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Shared Occupation When One Spouse Has Dementia Sandra Hobson School of Occupational Therapy The Shared Occupation When One Spouse Has Dementia Sandra Hobson School of Occupational Therapy The University of Western Ontario & Melanie Wipprecht Sudbury Regional Hospital

Conflict of Interest Disclosure Sandra J G Hobson, MAEd, LLD, OT Reg. (Ont. ) Conflict of Interest Disclosure Sandra J G Hobson, MAEd, LLD, OT Reg. (Ont. ) has no real or apparent conflicts of interest to report.

 • Dementia progressively affects ability to accomplish daily activities/occupations • Loss of abilities • Dementia progressively affects ability to accomplish daily activities/occupations • Loss of abilities - loss of personhood (Perry & O’Connor, 2002) • Couplehood - identity as a couple (Hellstrom, Nolan, & Lund, 2005) • Caregivers often assist with daily activities (Phenny, 2006; Voekl, 1998)

Purpose of the Study • To explore how shared activities/occupations support both personhood and Purpose of the Study • To explore how shared activities/occupations support both personhood and couplehood

Data Sources • Elegy for Iris, John Bayley* • A curious kind of widow: Data Sources • Elegy for Iris, John Bayley* • A curious kind of widow: Loving a man with advanced Alzheimer’s, Ann Davidson* • My journey into Alzheimer’s disease: Helpful insights for family and friends, Bob Davis † • Different minds: Living with Alzheimer disease, Lorna Drew *& Leo Ferrari† • I still do: Living and loving with Alzheimer, Judith Fox* • Partial view: An Alzheimer’s journal, Carrie Henderson † • Living in the labyrinth: A personal journey through the maze of Alzheimer’s, Diana Mc. Gowan † • Ice cream in the cupboard: A true story of early onset Alzheimer’s, Pat Moffat* • The long way home: A journey though Alzheimer’s, Marian Ritchie* • A glass full of tears: Dementia day-by-day, Joan Lund Shipplett* • Through the wilderness of Alzheimer’s: A guide in two voices, Robert † & Anne* Simpson

Data Analysis • Selected passages describing shared activities • Constant comparative method Data Analysis • Selected passages describing shared activities • Constant comparative method

Results • All books had accounts of shared activity • There were many accounts Results • All books had accounts of shared activity • There were many accounts of shared self care and leisure • There were fewer accounts of shared paid/ household work

Results – Self Care v I required Jack’s escort to the grocery store due Results – Self Care v I required Jack’s escort to the grocery store due to my damaged inner compass. He would telephone during the day to remind me to do the laundry or other duties. (Mc. Gowin, 1994, p. 73) v I hope I never have to see another day like today. I have to follow him around all day to keep checking on him. He leaves lights on in rooms, opens drawers and doesn’t close them, uses things and doesn’t put them back, and he doesn’t know how to put his clothes on a hanger. (Shipplett, 1996, p. 73 -74)

Results – Paid Work and Household Tasks v He cannot see how things fit Results – Paid Work and Household Tasks v He cannot see how things fit together. If he is working on some little project around the house, he calls me to show him the order or the direction for fitting things together. When I lay them for him he can complete the project. (Davis, 1989, p. 78) v In the two years between Cary’s diagnosis and his retirement, he continued to teach part-time, thanks to the understanding and compassion of his department head. But by the end of the first semester of the second year, … I had to grade his exams when he brought them home and looked at me helplessly… (Henderson, 1998, p. xix)

Results – Leisure v Edwin enjoyed listening to me read to him every day. Results – Leisure v Edwin enjoyed listening to me read to him every day. . . I’m sure he didn’t follow most of the stories I read, but he seemed to enjoy the gentle tone of my voice, reaction to the cadence or rhythmic flow of sound. (Ritchie, 2005, p. 177) v Once in the water, Iris cheered up a bit. It was almost too warm, hardly refreshing. But its old brown slow flowing deliciousness remained, and we smiled happily at each other as we paddled quietly to and fro. (Bayley, 1999, p. 37)

