- Email: [email protected]
Overcoming the social death of dementia through language
Perspectives
The Art of Medicine Overcoming the social death of dementia through language In the 1970s and 1980s, advocacy organisations in the USA, such as the National Institute on Aging led by the late Robert Butler, began to develop forceful messages to garner resources for rapidly ageing populations. Denounced as a term lacking scientific rigour, “senility” was gradually phased out of the lexicon in favour of language that framed increasing prevalence of cognitive decline as a “disease epidemic” on par with, for example, polio and other infectious diseases. “Alzheimer’s disease”—an eponym that had been largely dormant after its unheralded 1910 publication by the German psychiatrists Alois Alzheimer and Emil Kraepelin—experienced a nominal resurrection as the main driver of society’s new epidemic. By comparing the scourge of Alzheimer’s disease to polio, powerful expectations for a cure have been fomented, and western cultures have gradually come to view cognitive deterioration as the result of an unremitting disease process that exists outside the spectrum of normal agerelated changes. To conquer these changes, a “war on Alzheimer’s” has been launched spanning four decades. The everyday language we use to describe dementia shapes our perceptions of brain ageing and even contributes to what has been called the “social death” of those most severely affected. Guided by the language of warfare, we have come
The Intergenerational School
For an Obituary of Robert Butler see page 588
Participants at a learning session at The Intergenerational School
586
to view people with dementia as “victims” who are ravaged by a singular marauding disease. Alzheimer’s disease is personified as a “mind-robber” that “attacks” or “strikes” the brains of individuals, leaving plaques and tangles in its wake. One can appreciate how such primal metaphors have been useful in piquing the interest of those who control the public coffers, as well as comforting to those observing inexplicable changes in a loved one. However, if Alzheimer’s disease is in fact on a spectrum with severe brain ageing processes, and if such metaphors guide feelings of enmity and fear towards those natural processes, then the war metaphors so prevalent in our culture could be said to demonise our own human susceptibility to ageing processes while personifying those processes as something external of us. Another dominant language pattern involves the notion that dementia creates a complete and total “loss of self” as it lays waste to one’s brain, resulting in a “living death” or a “death that leaves the body behind”, and creating “nonpersons” or “shells” of individuals afflicted by the disease. These visceral images imply that with the progression of dementia through the brain one’s inner person vanishes. Despite the best efforts of the person-centred care and culture change movements, and the increasing attention paid to dementia in mainstream culture, this totalising language continues to guide popular understandings of dementia as a blanching of selfhood. The notion that dementia imposes a “burden” on caregivers who must watch as a loved one is decimated by disease and adapt their lives around providing care is another powerful language pattern. “Caregiver burden” is a commonly used outcome measure in research that evaluates the degree to which caregiver quality of life is disrupted by taking care of someone with dementia. The dominant trope of “burden” is also manifested on a societal level. Population ageing is repeatedly framed as a “crisis” in which the “burden” of declining populations will engulf scarce resources, causing health-care systems and economies to buckle. There is clearly a cultural utility for our dominant language patterns. An argument can be made that at the level of policy it may be necessary to use provocative metaphors that can sustain funding for dementia research and care services. Furthermore, it has long been argued that fighting a societal war against a singular, conquerable disease can be psychologically important. At the level of family, dominant language patterns can provide coherence and comfort to those struggling to adapt to the difficult changes wrought by cognitive and functional decline. They may also allow caregivers to transfer blame from a loved one affected by dementia to an “external” disease. But medical anthropologists have long warned that social www.thelancet.com Vol 376 August 21, 2010
Perspectives
meanings and metaphors of disease can also be harmful in positioning people in a culture. As Arthur Kleinman has so forcefully argued, language that guides us in consciously or unconsciously removing people from human networks quite literally engenders “social death”. And so part of our moral challenge in adapting to ageing populations is about semantic choice. Making subtle alterations in the way we talk about a disorder can guide us towards a more humane approach to brain ageing. After undertaking fieldwork at The Intergenerational School in Cleveland, OH, USA—an innovative organisation that serves 200 inner-city students and is the one of the first schools to create a “mentor” role for people with dementia—I have often thought about new ways of thinking and speaking about brain ageing. Specifically, our societal perspective might be less distressing if individuals and their families could see dementia not just as a “loss of self”, but as a change in self not so unlike many others a person undergoes in other life stages. Certainly, the symptoms