I can usually anticipate where the conversation is going when a family member accompanying a loved one living with dementia to my clinic starts the conversations with the words, “Surely, in this world of modern medicine, there is something more we can do to halt the decline in my (fill in whichever family member is effected). Sometimes this phrase is said with a degree of anger, sometimes with anguish and sometimes with a degree of aggressiveness as if somehow I, a geriatrician, and not a neurologist or psychiatrist might be inept in my knowledge or “holding back” on some new discovery that I do not know about. Sometimes the question is accompanied by a package of internet-based articles on “new or novel” treatments for dementia ranging from megavitamins of the already known and touted category (and generally proven ineffective in the evidence-based medical literature) or a concoction with a mysterious ingredient that “doctors won’t talk about” as they work in cahoots with the pharmaceutical industry.
Usually, even though often quite time consuming, a careful explanation of the state of the knowledge of treatment of dementia of the various kinds (the most commonly defined being Alzheimer’s disease), the person can be brought back to the reality of the current state of affairs. Most times they can be brought to focus on the real challenges that will be faced as the course of their loved one’s condition declines and they must face the very difficult decisions that will ultimately occur including planning for challenging behaviours well beyond the cognitive decline and the inevitable need to plan for end of life care that almost always occurs at some point in those who reach the later stages of dementia.
I recently saw the movie, The Iron Lady that looks at the developmental and political life of former Prime Mister of the United Kingdom, Margaret Thatcher, from the vantage point of her experiencing the earlier and then later stages of dementia. It vividly portrays the impact the disease has not only on her behaviour, memory that includes a very poignant and vivid melange of past recollections and current experiences. This is something all of us working the field recognize in our patients and which we must often explain to their family members. One often hears the lament, “She can remember in great detail her sea voyage as she escaped the ravages of the war in Europe or her childhood run-in with her brother in the village in the Ukraine, but cannot remember what she had for breakfast today”.
Sometimes the intrusion of experiences from the past can cause great agitation and behavioural outbursts and sometimes can lead to warm and sometimes tearful recollections about loved ones that they think are still alive and are distraught to find that they have died. This is something illustrated in The Iron Lady when Thatcher’s daughter has to remind her mother of her late husband’s death as she struggles with emptying his clothes from the closet and donating his previous belongings that she can associate with in her memories of him that enter and leave her consciousness as she struggles to recall the events of the present.
The movie with the stunning role of Thatcher played by the incomparable Meryl Streep stirred a sense I have had previously as I observed some of the greatest or best known minds or public figures in the world afflicted by the usually devastating effects of one form of dementia or another, most often of the apparently Alzheimer type. This has helped me explain to the family members of my own patients that “surely me” with their scepticism that either medical science can be so limited or I can be possibly “out of date” in my knowledge of contemporary advances in the disease. It becomes evident to them that some of the most famous and wealthiest people in the world when afflicted with this condition, suffered in the same way as their loved one, despite presumably having access to the greatest medical experts available in the field.
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