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The Person in Dementia: A Study of Nursing Home Care in the US
Winner of the Society for Medical Anthropology's 2009 New Millennium Award
Imagine yourself in advanced age, forced to depend on others for all your basic needs. What would you want to retain of your personal life?
This question is at the heart of a set of case studies that examine the lives of nursing home residents who were diagnosed with senile dementia. Based on two years of intensive comparative ethnographic study in a nursing home in a Northeastern American city, The Person in Dementia dramatically contrasts the outcomes of two approaches to dementia care for elders with severely disturbed a task-oriented approach based on a biomedical view of disease progression and a flexible person-sustaining approach focusing on individual needs and communication. By emphasizing "personhood," which looks beyond physical and reasoning abilities to a person's will and relationship with others, McLean conceptualizes dementia care as a moral enterprise . She encourages innovative and compassionate elder care and accountability across the spectrum from direct care-givers to nursing home owners to those at the highest levels of government.
McLean also offers a fine-tuned analysis of how relations among direct care-giving, professional, and administrative staff within a facility can dramatically affect the quality of dementia care. The book includes policy recommendations that are geared to long-term care administrators and policy-makers as well as to caregivers, families, and elders with dementia.
Imagine yourself in advanced age, forced to depend on others for all your basic needs. What would you want to retain of your personal life?
This question is at the heart of a set of case studies that examine the lives of nursing home residents who were diagnosed with senile dementia. Based on two years of intensive comparative ethnographic study in a nursing home in a Northeastern American city, The Person in Dementia dramatically contrasts the outcomes of two approaches to dementia care for elders with severely disturbed a task-oriented approach based on a biomedical view of disease progression and a flexible person-sustaining approach focusing on individual needs and communication. By emphasizing "personhood," which looks beyond physical and reasoning abilities to a person's will and relationship with others, McLean conceptualizes dementia care as a moral enterprise . She encourages innovative and compassionate elder care and accountability across the spectrum from direct care-givers to nursing home owners to those at the highest levels of government.
McLean also offers a fine-tuned analysis of how relations among direct care-giving, professional, and administrative staff within a facility can dramatically affect the quality of dementia care. The book includes policy recommendations that are geared to long-term care administrators and policy-makers as well as to caregivers, families, and elders with dementia.
320 pages, Paperback
First published October 31, 2006
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June 18, 2015
I know the title has probably turned off most of you by now, but this is a topic of great interest to me & McLean's writing is extremely accessible, especially for people like me who don't have a lot of formalized medical training in dementia care. McLean is a professor of Anthropology at Central Michigan University focusing on several themes related to community mental health and aging, so The Person in Dementia seems a proper culmination of such work. The book is divided into three major sections focusing on theory, observations, and recommendations for the future in dementia care. The Person in Dementia reminded me of how important it is for everyone to get involved in developing better long-term care options for the elderly, since many of us will eventually find ourselves or those we love needing such care.
After my research methods class I've kind of fallen in love with reading ethnographic research studies (I'm a sucker for anything with a good narrative) and McLean's is no exception. I originally planned to only skim through the introductory theory chapters and focus on her case studies and maybe her final conclusions and recommendations as well, but after reading the introduction (the straight forward style of which should be followed by every academic book publisher) I was intrigued to learn more of the history and medical approaches to dementia care. Her writing is engaging throughout. I couldn't believe I actually read the chapter that dealt with pyschological and social theories on dementia in elders, but somehow she made the essential parts clear so that I can tell you there are perfectly valid interpretations of personhood and self-identity that validate the need to care for the social and emotional needs of elders with dementia.
While it's been 15 years since McLean performed her observations on the Snow units of the unnamed East-Coast retirement community, her research on care settings for elders with dementia is current, with her final chapter of recommendations for change focusing on newer models in senior care including the growing popularity of assisted living and community based models that support her conclusions on the benefits of person-centered care. While I wasn't surprised that she found preserving an elder's dignity was related to positive outcomes, I was surprised at just how negative the outcomes were when the focus was "bed and body" work without giving special attention to preserving the individuality of residents.
Such a focus often comes out of a mistaken folk belief that because dementia is an incurable condition that mere maintenance of the physical body is the only option left for caregivers. In fact, the medical profession generally believes that treating secondary conditions can improve functioning of elders suffering from various forms of dementia. But often times, communicating with elders in these situations requires extra time and effort, something nursing staffs generally do not have. McLean also criticizes the overly-bureaucratic OBRA regulations passed in the late 1980s and 1990s in hopes of reforming the nursing home industry, but instead busying nurses with paperwork, keeping them away from their patients, and putting the focus on the "bed and body" work that research has found is of secondary importance to more social concerns of elders now unable to interact with society in the ways they were accustomed to.
