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Thomas R. Verny is a clinical psychiatrist, academic, award-winning author, poet and public speaker. He is the author of eight books, including the global bestseller The Secret Life of the Unborn Child and The Embodied Mind: Understanding the Mysteries of Cellular Memory, Consciousness and Our Bodies.
In my two previous columns, I dealt with the nature of Alzheimer’s disease, ways of reaching a diagnosis and measures we can take to build resilience to developing it. Today, I will explore the current treatments for Alzheimer’s and the challenges and rewards for family, friends and professionals who take care of people suffering with Alzheimer’s.
Today, there are only two drugs to treat people with Alzheimer’s disease. They are donanemab (approved in Canada this year) and lecanemab (approved last year), and both are monoclonal antibody agents.
Unlike older drugs, which only addressed symptoms, the new options target and remove beta-amyloid, thought to be the principal culprit of cognitive impairment, from the brain. While they don’t offer a cure, they slow down cognitive decline.
In a large clinical trial, donanemab reduced the risk of progression to the next stage of illness by nearly 40 per cent, while also slowing the erosion of daily functioning over 18 months. [1]
Health Canada approves second drug targeting underlying cause of Alzheimer’s disease
Sharon Cohen, medical director of the Toronto Memory Program and one of the researchers who worked on the lecanemab clinical trials, has been an enthusiastic supporter of these drugs. She has opined that they will help people remain in the earlier, milder stages of the disease longer, living independently and doing what matters to them. “This is enormous,” she said. [2]
In February, an expert committee of Canada’s Drug Agency questioned whether lecanemab provided clinically meaningful benefits. The committee also flagged concerns about the number of MRI scans required to monitor for rare but serious side effects, namely swelling and microbleeds in the brain. They will likely raise the same objections to donanemab.
Considering these caveats and the price tags these medicines come with, $47,250 and $30,000, respectively, a year, it is not surprising that currently neither drug is covered by publicly funded health plans.
Expert care
To learn what programs and resources the Alzheimer Society of Huron County (where I live) offer, I called Cathy Ritsema, the executive director. I learned that each year the society serves nearly 2,000 people in the region. Most are family members and friends providing care to someone living with dementia; others are individuals navigating the disease themselves. The organization helps people find their way through what is often a confusing and emotionally demanding trek. [3]
The work of the society has changed considerably over the past three decades, Cathy said. What was once primarily an organization focused on supporting caregivers has evolved into one that increasingly serves people living with dementia.
Many people with mild or moderate dementia continue to live in their own homes, supported by spouses, adult children, friends and neighbours. They attend day programs offered by long-term care facilities in this area. When needs become more complex these facilities provide dedicated Alzheimer’s and dementia support through specialized on-site residential units.
The next person I spoke to was Audra Young, a DementiAbility educator and in-home specialist who consults at Spruce Lodge in Stratford, Ont., and other residences. Audra brings more than 20 years of experience in long-term care to her work. She spends much of her time helping staff see the person behind the diagnosis, encouraging practices that protect dignity, foster autonomy and sustain quality of life.
The goal is not simply to provide care but to preserve a sense of self in the face of a disease that so often threatens to erode it. For Audra, dementia care rests on the premise that memory loss does not eliminate the need for emotional connection. [4]
At Spruce Lodge, that philosophy has reshaped the admission process. Families are invited to share stories, routines, preferences, cherished memories, lifelong occupations and the seemingly insignificant details that often matter the most to the person. These conversations become the foundation of a personalized approach to each resident.
This humanistic attitude is not without challenges. Like in any organization, staff follow established routines and habits. New ideas are not always greeted enthusiastically. Audra understands this.
She teaches by example and when the care providers witness positive results their attitudes change. A resident who becomes calmer, more engaged or visibly more comfortable and, let’s face it, easier to deal with can do more to persuade a skeptical colleague than any workshop or policy manual.
Building resilience against Alzheimer’s disease
It was time to see for myself how these fine theoretical concepts played out on the ground. So, on a sunny May morning I met Julie Bree, associate director of allied services at Spruce Lodge. [5]
Her main job, she explained, is enhancing residents’ quality of life, which includes managing activity co-ordinators, therapeutic recreation, volunteer services and spiritual care. Like Audra and many other stalwarts of the good fight, she has worked at Spruce Lodge for the past 20 years.
Spruce Lodge is home to 128 residents, a number that hints at its scale but not its demand. At the time of my visit, 349 people were on the waiting list.
The facility includes two secure units somewhat euphemistically called “cottages,” designed for residents with advanced memory impairment. Each cottage houses 18 residents. The emphasis here is on creating an environment where people who may become disoriented, wander or leave without recognizing the risks can move about safely and with a measure of independence. The doors can only be opened by entering a code and no one has wandered off the unit in a very long time.