of dementia affect one’s identity in ways that can be troubling and tragic, and there is unquestionable value in the existence of a metaphor such as “loss of self” to describe the sadness felt about the decline of a loved one. But a more sensitive understanding of dementia (a term that is due to be phased out of the fifth edition of Diagnostic and Statistical Manual of Mental Disorders in 2013) can illuminate the fact that identity is never completely lost until death. Progress will occur once we more commonly choose expressions that evoke empathy for changes in personhood rather than stoking fear and sadness, and guide attention towards the remaining humanity in those with dementia and the means through which they can be meaningfully included in the activities of our daily lives. Organisations like The Intergenerational School that embrace a different language—referring to elders with dementia as “mentors” rather than “patients” or “victims”, for instance—foster opportunities to act purposefully in a community context. At The Intergenerational School, it is common to see elders with dementia who live at neighbouring long-term care homes reading books with children, sharing life history narrative, singing songs, and cocreating crafts. Regular participation in these activities gives elders with memory loss a role in protective local networks that can preserve status, purpose, and quality of life. To quell our own personal anxieties about brain ageing, we might consider revising our militaristic language. Instead of prosecuting a “societal war” that most experts regard as fundamentally unwinnable (given the heterogeneity of “Alzheimer’s disease pathology” as well as its undeniable overlaps with normal brain ageing processes), we might shift our expectations from an absolute “cure” to the humble “postponement” of the more debilitating effects of the “syndrome” of brain ageing that can be achieved by modifying known biological, psychosocial, and environmental risk factors across the lifespan. Opting for a concept www.thelancet.com Vol 376 August 21, 2010
like “postponement” can move us away from bellicose words like “prevent”, “halt”, “reverse”, “fight”, “arrest”, and “cure” that promise more than science can deliver, while metaphorically rendering the brain a seat of violence. The fact that we are all, to some degree, succumbing to neuropathological changes can nurture a greater capacity to feel interdependence and solidarity with those more profoundly affected by these changes rather than designating individuals as a “diseased” subspecies tagged with the Alzheimer’s label. Finally, a shift away from the metaphors that portray caregiving as a state of constant bereavement may emancipate the full spectrum of emotions felt by caregivers: not just the deep sadness and distress that are intrinsic to the experience, but also the humour, love, compassion, forgiveness, reconciliation, and other sentiments involved in caring for a loved one with dementia. Caring is not only about shouldering day-to-day responsibilities, but is also an opportunity to return kindness and warmth to parents, relatives, or friends in their time of need, and an invitation to slow down and become more introspective in one’s own life. This is a revelation I have had in my own experience as a carer for a family member and in befriending many people with Alzheimer’s disease diagnoses over the years. It is important to choose language that brings out the dynamism of the caregiver role rather than letting the burden clichés win out. On a societal level, the growing “burden” of ageing populations must also be seen as a triumph of public health and as an unprecedented opportunity to engage the many remaining strengths, talents, and competencies of our growing ranks of elders. Viewing ageing people as potential contributors rather than merely as an amorphous collective burden can serve as an impetus for exploring how community organisations can accommodate and, more importantly, benefit from the presence of elders. The hardships of dementia for individuals and families must not be minimised; nor should the enormous challenges presented by population ageing be disavowed. My charge is not simply to coalesce our societal understanding about dementia around more positive imagery, but rather to endow health professionals, families, and individuals affected by brain ageing with different linguistic choices that can better align our habits of speech with scientific fact and shared humanity. Choosing new language patterns can reshape our thoughts, attitudes, and actions towards our ageing neighbours and our own ageing brains, giving rise to a slightly different and more life-affirming reality that connects us to those who are ageing instead of hastening their social death. I thank Alzheimer’s Disease International and Fondation Mèdèric Alzheimer for supporting this work.
Daniel R George Department of Humanities, Penn State Milton S Hershey Medical Center, Penn State College of Medicine, Hershey, PA 17033, USA [email protected]
Further reading Basting AD. Forget memory: creating better lives for people with dementia. Baltimore, MD: The Johns Hopkins University Press, 2009. Kitwood T. Dementia reconsidered: the person comes first. Buckingham: Open University Press, 1997. Kleinman A. Global mental health: a failure of humanity. Lancet 2009; 374: 603–04. Sontag S. Illness as metaphor. New York: Farrar, Strauss and Giroux, 1978. Whitehouse PJ, George, DR. The myth of Alzheimer’s: what you aren’t being told about today’s most dreaded diagnosis. New York: St Martin’s Press, 2008.