A lot of McLean's findings support my observations working while for a non-medical senior care company. I worked primarily with seniors diagnosed with Alzheimer's Disease, so I've seen the disease in many individuals in many different care settings. Working for a company focused on care rather than just medical needs, I can attest to the value of addressing those needs. Other than reminding her to take her pills and make sure she ate a good lunch, I did nothing even remotely medical for one lady, but I could tell how much she appreciated having me to take her out of the house. Before she lost her driver's license she had been very social and so taking her out to lunch or to the petting zoo at the nearby park or to her favorite clothing store to browse always seemed to perk her up and made her much more cooperative when doing some of the things she didn't like (taking her pills, for one).
Really, though, I wish I would have read this book when I had that job because I think it would have helped me better understand my clients, especially on their bad days when we'd often both get frustrated because we couldn't communicate properly. On those days I would sometimes take the nihilistic view that it didn't really matter since the client didn't really understand what was going on around her. I might have tried harder, or been more effective if I would have understand that many behavioral disturbances (BDs) are attempts by the elder to communicate with a world they no longer fully understand or have control over, and that taking the time to understand them could make interactions more enjoyable for both of us.
After my research methods class I've kind of fallen in love with reading ethnographic research studies (I'm a sucker for anything with a good narrative) and McLean's is no exception. I originally planned to only skim through the introductory theory chapters and focus on her case studies and maybe her final conclusions and recommendations as well, but after reading the introduction (the straight forward style of which should be followed by every academic book publisher) I was intrigued to learn more of the history and medical approaches to dementia care. Her writing is engaging throughout. I couldn't believe I actually read the chapter that dealt with pyschological and social theories on dementia in elders, but somehow she made the essential parts clear so that I can tell you there are perfectly valid interpretations of personhood and self-identity that validate the need to care for the social and emotional needs of elders with dementia.
While it's been 15 years since McLean performed her observations on the Snow units of the unnamed East-Coast retirement community, her research on care settings for elders with dementia is current, with her final chapter of recommendations for change focusing on newer models in senior care including the growing popularity of assisted living and community based models that support her conclusions on the benefits of person-centered care. While I wasn't surprised that she found preserving an elder's dignity was related to positive outcomes, I was surprised at just how negative the outcomes were when the focus was "bed and body" work without giving special attention to preserving the individuality of residents.
Such a focus often comes out of a mistaken folk belief that because dementia is an incurable condition that mere maintenance of the physical body is the only option left for caregivers. In fact, the medical profession generally believes that treating secondary conditions can improve functioning of elders suffering from various forms of dementia. But often times, communicating with elders in these situations requires extra time and effort, something nursing staffs generally do not have. McLean also criticizes the overly-bureaucratic OBRA regulations passed in the late 1980s and 1990s in hopes of reforming the nursing home industry, but instead busying nurses with paperwork, keeping them away from their patients, and putting the focus on the "bed and body" work that research has found is of secondary importance to more social concerns of elders now unable to interact with society in the ways they were accustomed to.
A lot of McLean's findings support my observations working while for a non-medical senior care company. I worked primarily with seniors diagnosed with Alzheimer's Disease, so I've seen the disease in many individuals in many different care settings. Working for a company focused on care rather than just medical needs, I can attest to the value of addressing those needs. Other than reminding her to take her pills and make sure she ate a good lunch, I did nothing even remotely medical for one lady, but I could tell how much she appreciated having me to take her out of the house. Before she lost her driver's license she had been very social and so taking her out to lunch or to the petting zoo at the nearby park or to her favorite clothing store to browse always seemed to perk her up and made her much more cooperative when doing some of the things she didn't like (taking her pills, for one).
Really, though, I wish I would have read this book when I had that job because I think it would have helped me better understand my clients, especially on their bad days when we'd often both get frustrated because we couldn't communicate properly. On those days I would sometimes take the nihilistic view that it didn't really matter since the client didn't really understand what was going on around her. I might have tried harder, or been more effective if I would have understand that many behavioral disturbances (BDs) are attempts by the elder to communicate with a world they no longer fully understand or have control over, and that taking the time to understand them could make interactions more enjoyable for both of us.
Displaying 1 of 1 review