Cottage residents who for some reason need to be transferred to Spruce Lodge’s main facility have an Elpas system bracelet attached to their wrists which will trigger an alarm should they exit it by the main entrance.
Around-the-clock nursing staff and personal support workers aid with dressing and meals and the countless small tasks that help residents remain comfortable and secure. Residents are encouraged to participate in a variety of therapeutic, social and recreational activities intended to stimulate the mind, maintain abilities for as long as possible, and reduce the anxiety and agitation that so often accompany dementia.
Many features of the facility reflect its values such as the height-adjustable tables in the dining room or the photographs beside the residents’ doors, usually two pictures of the person, one from their youth or prime of life, the other a recent one.
As Julie showed me around the unit, pointing out the various homelike features, addressing every person we met by name, I asked her how she managed to work in this environment for 20 years. She said she loved her work. The most rewarding moments for her are seeing someone who was anxious, withdrawn or distressed begin to relax and reconnect with the world around them.
As I said goodbye, I thought how lucky these residents are to have such able and dedicated staff.
Loving care
When someone close to you begins to show signs of dementia, it’s time to have “the talk.” These conversations can be difficult and uncomfortable (not the tepid “challenging”). Be prepared for opposition to all your proposals and angry, hurtful accusations.
No one wants to see a doctor who may diagnose them as cognitively impaired, which could lead to the loss of their driver’s licence – their pass to independence – and, in the long run, to having to abandon their comfortable, cherished home for a room, sometimes to be shared with a stranger, in an institutional facility that is often perceived as a prison.
Decoding Alzheimer’s disease
The Alzheimer Society of Canada (ASC) [6] and the Alzheimer’s Association (AA) [7] in the U.S., as well as regional organizations, offer a wealth of information for people wanting to know more about Alzheimer’s and for relatives and friends who are looking for ways to help their loved ones.
For example, the ASC has a downloadable long-term care home checklist that comes in handy for a person concerned about entering early-stage Alzheimer’s or a spouse or friend wanting to research and visit long-term care homes in their area. As you do so, consider your options carefully and methodically, but do not neglect your gut reactions. Trust your instincts.
As a caregiver of a loved one, you will need to have a frank talk with the person you are supporting about legal matters such as key end‑of‑life decisions, a will and power of attorney. Actually, there are two types of power-of-attorney documents: one for personal care and one for property, which includes finances. Again, the website of the ASC has reliable and accessible information on these subjects.
For caregivers, navigating health care systems, coping with the emotions of the people they are trying to care for and managing their own emotional responses can be exhausting.
Yet in meeting these demands, caregivers discover unexpected strengths within themselves such as patience and the ability to advocate persuasively, if not for themselves, at least for another. This is not to romanticize hardship but to acknowledge that difficulty, when successfully engaged with, can be a source of growth.
First Person: Alzheimer’s means my mom falls in love with her favourite movie stars all over again
Another, subtler reward lies in perspective. Proximity to illness, aging or disability can alter one’s sense of what really is important in life. Concerns that previously loomed large in the caregiver’s mind may recede. In their place emerges a sharper appreciation for mundane moments: a shared meal, a brief smile, a day without pain.
Caregiving, in this sense, can recalibrate one’s priorities, drawing attention to the essentials of the human experience. Tending another life enriches our own.
Researching this subject made me think of Still Alice, an American film based on the eponymous novel by neuroscientist Lisa Genova that follows Alice Howland, a 50-year-old Harvard linguistics professor whose life unravels after a diagnosis of early-onset Alzheimer’s disease.
The novel traces her cognitive decline, the loss of her professional identity and the strain the disease puts on her family relationships. It reminds us that the disease is not the person. They are still your father, grandmother or dear friend or, if you are a professional caregiver, they are, besides being your patient, still someone’s father, grandmother or dear friend.
Final thoughts
I am happy to report that the professionals I met who are dedicated to the care of dementia and Alzheimer’s patients were grounded in the belief that every person, regardless of age or cognitive ability, deserves to be seen, known and valued.
In an era when public discourse often dwells on division, conflict and self-interest, it is truly heartening to encounter individuals whose lives are devoted to easing the afflictions of others.
References
- Sims, J. R., Zimmer, J. A., Mintun, M. A., . . . & Skovronsky, D. M. (2023). Donanemab in early symptomatic Alzheimer disease: The TRAILBLAZER-ALZ randomized clinical trial. JAMA, 330(6), 512–527.
- https://www.neurologylive.com/view/assessing-lecanemab-effect-in-early-alzheimer-disease-sharon-cohen
- Alzheimer Society Huron Perth, alzheimer.ca/huronperth/en
- Dementiability, dementiability.com/
- Spruce Lodge, sprucelodge.on.ca/
- Alzheimer Society of Canada, alzheimer.ca/en
- Alzheimer’s Association www.alz.org/