Michael Gordon's blog

It is clear to anyone who has lived with and cared for someone experiencing dementia or looking after a group of such individuals in a long-term care facility, that the issues of memory and recall are not the ones that play havoc with the individual and their caregivers, but the behavioural challenges. Not everyone with an illness causing dementia develops behavioural issues, often called BPSD (Behavioural and Psychiatric Symptoms of Dementia) but for those in whom this occurs, it might have a critical impact on the life they lead, the care they receive and the potential exposure to treatments that potentially might negatively impact their function, quality of life, place of residence or according to some studies life expectancy.

Studies done in the United States over the past decades and in parallel in Canada have been critical of the apparent ease and frequency with which residents of long term care experiencing BPSD are exposed to classes of medications called neuroleptics, which more recently have been subdivided in the older typical and the newer atypical neuroleptics or antipsychotics. It is always important to remember that these classes of medications were initially developed to address psychotic experiences and behaviours of those experiencing schizoaffective disorders in which delusions and hallucinations may be paralyzing to the individual and their introduction into care during the past decades, in series with the typicals preceding the atypicals; it has allowed the virtual emptying of the previous chronic psychiatric hospitals and has allowed many individuals living with such illnesses to manage in community dwellings with many normal aspects of life including educational and work experiences and abilities. In parallel, for many previously fractured families who have been able to re-incorporate family members with unmanageable and disruptive psychotic symptoms back into a family structure.

Almost as an after-thought, the use of these medications in older individuals who were experiencing symptoms similar to those of younger people with clear mental health, schizophrenic-type syndromes. These individuals were found to benefit from these medications in terms of the BPSD which often had some of the similar characteristics, at least on the surface of delusions and hallucinations which often affected their ability to live in community settings at sometimes forced those in some congregate community dwellings to be discharged because of what was interpreted as disruptive behaviour. With the apparent increased exposure to such medications, many of the products obtained negative reputations as did the long-term care facilities that seemed to use them excessively. With some initial studies it appeared that first the atypical medications appeared to be associated with excessive mortality profiles, mostly due to cardiologic disorders and then on closer scrutiny the typicals appeared to have the same negative side-effect profile. (http://www.nejm.org/doi/full/10.1056/NEJMoa052827)

This has resulted in policies in both the United States (Federal Nursing Home Reform Act (OBRA'87) Law & Legal Definition- http://content.healthaffairs.org/content/20/6/128.full) and in Canada to decrease the use of such medications in long-term care facilities, with either very complex administrative procedures to be able to use the medications in the first place and fairly substantial bureaucratic steps to continue their use. There are mechanisms in Canada whereby the volume of such medications used are scrutinized and the governmental administrative bodies that monitor such use may criticize or even penalize the organization where excessive use is deemed to be occurring.

It was therefore quite an eye-opener to read the article, "The Long-term Effects of Conventional and Atypical Antipsychotics in Patients with Probable Alzheimer's disease" published in American Journal of Psychiatry September 2013 (http://www.ncbi.nlm.nih.gov/pubmed/23896958). In the article the authors followed a cohort of 957 patients with dementia to time of nursing home admission or to death. Of the cohort about 25% were provided with either a typical or atypical antipsychotic. After adjusting for all the variables, it was concluded that it was not the medications that was responsible of increased nursing home admission or apparent increase incidence of death, but rather the underlying degree of psychosis and agitation experienced by these patients. If this is the case, it might result in a change in the way we address individuals with these symptoms.

No one, based on this study would re-introduce antipsychotics in an excessive cavalier fashion, but on the other hand the excessive fear held by physicians and families might be quelled somewhat with a proper balance of indications, dosing and the attempts at withdrawal after defined periods so that those who might truly benefit from these medications will receive them as required rather than using alternatives which may have their own inherent dangers and contra-indications. There are studies that demonstrate some potential benefit for some residents of long-term care for whom withdrawal is possible. (http://www.ncbi.nlm.nih.gov/pubmed/23543555).

There are pros and cons of the new digital world. On the one hand for physicians the transmission of important medical information, especially about advances in medicine and concerns about well-established or novel treatments assists all of us in the world of health care to be as “up-to-date” as possible. Anyone in the field recognizes that there is an apparent constant Rocky Mountain avalanche or Hurricane Sandy flood of new information coming from endless sources ranging from the most respected- evidenced-based medical journals to free-wheeling, shoot-from-the-hip internet news sites that churn out information so quickly that there is often little time to attempt to verify the sources of the information and when it catches on the distribution is faster than a speeding bullet through the so-called “going-viral” process.

In reality, true, meaningful and reliable progress in medicine is usually slow and incremental; eventually there is what seems at times to be the slow tortoise-paced movement in positive and meaningful directions. Physicians and consumers of health care information (doctors call them “patients”) are routinely subjected to claims of “breakthroughs”, “major steps forward” and “almost miraculous” advances for one confounding medical condition or another. It is often claimed thatsomeone, which may mean the corporate pharmaceutical industry, the conservative “self-serving” medical profession and politicians who are “in the pay of” one of these mega-wealthy interest groups, that are repressing these breakthrough advances because of a threat to their financial interests or their “monopoly” on the health care industry. The current penchant for conspiracy theories promotes the suspicion held by many members of the public that if there is something missing in their health care, it is due to lack of useful information being purposely withheld or squelched by "vested interests."

