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"Stolen years" reads the headline on the front page of the Baltimore Sun (January 4, 2009), "Alzheimer's is edging into midlife." In the article that follows 56 year old Dorothy and her family describe the experience of her early onset Alzheimer's, a form of the disease that is on the rise. As Dorothy's husband watches her sleep, he often fears that "this could be the day that this disease of constant indignities, of constant losses, will take so much that the Dorothy he knows won't be there when she wakes." For him, Alzheimer's "is taking away some of her abilities to be free, I want her to hold on to who she is."
It is to this view, these people and the caregivers who work across the country in nursing homes for persons with Alzheimer's that Sam Fazio directs his latest book, The Enduring Self in People with Alzheimer's: Getting to the Heart of Individualized Care. For Fazio, the experience described in The Sun is unnecessarily painful and fraught with misconceptions about what actually happens to men and women like Dorothy. His book aims to show, by blending current research with his twenty years of experience working in Alzheimer's care, that the self of the person with Alzheimer's has not been stolen; many abilities and capacities remain for such persons, through to the last stages of the disease. For Fazio, what needs to change is not the disease progression so much as the perception of the disease and the way that most nursing homes and caregivers treat the person who has it.
This argument, and the research supporting it, is part of a recent movement in dementia care, away from what is called a medical model, which sees a neurological disease as the cause of a person with Alzheimer's being disabled, to what variously has been named person-centered care, person-directed care, or culture change, models that argue it is the environment and character of the relationships in which such persons live that cause or do not cause disability or loss of self. Stephen Post's foreword places Fazio alongside Tom Kitwood, Rose Marie Fagan, and Steven Sabat as the pioneers of this movement.
Fazio's book is also part of a broader movement. In disability studies we see a similar critique of the medical model combined with a reframing of disabilities as resulting from disabling environments (the Social Model). In academic philosophy, Jim Nelson, Hilde Lindemann, Eva Kittay, Licia Carlson and Bruce Jennings, among others, have been arguing that we need to rethink our notions of selfhood and what constitutes a meaningful life in order to understand how these persist in persons with dementia and severe cognitive disabilities. And, in the 1980s, feminist ethics of care called for the adoption of "maternal thinking" in practices outside of childrearing, in which the attitudes of "holding" and attentive love put the question "What are you going through?" at the center of our practices. Such currents resonate with Fazio's argument.
Fazio's book lucidly explains the central ideas and recommended practices of person-centered care, summarizes the supporting research, and provides exercises at the end of each chapter to help with implementation. Anyone who wants to understand this movement or implement it will benefit from The Enduring Self. The book consists of eight chapters, an appendix presenting Fazio's original research on the enduring self in persons with Alzheimer's, and a list of recommended readings and resources. His writing is clear, every term is defined, and the overall argument is compelling. Central themes and research findings are repeated throughout as they apply to different aspects of dementia care: interpersonal relationships, the physical environment, the social environment, the language and communication occurring in dementia care settings. Such repetition is both the book's strength and its weakness. Too often, especially in chapters five and six, it is the conclusions of various research projects that are re-cited without a deeper exploration of what the research might mean for each new aspect.
Yet, the extensive references to current research are invaluable. While a number of books and websites describing the person-centered approach, only a few cite evidence for their case. Academics, laypersons, and health care professionals need to examine this evidence in evaluating the efficacy of the person-centered care, especially since implementing it involves significant changes in the way care giving institutions are organized and evaluated.
Person-centered care recognizes the nursing home as the home of its residents. They and their desires, therefore, should come first: they should be highly involved in the design and decoration of the facility--rooms should be made easy to find by using memory boards with photographs and other identifying items at the entryways to help the resident who is disoriented feel reoriented; rooms and the facilities should be highly individualized--residents' personal possessions should be found throughout the facility, in living spaces, dining rooms and activity areas as well as in bedrooms and bathrooms, just as they would be in a private home. Concerns about security need to be balanced against the need for a resident to feel at home in order to maintain his or her sense of self.
In addition, placement of new residents should take into consideration their individual personalities--those who like and need quiet time should have private rooms, located in less busy places such as at the end of hallways, those who are highly social and have always lived with others should live in shared rooms and be near the hub of social activities, so that they can continue the practice of having friends and family, which now includes fellow residents and staff, present throughout their day.
Most importantly, staff should be focused on assisting the person in activities which she can no longer complete independently, rather than on meeting the needs and schedule of the staff and the facility. Fazio gives two examples of what this looks like in practice: the resident who always started her day with a cup of coffee in her kitchen is welcomed into the home's kitchen when she first gets up, later joining the rest of the residents in the dining hall, and the resident who likes to be in control is provided with opportunities to instruct staff in how to carry out various tasks, in particular, the right way to hang a poster on the wall. But of these activities, by far the most essential to the enduring self is assisting the resident in telling her story and making it meaningful.
The one thing that Alzheimer's does 'steal' is independent recall of past events. Family, friends and nursing staff can compensate for this by filling in the gaps in memory as needed, in subtle ways that emphasize the meaning of past events rather than the facts, so as to not remind the resident of her failing memory. Fazio recommends using life story books and photos, playing favorite pieces of music, encouraging the practice of lifelong hobbies, and using other, non-language based means to help the resident remember the past that is fading from view. In this way women like Dorothy will be able to hold on to themselves, they just need the help of others in doing so.
For more information on culture change and person-centered care, Fazio lists a number of organizations that have devoted themselves to advocating this model: the Eden Alternative, The Green House Project, the Planetree Model, and the Pioneer Network, all of which have websites as of January 2009.
For more information on Disability Studies see the Society for Disability Studies and its journal, Disability Studies Quarterly. For more information on the debates occurring in philosophy and feminist ethics of care, see Bruce Jennings' essay, "Alzheimer's Disease and the Quality of Life," in Living with Grief: Alzheimer's Disease, available on the Hospice Foundation of America website. For more information on feminist ethics of care see Virginia Held's essay, "Taking Care: Care as Practice and Value," in The Feminist Philosophy Reader¸ edited by Alison Bailey and Chris Cuomo (McGraw Hill, 2008).
© 2009 Maeve M. O'Donovan
Maeve M. O'Donovan, Ph.D., Assistant Professor of Philosophy, College of Notre Dame of Maryland