1. Caregiving and the changing experience of leisure: A male perspective Rebecca Genoe, MA Candidate Dalhousie University Bryan Smale, PhD University of Waterloo

2. Outline Background and Rationale Purpose Methodology Findings Conclusions and Future Directions

3. Background and Rationale Population aging Increased risk of Alzheimer’s disease Caregivers are often women Men and women have different caregiving experiences Caregiving and Leisure –Caregiving as a leisure constraint –Role of leisure in the caregiver’s life –Changes in leisure after institutionalisation

4. Purpose To examine the nature of and the impacts upon, the leisure lifestyles of men whose wives with Alzheimer’s disease or a related dementia have been institutionalized To examine how male caregivers perceived their leisure time, the role of leisure in their lives, and how their leisure has changed, since moving their wives into a long term care facility

5. Methods Qualitative design using a grounded theory approach Recruitment of participants In-depth interviews, 90 minutes in length Data analysis – constant comparative method (Strauss & Corbin, 1990)

6. Findings Participants Profile – Age range – 53 to 83 years Time providing care – 5 to 16 years Length of time in LTC – 1 to 2 years

7. Major Themes Sense of Responsibility Leisure as a coping mechanism Longing for wife and previous leisure lifestyle Leisure apathy

8. Sense of Responsibility “When you’ve been married for 56 years…well at least I owe her one hour of my time per day.” - Mr. Collins “No I don’t count it work, no I don’t count it leisure… I figure its really partly commitment to her.” - Mr. Edwards

9. Leisure as a coping mechanism “…one thing that keeps me sane.” - Mr. Collins “…another way of getting emotions off.” - Mr. Ford “…I think in meeting with those people and in discussion groups, or something, they give you an insight, help you through your fears.” -Mr. Gibson “I felt it…a healing thing for myself, it helped me understand her…” - Mr. Ford

10. Longing for wife and previous leisure lifestyle “Loneliness…You know I’ve got one chair and the other chair, and I’ve caught myself a good many times, going to speak to her.” - Mr. Edwards “No, I felt no need for any activity that doesn’t involve her.” - Mr. Ford “Everything we did, we did together. I wish we could have that back, but we can’t.” - Mr. Davidson

11. Leisure apathy “…when you go from spending all your time with somebody except the work hours, to that person not being able to function in a relationship anymore it really, really knocks you down. So … the leisure part, basically I don’t care if I have any right now.” - Mr. Davidson “Really, the leisure time isn’t near what it was. Because I don’t like going out and running around and doing whatever. I don’t feel that I should. And I don’t want to. If she was with me, then we could go. If she could go, we’d go.” - Mr. Edwards

12. Conclusions Themes consistent with previous research – sense of responsibility, coping, and longing Leisure apathy – a male experience? –intertwined with the feelings of longing and loss, and especially the loss of the husbands’ principal leisure partner –process leading to leisure apathy? Effects on well-being?

13. Questions??