dementia

Ways to defy dementia

Dr. Allison Sekuler of Toronto’s Baycrest Centre for Aging and Brain Health Innovation. (photo from baycrest.org)

On June 5, National Council of Jewish Women Canada (NCJWC) welcomed Dr. Allison Sekuler of Toronto’s Baycrest Centre for Aging and Brain Health Innovation as the featured speaker in the Zoom webinar titled Defy Dementia: Learn How to Reduce Your Dementia Risk.

photo - Dr. Allison Sekuler of Toronto’s Baycrest Centre for Aging and Brain Health Innovation — Dr. Allison Sekuler of Toronto’s Baycrest Centre for Aging and Brain Health Innovation. (photo from baycrest.org)

Sekuler is the Sandra A. Rotman Chair of Cognitive Neuroscience at Baycrest’s research institute and the president and chief scientist at the Baycrest Academy for Research and Education. She is known for her foundational research in perception, cognition and brain function, as well as her clinical and translational work on age-related sensory and cognitive decline. She is the inaugural Canada Research Chair on Cognitive Neuroscience and has received numerous national and international honours, including being named one of Canada’s Top 100 Most Powerful Women by the Women’s Executive Network in 2019.

The recent webinar began with an introduction from Monica Simon, chair of NCJWC’s ageism committee. Then, with the help of AI-generated images, Sekuler presented attendees with an optimistic view of what she hopes the future holds. “We want to see a world where every single person is living a life of purpose, fulfilment and dignity,” she said.

Baycrest is at the forefront of a new field called predictive neuroscience for precision aging – an individualized approach that examines one’s brain, body and environment to detect the best ways to prevent the onset of dementia or delay it for as long as possible. This approach not only encompasses the pre-diagnosis stage, but helps medical professionals and loved ones navigate caring for someone with dementia.

“If you think about what precision medicine has done for cancer, that’s what we want to do for aging, brain health and dementia,” said Sekuler.

Through innovations in predictive neuroscience, the Baycrest team is working toward a goal of no new cases of preventable dementia being diagnosed by the year 2050 – currently, 750,000 Canadians are living with dementia, and that figure is expected to more than double by 2050.

“What we want to do is nip that in the bud as much as possible,” Sekuler said, acknowledging that, while they cannot entirely eradicate the condition, they can do more to decrease the risk for those who do not already have dementia. Research suggests that, if the onset of dementia can be delayed by even five years, the prevalence of the condition can be decreased by 50% worldwide, she said.

While there are several risk factors – such as age, sex and genetics – that cannot be controlled, Baycrest’s Defy Dementia program raises awareness of the lifestyle changes people can make to reduce their dementia risk and improve their cognitive health.

“At least 40% of the risk factors for dementia are things that we can change by changing our lifestyle,” said Sekuler.

On the podcast Defy Dementia, co-hosts Sekuler and Jay Ingram, one of Canada’s leading science journalists, cover a different risk factor every month. Each episode features a guest with lived experience with dementia and an expert on the risk factor under discussion, such as stress, sleep, diet, exercise and environment.

There are currently 12 episodes available on the website defydementia.org, or any streaming platform. Many episodes have accompanying infographics and minute-long videos summarizing the topic at-hand, also available on defydementia.org.

“Whether you like to listen to things, read things, watch things or look at things, we’ve got you covered,” Sekuler said.

Sekuler gave a high-level overview of the risk factors, sharing how each correlates to one’s dementia risk and what one can do to manage them. She reminded attendees that genetics are not the be-all and end-all, but, rather, a piece of the puzzle that can often be counteracted by managing the risk factors.

Regarding sensory loss, Sekuler explained how strains on one’s hearing and/or vision can negatively impact cognitive abilities. She pointed to tools such as Baycrest’s free online hearing test and the importance of regular check-ups for hearing and vision loss. Further, she explained that loneliness has been proven to increase dementia risk by 50%, and that social engagement in any form is key to maintaining cognitive health. She emphasized that a healthy balance of diet, exercise and sleep helps, as does lowering stress as much as possible and embracing opportunities to try new activities and learn new things.

Sekuler also turned the group’s attention towards the vital role of caregiver. She shared that “one in every two people” will assume this role, if they do not get dementia themselves. However, caregivers often sacrifice a healthy diet, proper sleep and social engagement, she said, making them six times more likely to develop the condition. Sekuler stressed that “a caretaker cannot take care of someone else if they are not taking care of themselves,” and that inviting more professionals, caregivers and loved ones into the equation lessens the burden on one individual and may be a saving grace for that person’s health.

