After a century and an immeasurable amount of resources pumped into research for dementia—particularly for the all encompassing Alzheimer’s disease—the breakthroughs we are witnessing are not in a cure but in care. Care—ignored in funded research—is emerging as the innovator in dementia research.
It is telling that Auguste Deter the first woman to die of Alzheimer’s disease, did not die of Alzheimer’s disease, but of bedsores. Despite this painful death, Alzheimer's disease was the one that gained prominence, and has now dominated research in geriatrics. For a hundred years the mantra among clinicians has been that the disease follows a set course. Even though we do not understand the disease we continue to follow the belief that we can perhaps stop the disease. And we believe that we can make it go away.
Unlike with children, diseases in older age tend to stay. Some are companions to the death (e.g., prostate cancer) while others will likely cause our death (e.g., heart disease.) For sure, few diseases in older age will be cured, Alzheimer’s disease (or dementia in general) being one of these incurable diseases. Although dementia is now the fifth or sixth primary cause of death, in fact, like Auguste Deter it is always something else that kills you other than dementia. It is therefore important not to ignore other diseases and to treat the whole person.
The idea that the expression of dementia is purely biological has been shown to be false. For Thomas Kitwood, for example, people with dementia were not only disadvantaged by the disease itself which hinders thinking and behaving, but he also saw that the attitudes and actions of those around them increased this disadvantage. Agitation being a case in point, caused by a combination of the incapacities of the disease together with the rigid expectations of their caregivers. Kitwood, for all of his theoretical flaws, revolutionized care for people with dementia. He both named and framed Person-Centered Therapy. Opened up a way of caring for someone with dementia by allowing the individual to dictate what is best for them. This approach was well understood in the field of disability.
Instead of people with dementia being warehoused until death released them from their misery, as Auguste Deter endured, the person-centered approach ensured a focus on the person’s well being. Personhood remains a caring philosophy rather than a curative one. But this was not enough.
In a world where we see our cognition as the ultimate representation of who we are, we need a stronger system to protect people with dementia. And this came from the disability field and pushed dementia research into the political arena through the concept of citizenship. Citizenship is the idea that all individuals have rights and goes beyond personhood. In 2007 British Ruth Bartlett and Canadian Deborah O'Connor argued that although “the idea that people with dementia have rights has long been recognized” but the idea of citizenship where those rights are enforced has rarely, if ever, been explicitly applied to people with dementia.
Citizenship can be applied to promote the status of discriminated groups. However the concept of citizenship assumes that the individual has the capacity to exercise their rights and to honor their responsibilities. Such assumptions are not obvious among people with severe dementia. And there's the rub.
To get around this conundrum, the concept of ‘intimate citizenship’ has been put forward that focus on citizenship moderated and mediated by family and caregivers. But such membership does not address any institution discrimination. Clive Baldwin with the Bradford Dementia Group would argue that people with dementia still have a story to tell. More importantly they might influence the stories of those who interact with them. In lieu of having independent advocacy organization that lobby on behalf of people with dementia, reliance on caregivers remains. And that could be an issue if there is discord between the person living with dementia and their caregiver or companion.
We discriminate against people with dementia in getting costly treatment for another health issue that they might have. For example we deny hip replacements or surgeries for non-life threatening issues. We have laws that restrict the ability for people with dementia to drive and to conduct business. Legal status is dependent on whether an individual has mental capacity. This status determines what rights a person has. Although these laws are justified because they protect others in society, there remain other discriminations inherent in a society. Discriminations based on our power to make decisions on behalf of someone. We have inherited “cognitive citizenship.” In her 2004 PhD thesis Petula Mary Brannelly reported that it is not policy or legislation but clinicians personal values that resulted in one in ten people with dementia being detained against their will and result in having the most restrictive of care outcomes.
Again, Ruth Bartlett who has devoted much of her research on defining citizenship in dementia care, followed sixteen dementia activities campaigning for social change. She revealed that although campaigning can be energizing and reaffirming there were also drawbacks. Other than fatigue due to their disease, the activists reported oppression related to how they were expected to behave. Although the struggle for citizenship has only just begun for people living with dementia, there is still a missing piece. Bartlett recently examined ‘dementia friendly communities’ where citizenship is perhaps most clearly enacted. But again in disability, the concept of equal but separate remains an issue. Citizenship needs to occur in public social spaces. It is about a redistribution of power.
Susan Behuniak discusses the many different definitions of power and how the person with dementia has been treated in the past, and more importantly, how they need to be treated in the future. The problem is that legal status remains dependent upon cognition. The question whether an individual has mental capacity or not, determines whether a legal person exists or not, and this status then determines the rights the person can have. The move is to reimagine the person with dementia. Initially through the medical interpretation the person with dementia was simply a “patient” than through Kitwood we came to see a “person” together with an “embodied self” and now, with legal rights we see people with dementia as a “citizen.” The problem with citizenship is that the people interpret the law as requiring competency and capacity. But this is not true. We have laws that protect fetuses,, children, animals even trees. Eventually the aim is to see a person with dementia as a “vulnerable person” who has both rights and protections. We are at a time when organizations and caregivers/family are supporting the individual to ensure that laws to protect these rights are not being ignored through discrimination. Organizations will have to transform themselves from promoting a cure to promoting care. This is already happening. In the United States, Alzheimer's Association has experienced this move from cure to care. Local agencies concerned about care divorced themselves from the national organization that remain concerned with cure. Citizenship of vulnerable persons is the next frontier in care for people with dementia.
