Medicine From The Trenches

Experiences from undergradute, graduate school, medical school, residency and beyond.

Seeing Purple! International Alzheimer Disease Month and World Alzheimer Disease Day (September 21)

Alzheimer Disease (AD) is the leading cause of dementia in older adults at this point.  With no cure, no specific cause identified and little available to slow the progress of this disease of progressive cognitive degeneration/impairment, it is very likely that no matter what specialty in medicine one chooses, AD patients will be in your patient cohort. Since AD patients can present at any course in the development of their impairment, it is imperative that all physicians (and health care workers) be aware of AD presenting signs (memory impairment, behavioral symptoms and psychological symptoms)  and most importantly, not to marginalize these patients. Loss of memory, judgement and other cognitive functions do not mean that the AD patient is lost by any stretch of the imagination.

My Mum suffers from AD, residing now in a memory-care unit; casting myself and my sisters into the role of distant caregivers. While the course of her disease has slowed somewhat in the past couple of years, at first, it was disheartening for her children to watch an independent, vibrant, high-functioning woman who managed a 90-acre horse farm, become dependent on others for her care. When she became unable to walk to her mailbox and wander along the back roads of our farm, we knew that keeping her at home was no longer an option even with 24-hour caregivers.

Along the way, we have discovered that my Mum has much of her wittiness; can always tell my sisters and me apart over the telephone and has produced many sculptures (always was artistic) that line her room at her residence. Her spirited nature has resulted in a couple of “run-ins” with other residents but she is well-cared for albeit not in her home as she had wished.As a physician, I no longer look at what my Mum has “lost” in terms of cognition but what she gives to us.

What I have learned from Mum is priceless in terms of keeping our relationship. She still critiques my style of dress, surprising since I have been dressing myself independently since age 4 or 5 years. “Are you going to go out in that,” she will admonish and it’s precious to me now. She will hold my small white chihuahua for hours stroking and chatting softly, something she didn’t do very often before AD. She pushes my sisters to be more patient with their respective spouses. In short, while my Mum has lost her short-term memory and some of her profound cognitive abilities, she has gained a patience that she didn’t display very often.

Along the way in my role as caregiver to my Mum, I have learned to appreciate what other caregivers undergo. As a surgeon who treats a population of patients who have been severely injured (burns, trauma and chronic wounds), I have placed more focus on caregivers as well as their loved one. There is increased emphasis, on my part, in making sure that caregivers see the relationships that still remain rather than focus on what may be lost. In most cases, a richness of interaction can remain and develop if one is able to adjust and adapt to a new reality for interaction with their loved one; something that health care practitioners can appreciate in not “writing these patients off” as lost.

Cathie Borrie, a gifted author (“The Long Hello: Memory, My Mother and Me”- Simon and Schuster.ca) in a Question and Answer presentation with the British Columbia Alzheimer Society illustrates the richness of relationship here: British Columbia Alzheimer Society . Ms Borrie who is a nurse, attorney and holder of a Master of Public Health has written a delightful book of caring for her mother with AD and the  wonder of wisdom from her Mum who was deeply into the progression of AD. Even more profound is that as one reads this Q & A session, one comes to see how much caregivers can receive from their loved ones and no how much is lost.  I have given this book to many of my patients’ caregivers even while they waited  in the waiting room of our burn unit. Ms. Borrie’s book will be available in the USA on April 5, 2016. This is a great book for anyone anticipating practicing medicine as it gives much insight into the rich relationships that anyone with dementia is capable of maintaining.  The Long Hello: Memories, My Mother and Me

Additionally, Daniel Potts MD, has written extensively on his relationship with his father who suffered from AD. Dr. Potts is a neurologist, gifted poet/writer, speaker and educator/scientist who has been an award-winning advocate for caregivers of patients with AD. His blog Maria Shriver-Igniting Architects of Change contains many stories and much wisdom learned from watching his father, Lester Potts, produce countless amazing watercolor paintings while suffering profoundly from Alzheimer Disease. Dr. Potts has been a shining example of what all physicians, especially this one,  should aspire to in terms of seeing the dignity in the most vulnerable of patients.

As you go through this month and this day, seeing purple around your neighborhoods and communities, be sure to give a donation, lend a hand and most of all, if you are a practitioner, look at your patients with AD in terms of where they are and not what they have lost. We have seen the success of the “Ice Bucket Challenge” in terms of increased awareness and funding for Amyotrophic Lateral Sclerosis (ALS) but as health care professionals, we are far more likely to encounter patients with Alzheimer Disease than ALS. A 2011 article “Nature Review Neurology -Reitz C” estimated the global burden of Alzheimer Disease to upwards of  24 million and double every 20 years to 2040. This is a tremendous number of patients who will have a significant number of caregivers.  Let’s support caregivers, research and most importantly the patients who suffer from Alzheimer Disease with our passion to be good physicians and our dollars.

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21 September, 2015 - Posted by | medical school

3 Comments »

  1. Dr. NJB,

    Thank you for your thoughtful post on Alzheimer’s disease. Per the American Alzheimer’s Association, many patients aren’t being told their diagnosis (unlike a “cancer disclosure rate of 90 %”). This is surprising considering it is the 6th leading cause of death in the United States. There’s an elaborate mechanism with its initiation (short term memory in the hippocampus) to the slow progression affecting the region of the brain that controls breathing. It’s difficult for families and patients to endure. As a surgeon, you can appreciate what’s happening to your Mum and have tried to cope with its devastating effects as best you can. No matter where one falls on the professional healthcare ladder, it’s great to know the science, but when it’s a loved one, it is especially heart-wrenching.

    Dr. NJB, thank you for your emotional introspection and for raising the awareness of Alzheimer’s disease.

    Comment by Kenel | 26 September, 2015 | Reply

    • To Kenel:
      Thank you for your kind comment! Please have a look at the link to the writings of Daniel Potts MD. He is a true innovator and master in terms of Alzheimer Disease. I am honored to know him and his great work. (Link is in my post). We have so much to do in terms of taking care of our AD patients and their caregivers. Thank you again.

      Comment by drnjbmd | 26 September, 2015 | Reply

  2. Very informative post. Thank you!

    Comment by Malaika | 21 September, 2015 | Reply


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