Results – Conversation v But we can’t have conversations based on shared experiences. There’s Results – Conversation v But we can’t have conversations based on shared experiences. There’s no longer a pool of shared memories with which to reminisce, events of the day to mull over, opinion, observations to share. (Drew & Ferrari, 2005, p. 84) v At times he’d have periods of lucidity, when we could converse logically. . . (Ritchie, 2005, p. 26)

Results – Caregiving as a Spousal Role v Despite the difficulties, part of me Results – Caregiving as a Spousal Role v Despite the difficulties, part of me enjoys the intimacy of caring for Julian. It’s like taking care of a toddler, expressing love and connecting through hands-on, daily concrete tasks. (Davidson, 2006, p. 58) v I still have a mission…I have to keep Carmen comfortable and live as normally as possible for as long as we can. (Moffatt, 2007, p. 122) v When we choose to help ease the life and death of an Alzheimer’s sufferer, we are taking on a difficult, demanding, and heartbreaking role. And, yes, it’s also a privilege. (Fox, 2009, p. 80)

Results – Caregiving as a Spousal Role v Did I do all those things Results – Caregiving as a Spousal Role v Did I do all those things for myself as much as for my husband? Perhaps so! I really couldn’t tell you what motivated me exactly, as it was a combination of things, including love and pity and a strong sense of duty. However, I just knew that I had to do all I could to give my husband some quality of life, some reason to keep on living, because I wasn’t ready to lose him yet either. He was also my reason for living, and as long as he needed me, I needed to be there for him. (Ritchie, 2005, p. 303 -304)

Discussion • Categories of assisted activites: – Hygene/dressing – Meal prep/ medication – Supervision Discussion • Categories of assisted activites: – Hygene/dressing – Meal prep/ medication – Supervision for all activities – Conversation (Hasselkus & Murray, 2007: Jansson, Nordberg, and Grafstrom , 2006; & Phenny, 2006)

Discussion Type of occupations shared mattered: • Leisure – enjoyable • Self care - Discussion Type of occupations shared mattered: • Leisure – enjoyable • Self care - burdensome (Voelkl, 1998).

Discussion Shared activities supported: • Personhood - directly • Couplehood - directly via leisure Discussion Shared activities supported: • Personhood - directly • Couplehood - directly via leisure & indirectly via personhood

Advantages Disadvantages Deep, rich, reflective accounts Very articulate accounts Longitudinal perspective Public domain; no Advantages Disadvantages Deep, rich, reflective accounts Very articulate accounts Longitudinal perspective Public domain; no ethics barriers Fairly readily available Inexpensive Cannot ask questions, limited to what is included Cannot member check/ verify data analysis Biased sample publish Editing by author/ publisher

Implications • Most caregiving - spouse • Sharing activities – part of caregiving • Implications • Most caregiving - spouse • Sharing activities – part of caregiving • Shared occupations - support personhood • Shared leisure activities - support couplehood • Caregiving, as well as impact of shared occupations on personhood and couplehood, merit further investigation

References Hellstrom, I. , Nolan, M. , & Lundh, U. (2005). We do things References Hellstrom, I. , Nolan, M. , & Lundh, U. (2005). We do things together: A case study of couplehood in dementia. Dementia, 4, 7 -22. Jansson, W. Nordberg, G. Grafstrom, M. (2001). Patterns of elderly spousal caregiving in dementia care: An observational study. Journal of advanced nursing, 34, 804 -812. Perry, J. , & O’ Connor, D. (2002). Preserving personhood: Remembering the spouse with dementia. Family Relations, 51, 55 -62. Phenny, A. (2006). Family strategies for supporting involvement in meaningful activity by persons with dementia. Journal of Family and Nursing, 12 , 80 -101. 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%20 Alzheimer%20 Report. pdf.