When it comes to the categories of serious and often life altering or life-threatening illnesses, there is often an attraction to those for whom either intentionally or unintentionally misleading the public can be a major issue and for some can lead to devastating results. As a physician whose professional and academic interests have covered Alzheimer’s disease and other causes of dementia, end-of-life and palliative care and medical ethics, it is not hard to come across an array of individuals and situations in which it is hard to not consider the concept of mythology if not more accurately charlatanism. With all of such situations it is often the marketing of the product or procedure that becomes the goal of those for whom the potential for vast financial gain becomes a major issue—this can ultimately lead to at best misjudgement or excessive good intentions or naivety and at worst actual fraud.

A few examples to illustrate the history of mythology and marketing in medicine with a focus on aging and dementia and "incurable" illnesses is worth considering. Recently the son of one of my patients whose is living with fairly advanced dementia of the mixed-Alzheimer’s-vascular type wanted to know about my opinion of the use of coconut in its treatment. I admitted that I had not heard of that but he had his internet print out in his hand and right then and there  we logged on to the report including the YouTube depiction of the wife of the patient whose clinical condition of dementia was vastly improved by the eating of grated coconut and then the “medical”: commentaries that followed.  I could understand why a family member of someone with as serious condition as dementia would be mesmerized and hopeful that such a discovery would be beneficial for his suffering mother.  I did a further in depth review of the available literature which mainly referred back to the initial YouTube presentation. All the credible commentators agreed that although interesting there were no proper evidence-based studies that had been done to verify this one in essence case-report. A robust review of the claim and the medical supporting evidence can be found on the website snopes.

Another very popular “natural” purportedly natural preventative treatment for dementia that has been very popular for many years is Ginkgo Biloba, on which according to a 2009 Consumer Reports (CR) wrote that Americans spent in 2007 about $107 million according to the Nutrition Business Journal. They're probably hoping to enhance memory and increase mental focus, claims often made for Ginkgo.

According to the article in CR; “the results of a major trial published in a 2008 issue of the Journal of the American Medical Association suggest that taking Ginkgo Biloba to prevent cognitive impairment or dementia is probably a waste of money. Researchers followed more than 3,000 people age 75 or older for roughly six years—the largest Ginkgo-dementia trial ever. “The supplement did not decrease incidents of Alzheimer's disease or other dementias in people with normal cognition or in those with mild cognitive impairment. Bottom line : Ginkgo Biloba supplements can cost about $200 a year. Save your money. An accompanying editorial stated: "users of this extract should not expect it to be helpful. And while the supplement is widely considered to be safe, there is some concern about an increased risk of bruising, bleeding, and potential drug interactions . If you intend to take the supplement, discuss it with your doctor first.” The same negative results were reported in a more recent article : Ginkgo Biloba no better than placebo in preventing dementia published in the December 2012 edition ofMenopause International.

One only has to wander around any pharmacy’s health supplements section or shopping mall’s health and nutrition outlet or to one of the “big box” stores like COSTCO® and you will see bottle after bottle of nutritional brain enhancing supplement being bought by the truckload. As physicians I think we have a duty to inform our patients that there is no evidence for any benefit of these products rather than take a very common posture which is, “if it can’t hurt, what’s the difference?”

Money saved on useless and heavily marketed supplements can be used for more beneficial purposes, even if to support a worthy charitable cause.

This article was originally published online at www.clinicalgeriatrics.com.

The Clinical Scenario
It was one of those unusual clinics where I saw three similar cases in which the exact same issue surfaced and I was able to demonstrate in “real time” to residents in training with me in the care of the elderly. The first of the encounters was with a couple accompanied by two family members; the couple lived at home with some personal care help and each had some degree of cognitive impairment but not enough to completely interfere with reasonably safe functioning when under some supervision. I was interviewing and examining one member of the couple and my resident was doing the same to the other.

Denial or Hearing Impairment: A common scenario
As I embarked on my interview with the patient it became clear that as noted in previous visits, he was quite hard of hearing. According to the son who was with him, his father refused to wear his hearing aids because “they bothered him” and he often stated that he had, “no problem with hearing”. Each time I spoke to him, he leaned into me to hear my question or answer and turning to the son to repeat the question.  With his wife the resident also noted in addition to some degree of cognitive impairment a significant degree of hearing impairment.

Low cost, effective hearing enhancement: very dramatic at times
I retrieved my Pocket Talker® which I keep in the office for such cases. I put the simple earphones first on him and gradually turned the volume and suddenly his face lit up as I asked if he could hear me and he said, “very well”. We practiced a bit with the device until it was clear that he could engage in a three way conversation with his son and me.  The resident was now ready to review the wife’s issues with me and the son entered the room with us as did his father. They had already learned from me that during the discussion, while I asked questions they were to sit quietly despite a desire to “help with answers” unless I asked them specifically to comment on something said to me by the patient. The resident had reiterated the story to me of mild dementia he mentioned and emphasized that she was quite hard of hearing; she had refused hearing aids although the family was planning on acquiring them. I retrieved the Pocket Talker® that I had just used with her husband, put on the head phones and as I increased the volume, like her husband her face lit up when she heard my questions and I looked at the son and husband and said to them, “maybe you can get a deal if you get two of these”.