During the question-and-answer period, which was moderated by NCJWC’s Rochelle Garfinkel, Sekuler was asked what organizations like NCJWC can do to fight dementia. She highlighted the importance of sharing information and resources widely, and encouraged involvement in dementia research wherever possible. As well, she said, promoting tools like Baycrest’s online cognitive assessment test to “get your baseline” – as one would do with a regular vision test – is crucial for early detection.

According to Sekuler, when it comes to protecting your cognitive health, “everyone can make these changes. You don’t have to be perfect, but you do have to start somewhere.”

Alisa Bressler is a graduate of Queen’s University in Kingston, Ont. She is an avid reader and writer and will be pursuing a master’s of journalism at Boston University in the fall. Bressler is a member of the Vancouver Jewish community, and was the inaugural Baila Lazarus Jewish Journalism Intern.

Days pass quickly at Paul’s

Nita and Michael Levy run Vancouver’s Paul’s Club. (photo from Paul’s Club)

It’s a Thursday morning in downtown Vancouver and a group of spirited, educated and friendly individuals gather for a morning coffee and pastry. They discuss world events, their likes, dislikes, and more. Lost in conversation, they find connection in the face of a shared obstacle: early-onset dementia. Welcome to Paul’s Club, a Vancouver-based adult day program for individuals living with this condition.

Founded in 2012 by Nita and Michael Levy, Paul’s Club is a grassroots social and recreational program where “everyone’s diagnosis is left at the door,” said Nita Levy, who is a retired registered nurse. She and her husband were inspired by the experience of her brother-in-law, Paul, who battled early-onset Alzheimer’s disease at the age of 62. Fortunately, his family discovered a program in England that catered to the needs of someone like Paul, who was physically capable and full of life. That program also made an enormous difference for Paul’s wife, Ann. “We saw Paul’s experience through the eyes of my sister,” said Levy, noting that freedom and normalcy were welcomed back into her life thanks to the relief provided by the program.

Upon retirement, the Levys were aware that, although quality adult-day programs exist in Vancouver, there were no options for people like Paul. The couple appreciated that people living with early-onset dementia often share Paul’s liveliness and would benefit from human connection in a social environment free from their regular obstacles. From its early days, Paul’s Club has aimed to “help us all stay socially and physically engaged, but, most of all, to have fun,” said Levy.

Paul’s Club is in the Hampton Inn & Suites by Hilton, on Robson Street, a location free from any associations of ill health. Inviting features such as large windows, comfortable couches and palm trees create a welcoming physical space for members. The club operates three days a week, from Tuesday to Thursday, between 10 a.m. and 4 p.m. Members can choose to attend one, two or all three days. The program remains open for 50 weeks a year. “You can’t close a program like ours,” said Levy. “Our members are young, and so a lot of their partners have had to become breadwinners.” Thanks to Paul’s Club, many of these individuals can continue working during the week, she said.

The Levys are joined by program director Chelsea Grills, who brings expertise in managing the disease with a degree in therapeutic recreation. Paul’s Club hosts 15 to 18 members each day, supported by as many volunteers as they can welcome – to the members, volunteers are known as friends, who just want to spend the day with them. No one wears a name tag, and everyone participates in the daily activities. This is one of many efforts to ensure that everyone is treated with the utmost respect. “This is a disease that can rob people of their dignity,” said Levy.

A typical day at Paul’s Club begins with the team greeting members in the hotel lobby. They are welcomed upstairs for tea, coffee and breakfast. Members can be engrossed in conversation for up to an hour, but, by 11 a.m., “we’re moving,” said Levy. Physical activity is an integral part of the program. The Levys love to try different forms of exercise to engage members. Currently, the crowd favourite is dance, based on the group’s shared love for music.

Understanding the significant benefits that music can have on those with cognitive impairments, music is played throughout the day, songs spanning various decades and styles. If dancing is not on the agenda, there will be a walk, yoga session or exercise class. Following this is lunch at the Italian restaurant located below the hotel. Grill gathers members’ orders in advance to alleviate the potential stress of decision-making at the restaurant. After the meal, everyone reconvenes upstairs to discuss current events, play trivia games and, most of all, laugh together – the group laughs all day long, no matter the activity, said Nita Levy.

The final activity is a walk on the Seawall, ending at a nearby gelato parlour. Members have the option of traveling home via HandyDART, eliminating the need for their families to coordinate their transportation.

