Seeing Dementia: Two Radically Different Views

Seeing Dementia: Two Radically Different Views Documentary:Living with Alzheimer’s and Dementia (56 min) Produced by Nashville Public Television Producer/Director/Writer: Mary Makley Available:http://video.wnpt.org/video/2365789188/ Release date: June 27, 2016 Documentary:Alzheimer’s: Every Minute Counts (55 minutes) Produced by Twin Cities Public Television Producer/Director: Elizabeth Arledge Available:http://www.pbs.org/video/alzheimers-every-minute-counts-every-minute-counts/ Release date: January 25, 2017 Two recent Public Broadcasting Service (PBS) programs, aired within 6 months of each other, present radically different views of dementia. From the opening lines of each program and from the tone of the respective music scores, we begin to sense the difference. Living with Alzheimer’s and Dementia is introduced by singer Kathy Mattea who, after noting the struggles and challenges dementia brings to individuals and families, asks “How can you continue to live fully even with that diagnosis, and how can we as a community better support those who are living with dementia and their care partners?” The music accompanying the opening of the program is an understated harmony of piano and violin weaving softly around the comments of various voices describing the impacts of dementia on families and society. By contrast, the opening of Alzheimer’s: Every Minute Counts presents a staccato march of sound bites invoking dire scenarios. “Alzheimer’s is an epic disease.” “It’s going to sink the health care economy.” “This disease will take us down.” Interspersed with these are several brief comments of family members describing their frustration over dealing with the behavior of a loved one living with dementia. The music score is urgent and intense, ending in a dramatic crescendo as the title of the program fades up. As the program continues, it repeatedly portrays the deficits and losses that dementia can bring, and describes the personal and financial burden this places on those who care for loved ones who have dementia—and on taxpayers. The film details the impact that dementia is having on the healthcare system and repeatedly warns that the “tsunami of Alzheimer’s” caused by the swelling demographic of baby boomers will create an untenable financial crisis in the United States. These warnings are followed by repeated calls for the funding of more research and clinical trials of new drugs that will someday bring a cure for dementia. Interwoven throughout Alzheimer’s: Every Minute Counts are short sound bites taken from the phone calls of family members to, one assumes, an Alzheimer’s hotline. Each of these short comments reflect a sense of despair and hopelessness. (“It’s just so sad seeing a person wither away like this.” “She is combative and difficult.” “There’s no getting the keys away from him.”) The visuals used while we are hearing these short snatches from hotline calls are exterior shots of apartments and houses at night, reinforcing a sense of claustrophobic bleakness and despair. The film also presents the stories of two families that are dealing with the stress of dementia. In the first of these, a daughter, Daisy, cares fulltime for her mother, Sonia, who, at 60 has been living with Alzheimer’s for several years. At one point we accompany them on one of their visits to a neurology center. There, with Sonia in the room, the neurologist addresses all questions about her to Daisy. When Daisy says that Sonia doesn’t recognize her as her daughter anymore, the neurologist turns to Sonia, points to Daisy and briskly asks, “Who is this?” (Such a question rapid-fired at someone living with memory loss is, we might note, the equivalent to pointedly asking a person who cannot walk, to climb a flight of stairs.) Sonia remains silent and eventually closes her eyes in an obvious attempt to deal with the rapidly paced barrage of questions and conversation about her. In the second story, a son struggles with the guilt of moving his mother into an assisted living facility and deals with the shock of how much it will cost. These stories are presented in somber tones, noting the inevitable decline facing each of the individuals and the effect this has on family members. The stories, along with the short snatches from hotline calls, serve the main thrust of the documentary which is to highlight the urgency for the “someday cure” to arrive sooner rather than later. In addition to the families, the voices of researchers, medical personnel, politicians and policy experts all contribute to this sense of urgency. It is noted that dementia is the only 1 of the top 10 causes of death in the United States that does not have any medical/pharmaceutical means of preventing, or at least slowing down, its development—a result, it is implied, of inadequate attention and funding given to dementia research. Alzheimer’s: Every Minute Counts is basically a repeat performance of a 2004 documentary, The Forgetting, created by the same producer (Arledge and Arledge, 2004). In that film, the message was also one of dramatic despair along with repeated framings of dementia as an “inevitable loss of self.” The predominant messages of both of these films are grounded in what is often called a “deficit-based” view of dementia. Dr. G. Allen Power, a geriatrician and educator, in his recent book, Dementia Beyond Disease, carefully deconstructs this commonly held societal view and replaces it with a more holistic and nonstigmatized understanding of the cognitive changes that dementia brings (Power, 2014). While Every Minute Counts is an exceptionally well constructed and sharply imaged film, its message feels unbalanced and top-heavy with an emphasis on the drama of decline. Nowhere throughout the entire film is any attention given to the societal stigmas attached to dementia and the impact this has on persons living with the condition and on their care partners. Nowhere in the film is there any acknowledgement that the very manner of interacting with persons who are experiencing dementia can make a substantial difference in their condition and their well-being. Nor does the film at any point advocate for a wider and more effective network of support and education for family and professional care partners of individuals living with dementia. In extreme contrast, the tone of the other documentary, Living with Alzheimer’s and Dementia, is radically different. While it does not discount the challenges that dementia brings, its focus is on the ways that care partners, along with community-based programs, can support and enable persons living with dementia to remain meaningfully connected and engaged in life. Interwoven within this perspective is a repeated call for more education, resources and a collaboration of community programs to enable that kind of support. Several examples of these kinds of collaborative community-based programs are shown throughout the film. In addition, an innovative residential care program designed to enable and support the remaining abilities and sensitivities of persons experiencing dementia is highlighted in the last part of the film. This program provides several avenues of enriching engagement that bypass the deficits often brought by dementia and, instead, tap into the joys of alternative modes of involvement and expression. A son of one of the residents says, “The engagement is actually refreshing her cognitive ability…so community and engagement are really at the cornerstone of what is working for my mother.” Living with Alzheimer’s and Dementia brings a much needed shift to the public discourse and awareness surrounding dementia. Watching it in tandem with Alzheimer’s: Every Minute Counts is particularly instructive in highlighting the inadequacies of a narrowly focused medical/pharmaceutical approach to understanding dementia. References Arledge, E., & Arledge, E. ( 2004). The forgetting [Documentary Movie] . United States: Twin Cities Public Television. Power, G. ( 2014). Dementia beyond disease . Baltimore, MD: Health Professions Press. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Gerontologist Oxford University Press