A hearing augmentation “Hat trick”
Later in the clinic, a different resident saw another patient. This resident had not been apprised of the experience that I and my other resident had with the couple. She recounted a history of progressive cognitive decline and also mentioned an issue with hearing that the accompanying daughter raised. Like the previous couple the daughter said her mother absolutely refused to go for a hearing assessment and said that she did not want “hearing aids” as she “did not need them” and they were in any event “a waste of money”.  I carried out the same manoeuvre that I had used with the previous couple. Although less dramatic than the previous cases, the way she responded to my repeated questions clearly indicated that she could hear better with the device.  In this particular case,  I was not convinced yet that some of the apparent cognitive impairment may have been perceived as such due to her hearing impairment or at least aggravated by it.  I explained to the daughter when I said I was not yet sure of the degree of cognitive impairment, “if you can’t hear it, you can’t remember it”.

Don’t overlook Hearing as part of the Cognitive Assessment
In these three situations during one clinic session the young residents who in their careers would see many elderly people with cognitive impairment or dementia, the message of the importance in hearing was clearly demonstrated.  It can be hard to convince older people to utilize hearing aids or pay for them. For many a simple and inexpensive Pocket Talker® may be a device that can be used  as an introduction to the benefits of hearing enhancement or may on its own solve the hearing deficiency problem for the purpose of social communication.

                 

Most health care professionals involved in eldercare have had the experience that some of those we look after seem to be able to recall past experiences with a degree of intensity that may be very disquieting and may even lead to what gets interpreted as agitated behaviour. These same individuals may have had the personal experience as I have from my own life experience, some memories; even those very distant, when recalled are almost as vivid as when they first occurred. Depending on the nature of the recalled experience, the impact can be calming, soothing and satisfying or very disturbing. On a personal level, when I wrote some of my life stories, which ultimately became my memoir, Brooklyn Beginnings: A Geriatrician's Odyssey, many of the experiences I recounted were so vivid that I could almost hear the voices, smell the smells and taste the flavours that accompanied the experience.

In my primarily ambulatory geriatric medical practice, which focuses heavily on patients with some degree of cognitive impairment and dementia, memories that do get recounted from the distant past sometimes appear to the person to be almost occurring in the present. Family members often remark that the person cannot recall what they had for breakfast but recall in vivid detail the Atlantic crossing from Europe in 1905. My grandmother who helped raised me often told me the story of Cossacks raiding her small Lithuanian village at the turn of the 19th century and killing and maiming many of her friends and neighbours as she and her family huddled in the potato cellar. The story was so vivid to her and almost transferred like a copy of a movie that I have been able to recall it as one would watch an old movie.

Many of my patients are Holocaust survivors. They are often plagued with distant horrific memories that are so vivid when recounted or when they intrude into consciousness that they become agitated, fearful and panicked. They actually believe they are reliving the painful associations with that previous part of their life, which they may have spent many years trying to forget. One of my patients who had been incarcerated in a concentration camp in Poland would recount to his wife in total terror and remorse how he managed to avoid being taken out of the morning roll call on a freezing morning to be shot, but the man, in fact a friend, standing next to him was taken and murdered instead. He kept repeating to his wife, "they took him instead of me, they should have taken me, they should have taken me." His wife said that no matter what she said to him he would not get out of that frame of mind which he told with terror on his face over and over again until he was quite exhausted. Even the use of various medications, eventually resulting in small doses of atypical neuroleptics did not eliminate the experience even though it modified the intensity of his very emotional outbursts. The response to SSRIs and beta-blockers both of which were tried was not impressive. http://www.nature.com/drugdisc/news/articles/436448a.html

With this conscious awareness of how some people, seem to have the propensity to relive certain experiences with great vividness, I was enthralled to see a report in the Journal of Cognitive Neurosciences describing a study using complex FMRI imaging techniques that may help to explain the neurophysiology of vivid memory recall. From this study, undertaken at the Rotman Research Centre of Baycrest with Dr. Bradley Buchsbaum as the primary investigator that it appears the brain keeps in its memory the pathways of different experiences (http://www.sciencedaily.com/releases/2012/07/120723134745.htm). These, when accessed, can repeat the circuitry of the original experience so that the memory is as if that sequence of events is taking place as vividly as in "real time." If this is shown on further studies to be the mechanism for vivid memories, it potentially opens up new ways to treat or prevent vivid memories of terrifying experiences and perhaps even play a role in addressing the mental experience of post-traumatic stress disorder. This observation opens up many avenues for future research and perhaps interventions that may prove therapeutic beyond the current typical cognitive and other combinations of therapies. (http://www.helpguide.org/mental/post_traumatic_stress_disorder_symptoms_treatment.htm).

Derived from article in Canadian Jewish News February 28, 2013.

I returned from a medical conference overseas. As I entered the living room, I could see the small walnut side table my wife emailed me about while I was away. It was placed in front of the gas fireplace, next to my favourite "relax" chair and was the perfect colour and size to fit there, waiting for a cup of coffee, a portable phone and the controller for the small stereo next to it. I marvelled at the shape and fine workmanship reflecting that even after less than one term in a College course in industrial woodworking my son Eytan, whose primary love is playing the electric guitar with his heavy metal music band, was able to do such lovely work. His taking a college course in woodworking was part of his desire to have some other skills beyond music for the future and working with wood has always been attractive to him. Three months later at the end of his second term as a gift he made two small tables for our sun room out of extraordinary Walnut with Olive Ash Burl (Figure 1).