Paul’s Club’s programming is designed to provide members with a sense of belonging and respect. “We can’t change the diagnosis of our members, but we can ensure that they experience a great day,” Levy emphasized.

The days unfold quickly “because we’re engaged, and this is fun,” she said.

Paul’s Club aims to see who their members are beyond their diagnoses. The Levys and Grill try to empower members by focusing on what they can do, rather than what they cannot. “One can always have a quality of life,” said Nita Levy.

Paul’s Club can carry out its mission largely through support from Vancouver Coastal Health Authority and whatever contributions families are able to make, Levy said. “We have never declined anyone on financial grounds, and we never will.”

On July 30 at Nat Bailey Stadium, Paul’s Club will host their annual fundraiser. The event will include an all-you-can-eat barbeque and bar, and a baseball game. Their goal is to raise $30,000, with $10 of each ticket sold going directly to Paul’s Club. Tickets – $60 for adults and $45 (inclusive of tax) for children 4-12 – can be purchased at paulsclub2023bbqandbaseball.eventbrite.ca.

To learn more about Paul’s Club, visit paulsclub.weebly.com.

Alisa Bressler is a fourth-year student at Queen’s University in Kingston, Ont. She is an avid reader and writer, and the online director of the arts and culture publication MUSE Magazine. Bressler is a member of the Vancouver Jewish community, and the inaugural Baila Lazarus Jewish Journalism Intern.

Solving a family cold case

Wayne Hoffman’s latest book is about his efforts to solve the 1913 murder of his great-grandmother before his mother’s dementia takes full hold of her mind.

Well into his book The End of Her: Racing Against Alzheimer’s to Solve a Murder, Wayne Hoffman notes that it wasn’t until his mother was admitted into a nursing home that he began to read books and watch films about the disease, finding comfort in other people’s stories.

Hoffman’s nonfiction account of his mother’s decline – and his search for his maternal great-grandmother’s killer – was released this past February by Heliotrope Books. Perhaps coincidentally, I only cracked its proverbial spine (I have an electronic copy) a couple of weekends ago, the same weekend my father moved into a retirement home.

I was drawn to The End of Her both as the daughter of a parent with dementia and as a former Winnipegger. It was indeed comforting to read about how Hoffman’s family dealt with his mother’s dementia, how her dementia presented itself and how difficult the medical system was to navigate. There were many commonalities with my family’s experience, despite this part of Hoffman’s story taking place in the United States. Originally from Maryland and now living in New York, Hoffman is executive editor of the Jewish online magazine Tablet. He is a journalist, who also has published three novels, which almost guaranteed the The End of Her would be a compelling read.

Admittedly, I did not follow all the connections between Hoffman’s relatives across generations, nor find that part so interesting. But I did understand how Hoffman discovered more family during his research than he knew he had, and that this was a silver lining, though it could never compensate for the lost relationship with his mother.

Hoffman’s mother loved to tell stories and one of the more intriguing ones was of how her maternal grandmother, who had lived in Winnipeg, had been shot by a sniper while sitting on her porch nursing her new baby. Never believing the story, Hoffman kept his thoughts to himself until a video he made at Passover in 2010 revealed that his mother’s memory was failing. He thought about how the Passover story is handed down through generations, and how his family’s stories also become a part of history. He decided to challenge his mother’s – and his aunt’s – narrative about the 1913 murder of their grandmother, Sarah Fainstein. And his mother returned the challenge – asking him to tell her, then, what had happened.

Over the next 10 years or so, Hoffman searched, in fits and starts, for the true story of his great-grandmother’s death, finally finding information when he searches for Feinstein instead of Fainstein. The death certificate notes that it was, indeed, homicide. The amount of information Hoffman is able to piece together from a wide variety of sources, including conflicting newspaper reports and official documents, is impressive. He figures out the mystery to his satisfaction, but its veracity is unlikely to ever be known.

Unfortunately, by the time he reaches his conclusion, his mother’s dementia is to the point where she cannot absorb it. The photos and stories that his mother shared with him throughout his life are now his responsibility. A responsibility he takes seriously.

Novels miss the mark slightly

I was very much looking forward to two recent novels. Both are love stories, but unconventional ones. I enjoyed them, and read them cover to cover – generally, I allow myself to stop reading, watching or listening to whatever it is I’m not enjoying, so that I wanted to know how the stories ended is a compliment to the writers. But I was disappointed in the novels, ultimately. In both instances, I felt a little robbed of emotional impact.