587
The Art of Medicine Overcoming the social death of dementia through language In the 1970s and 1980s, advocacy organisations in the USA, such as the National Institute on Aging led by the late Robert Butler, began to develop forceful messages to garner resources for rapidly ageing populations. Denounced as a term lacking scientific rigour, “senility” was gradually phased out of the lexicon in favour of language that framed increasing prevalence of cognitive decline as a “disease epidemic” on par with, for example, polio and other infectious diseases. “Alzheimer’s disease”—an eponym that had been largely dormant after its unheralded 1910 publication by the German psychiatrists Alois Alzheimer and Emil Kraepelin—experienced a nominal resurrection as the main driver of society’s new epidemic. By comparing the scourge of Alzheimer’s disease to polio, powerful expectations for a cure have been fomented, and western cultures have gradually come to view cognitive deterioration as the result of an unremitting disease process that exists outside the spectrum of normal agerelated changes. To conquer these changes, a “war on Alzheimer’s” has been launched spanning four decades. The everyday language we use to describe dementia shapes our perceptions of brain ageing and even contributes to what has been called the “social death” of those most severely affected. Guided by the language of warfare, we have come
The Intergenerational School
For an Obituary of Robert Butler see page 588
Participants at a learning session at The Intergenerational School
586
to view people with dementia as “victims” who are ravaged by a singular marauding disease. Alzheimer’s disease is personified as a “mind-robber” that “attacks” or “strikes” the brains of individuals, leaving plaques and tangles in its wake. One can appreciate how such primal metaphors have been useful in piquing the interest of those who control the public coffers, as well as comforting to those observing inexplicable changes in a loved one. However, if Alzheimer’s disease is in fact on a spectrum with severe brain ageing processes, and if such metaphors guide feelings of enmity and fear towards those natural processes, then the war metaphors so prevalent in our culture could be said to demonise our own human susceptibility to ageing processes while personifying those processes as something external of us. Another dominant language pattern involves the notion that dementia creates a complete and total “loss of self” as it lays waste to one’s brain, resulting in a “living death” or a “death that leaves the body behind”, and creating “nonpersons” or “shells” of individuals afflicted by the disease. These visceral images imply that with the progression of dementia through the brain one’s inner person vanishes. Despite the best efforts of the person-centred care and culture change movements, and the increasing attention paid to dementia in mainstream culture, this totalising language continues to guide popular understandings of dementia as a blanching of selfhood. The notion that dementia imposes a “burden” on caregivers who must watch as a loved one is decimated by disease and adapt their lives around providing care is another powerful language pattern. “Caregiver burden” is a commonly used outcome measure in research that evaluates the degree to which caregiver quality of life is disrupted by taking care of someone with dementia. The dominant trope of “burden” is also manifested on a societal level. Population ageing is repeatedly framed as a “crisis” in which the “burden” of declining populations will engulf scarce resources, causing health-care systems and economies to buckle. There is clearly a cultural utility for our dominant language patterns. An argument can be made that at the level of policy it may be necessary to use provocative metaphors that can sustain funding for dementia research and care services. Furthermore, it has long been argued that fighting a societal war against a singular, conquerable disease can be psychologically important. At the level of family, dominant language patterns can provide coherence and comfort to those struggling to adapt to the difficult changes wrought by cognitive and functional decline. They may also allow caregivers to transfer blame from a loved one affected by dementia to an “external” disease. But medical anthropologists have long warned that social www.thelancet.com Vol 376 August 21, 2010
Perspectives
meanings and metaphors of disease can also be harmful in positioning people in a culture. As Arthur Kleinman has so forcefully argued, language that guides us in consciously or unconsciously removing people from human networks quite literally engenders “social death”. And so part of our moral challenge in adapting to ageing populations is about semantic choice. Making subtle alterations in the way we talk about a disorder can guide us towards a more humane approach to brain ageing. After undertaking fieldwork at The Intergenerational School in Cleveland, OH, USA—an innovative organisation that serves 200 inner-city students and is the one of the first schools to create a “mentor” role for people with dementia—I have often thought about new ways of thinking and speaking about brain ageing. Specifically, our societal perspective might be less distressing if individuals and their families could see dementia not just as a “loss of self”, but as a change in self not so unlike many others a person undergoes in other life stages. Certainly, the symptoms of dementia affect one’s identity in ways that