Figure 1. Walnut with Olive Ash Burl Tables

The quality was very impressive but most important when I asked him how he did it he was able to go through all the steps with hand drawings to illustrate. Clearly for him the wood, the design and the hands-on experience were very meaningful.
Of the many reasons I was so delighted with his handiwork was the associations I had with woodworking. I attended New York's unique Brooklyn Technical High School because during my early teenage years I wanted to be an engineer like my late father. I loved building and fixing things and had ability in math and physics, therefore, it seemed a natural career path. "Tech" as the school was called by the students was a fantastic educational experience. Beyond a vigorous general curriculum we averaged an extra two hours a day of technical skills and processes which ranged from working with the various metals and wood. I recall vividly my woodworking teacher who was demonstrating how to use a chisel properly. It was from him I learned that a sharp tool is much safer than a dull one as you do not have to apply as much pressure which can lead to poor tool control. I recall how after he chiselled a piece of wood and before it was actually sanded he let us all feel the surface and said something which then would have been considered a bit risqué, "see, smooth as a baby's aaaarm", at which we all sniggered, knowing what "a" word he really meant.

I changed career plans at the end of high school and decided on medicine which was the perfect choice for me. I have however always maintained my love and respect for working with wood. When I did my military service in Israel I had access to a large "hobby shop" which had all the woodworking machines and tools I learned to use at "Tech". With ample supplies of rough wood from the crates in which new General Electric airplane engines were shipped to replace original French engines in reconfigured old French fighter planes I was able to build kitchen shelving and cabinets and furniture for our future Jerusalem apartment.

I once saw a house for sale in which the husband as part of his retirement project renovated it using hand turned and carved and stained wood wherever there was an opportunity to do so. The project according to his wife, kept him sane, healthy and active for the fifteen years since his retirement. His experiences with woodworking are echoed by many patients who have pursued "hobbies" or "pastimes" from their younger years and use them as a focus of their creativity to give meaning and passion to their post-retirement years.

There is a body of evidence and knowledge that supports the concept that working with wood can be a very meaningful activity for those living with dementia, especially if their past experience included working with wood as part of their employment life or one of their hobbies. There is often an exaggerated concern that using the tools necessary to work with wood might be potentially dangerous for those living with dementia depending on their degree of residual capability. It is known that skills from the past are often preserved even as the degree of cognitive impairment progresses. Choosing what types of tools or machines might no longer be within the realm of safety would be a prerequisite for designing woodworking programs of seniors living with dementia. An example of one such program describes the program of "Easy Woodworking for seniors with Dementia". In it is described the parameters for success, "Though long-term care residents with dementia may have short-term memory impairment, wooden craft kits are a good way to provide sensory stimulation and creative outlet without requiring a high degree of skill or even memory. From picture frame kits to wind chimes, bird feeders to Christmas ornaments, these wooden crafts can be painted and assembled in one or two sessions with the help of volunteers or even grandchildren who participate in the fun." (http://www.ehow.com/info_8508900_easy-woodworking-projects-elderly.html)

In an academic study on "Tailored Activities Program (TAP) it was determined that if the correct steps are taken to assess and implement activities according to the individual person's cognitive and physical abilities and past history of interests many activities (including woodworking) can be designed that will provide the individual with a meaningful and satisfying activity while at the same time decreasing care-giver burden and decrease the level of neuropsychiatric behavours. In their article published in the 2008 American Journal of Psychiatry "Tailored Activities to Manage Neuropsychiatric Behaviors in Persons with Dementia and Reduce Caregiver Burden: A Randomized Pilot Study" the authors, Laura N. Gitlin LN, Laraine Winter L, Janice Burke J, et al., concluded the following: "In summary, this study provides compelling evidence that a tailored approach that taps residual abilities and previous roles and habits improves life quality in dementia patients. This study identifies a process for customizing activities to abilities and training families in use of activities in daily care. Teaching caregivers activity use has added value by reducing their objective burden and enhancing skills. Given that pilot studies tend to yield large effect sizes, and that the control group did not evince benefit in all areas as the experimental group after treatment receipt, it is important to test TAP on a larger scale, validate it with diverse dyads, and examine the underlying physiological mechanisms by which symptom reduction occurs."http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2803044/

Conclusion
What does the finding that woodworking, whether started in one's early years or not, can be employed to promote a sense of well-being and creativity and accomplishment in individuals living with dementia mean for those designing programs for those in need of long-term care or those attending day programs in the community? Is woodworking unique among a range of creative activities that require the use of manual dexterity, multi-tasking and a degree of problem solving or is it like other similar activities in the realm of arts and crafts. Does the challenge of creating an adequate space with the necessary tools and proper supervision required for woodworking to occur preclude most facilities or community programs for offering such activities to those inclined to take it on? It would seem that considering the potential and real benefits from woodworking as part of the spectrum of creative activities it should be part of the agenda for recreational coordinators or planners to consider when developing programs for those living with dementia.

From my own experience and from what I am observing from the reaction to woodworking in my son, wood resonates for many because of its historical associations in one's life as well as for its marvellous textures and smells. Whether it is painting, ceramics, knitting, quilting, photography or woodworking, the satisfaction of working with one's hands and brain is wonderful for the mind and the soul.

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

When just getting started with woodworking, it can be challenging to know where to start or find a project that is actually suitable for beginners. That's why I spent time researching, pulling together, and creating a go-to guide focused on 50 simple DIY woodworking projects that are perfect for new woodworkers: 50 Small, Simple, & Easy Beginner Woodworking Projects

Originally published in December 2012 on the Baycrest.org

A National Post story (Nov. 8) reported that New Brunswick was the latest province to move in the direction of offering patients more choices about end-of life-care, beyond the standard “do or do not resuscitate” policies.

