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BOOK REVIEW |
Professor and Chair, Department of Sociology Director of the Aging Studies Department Coeditor, Dementia: The International Journal of Social Research and Practice John Carroll University Cleveland, Ohio 44118 pharris{at}jcu.edu
Alzheimer's Disease: Inside Looking Out. Video/1995/19 min. A film by Joanne Frances Durante. Produced by the Alzheimer's Association, Cleveland Area Chapter. Distributed by Fanlight Productions, 4196 Washington St., Suite 2, Boston, MA 02131. 800-937-4113. Online: www.fanlight.com. E-mail: info{at}fanlight.com. Rental $60 (one day) or $120 (one week), Purchase VHS $169. Also distributed by Terra Nova Films, 9848 South Winchester Ave., Chicago, IL 60540. 773-881-8491. Online: www.terravnova.org. E-mail: tnf{at}terranova.org. Rental $45 (one day), Purchase $169.
Until recently, most information about the experience of dementia has been second-hand, from the interviews with and observations and surveys of caregivers—those involved in the daily activities of caring for a family member with dementia. It wasn't until the middle of the last decade that the voices of the people with dementia began to be heard and the primary assumption that they could not communicate in meaningful ways was called into question. Tom Kitwood led a movement that caused this major paradigm shift in how health care professionals, researchers, and caregivers approached working with and understanding people with dementia. He applied the concept of personhood to the dementia field (Kitwood, 1997; Kitwood & Benson, 1995; Kitwood & Bredin, 1992), a view that challenged the underlying negative assumptions about the person and their capabilities. He urged us to see the person as a human being, not as the sum total of a diagnostic label.
It is this new approach that is so vividly and eloquently captured in this video of 10 people in the early stages of Alzheimer's disease who share their hopes, losses, and struggles and demonstrate their indomitable will to continue living, despite the disease. The video acknowledges the person as the expert, and through listening to their voices and seeing their faces the viewer gains an enriched understanding of what it is like to live and cope with a dementing illness.
One of the major strengths of the video is its realistic portrayal of the impact of Alzheimer's disease from the perspective of the diagnosed person. The video is not sugar coated; however, one ends the video with a sense of hope. The messages delivered are clear and meaningful. The opening scene shows a wall; written on it in fragile, shaky handwriting are the words, "This is the most miserable in my life." And this graphic, with its missing word day, is followed by a frontal shot of a vivacious 55-year-old woman with early onset Alzheimer's disease stating, "Now I am afraid that I am like a piece of melting ice, and soon I am going to be nothing." Yet, one of the central messages of the video is voiced a little later in the film by the same woman who says, "It's helpful to be honest and open .... No one should have to face this alone. It's scary no matter what end of the compass you are on."
Another strength is that the video depicts the major concerns people with Alzheimer's disease and their family members struggle with on a daily basis, including issues related to driving, dependency, and decision making, and to the loss of social roles and skills like cooking and language. The person's feelings of frustration, anger, embarrassment, marginalization, and the ever-constant fight to maintain dignity are openly acknowledged and discussed. Each of the 10 people the viewers meet touch on one or more of these themes, reiterating it in their own unique and poignant words. One of the most memorable quotes is said by an 81-year-old woman who explains, "I am not a loaf of bread that you can pick up and move from here to there. We can talk about things so I can make an informed decision."
And yet, with all the difficult issues that people with Alzheimer's disease are facing, the viewer leaves the film with a belief in the resiliency of the human spirit and of a person's ability to try to cope and live, no matter what the challenges. Living with Alzheimer's disease is also a major theme of the video. People in this video are laughing, still enjoying life, and forging new relationships—partnerships—with their spouses and children now turned caregivers. Coping strategies, such as attending support groups and adult day centers and talking with friends and families about their concerns, are emphasized. The lighting used in the video, scenes of camaraderie, and calming music support this positive theme.
This video is appropriate on different levels for all audiences from students to researchers, from family members and the lay public to clinicians, and, most importantly, to others newly diagnosed with Alzheimer's disease. It is rare to find a video that has such wide appeal. It is the voices and faces of the people that one will remember. Viewers will come away from this video with some image that has directly touched them—and all this in just an 18-min film. No wonder this reviewer believes that this is still one of the best videos on early-stage Alzheimer's disease available on the market.
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