A First-Hand Perspective on Treating Cancer and Dementia
One advantage of aging is the sense of history and the movement of forces. During one’s youth, the tendency is to anticipate new challenges. Medicine’s history is of slow, incremental progress with many pauses, reverses, and explosive accelerations; it can be concurrently daunting, exhilarating, and humbling.
The Medical Battlefield
Siddhartha Mukherjee’s Pulitzer Prize-winning book, The Emperor of All Maladies, reminded me of the slow trek of discovery from Biblical times, through Greek medicine, the Middle Ages, the age of enlightenment, the industrial revolution to the modern era of the medical challenges, the scourges of disease, and the extraordinary saga of recognizing and combatting human illness.1 The approach to cancer has been often framed using military constructs that reflect the individuals’ encounters of life and death and the many skirmishes involving groupings of patients.
During the modern era, the growth of the pharmaceutical industries, the politicization of healthcare, the academic career-building undertakings, and the idea of all-out war against cancer became the new paradigm. The military belief was simple: If enough resources are thrown into the fray, victory will eventually occur.
In the history of cancer, the battlefield has been strewn with the casualties of the war. The few survivors became new weapons, fashioned to attack the enemy. The medical and research communities realigned themselves together; small victories occurred. The past 50 years reveal important victories—sometimes in the form of small achievements—that collectively removed the taboo and mystery out of cancer and allowed those whose lives have become identified with the illness to openly live and cope with their illness.
Measuring Success
As an intern in Aberdeen, Scotland, I treated an 8-year-old who was experiencing late stage acute lymphoblastic leukemia (ALL). In the late 1960s, chemotherapy was still relatively primitive; ALL cases were ultimately fatal. On Christmas Day, my young patient died in my arms, succumbing to an overwhelming infection. The devastation to her family was palpable. Until that moment, I was considering a pediatric specialty but I knew I could not deal with such tragedies on a daily basis. Today, in contrast to the totally dismal statistics in 1966, ALL cases in children ≤10 years is often curable.
Cancer has benefitted and suffered from the extreme efforts and sometimes over-zealous hype over new findings—which often raise hope and then leads to disappointment. There have also been unfortunate instances of fraud as some physicians promote their careers and funding with untold harm to the patients who trusted the professional (and profession) whose reputation was bismirched.2 These unfortunate events, along with conspiracy theories of big pharma, has jaundiced the often heroic efforts of clinicians and researchers and the thousands of patients who have selflessly volunteered to be in clinical trials. Yet, many hundreds of thousands of individuals have benefitted from the historical dedication that has gone into new discoveries. It is a slow-moving process that is unlikely to result in rapid cures or elimination of risk.
In the United States, we can trace continued incremental success in decreasing the cancer burden. From 2006 to 2010, delay-adjusted cancer incidence rates declined slightly (0.6%) in men and were stable in women, while cancer death rates decreased by 1.8% per year in men and by 1.4% per year in women. The combined cancer death rate (deaths per 100,000 population) has been continuously declining for 2 decades, from a peak of 215.1 in 1991 to 171.8 in 2010. In simple terms, this means that 1,340,400 cancer deaths (952,700 among men and 387,700 among women) have been avoided during this time period.3,4
Dementia
Following Mukherjee’s book, I read Margaret Locke’s The Alzheimer Conundrum: Entanglements of Dementia and Aging.5 As a physician embedded in the clinical and academic world of dementia, it added a medical anthropological perspective to the history and social context of dementia. Like Mukherjee’s book, it provides a comprehensive perspective of dementia and all components beyond the usual nomenclature, language, and conceptual frameworks of most clinicians and researchers.
I was reminded of my first encounters with dementia as a medical student in Dundee, Scotland from 1962 until 1967. As Locke mentioned, Alzheimer’s as a disease identifier was rarely used in practice in the 1960s; the term was limited to what was deemed to be a rare occurrence, the presenile dementia, which Dr. Alois Alzheimer first described in 1906.6
At Dundee’s Maryfield Hospital, the geriatric unit resembled old-fashioned Nightingale wards; 40 or so patients were congregated in 1 large room with privacy provided by movable screens used during medical emergencies or at the death of a patient. This shielded the other patients from what was often a personal loss as patients tended to know each other over what was often a protracted stay.
Many medical students enjoyed the geriatric unit partially because older patients tend to have all the physical findings that help enhance physical diagnosis skills. These included heart murmurs, lung crackles, Parkinsonian gaits, cogwheel rigidity, hemiplegic hyperreflexia, and palpable organs of all kind. However, I enjoyed the unbelievable humanity, humor, and social connectivity of the patients to each other and from the staff the best clinical care imaginable. What would now be considered as a serious limitation of privacy, patients would congregate around a potbelly, coal-burning stove in the center of the ward during evenings. There were mugs of tea and baked snacks near the patients, who were knitting, crocheting, and chatting with each other.
Many of these patients were already living with what would now be categorized as dementia. Using the parlance and limited diagnostic criteria of that era, they were often referred to as “a wee bit dotty” in Scottish colloquialism. The term senility merely described being aged with impaired cognition. With no specific treatments available during those years, behavioral issues were addressed through social engagement and in extreme cases, with barbiturates—and later with chlorpromazine.
Geriatric Care
My exposure to geriatrics was at a time when medical treatments were limited and the major professional focus was on caring. Even as medications improved rapidly during the next few decades, my association with geriatrics and dementia was a reflection of those days in Dundee and the dotty auld wifies (older women) communing under the caring gaze of a devoted nursing and medical staff who focused on their general well-being.