Perhaps, given their protagonists, I shouldn’t have been surprised that the cerebral aspects of the books would outweigh, even quash, the heart-rending effects. Morningside Heights by Joshua Henkin (Pantheon Books, 2021) is about an uber-accomplished, hyper-intelligent professor who is struck by early-onset Alzheimer’s. Never Anyone But You by Rupert Thomson (Other Press, 2020) is about two real-life cultural icons who were in the same social circles as people the likes of Ernest Hemingway and Salvador Dalí.

Love faces adversity

Within the first 20 pages of Morningside Heights, I didn’t particularly like either Prof. Spence Robin or his wife, Pru. He is an all-star academic, winning awards and grants of all sorts; he has ambition and has achieved some power in his world, and carries himself as such. He is Jewish but changed his name early in life, “to escape the Lower East Side.” He is Pru’s teacher, though only six years her senior, and downplays her concerns of being seen on campus as just his girlfriend, not as a person in her own right. And it is only after he semi-proposes that he tells her he has a sister with brain damage, who he visits rarely, and that he’d been married before and has an estranged son from that marriage.

For her part, Pru lets Spence get away with all these things. Worse, she abandons her own beliefs and dreams, basically, to be with him. For example, she keeps kosher before she meets him and in their early days together, but lets that go by the wayside. She has her own promising career that she gives up because her own areas of interest overlap with his award-winning expertise. He lets her become his shadow. He lets her main purpose become supporting him, while not reciprocating or appreciating that support at all, it seems.

So, it’s hard to empathize with the individual characters when their lives are completely upturned by Spence’s Alzheimer’s, which begins to affect him in his late 50s. That said, one doesn’t wish ill on anyone. The challenges both Spence and Pru face are severe, and Henkin brilliantly communicates the difficulties on both sides. Spence’s confusions and his not being able to understand fully the state he’s in are as heart-wrenching as his strong will and refusal to step down from work or admit his frailties are frustrating. Pru’s sadness at the loss of her partner and the heavy responsibilities of caring for him are palpable.

Perhaps the weight of these feelings and circumstances is part of what inspired Henkin to give – in my opinion – too much ink to Spence’s troubled son. Spence and Pru’s daughter Sarah doesn’t figure as prominently, but a lot of time is spent on Arlo and, in some respects, Arlo allows readers to get to know more about Spence. But those story threads interrupted, for me, the potential intensity of the Spence-Pru storyline, which, I have to admit, was both a relief and a letdown. I wasn’t surprised that Henkin has personal experience with dementia. In an online interview with the publication Shelf Awareness, he shares, “Although much of Morningside Heights is invented, it is, in many ways, my most autobiographical novel to date. My father, like Spence, was a professor at Columbia who developed Alzheimer’s, though my father developed it much later in life than Spence did. In writing about the ways Pru lost Spence, I was re-experiencing my mother’s loss, and my brothers’ and my loss.”

The rawness of that real pain is tempered in the novel, perhaps out of personal necessity. And perhaps most readers will appreciate that emotional distance, but I was hoping for a more intimate portrayal.

Not-so secret love

Never Anyone But You also lacks intimacy, even though it is about Suzanne Malherbe and Lucie Schwob, who fall in love and become both personal and professional partners. Thomson writes about the real-life French artists in a somewhat didactic and distanced way. He has done all his research but never fully inhabits or gives full life to his characters, who must have been quite passionate and committed people to have accomplished what they did under the circumstances in which they did it.

The women knew each other from childhood but end up becoming stepsisters when Lucie’s father (who was Jewish) connects with and eventually marries Suzanne’s mother (who was Catholic). Suzanne is immediately captivated by Lucie when they meet more formally; Suzanne is almost 17 years old and Lucie a couple years older than that. Never Anyone But You is told from the perspective of Suzanne.

Early on, the two decide to collaborate – Lucie’s words and Suzanne’s drawings. Lucie transforms herself into Claude Cahun before Suzanne reinvents herself as Marcel Moore. But the new persona cannot heal Claude’s bouts of depression and, throughout her life, she struggled to stay alive.

Claude and Marcel were unofficially (because they weren’t men) part of the Surrealist scene in 1920s Paris but their artistic (notably, photographic) success was tempered by the Second World War. They leave Paris in the late 1930s and take refuge in Jersey, where they use their talents to unsettle and educate the Nazi soldiers who occupied the island from 1940. It was their hope that their leaflets would demoralize the soldiers, and even cause some of them to desert. Marcel was fluent in German, so they could make the subversive material appear as if it were coming from one of the soldiers. Eventually, the two would be discovered and arrested. Though they would suffer imprisonment, they survived the war.