Seeing Dementia: Two Radically Different Views

The Gerontologist , Volume Advance Article (3) – Apr 3, 2018

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Oxford University Press
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© The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.
ISSN
0016-9013
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1758-5341
D.O.I.
10.1093/geront/gny027
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Abstract

Documentary:Living with Alzheimer’s and Dementia (56 min) Produced by Nashville Public Television Producer/Director/Writer: Mary Makley Available:http://video.wnpt.org/video/2365789188/ Release date: June 27, 2016 Documentary:Alzheimer’s: Every Minute Counts (55 minutes) Produced by Twin Cities Public Television Producer/Director: Elizabeth Arledge Available:http://www.pbs.org/video/alzheimers-every-minute-counts-every-minute-counts/ Release date: January 25, 2017 Two recent Public Broadcasting Service (PBS) programs, aired within 6 months of each other, present radically different views of dementia. From the opening lines of each program and from the tone of the respective music scores, we begin to sense the difference. Living with Alzheimer’s and Dementia is introduced by singer Kathy Mattea who, after noting the struggles and challenges dementia brings to individuals and families, asks “How can you continue to live fully even with that diagnosis, and how can we as a community better support those who are living with dementia and their care partners?” The music accompanying the opening of the program is an understated harmony of piano and violin weaving softly around the comments of various voices describing the impacts of dementia on families and society. By contrast, the opening of Alzheimer’s: Every Minute Counts presents a staccato march of sound bites invoking dire scenarios. “Alzheimer’s is an epic disease.” “It’s going to sink the health care economy.” “This disease will take us down.” Interspersed with these are several brief comments of family members describing their frustration over dealing with the behavior of a loved one living with dementia. The music score is urgent and intense, ending in a dramatic crescendo as the title of the program fades up. As the program continues, it repeatedly portrays the deficits and losses that dementia can bring, and describes the personal and financial burden this places on those who care for loved ones who have dementia—and on taxpayers. The film details the impact that dementia is having on the healthcare system and repeatedly warns that the “tsunami of Alzheimer’s” caused by the swelling demographic of baby boomers will create an untenable financial crisis in the United States. These warnings are followed by repeated calls for the funding of more research and clinical trials of new drugs that will someday bring a cure for dementia. Interwoven throughout Alzheimer’s: Every Minute Counts are short sound bites taken from the phone calls of family members to, one assumes, an Alzheimer’s hotline. Each of these short comments reflect a sense of despair and hopelessness. (“It’s just so sad seeing a person wither away like this.” “She is combative and difficult.” “There’s no getting the keys away from him.”) The visuals used while we are hearing these short snatches from hotline calls are exterior shots of apartments and houses at night, reinforcing a sense of claustrophobic bleakness and despair. The film also presents the stories of two families that are dealing with the stress of dementia. In the first of these, a daughter, Daisy, cares fulltime for her mother, Sonia, who, at 60 has been living with Alzheimer’s for several years. At one point we accompany them on one of their visits to a neurology center. There, with Sonia in the room, the neurologist addresses all questions about her to Daisy. When Daisy says that Sonia doesn’t recognize her as her daughter anymore, the neurologist turns to Sonia, points to Daisy and briskly asks, “Who is this?” (Such a question rapid-fired at someone living with memory loss is, we might note, the equivalent to pointedly asking a person who cannot walk, to climb a flight of stairs.) Sonia remains silent and eventually closes her eyes in an obvious attempt to deal with the rapidly paced barrage of questions and conversation about her. In the second story, a son