BUILDING COMMUNITY WITH PURPOSE: DEMENTIA FAMILIES STAYING CONNECTED ACROSS DISEASE TRAJECTORY

摘要

Dementia family care partners typically move through a fragmented system that assures them of one thing: change. Throughout dementia’s long, tumultuous trajectory family care partners encounter a flow of in-home aids, ever-changing adult day staff, and visits with a succession of medical professionals. What they miss is a community of known, trusted individuals to see them through multiple settings and providers during their partners’ unpredictable and often protracted decline. After completing an eight-week support group for individuals living with early-stage dementia and their care partners (Memory Makers), 27 family care partners participated in three cohorts of “What’s Next?” programs. “What’s Next?” is a series of education and support workshops for Memory Makers family care partners coping with changes in moderate-stage dementia. “What’s Next?” participants bonded; and to address their desire to stay together, ongoing monthly closed support groups, known as Kinship One (n=12) and Kinship Two (n=11) were formed. Kinship, a social-support convoy designed to follow families over time, cultivated many unlikely, fierce bonds. Men, women, those still caring, those whose family member died, gather monthly with the same people and same social workers to share resources, exchange supplies, encouragement, honest confessions and unwavering commitments to see each other through. Widows and widowers share their grief and experiential wisdom while reassuring others that there is life after caregiving. After two years, one participant in Kinship whose partner was declining, pleaded with the others, “You better not abandon me.” Kinship becomes the constant in an ever-changing dementia family care context.