Fast on the heels of this article was a story in The New York Times (NYT) on Nov. 24 about end-of-life care. The NYT reported that when advance care planning is done well “there is good evidence that…it can greatly increase the likelihood that patients will get the care they really want. And, as a secondary benefit, their choices may help reduce the cost of health care as well.”

What I found surprising about the National Post article was that one would think after reading it that offering dying patients more choices in their end-of-life care was a novel idea. As the NYT article pointed out, the history of so-called advance care planning dates back several decades. Canada has played a strong role historically in the development of the idea of the “living will” – a document used for the process of stating one`s wishes and values for end-of-life care, which can be expressed verbally or in writing. In Ontario it is supported legislatively through the province`s Health Care Consent Act.

The NYT story states, “Many people sign living wills that specify the care they want as death nears and powers of attorney that authorize relatives or trusted surrogates to make decisions if they become incapacitated”. As part of a nation-wide American project, Physician Orders for Life Sustaining Treatment have been created to ensure that a patient’s wishes are followed and not misplaced or too vague for family members to be sure what a comatose patient would want. According to the NYT article: “With these physician orders, the doctor, or in some states a nurse practitioner or physician assistant, leads conversations with patients, family members and surrogates to determine whether a patient with advanced illness wants aggressive life-sustaining treatment, a limited intervention or simply palliative or hospice care.”

With the shift toward giving patients more choices about their end-of-life care beyond do or do not resuscitate, we need to be careful of the real risk of developing a quick and cheap fix – that is, relying on a simple form in which people select from a menu of categories of choices for their final phase of care. This process has been shown by many in the field of ethics and end-of-life care to be too minimalist to capture the nuances and emotional complexities of expressing end-of-life wishes. Many would say the important part of the process is not a “form” that is filled out, but a robust conversation with those that you depend on to respect your values and wishes and interpret the potential treatments offered when the time comes to agree to or reject a treatment.

Pre-planning one’s future is never easy and can lead to unexpected and unwanted consequences if not done with careful thought and planning. The importance of the National Post and NYT stories is that they support the importance of having the conversation with close family members or those you might expect or appoint formally to carry out your wishes when you are no longer able to do so. This personal responsibility must be supported by public policy initiatives that promote education and training of those who ultimately will be responsible for assisting individuals and their families in tackling this challenge.

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

It was a replay of a common interaction. I was telling my daughter some story from my past to make one point or another and she responded with, “I know, I know, you have told me that before.” At that moment I realized what a common occurrence this sort of interaction was and explained to my daughter, “Even if you have heard the story before remember that it is important to listen again because first of all I may not remember that I told you the story before and more importantly the telling of the story may have as much meaning and significance for me as it might have for you.”

As I thought about the issue I realized how often in my geriatric medicine practice one of the salient complaints by families is how often their loved one tells them the same thing over and over again, and they use that symptom as do we in practice as geriatric health care providers, as possible evidence of cognitive decline and the inability to recall what was said previously. I am beginning to believe that this symptom, although very common, and often indicative of a decline of cognitive function is also a manifestation of a very common human propensity to focus on the narrative of one’s life and to recall and recount that narrative as part of one’s process of self-identity and validation. The question is; what is the separation between the normal and very common attribute of story-telling and the narrative of one’s life, and the pathology of cognitive impairment that interferes almost completely with the awareness that a story or occurrence has been recently recounted to a loved one?^1,2

What most of us understand at some level is that the telling of stories is a very important part of our existence. Some do it more than others, but in normal relationships and conversations we spend much of our efforts recounting events of our life and experience to others. And the propensity to be repetitive is quite universal as anyone in a long-standing relationship will admit. In fact, if one were to track the topics of conversation between spouses and family members over a period of time I predict that one would find the same topics in one form or another repeated. This includes the common topics related to work, especially when there are conflicts or important decisions to be made or about important family members that includes children or parents depending on one’s age. I would suspect that if there were a prohibition on the repetition of topics to be discussed between partners and other family members there would be very little to be discussed.

A very common point of evidence to this phenomenon is the discussion of newsworthy items and political views. Any member of a couple usually knows pretty well the political views of the other partner. When in a social setting the topic comes up they often patiently listen to their partner express their views to presumably a new audience (although this to the chagrin of some friends or family members is not always the case) without interrupting the narrative with statements such as “we have heard your views before—if you do not have a new one just stop talking”. That would be considered extremely rude and likely the basis of the disruption of a social or personal relationship.

The question and challenge for those facing the extremes of repetition in a loved one who is developing or already has evidence of dementia is what to do? Those in such situations usually learn very quickly to avoid conflict that interrupting the recounting of an event already recounted with a “you told me already or I know” usually results in some element of conflict with a denial that the conversation in fact has taken place. Also, in the context of normal aging, family members may find that the propensity to retell and recall one’s life narrative occurs more and more frequently. This is partially because it is one of the ways all of us validate our lives which is important as the past becomes increasingly important compared to the likely options for the future. It is because of this human need to tell our narratives that there is such an interest by many in writing autobiographies and memoirs and an interest in readers in learning about other people’s lives, some because they are “famous” and others because they are deemed to be interesting or unusual and at other times because the reader finds the particular narrative congruent with their own life experience. The recognition that another’s life story in some way intersected, overlapped or was in parallel to one’s own is a very powerful way of validating one’s own life and confirming its relevance and importance.

