by either a person with dementia and/or his/her spouse, were analyzed for descriptions of shared occupations, including self care tasks, leisure activities, and work or household duties. Although uncommon, there is precedent for using published first person accounts as a data source in qualitative research. Relevant passages were analyzed using an iterative, inductive approach.

Results: Shared leisure was particularly meaningful to both partners. Couples continued to share leisure occupations as long as possible, and caregivers introduced new shared leisure activities to replace those abandoned.

Caregivers also supported spouses in continuing work or household duties for as long as possible. Both spouses found this meaningful, although the need for support signaled disease progression. Sharing self care activities arose from necessity and often represented unwanted work for the caregiver. However, it was very important to caregivers to assist with self care in order to sustain the personhood (personal identity) of the individual with dementia.

Conclusion: Caregivers treasured leisure co-occupations because they were instrumental in sustaining a couplehood connection between spouses as the disease progressed. Sharing other occupations detracted from that sense of partnership and emphasized dependency. In the face of this, spousal caregivers often re-conceptualized supporting the personhood of the individual with dementia as a spousal duty, thus seeming to reinforce the spousal role to themselves. Given the predicted rise in Alzheimer disease and other dementias and the fact that most of those with dementia are cared for by family (World Alzheimer International, 2009), further research is needed into the meaning of cooccupations and their role in coping with dementia in couples in which one spouse is affected.

Objectives for Discussion:

  1. explore whether shared self-care and productive occupations qualify as co-occupations
  2. consider whether co-occupation may support prolonged spousal caregiving
  3. discuss how co-occupations might be experienced differently when the care recipient is not a spouse or has some other diagnosis