The bravery of Claude and Marcel is remarkable, as is their dedication to each other, though Claude is depicted as being unlikeable at times, between her mental health issues and her being more fluid with her sexuality than Marcel, ie. she had other relationships. Nonetheless, for Marcel, there was never anyone but Claude, though it is difficult to see why there was such devotion and loyalty on her side, and Thomson’s novel doesn’t answer that question. Ultimately, the two were together for more than 40 years, until Claude’s death in 1954, so there was, I guess, really never anyone but Marcel for Claude, either.

Dementia care is self-care

Karen Tyrell, founder of Personalized Dementia Solutions, spoke recently at an online event hosted by Beth Tikvah and the Kehila Society. (photo from dementiasolutions.ca)

To care for people with dementia, caregivers must first ensure they care for themselves. That was a message from Karen Tyrell, an expert with 25 years’ experience assisting people with dementia and those who care for them.

May is caregiver awareness month and Tyrell, who founded Personalized Dementia Solutions, was speaking at an online event May 19, sponsored by Beth Tikvah Synagogue and the Kehila Society of Richmond. Tyrell, who is also author of Cracking the

Dementia Code: Creative Solutions to Cope with Changed Behaviours, teaches people how to deal with dementia in loved ones through one-on-one and group consultation.

Common symptoms of dementia include impairment of memory and thinking, judgment and communication problems and personality changes.

Tyrell noted that the stress caused by caregiving for a person with dementia can result in physical and emotional health issues, some of which themselves can exacerbate the causes that bring on dementia. So, it can become a cycle in families.

She offered a range of strategies, such as breathing exercises, for caregivers dealing with stress. She also emphasized the need to share your concerns with others before they evolve into a crisis.

“As soon as you notice your stress levels are starting to climb and you’re having a hard time to breathe because of what you’re going through, please reach out, tell someone,” she said. “Reach out to your community, reach out to your doctor, reach out to a counselor, reach out to the Alzheimer’s Society in the community that you’re in. Reach out to someone to tell them, because, when you talk about it, then others will give you suggestions on what you can do.”

She urged caregivers to accept help when offered.

“Please don’t think that you’re going to be fine or that you’re going to be an inconvenience to others,” she said. “You need that help. Nobody can handle caring for someone with progressive dementia all by themselves. It’s not humanly possible from the beginning to the end.”

Another tip is to have realistic expectations.

“If you are thinking, I can do this all on my own because I’m the wife and this is my duty, in some ways, I would tell you, that’s great. You’re doing great,” Tyrell said. “But is it realistic that you can do this all on your own?”

Setting boundaries is another key.

“It’s hard to say no to people, but, when you’re setting boundaries for what you will and will not do, and say no to certain things, then you’re going to take better care of yourself,” she explained. For example, some people accept that they can continue to care for their loved one at home until, for example, the person becomes incontinent more than once a day, or until the person with dementia is no longer able to go to their twice-a-week adult day program, giving the caregiver a short respite.

An inability to get proper sleep is a dangerous cycle, Tyrell warned. Exhaustion on the part of the caregiver is a recipe for disaster. Melatonin for the caregiver or the person with dementia could help, or a paid worker to sleep on the couch for a limited period in case they are needed, she said. If possible, the caregiver might get away for a couple of days or the loved one could go into a few days of respite care.

Developing negative emotions and responses is understandable, she added, but finding ways to be positive is critical.

“Try to find some of the positives of your situation,” she said. “One fellow said him and his dad never got along all of their life, they had a really rocky relationship, but when he started to develop dementia, his personality changed and they became best friends. He looked at the positive: ‘It’s not fun to see my dad go through this but I found something good in this.’”

Laughter is a medicine, she added. Remaining social – even via the computer if the pandemic makes in-person socializing difficult – and having laughs with friends can go a long way to keeping a caregiver healthy.

Meditation, yoga, prayer, relaxing exercises or activities are also important tools.

“Exercise is proven to help us burn adrenaline,” she said. “So, when you’re stressed, go for a walk, try to burn off some of that adrenaline. Move that body. Walking is a great exercise.

“Eating healthy is helpful,” she added. Dark green vegetables and all sorts of berries, but especially blueberries, have antioxidants that help slow the aging process.

The presentation is available for viewing at btikvah.ca.