A special dimension to repeating stories and recalling the narrative is when those stories are associated with great suffering and pain. Those of us that deal with Holocaust survivors, or those who have lived through other atrocities as have occurred in many parts of the world in the last century may be plagued by the content of those stories and the retelling may be associated with great emotional reactions. This can be very disconcerting to a family member especially as each retelling of the story becomes in essence a re-living of that particular horrific episode in that person’s life.³

The best recommendation that I can make about this inevitable process of repetition of a loved one’s “stories” is to find ways to be patient with them and accept that even though you have heard the story before, actually acknowledging it and expressing an interest in it is helpful and even therapeutic to both of you.

1. Bursack, CB. What to Do When a Parent Repeats the Same Things Over and Over? Aging Care.com, http://www.agingcare.com/Articles/elders-repeating-the-same-story-146023.htm
2. Mild Cognitive Impairment (MCI); What do we do now?, Prepared by the Center for Gerontology, Blacksburg, VA October, 2006; http://www.gerontology.vt.edu/docs/Gerontology_MCI_final.pdf
3. Gordon M. Dementia and the Holocaust: What to do with those memories? January 29, 2012, HealthPlexus.Net: /blog/dementia-and-holocaust-what-do-those-memories

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

I am reading the biography of a well-known author. Like other biographies, one of the wonderful aspects of such writing is appreciating those people who have had a profound influence on the life of the person whose biography is being read. We all know about the usual influences from family members, teachers, friends, colleagues and sometimes people whose influence was one of those haphazard accidents of circumstance and nature. Sometimes it might be a book or lecture, movie, poem or piece of music that has had such an impact on a person’s life that they attribute who they are, in least in part of that particular person or event.

I can identify a small number of people, events or books that had such a profound influence on my life and I sometimes wonder what would have happened had those influences not occurred. Of course I had a number of teachers in primary and secondary school that were inspirational and supportive of my inquisitive nature as well as some who were quite suppressive of my interests that were somehow outside the formal structure of the school system. One example of a suppressive spirit was an English teacher I had in junior high school who after reviewing the books proposed for in-depth book reports as a special project literally “forbad” me from reading Thomas Wolfe’s classic Look Homeward Angel which I had in fact already read, but because of her dictum was not able to use it for the book report—her motivation was her self-internalized Catholic beliefs and the negative view of such a book by the Catholic Church—such a prohibition would not be acceptable currently, but at that time had a profound influence on me as she told me the book was “evil” when I had found it inspiring—both components of the event influenced my views of the Church which had not been particularly positive as a young Jewish boy knowledgeable of the history of the Church in Jewish history, the events of the Inquisition, and most recently the Holocaust. Wolfe remained one of my favourite authors throughout the rest of my developmental years. The official Catholic prohibition against the reading of certain books was reversed by an official Papal decree published on the 15 June 1966.

The negative influence of certain teachers, books and events which often had the opposite effect of the intended or expected was more than balanced by those individuals, books and events that helped nurture those aspects of my personality and value systems that ultimately were instrumental in my ultimate choice of profession and my deeply ingrained value systems which were incorporated into my personality inclinations.

It was in my first year at Brooklyn College, that I entered in 1958 after graduating from the exceptional Brooklyn Technical High School which set the stage for my life-long interest in science, engineering and the desire and ability to “fix things” a character trait supported by my father’s engineering profession and his personal capabilities as a perpetual “fixer” of all things that had a mechanical source of function. The two first year college teachers were quite different, but their influence was similarly profound. I had entered college as a pre-medical student which was a decisive change in my original post-high school goal that was to apply for a degree in engineering, in the footsteps of my father. This decision was changed by a book I read during my last year of high school which profoundly changed my educational directive and in essence the course of my adult life.

I do not recall the reason I chose to read The Citadel by A.J. Cronin. I was an avid reader, but why this particular book caught my attention is no longer part of my recollective capacity. It may very well have been one of those events that “just happened”, the book was there and it looked interesting. The result was dramatic. I suddenly thought about studying medicine rather than engineering which had been my direction. Soon after I read the book I visited a dear friend, a girl about whom I had romantic fantasies, but who looked to me as a close friend which in the absence of the alternative coming to pass I cherished. I mentioned to her my musings about medicine and she said with great certainty and passion, “You would make a much better doctor that engineer—do it”. I left her house and within about 10 minutes I pondered her statement as I arrived home where I informed my parents about my decision (which during that 10 minute walk had been finally determined). I could see that my father was pleased, but he was not a very verbally expressive person. My mother said, “Oh it is such a long time of study”, but I got the sense that she was pleased as well. At this point there were no doctors in my extended family although other than my mother all of my immediate elders despite coming from immigrant uneducated parents had finished at least undergraduate university degrees. So this would be a new venture for my extended family that ultimately produced a number of physicians—including a very close first cousin and a number of second cousins.

The decision on my part to study in Scotland was the result of spending six months traveling around Europe during my junior year at Brooklyn College, an undertaking stimulated by one of my first professors in social sciences in my first year required course. Edgar Z. Friedenberg, who beyond mesmerizing me in his classes and stimulating me to want to travel, engaged me on my return from my sojourn through Europe that eventually completely changed the direction of my life and studies, as a research assistant for one of his seminal books, the Vanishing Adolescent published a year after I left for medical school. He had such a profound influence on my thinking and the range of my intellectual interests that I felt honoured that he kept in touch with me, even arranging a couple of trips with him to overseas destinations while I was studying medicine in Dundee Scotland. He left the United States and immigrated to Canada to teach at Dalhousie University. His move to Canada mirrored a similar move I made in 1968 also for the same reason—in opposition to the Vietnam War, not as a pacifist, but because I felt the war was a terrible mistake of United States policy.