© USA Copyrighted 2017 Mario D. Garrett
It is telling that Auguste Deter the first woman to die of Alzheimer’s disease, did not die of Alzheimer’s disease, but of bedsores. Despite this painful death, Alzheimer's disease was the one that gained prominence, and has now dominated research in geriatrics. For a hundred years the mantra among clinicians has been that the disease follows a set course. Even though we do not understand the disease we continue to follow the belief that we can perhaps stop the disease. And we believe that we can make it go away.
Unlike with children, diseases in older age tend to stay. Some are companions to the death (e.g., prostate cancer) while others will likely cause our death (e.g., heart disease.) For sure, few diseases in older age will be cured, Alzheimer’s disease (or dementia in general) being one of these incurable diseases. Although dementia is now the fifth or sixth primary cause of death, in fact, like Auguste Deter it is always something else that kills you other than dementia. It is therefore important not to ignore other diseases and to treat the whole person.
The idea that the expression of dementia is purely biological has been shown to be false. For Thomas Kitwood, for example, people with dementia were not only disadvantaged by the disease itself which hinders thinking and behaving, but he also saw that the attitudes and actions of those around them increased this disadvantage. Agitation being a case in point, caused by a combination of the incapacities of the disease together with the rigid expectations of their caregivers. Kitwood, for all of his theoretical flaws, revolutionized care for people with dementia. He both named and framed Person-Centered Therapy. Opened up a way of caring for someone with dementia by allowing the individual to dictate what is best for them. This approach was well understood in the field of disability.
Instead of people with dementia being warehoused until death released them from their misery, as Auguste Deter endured, the person-centered approach ensured a focus on the person’s well being. Personhood remains a caring philosophy rather than a curative one. But this was not enough.
In a world where we see our cognition as the ultimate representation of who we are, we need a stronger system to protect people with dementia. And this came from the disability field and pushed dementia research into the political arena through the concept of citizenship. Citizenship is the idea that all individuals have rights and goes beyond personhood. In 2007 British Ruth Bartlett and Canadian Deborah O'Connor argued that although “the idea that people with dementia have rights has long been recognized” but the idea of citizenship where those rights are enforced has rarely, if ever, been explicitly applied to people with dementia.
Citizenship can be applied to promote the status of discriminated groups. However the concept of citizenship assumes that the individual has the capacity to exercise their rights and to honor their responsibilities. Such assumptions are not obvious among people with severe dementia. And there's the rub.
To get around this conundrum, the concept of ‘intimate citizenship’ has been put forward that focus on citizenship moderated and mediated by family and caregivers. But such membership does not address any institution discrimination. Clive Baldwin with the Bradford Dementia Group would argue that people with dementia still have a story to tell. More importantly they might influence the stories of those who interact with them. In lieu of having independent advocacy organization that lobby on behalf of people with dementia, reliance on caregivers remains. And that could be an issue if there is discord between the person living with dementia and their caregiver or companion.
We discriminate against people with dementia in getting costly treatment for another health issue that they might have. For example we deny hip replacements or surgeries for non-life threatening issues. We have laws that restrict the ability for people with dementia to drive and to conduct business. Legal status is dependent on whether an individual has mental capacity. This status determines what rights a person has. Although these laws are justified because they protect others in society, there remain other discriminations inherent in a society. Discriminations based on our power to make decisions on behalf of someone. We have inherited “cognitive citizenship.” In her 2004 PhD thesis Petula Mary Brannelly reported that it is not policy or legislation but clinicians personal values that resulted in one in ten people with dementia being detained against their will and result in having the most restrictive of care outcomes.
Again, Ruth Bartlett who has devoted much of her research on defining citizenship in dementia care, followed sixteen dementia activities campaigning for social change. She revealed that although campaigning can be energizing and reaffirming there were also drawbacks. Other than fatigue due to their disease, the activists reported oppression related to how they were expected to behave. Although the struggle for citizenship has only just begun for people living with dementia, there is still a missing piece. Bartlett recently examined ‘dementia friendly communities’ where citizenship is perhaps most clearly enacted. But again in disability, the concept of equal but separate remains an issue. Citizenship needs to occur in public social spaces. It is about a redistribution of power.
Susan Behuniak discusses the many different definitions of power and how the person with dementia has been treated in the past, and more importantly, how they need to be treated in the future. The problem is that legal status remains dependent upon cognition. The question whether an individual has mental capacity or not, determines whether a legal person exists or not, and this status then determines the rights the person can have. The move is to reimagine the person with dementia. Initially through the medical interpretation the person with dementia was simply a “patient” than through Kitwood we came to see a “person” together with an “embodied self” and now, with legal rights we see people with dementia as a “citizen.” The problem with citizenship is that the people interpret the law as requiring competency and capacity. But this is not true. We have laws that protect fetuses,, children, animals even trees. Eventually the aim is to see a person with dementia as a “vulnerable person” who has both rights and protections. We are at a time when organizations and caregivers/family are supporting the individual to ensure that laws to protect these rights are not being ignored through discrimination. Organizations will have to transform themselves from promoting a cure to promoting care. This is already happening. In the United States, Alzheimer's Association has experienced this move from cure to care. Local agencies concerned about care divorced themselves from the national organization that remain concerned with cure. Citizenship of vulnerable persons is the next frontier in care for people with dementia.
© USA Copyrighted 2017 Mario D. Garrett
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