Dementia in film, the sequel

Lance Henriksen, left, and Viggo Mortensen in Falling. (photo from indiewire.com)

In February 2016, the Jewish Independent published my column “Dementia, cinema’s darling,” in which I reviewed seven films about people struggling with dementia. Well, here we go again! This pandemic year has seen the release of four extraordinary films that feature people struggling with the symptoms of dementia, those with the illness and those who are close to them.

These films opened my eyes not only to the symptoms of Alzheimer’s disease, but also how the affected persons perceive what is happening around them and how that altered reality affects loved ones and family members. After having watched these four unique films, I feel like I have taken a course in how dementia evolves, and how it feels to suffer through the gradual deterioration of the self. I have been shocked, educated and enriched by these moving works of art.

Falling (2021): Viggo Mortensen writes, directs and stars in this lacerating drama about a son dealing with his father’s mental decline. Lance Henriksen plays the father Willis, a foul-tempered, bigoted man, filled with intolerance and invective. His meanness is hard to watch. The flashbacks inform us of the subdued menace of Willis, they scrape your senses like sandpaper. John, the son (Mortensen), must call on all his reserves of patience, understanding and love to withstand the onslaught. (I watched it on TIFF Bell Lightbox, but do a Google search to see where it is streaming now.)

The Father (2021): French writer and first-time director Florian Zeller presents a frightening new angle with this movie, which aims to mirror the confusion and discomfort of encroaching dementia. Anthony Hopkins, 83 years old, takes us from the realm of sympathy to empathy. It is disturbing and brilliant. Hopkins, as the father, nails the way in which people learn to cover for their mental mistakes. The supporting cast is excellent, and Hopkins won the best-actor Oscar for his depiction of a mind in decline. (It is on TIFF, but do a Google search.)

Supernova (2020): Stanley Tucci and Colin Firth dazzle as a couple facing their fears. Tusker and Sam have been together for decades. The careers of both have been put on hold because Tusker has been diagnosed with early-onset dementia. They set out on a road trip. Harry Macqueen, the director, has created a drama about love and mortality. The northern English scenery is stunning, as are the performances of these two people stoically accepting mortality. (It is on TIFF and is also accessible on Apple TV+ and perhaps elsewhere.)

image - Martine Chevallier, left, and Barbara Sukowa in Two of Us — Martine Chevallier, left, and Barbara Sukowa in Two of Us. *(photo from Magnolia Pictures)*

Two of Us (2021): An older lesbian couple is met with unexpected devastation in the aching romantic drama by Filippo Meneghetti. Nina (German actress Barbara Sukowa) and Madeleine (Martine Chevallier) have waited decades to love one another freely. They are preparing to leave France for new beginnings in Rome. First, Madeleine must come out to her children before realizing her dream, but tragedy strikes before she can speak her truth. Sukowa is ferociously great as a woman whose devotion is as fierce as her determination to drag her lover into a more honest life. This is a film of profound intimacy between two people. In French with English subtitles. (It is available at TIFF Bell Lightbox.)

Dolores Luber, a retired psychotherapist and psychology teacher, is editor-in-chief of Jewish Seniors Alliance’s Senior Line magazine. She works out four times a week, studies Modern Hebrew twice a week, and is constantly reading books and watching movies. Her motto is “Never underestimate an old lady who can deadlift you.”

What’s up in gerontology?

At the second program of the season in the Jewish Seniors Alliance Snider Foundation Empowerment Series, a few Simon Fraser University graduate students shared their research interests with the 70-plus participants who tuned in via Zoom on Jan. 15.

Jointly sponsored by the JSA and Sholem Aleichem Seniors of the Peretz Centre for Secular Jewish Studies, the Gerontology Research Panel: Eager to Share our Interests and Help our Community – What’s Up With Seniors event featured master’s students Lindsay Grasso and Kishore Seetharaman, and PhD student in gerontology Eireann O’Dea.

Grasso became interested in exploring the impacts of separating couples in long-term care settings when her own family experienced it. She said this problem of separation will become more severe as more couples age together. Current long-term care settings separate couples, depending on each partner’s individual needs.

The effects of dementia on couples is profound and, often, one partner ends up as the caregiver for the other, she said. When the point is reached that institutional care is required, being together would alleviate a lot of the pain, believes Grasso, who has received a grant to look into the long-term effects of separating couples, as well as the effects on visiting spouses, when only one partner is in care. In both scenarios, there is the loss of a shared life, shared memories and the beginning of mourning. It is important to continue the relationship through visiting, sharing activities and eating together, she said. The healthier spouse would need to monitor care and advocate for their partner. For her research, Grasso will be conducting in-person interviews with couples, and will also meet with staff to review their understanding of the issues surrounding separation.

