In my own lifetime I remember the gradual decline of the late President Ronald Reagan who those of us in the field suspected he was beginning to develop symptoms of the disease as in his public appearances he seemed to rely more and more on the side whispers of his wife Nancy, the first lady, in a way reminiscent of what occurs in our office visits of many of our patients who when asked a relatively straight-forward question quizzically turn to their loved one, often unconsciously for the answer or to support the answer that they bring forth. We often use that common manoeuvre by our patient as a pretty sound clinical indicator of problems with cognition even though it can be quite subtle and the spouse (most often or sometimes it can be a child) may not even be aware of their response to support the ability of their loved one to function cognitively, although when asked directly they usually acknowledge that occurrence as part of their communication interaction.
Of interest is the family conflict over when the late President demonstrated some impairment of his previously sharp mind and wit and facility with words. The difference of opinion expressed and documented by his two sons has led to differences of opinion among them and has become an historical talking point- the question being– when did the 40th president begin to become mentally impaired by the disease? He was formally diagnosed with Alzheimer's in 1994, five years after he left office. Reagan died 10 years later at 93. His two sons differ in their opinions on when the symptoms first began but the controversy is not unlike that which all of us that practice geriatric medicine and deal with dementia see in our own practices as family members differ as to when a loved one first manifested some evidence of loss of cognitive function. With the variability in the course of the disease which for some starts with what is often called mild cognitive impairment which in many but not all gradually evolves into obvious dementia which itself can have a variable course depending on its own trajectory or one modified by the use of so-called cognitive enhancing medications, it is not surprising that in retrospect it might be hard to define definitely when the symptoms of Alzheimer’s dementia were clear in someone with such a public profile as the late President.
The film The Iron Lady reminded me a bit of a previous film in which the main character was a famous author, Iris Murdoch. In the film, Iris, the progressive decline of this gifted writer into the depths of deepening dementia is witnessed by her husband, played as it were by the same actor that played Margaret Thatcher’s husband, Jim Broadbent—a gifted and talented man who may have learned a great deal about the condition now that he has played a role in essence similar stories, both replete with movement from the present to the past. Both films capture important aspects of dementia and the powerful impact of such a disease on the person of such intellect and talent.
In my own personal associations with dementia two of the great mentors of my medical career developed dementia in the latter years of their life—despite lives and careers of great accomplishment and intellectual challenge and productivity. One physician was instrumental in my choosing geriatrics as a career, almost inadvertently and the other in arranging for my early association with Baycrest Centre which became the focus of my clinical and academic career.
Lastly, my own father who had a profound influence on every aspect of my personality, emotional, and intellectual development and character traits suffered from dementia in the last part of his life providing me with the opportunity to experience as a loving son and sibling of my most devoted sister who was the “it” in his care as he lived out his last years in a Chicago vicinity retirement home under her watchful eye aided by a most devoted personal care worker. It is through his life’s last experience that I get much of my fervor about the importance of “having the conversation” about the wishes and life’s values with those we love who are living with dementia so that when the time comes for difficult decisions at the end of life to be made, we, the loving family members who are the substitute-decision makers will have the strength and courage and devotion to their expressed wishes or value systems to act to promote compassion, comfort and caring at the end of the struggle with dementia.
For those of us who must respond to those family members who interject the “surely, there must be more that can be done for my (father, mother, aunt etc.) in this world of modern medicine, we who carry the responsibility of providing the best of available medical care, can draw on our collective personal and professional experience to provide an acceptable response to the questioner. To be able to recount the lives of the rich and famous and talented to confirm the limits of modern medicine allows us to demonstrate that even they have had to live with dementia in the same way in essence as the loved one in question. We doctors, along with their family member will care for to the best of our abilities and within the confines of contemporary medical practice, those that are living with dementia throughout the course of the disease as they enter the last stages of their life.
Dr. Michael Gordon is currently medical program director of Palliative Care at Baycrest, co-director of their ethics program and a professor of Medicine at the University of Toronto. He is a prolific writer with his latest book Late-Stage Dementia: Promoting Comfort, Compassion, and Care and previous two books being Moments that Matter: Cases in Ethical Eldercare followed shortly on his memoir: Brooklyn Beginnings-A Geriatrician’s Odyssey. For more information log on to www.drmichaelgordon.com