The MORAL and SPIRITUAL challenges of early diagnosis of dementia

A Project Synopsis

Perhaps the greatest challenge of geriatrics is to try to separate the effects of aging from those of disease.  Robert Kane, 2005

              Neuroimaging and other advances in diagnostic procedures are making it possible for physicians to inform people that they will in all likelihood develop Alzheimer’s disease even when they have not yet begun to show symptoms of cognitive decline.  Articles about mild cognitive impairment (MCI) and pharmaceutical treatments are proliferating in scientific journals as well as in the popular media.  Some are even touting quick screening tests for mild cognitive impairment with the expectation that these will become as common as blood pressure cuffs in Wal-Marts.  The current excitement about scientific “breakthroughs” in earlier diagnosis take place in a culture which stirs up a profound dread of dementia, dependency, and death.  Pharmaceutical companies market sickness and sell “cures” along with the illusion that drugs and doctors can solve the existential problems of being human.

              After receiving the diagnosis of MCI or early dementia, some people are referred to support groups; others walk out of a doctor’s office with little more than a prescription and a pamphlet urging them to keep mentally active, take their medicines, and talk to their lawyers.   We believe that such messages are demeaning and de-humanizing.  They weaken the hope and inner strength of individuals who retain a capacity  for spiritual growth and  moral responsibility in lives  woven into community.  Most people, however, never hear this alternate message.

              Given projections about the increase in persons with Alzheimer’s and other dementias amongst aging baby-boomers,  and the negative cultural meanings associated with age-related cognitive change, we believe there is an urgent need for scholars to critique the current fervor for earlier diagnosis, which fails to consider the complicated moral and social consequences of its lust to medicalize human experience.  It is equally urgent to provide an alternate framework and educational materials emphasizing that cognitively impaired elders retain their humanity and capacity for growth.  Here are some questions we begin with :

• Is MCI truly a disease, or is it an outcome of aging that many but not all human beings have experienced for millennia, an outcome that in 21st century, technological societies is increasingly viewed as highly maladaptive? 
• Is  MCI is a socially constructed disease, constructed not maliciously, but out of genuine concern that survival in society today requires a brain functioning at peak efficiency?
• If it is true that neuroscientific research has created social attitudes that value the health of the brain and not the wisdom of the mind, what are the implications for a society in which one of out every five people is old?
• How can a person who has been diagnosed with “pre-dementia” feel hopeful in light of the doom that seems to be inevitable?
• What are the possibilities for continued growth and development for persons with dementia?
• What are the responsibilities of people with MCI and dementia to themselves, their families and the wider society?
• How do socially reinforced fears about dementia exacerbate the symptoms of those who bear the diagnosis?
• How can a person continue to feel a sense of life meaning and purpose once he or she has been diagnosed either with MCI or actual dementia?
• How can cultural attitudes about dementia be changed so that individuals who bear this diagnosis continue to be valued and respected, even in the later stages of this progressive disease?

We do not claim that we can begin to answer all these questions, but we do strongly believe they must be addressed.  We are concerned that without shifts in social understandings of dementia, persons with the diagnosis will be increasingly marginalized, even more than they presently are.  In the last 30 years, we have witnessed remarkable progress in changing social attitudes about cancer--once a disease whose name could barely be uttered.  Yet frightening as it is, cancer has never been viewed as robbing people of personhood. 

We have an alternative view of dementia, one that upholds the personhood of people with dementia so boldly articulated in the work of Tom Kitwood and his colleagues.  Moreover, like Kitwood, we believe that personhood is not a quality that inheres solely in the individual, but rather is nurtured and sustained in relationships. 

Our exploration of the spiritual and moral challenges of early diagnosis of dementia will be phenomenological, employing interviews and focus groups with persons labeled as “having” mild cognitive impairment.  We will turn to a diverse collection of research articles, scholarly papers, and books from the medical and neurosciences, social sciences, and humanities.  We will also critically examine advertising and writing in the popular media that reinforces anxiety about dementia and people who have it.  Finally, our investigation of this new diagnostic domain will lead us more broadly  to critique the current distinction between “normal aging” and diseased aging as well as our culture’s flawed dichotomy between the ideal of  “independent living” (us) and the image of dreaded dependency (them).   

This project will take four years to complete.  It will involve consultation and collaboration with neuroscientists, theologians, geriaticians, clergy, nurses, neurologists and others who specialize in dementia. Our work will not stop with research, critique, and the publication of scholarly articles.  It will take place side-by-side the development of various practical materials: 

• A book (including multimedia interactive CD/DVD) addressed directly to people diagnosed with MCI or early Alzheimers;
• 2) Educational programming and workshops for various groups which will including experiential activities that personally explore fears of aging, memory loss, and dementia;
• Educational material, which will grow organically out of scholarly inquiry and the research conducted with focus groups and interviews.  Program materials will also be tailored to and collaboratively developed with the educational needs of different audiences:  individuals and families; health professional students and practitioners; seminary students and clergy; the Alzheimer’s Association; a broad reading/viewing public, etc.   We envision materials such as training manuals and videos, pamphlets for doctors’ offices, curricular modules, a documentary film,  etc…  

Our overall goal, in a nutshell, is to demedicalize and rehumanize the experiences and social perceptions of mild cognitive impairment and early stage dementia.  Demedicalizing does not mean abandoning the search for cures.  Nor does it mean denying or ignoring scientific and medical facts. It means critiquing, contextualizing, and reframing these facts.   Likewise, rehumanizing does not mean romanticizing or avoiding profound physical and emotional damage.  It means strengthening families and individuals to maintain and develop active moral and spiritual identities instead of seeing themselves as passive “victims” of diseases that cannot be cured. Finally, it means changing public and professional perceptions of cognitive impairment (and frailty) in late life.  Human beings are precious, flawed, frail, and mortal.   All frailty is not “curable”.  Our task is to understand and help these elders in the ongoing work of being and becoming more human.  It is at once scientific, medical, social, moral, and spiritual work.

It is our own work too.    

Thomas R. Cole, Ph.D., University of Texas-Houston School of Medicine

              Director, McGovern Center for Health, Humanities and the Human Spirit

              Thomas.cole@uth.tmc.edu; 832-752-2650

Susan McFadden, Ph.D. University of Wisconsin Oshkosh

              Chair, Department of Psychology

              mcfadden@vaxa.cis.uwosh.edu; 920-424-2308