The second presenter, Seetharaman, has a background in architecture and is interested in planning and designing dementia-friendly neighbourhoods, especially in Metro Vancouver.

Worldwide, 70% of dementia-affected adults live at home, so dementia is more than an individual health issue, it is a community issue. Communities must be more inclusive, he said. He would like them to focus on eliminating stigma, raising awareness, social engagement, accessibility to services, improving planning and design of public spaces and support given to caregivers.

In terms of design, he said, familiarity and easy recognition are important. Signs should be clearly visible and easy to read. Distinctive landmarks are helpful for finding the way, he added. There is some work being done in Vancouver in this area but it is not clear as yet how it will be implemented. Seetharaman would like to create a body of knowledge for designers. He is hoping to interview both dementia patients and public servants.

O’Dea is looking into volunteerism and cultural generativity. She became interested in these topics as an undergraduate, when she was volunteering at the Jewish Community Centre of Greater Vancouver and its L’Chaim Adult Day Centre. There, she encountered seniors who were volunteering with other seniors, and she is looking into the benefits on health and sense of purpose in life, as they move away from former roles. The strengths and capabilities of these older adults motivated other seniors to become involved, she noted, adding that each person’s aging process is unique.

O’Dea already has interviewed a number of senior volunteers regarding their motivation. She said many spoke of being motivated by the values of tzedakah (charity) and tikkun olam (repairing the world), and the passing on of Jewish culture. These responses led her to the exploration of cultural generativity, i.e., the desire or need to keep cultural identity alive and pass it down to future generations. This is especially relevant to ethno-cultural minorities, she said, and O’Dea will be researching four minorities: Jewish, Chinese, South Asian and Iranian. She will be studying the effects on both the volunteers and the members of the communities.

During the Q&A session, there were queries about dementia villages; the design and cost of facilities for couples in long-term care; and retention and recruitment of volunteers. The City of Vancouver is apparently looking into an age-friendly action plan that could include persons with dementia.

JSA co-president Gyda Chud reminded everyone about the evaluation questionnaire, then Shanie Levin, program coordinator for JSA, thanked the presenters. The entire program, including the PowerPoint images, is available via the JSA website, jsalliance.org.

Shanie Levin is program coordinator for Jewish Seniors Alliance and on the editorial board of Senior Line magazine.

Scientific breakthroughs

Scanning Israeli news this week has a feel of a sci-fi fantasy. Most eye-catching of all is the assertion by a Tel Aviv University researcher, in a peer-reviewed article, that hyperbaric oxygen therapy can “reverse aging” by lengthening telomeres, the structures found at the ends of chromosomes, by more than 20% on average.

“This means we can start to look at aging as a reversible disease,” Prof. Shai Efrati said, as reported in the Times of Israel. Some gerontologists are skeptical of the claims and some suggest it could open a Pandora’s box of related health issues, but, from ancient times through the 16th-century conquistador Juan Ponce de León to, apparently, contemporary Israel, humankind has dreamed of and sought out a figurative or literal fountain of youth. Whether Efrati’s research will fulfil that dream will be watched closely.

And there are other scientific headlines this week.

Also coming out of Tel Aviv University is news that scientists have destroyed cancerous cells in mice by pinpointing affected cells with “tiny scissors,” while leaving everything around them intact and with no side effects. With trials possibly to begin in humans within two years, they are hopeful that this could be a revolution that could effectively cure cancer.

A third scientific bombshell comes from Israelis in Canada. Eliav Shaked and Roy Kirshon, expatriate biomedical engineers working in Toronto, are developing a speedy, non-invasive diagnostic for patients who are likely decades away from showing symptoms of dementia. While there is no cure yet for dementias like Alzheimer’s disease, the pair believe that an early diagnosis will not only permit individuals to prepare for eventual care but allow doctors to study the progression of the disease and thereby gain valuable insights.

In these pages, we frequently highlight Israeli technological and medical advancements but the news this week really seemed like a dream sequence from a futuristic utopia. Of course, none of these initiatives is a sure bet but they read like a hat trick against some of the most damning health challenges facing our generations.

Is it a coincidence that these are all emerging from Israel? It is no secret that the tiny state is a locus of a massively disproportionate amount of the world’s achievements in a range of fields.

