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c h a p t e r t h r e e Personhood On several hot August days in 1998, a group of people who described themselves as “change artists” met in a continuum-of-care retirement community in Oshkosh , Wisconsin, to continue a discussion that had begun the year before in Rochester, New York. Some of these folks remembered the 1960s and the VW buses they used to drive from concert to concert. Now middle-aged and in respectable positions as nursing home administrators, social workers, psychologists , and doctors, they imagined getting on a bus and driving around the country , going from town to town to proclaim a new way of thinking about community and personhood and about aging and dementia. Nursing home residents, they said, should be given choice and control over as many aspects of their lives as possible. Every person, including those who have the most advanced dementia, has potential for growth. Intentional community formation is essential to combat the isolation, boredom, and helplessness that are too prevalent in long-term care facilities. This gathering of “nursing home pioneers” at times felt subversive , for its goal was nothing less than changing the culture of aging and nursing home care in America.1 Over and over, people talked about the huge impact of a small book that was still rather hard to come by in the United States. Written by British psychologist Tom Kitwood (1997), Dementia Reconsidered: The Person Comes First gave this group of pioneers a conceptual structure that undergirded their plans for radical reform of senior services and nursing home care. Tom Kitwood taught that dementia care must be grounded in a relational view of personhood, which he defined as “a standing or status that is bestowed upon one human being, by others, in the context of relationship and social being . It implies recognition, respect and trust” (1997, 8). In his book, Kitwood offered many examples of the “old culture” of dementia care, in which persons were treated like warm objects (or worse yet, as “vegetables”) occupying space, needing occasional feeding and cleaning and care for medical problems like infections or broken bones. The “old culture” dehumanized not only persons who had dementia but also those who cared for them because of the contagious nature of stigma.2 It goes like this: If I am caring for a person viewed as having no value, then how can my work, and my personal investment in it, have mean- Personhood 45 ing and value? If my hard work has no meaning and value, do I, as the worker, have any meaning and value to my community and the larger society? Kitwood’s work helped to transform perceptions of persons who have dementia and the care they receive. It also inspired a new way of thinking about how organizations should value the persons employed to provide care. In other words, changing the culture of dementia care requires a change not only in how the person who has dementia is viewed but also in the treatment of CNAs (certified nursing assistants) and others who represent the front line of dementia care. Their personhood also must be affirmed with “recognition, respect, and trust.” In the late 1990s, Kitwood’s teachings about personhood and a new culture of care took root in a few nursing homes and other residences for older adults who are living with dementia. The transition to the new culture is fraught with many challenges from residents, families, and staff, for the idea of “personcentered care,” which accompanies these changes, is often hard to implement. Some residents, family members, and nursing home staff prefer the old culture, in which everyone has a strictly defined role and authority for decision-making flows from the top down. The person-centered approach to care offers residents as many opportunities for choice as their interests and cognitive and physical skills allow. The documentary film Almost Home shows how the change to person-centered care at a continuing-care retirement residence in Milwaukee invites people living with various degrees of memory loss to make choices ranging from whether to have toast or cereal for breakfast, to preferences about accompanying family members on an outing.3 Almost Home vividly portrays the conflicts that arise when the ideals of person-centered care meet the realities of everyday life in a complex organization devoted to providing high-quality nursing care, assisted living, and independent living. For example, in one...

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