In medical school in Dundee had a number of mentors that influenced my views of medicine and my approach to the concepts of the “story” of medicine and during my post-graduate years my views of the relationship between the humanities and medicine. The renowned Sir Ian Hill, our professor of medicine taught the art of the lecture that enchants, elevates and deeply engrosses an audience into the mysteries, meanderings and miracles of medicine. His description of the famous Zermatt typhoid fever outbreak of 1963, the year after I started medical school, will never be forgotten and still acts as a model for me for the wonders of the sleuthing required of public health challenges. It was Professor William Walker, our head of Midwifery (Obstetrics and Gynecology in North American parlance) who during my final oral examination asked me why I had a Scottish family name that allowed me to weave my family’s genealogy tale to the point of using up all of my time short of one quick obstetrical question and that resulted in the 500 pound prize. That windfall ultimately financed my trip to Israel that resulted in my connecting to the country in a way that had an impact on my life as almost nothing else has in my adult years.

It was another William Walker who went from the Department of Medicine in Dundee to Aberdeen who I followed there for my first house job (internship) who had the profound influence on my appreciation that one could combine a love for the humanities and medicine. While in Dundee he gave a series of after-hours lectures on “Humanism” which had a profound effect on my world view, already having been primed by my previous exposure during undergraduate education and range of reading. I was so impressed with him that in the culture and practice of post-graduate training in Scotland in those days I deliberately requested on a personal basis that he take me on in the department he was to head in Aberdeen, which he did, and that turned out to be one of the best clinical experiences of my career.

It was the five months following my Aberdeen house job that had the most profound effect on the trajectory of my life. With the 500 pound prize that followed my midwifery examination, I received permission to use it to fund a second “house job” in midwifery in Haifa Israel, a place I had visited as a medical student two years previously. It was during that student visit that I had an epiphany in terms of my identity. Although I was raised in a Jewish family, mostly of secular Jewish persuasion other than my paternal grandparents, I had not a particular interest in that identity other than from the strong historical and cultural ties that I felt. I had a strong sense of the importance of the Holocaust on the history of my people, but Israel itself held no particular powerful attraction to me as it did for many other people with my background. However, in response to many questions from family members why I did not visit Israel while already being on the “other side” of the Atlantic I decided to combine one of my summer medical training experiences to include Greece for a month with a follow-up month in Israel which was “just across the Mediterranean.”

I had arranged to work at the Rambam Hospital in Haifa, named after the great ancient Jewish medical scholar and sage also known by his more complete name (Moses ben-Maimon, or more commonly Maimonides).

The profound experience I had occured on the second day after settling into my small prefabricated hut that acted as housing for interns, residents and visiting students like me. I went to the beach that was adjacent to the hospital which sat on the Mediterranean shore and as I looked around at the throngs of people, many with small children, somewhat reminiscent of my exposure to Brighton Beach where I was raised, I had a sudden wave of recognition. I thought to myself, even though these people were strangers, “these are my people”, every single one of them. When I went on the local service bus the next day I had the same revelation. I kept looking at the different faces, clearly from different parts of the world, light skinned like myself, Slavic looking women with high cheek bones, but fair eyes, dark skinned men with almost black eyes, all speaking what I knew must be Hebrew despite my limited exposure to that language during my upbringing other than what I learned mostly by rote for my Bar Mitzvah. I kept thinking, “I share a history with all of these people”.

I started working the next day and met the head of the department among other members of the staff. Professor Aharon Peretz welcomed me warmly, asked about my heritage and established that he and my grandparents came from Lithuania which I could see meant a lot to him. He asked me what I wanted to learn and when I said “anything and everything” he said I could shadow him in all his clinics as well as other members of staff and if I wanted to assist him in the operating room that too would be fine. I could not believe my good fortune as being in the operating room at that point in my studies was still an exciting option which I did not have that much access to at medical school. I did not realize that the interns on the service would be more than happy to have someone else stand during surgeries and hold retractors which for me was still very exciting as the professor explained everything that he was doing and pointed out all the anatomic landmarks that I had seen only on my anatomy cadaver.

I learned a lot during that month and was given a great deal of latitude in what I could do. I observed Professor Peretz interview patients with various gynecological problems who had been holocaust survivors and were applying for reparations. I noted that whatever the condition which he was very good at explaining to the patient in Hebrew or Yiddish or Russian or it seemed whatever language was necessary, he then explained to me and then signed the necessary reparations form which I learned went to an adjudication committee in Germany which decided on the merits of the claim. When I naively asked if all the conditions were Holocaust related, he paused for a moment, looked at me deeply, drew in a breath and said in perfect English, “As far as I am concerned, every gynecologic problem that afflicts these women either directly came from the holocaust experience or was exacerbated or complicated by that experience. I could see from the look on his face that he felt this was a mission of his to make some sort of amends for what these women had experienced during their years as prisoners, refugees, people in hiding or just experiencing the cold, hunger and monumental trauma and grief related to those dark years of their lives. I only found out later that he was one of the key witnesses during the Eichmann trial in Israel in 1961-62. During a recent visit to a special exhibit at Yad Vashem (the Holocaust Museum) in Jerusalem I saw a picture of him bearing witness at the Eichmann trial, and seeing him there brought back a flood of memories of my time with him in Haifa.