struggles with the guilt of moving his mother into an assisted living facility and deals with the shock of how much it will cost. These stories are presented in somber tones, noting the inevitable decline facing each of the individuals and the effect this has on family members. The stories, along with the short snatches from hotline calls, serve the main thrust of the documentary which is to highlight the urgency for the “someday cure” to arrive sooner rather than later. In addition to the families, the voices of researchers, medical personnel, politicians and policy experts all contribute to this sense of urgency. It is noted that dementia is the only 1 of the top 10 causes of death in the United States that does not have any medical/pharmaceutical means of preventing, or at least slowing down, its development—a result, it is implied, of inadequate attention and funding given to dementia research. Alzheimer’s: Every Minute Counts is basically a repeat performance of a 2004 documentary, The Forgetting, created by the same producer (Arledge and Arledge, 2004). In that film, the message was also one of dramatic despair along with repeated framings of dementia as an “inevitable loss of self.” The predominant messages of both of these films are grounded in what is often called a “deficit-based” view of dementia. Dr. G. Allen Power, a geriatrician and educator, in his recent book, Dementia Beyond Disease, carefully deconstructs this commonly held societal view and replaces it with a more holistic and nonstigmatized understanding of the cognitive changes that dementia brings (Power, 2014). While Every Minute Counts is an exceptionally well constructed and sharply imaged film, its message feels unbalanced and top-heavy with an emphasis on the drama of decline. Nowhere throughout the entire film is any attention given to the societal stigmas attached to dementia and the impact this has on persons living with the condition and on their care partners. Nowhere in the film is there any acknowledgement that the very manner of interacting with persons who are experiencing dementia can make a substantial difference in their condition and their well-being. Nor does the film at any point advocate for a wider and more effective network of support and education for family and professional care partners of individuals living with dementia. In extreme contrast, the tone of the other documentary, Living with Alzheimer’s and Dementia, is radically different. While it does not discount the challenges that dementia brings, its focus is on the ways that care partners, along with community-based programs, can support and enable persons living with dementia to remain meaningfully connected and engaged in life. Interwoven within this perspective is a repeated call for more education, resources and a collaboration of community programs to enable that kind of support. Several examples of these kinds of collaborative community-based programs are shown throughout the film. In addition, an innovative residential care program designed to enable and support the remaining abilities and sensitivities of persons experiencing dementia is highlighted in the last part of the film. This program provides several avenues of enriching engagement that bypass the deficits often brought by dementia and, instead, tap into the joys of alternative modes of involvement and expression. A son of one of the residents says, “The engagement is actually refreshing her cognitive ability…so community and engagement are really at the cornerstone of what is working for my mother.” Living with Alzheimer’s and Dementia brings a much needed shift to the public discourse and awareness surrounding dementia. Watching it in tandem with Alzheimer’s: Every Minute Counts is particularly instructive in highlighting the inadequacies of a narrowly focused medical/pharmaceutical approach to understanding dementia. References Arledge, E., & Arledge, E. ( 2004). The forgetting [Documentary Movie] . United States: Twin Cities Public Television. Power, G. ( 2014). Dementia beyond disease . Baltimore, MD: Health Professions Press. © The Author(s) 2018. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices)

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The GerontologistOxford University Press

Published: Apr 3, 2018

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