Choosing the field of geriatrics as my profession was mostly a matter of happenstance rather than planning. It was an opportunity at a time that I was trying to find a medical subspecialty that was not organ- or process-based; my passion was for generalities and the intrinsic comprehensive humanity of internal medicine. By chance, I was directed to Baycrest, an already well-respected geriatric facility that was closely associated with Toronto’s Mount Sinai Hospital. My responsibility was to address the geriatric patient flow between the 2 organizations and very soon, I realized that the holistic, multidimensional, and multisystem approach was why I loved medicine. And, the exchanging of narratives with my aging patients soon became a secondary passion. In 1981, the Royal College of Physicians recognized geriatrics as a medical subspecialty and with that, my career was launched.
The Future of Dementia
From those early years in Dundee, the issue of dementia has metamorphosed from a loosely defined entity affecting mainly elderly individuals with no formal structural or diagnostic topography into one of the most challenging conditions facing modern societies. The Canadian Alzheimer’s Society’s “The Rising Tide,” outlines the major societal challenges we grapple with when treating an aging population in which the prevalence of dementia is substantial.7 Notwithstanding recent hopeful indicators of some decline in population incidence in the past decade, the requirements for the future care of this aging population will be substantial.8
Over the past 48 years, has anything actually changed substantially? Researchers worldwide have been delving into the morass of dementia. Billions of dollars have been invested into defining dementia as a medical condition separate from old age even though the 2 processes are complexly intertwined.5 The pharmaceutical industry has invested fortunes into therapies based on the ambient evidence of the pathophysiology of dementia.
In terms of current medications, the cholinesterase inhibitors produce a very modest benefit for some of those living with dementia. The various neuroleptic medications allow some individuals to be maintained in preferred social environments despite behavioral problems. Many would propose that one’s living situation, environment, psychosocial supports, and communication methods might successfully decrease some extreme behavioral challenges.
For example, the use of personalized music has been shown to have an awakening as well as calming effect on those living with dementia and experiencing behavioral challenges.9
As I look back at Maryfield Hospital, would any of those auld wifies be better off in 2014? Current medications may have helped a few of them in their social and communication abilities, and marginally in their cognitive sharpness. All the scans that they may have received are unlikely to significantly have changed the course of their illness. Were there some misdiagnosed with being dotty that, with a modern clinical work-up, would have fallen into another clinical category for which some intervention would have been useful? This seems unlikely as we explore all the efforts that go into identifying reversible causes of dementia; all the countless scans and blood tests do little to change the course of disease for the vast majority of those frequenting memory clinics for specific diagnoses.10 Even some of the time-honored routine tests used to rule out reversible causes of mild cognitive impairment, such as occult hypothyroidism, have been shown to offer little benefit.11
What elderly, cognitive-compromised people have lost in the modern construct of dementia are communal living arrangements based on caring as opposed to the modernized clinical intervention model where symptoms are treated medically instead of through touch, speech, and perhaps, more music. It is unlikely that there will be wards of patients sitting around potbellied stoves today. Experimental models in the Netherlands raise questions about future community-based plans, while the researchers and clinicians delve into definitive cures and reconfigure diagnostic labels.12,13 Maybe this Dutch iteration is just the modern face of Maryfield Hospital’s geriatric unit: more complex, more sophisticated, more robust—but the focus is on recognition of the humanity for those living with dementia.
Michael Gordon, MD, MSc, FRCPC, is a geriatrician at Baycrest Health Science System, medical program director of the palliative care program, cohead of the clinical ethics program, and professor of medicine at the University of Toronto, Canada.
References:
1. Mukherjee S. The Emperor of All Maladies: A Biography of Cancer. New York, NY: Scribner; 2011.
2. Maugh II TH, Mestel R. Key breast cancer study was a fraud. Los Angeles Times. 2001 Apr 27. http://articles.latimes.com/2001/apr/27/news/mn-56336. Accessed June 2014.
3. Siege R, Ma J, Zou Z, Jemal A. Cancer statistic 2014. CA Cancer J Clin. 2014;64(1): 9-29.
4. Henly SJ, Richards T, Underwoor JM, et al. Lung cancer incidence trends among men and women—United States, 2005–2009. MMWR. 2014;63(1):1-5.
5. Lock M. The Alzheimer Conundrum: Entanglements of Dementia and Aging. Princeton, NJ: Princeton University Press; 2013.
6. National Institute of Aging. Alzheimer's disease fact sheet. www.nia.nih.gov/alzheimers/publication/alzheimers-disease-fact-sheet. Updated Jan 2014. Accessed March 2014.
7. Alzheimer Society of Canada. The rising tide. 2014 Apr 23. http://www.alzheimer.ca/en/Get-involved/Raise-your-voice/Rising-Tide. Accessed June 2014.
8. Kolata G. Dementia rate is found to drop sharply, as forecast. New York Times. Jul 16, 2013. www.nytimes.com/2013/07/17/health/study-finds-dip-in-dementia-rates.html. Accessed June 2014.
9. Alzheimer Society of Toronto. Music & memory: iPod project.www.alzheimertoronto.org/ipod.html. Accessed June 2014.
10. Clarfield AM. The decreasing prevalence of reversible dementias: an updated meta-analysis. Arch Intern Med. 2003;163(18):2219-2229.
11. Parsaik AK, Singh B, Roberts RO, et al. Hypothyroidism and risk of mild cognitive impairment in elderly persons: a population-based study. JAMA Neurol. 2014;71(2):201-207.
12. World's Untold Stories: Dementia village. CNN. www.youtube.com/watch?v=LwiOBlyWpko. July 30, 2013.
13. Tinker B. “Dementia village” inspires new care. CNN. 2013 Dec 27. www.cnn.com/2013/07/11/world/europe/wus-holland-dementia-village. Accessed June 2014.