When I left to return to Scotland, I recall the great sense of a new chapter of my life opening up that I did not realize was there. On my return to Dundee I had not formulated a definite plan of return, but knew that in one way or another I would be back to the country I had discovered resonated in my inner-most consciousness. After I received the prize in midwifery and confirmed with my professor that I could use the 500 pounds for a repeat visit to Israel to do in essence part of my internship in obstetrics and gynecology, my plan began to solidify. I would do my first 6 months of post-graduate training as a house-officer under the supervision of Dr. Walker the internist-humanist who had moved to Aberdeen where he agreed to take me on, and then I would return to Israel, a visit I looked to with great anticipation.

Dr. Walker in Aberdeen had a profound effect on my approach to medicine, but also to all the people with whom he came into contact. It was from his modeling and style that I realized the importance of acknowledging and asking the opinion of nurses with whom we were doing rounds, a practice that I integrated into my style of practice after witnessing its positive impact on the staff during that six month period. He deferred at times to the opinion of the head nurse and always sought the input and opinions of the house officers with whom he did rounds, sometimes writing in the chart that a certain idea or suggestion came from one of us—something I had never witnessed before from a staff physician. He could be critical in a very instructive way, but when he praised me for something I did he gave me such a lift and that too became part of my practice-style when I entered into the role of a medical teacher and mentor.

As I came closer to my career choice I had the various influences of rotations, specialties and probably most important the mentors in my life. As it turned out when I ended up settling in Toronto, rather than pursuing a career in nuclear medicine which I had come for, but soon found that the lack of patient contact made it not particularly attractive for me. It was then the influence of two wonderful physicians in Toronto that pointed me in the direction of geriatrics: the first was Dr. Abe Rapoport, an internist and kidney specialist that I had met and gave a lift to in Jerusalem just prior to my move to Toronto, ostensibly to learn nuclear medicine and bring it back to Israel where it had not yet been developed in any substantive way. While driving him back from Hadassah Hospital where he had given a seminar that I attended to the centre of Jerusalem I mentioned that I was going to spend a couple of years in Toronto. He said, “If I can help you when you are there, please feel free to contact me.”

After a number of months doing nuclear medicine it became clear to me that it was not a specialty suited to my medical interests and personality, I did seek out the advice of Dr. Rapoport. After I told him about myself he suggested I look into Geriatrics and contact the people at Baycrest while at the same time pursuing a chief residency position that I became aware or at Mt. Sinai Hospital. When he mentioned geriatrics as something that might satisfy my desire to continue in a broad based specialty in internal medicine and not focus on just one organ system or realm of diseases (such a specialty in infectious disease might provide) I conjured up recollections of the wonderful geriatric unit in Dundee where among other things the staff physicians were among the best in the medical school and the patients were delightful—often referred to with endearment as auld wifies.

I followed up with a visit to Baycrest and when I was offered the position of chief resident at Mt. Sinai Hospital with which Baycrest was affiliated I requested of my second wonderful mentor, Dr. Barney Berris, the head of the department with whom I would be working if I could do the Baycrest consultations who were at Mt. Sinai while I was working for him. He agreed and besides being a mentor in terms of gentleness, clinical brilliance, and warmth he helped me formulate my career in geriatrics which when I passed my Royal College examinations that fall, resulted in him and another mentor, Dr. Henry Himel, the chief of medicine at Baycrest offering me a conjoint position which I accepted—thus determining my career path.

For many years my roles and path of academic development moved in a very satisfying direction with areas of great satisfaction in many domains especially in teaching and writing. I had always had an interest in writing, but with my academic roles the opportunities grew and I was able to undertake initially academic articles and then in 1981 my first book was published, Old Enough to Feel Better: A Medical Guide for Seniors. With it a new aspect of my career was launched that of author and over the years since that time a number of other books in addition to articles for the professional and lay press where the objects of my writing interests, all of which reflected my experiences in medicine and the care of the elderly.

As the various challenges of geriatric medicine began to coalesce in my practice I became increasing interested in the ethical aspects of eldercare which resulted in my completing a masters in ethics which was soon followed by an interest and the incorporation into my clinical and administrative practice palliative and end-life care—with all these threads of these special interests intersecting in a very meaningful way.

This eventually resulted in the focus of my clinical care, ethical deliberations, writings and teaching to become increasingly focused on dementia, especially the later stages where special aspects of care and caring come into play and where ethical conundrums become very common. The culmination of these influences has been my most recent book, Late Stage Dementia: Combining Compassion, Comfort and Care. The result has been a dramatic shift in my approach to my clinical ambulatory practice and focus on my teaching of trainees who accompany me in the clinic and my role helping those in our palliative care unit understand the special challenges of caring for those with non-malignant disease especially those with dementia, an increasing challenge in the long-term care system.

I have been very fortunate along the path of my career to have had many teachers and mentors who have inspired, guided and influenced me on the path that finally became my own and now gives me the opportunity to do the same for my students and medical trainees. It goes back to one of the tenets of the teaching of medicine, that one has the duty to learn and then the duty to teach so that the continuity of the wonderful art and science of medicine is assured for the future.

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