can be troubling and tragic, and there is unquestionable value in the existence of a metaphor such as “loss of self” to describe the sadness felt about the decline of a loved one. But a more sensitive understanding of dementia (a term that is due to be phased out of the fifth edition of Diagnostic and Statistical Manual of Mental Disorders in 2013) can illuminate the fact that identity is never completely lost until death. Progress will occur once we more commonly choose expressions that evoke empathy for changes in personhood rather than stoking fear and sadness, and guide attention towards the remaining humanity in those with dementia and the means through which they can be meaningfully included in the activities of our daily lives. Organisations like The Intergenerational School that embrace a different language—referring to elders with dementia as “mentors” rather than “patients” or “victims”, for instance—foster opportunities to act purposefully in a community context. At The Intergenerational School, it is common to see elders with dementia who live at neighbouring long-term care homes reading books with children, sharing life history narrative, singing songs, and cocreating crafts. Regular participation in these activities gives elders with memory loss a role in protective local networks that can preserve status, purpose, and quality of life. To quell our own personal anxieties about brain ageing, we might consider revising our militaristic language. Instead of prosecuting a “societal war” that most experts regard as fundamentally unwinnable (given the heterogeneity of “Alzheimer’s disease pathology” as well as its undeniable overlaps with normal brain ageing processes), we might shift our expectations from an absolute “cure” to the humble “postponement” of the more debilitating effects of the “syndrome” of brain ageing that can be achieved by modifying known biological, psychosocial, and environmental risk factors across the lifespan. Opting for a concept www.thelancet.com Vol 376 August 21, 2010
like “postponement” can move us away from bellicose words like “prevent”, “halt”, “reverse”, “fight”, “arrest”, and “cure” that promise more than science can deliver, while metaphorically rendering the brain a seat of violence. The fact that we are all, to some degree, succumbing to neuropathological changes can nurture a greater capacity to feel interdependence and solidarity with those more profoundly affected by these changes rather than designating individuals as a “diseased” subspecies tagged with the Alzheimer’s label. Finally, a shift away from the metaphors that portray caregiving as a state of constant bereavement may emancipate the full spectrum of emotions felt by caregivers: not just the deep sadness and distress that are intrinsic to the experience, but also the humour, love, compassion, forgiveness, reconciliation, and other sentiments involved in caring for a loved one with dementia. Caring is not only about shouldering day-to-day responsibilities, but is also an opportunity to return kindness and warmth to parents, relatives, or friends in their time of need, and an invitation to slow down and become more introspective in one’s own life. This is a revelation I have had in my own experience as a carer for a family member and in befriending many people with Alzheimer’s disease diagnoses over the years. It is important to choose language that brings out the dynamism of the caregiver role rather than letting the burden clichés win out. On a societal level, the growing “burden” of ageing populations must also be seen as a triumph of public health and as an unprecedented opportunity to engage the many remaining strengths, talents, and competencies of our growing ranks of elders. Viewing ageing people as potential contributors rather than merely as an amorphous collective burden can serve as an impetus for exploring how community organisations can accommodate and, more importantly, benefit from the presence of elders. The hardships of dementia for individuals and families must not be minimised; nor should the enormous challenges presented by population ageing be disavowed. My charge is not simply to coalesce our societal understanding about dementia around more positive imagery, but rather to endow health professionals, families, and individuals affected by brain ageing with different linguistic choices that can better align our habits of speech with scientific fact and shared humanity. Choosing new language patterns can reshape our thoughts, attitudes, and actions towards our ageing neighbours and our own ageing brains, giving rise to a slightly different and more life-affirming reality that connects us to those who are ageing instead of hastening their social death. I thank Alzheimer’s Disease International and Fondation Mèdèric Alzheimer for supporting this work.
Daniel R George Department of Humanities, Penn State Milton S Hershey Medical Center, Penn State College of Medicine, Hershey, PA 17033, USA [email protected]
Further reading Basting AD. Forget memory: creating better lives for people with dementia. Baltimore, MD: The Johns Hopkins University Press, 2009. Kitwood T. Dementia reconsidered: the person comes first. Buckingham: Open University Press, 1997. Kleinman A. Global mental health: a failure of humanity. Lancet 2009; 374: 603–04. Sontag S. Illness as metaphor. New York: Farrar, Strauss and Giroux, 1978. Whitehouse PJ, George, DR. The myth of Alzheimer’s: what you aren’t being told about today’s most dreaded diagnosis. New York: St Martin’s Press, 2008.
587