Some books, like Start-up Nation: The Story of Israel’s Economic Miracle, by Dan Senor and Saul Singer, and many other observers have posited that Israel’s successes are achieved not in spite of the adversities the country and its people have faced, but as a direct result of them. So many of the scientific, social and economic advances that have come out of Israel in recent decades are civilian benefits redounding from military research and development, though Israel is by no means the only country for which this is case.

No less significant are the social impacts of compulsory service in a national defence force that some have called the least hierarchical in the world. Individuals who made life-and-death choices for themselves and their colleagues at age 19 or 20 may be less timid in taking major entrepreneurial or other life risks at 25 or 30 than an average North American or European at that age. Not to discount the value of peace and all the benefits it would bring, the circumstances in which Israel exists have created a thoroughly unique social and economic environment.

Coincidentally or not, also in the news this week was a vote at the United Nations in which 163 countries, including Canada, voted for a condemnatory resolution against Israel; five voted against. It is one of 17 resolutions expected in this General Assembly session targeting Israel, while just seven country-specific resolutions are expected to be aimed at condemning every other injustice on the planet. Canadian Jewish organizations and pro-Israel commentators are furious at Canada’s vote, which directly contradicts pledges made by Prime Minister Justin Trudeau, including during the last election campaign.

While many are appalled at the hypocritical obsession with Israel, and certainly Israeli diplomats are in the fray denouncing the vote, average Israelis, it is safe to say, remain sanguine. They have seen far worse attacks than that by the world community in the comparatively impotent global parliament that the UN General Assembly has become.

While it would be nice if the world judged Israel with moral measuring sticks commensurate with those we use for every other country, in the end it doesn’t seem to make much difference, thankfully. Even through the pandemic, Israelis have continued to try and turn science fiction into scientific reality. This week’s news alone included the possibility of cures for cancer, dementia and aging itself. And the benefits of such research do not accrue solely to Israelis, but to all of us – whether the nations of the world at the General Assembly recognize and appreciate that fact or not.

Louis Brier garden project

Left to right: Nicole Encarnacion, Ruthie Shugarman and Lisa Ford. (photo from Louis Brier Home and Hospital)

This summer, the Louis Brier Home and Hospital celebrated the transformation of part of its outdoor space into a place of beauty and quiet.

On the morning of June 30, the wider community came out to support the Louis Brier Home and Hospital’s community of residents living with dementia. The special care unit, which is home for 17 residents who live with severe dementia, has its own outdoor space for the residents and their families. Dubbed the “secret garden,” this space has been tended by residents’ families and, now, thanks to the vision and support of local realtor Ruthie Shugarman, it received a major overhaul.

The project was spearheaded by former master gardener Lisa Ford, who visits her mother, Laura Ford, a five-year resident of Louis Brier, several times a week. Since her mother moved into the special care unit two-and-a-half years ago, Ford has been planting and caring for the space. With Shugarman’s help, the private courtyard has become a welcoming space for families to spend time together with dementia-friendly design components recommended by the Louis Brier’s nursing lead, Nicole Encarnacion.

Just prior to the June 30 gathering at the Brier, the Government of Canada announced its National Dementia Strategy: canada.ca/en/public-health/services/publications/diseases-conditions/dementia-strategy.html.

Help dealing with dementia

For anyone who is close to someone with Alzheimer’s disease or another form of dementia, Dr. David Kirkpatrick’s Neither Married Nor Single: When Your Partner Has Alzheimer’s or Other Dementia (Brush Education, 2018) is a must-read. There is so much in it that is critical to know, learn or come to understand about living, loving and letting go of one’s spouse, partner or friend with Alzheimer’s.

Kirkpatrick, a recently retired psychiatrist, has written a rare gem of a book and its message is needed by so many spouses of patients with these dreaded diseases. Kirkpatrick is a widower; his wife, Dr. Clair Hawes, a proponent, educator and practitioner of Adlerian therapy, died only last year from Alzheimer’s. His warm, wise and wonderful book is a map to help family members make it through what is normally uncharted, terrifying and anxiety-filled territory.

Besides the great clarity and pathos with which this book is written, it is a rare book because it is written from the dual perspectives of a psychiatrist and a loving husband in the process of watching his beloved disappear. Kirkpatrick, the psychiatrist, brings much-needed information to help the care-taking spouse understand the complicated medical condition, from getting the right diagnosis to clear descriptions of how dementia manifests, and even understandable explanations of the brain. As a loving husband, he shares the insights gained from others, as well as from his own years of confusion, anxiety, pain and suffering.

The fact of the matter is that the vast majority of the information in this book is also needed by the children of parents suffering from Alzheimer’s or other dementia. If there is no spouse to read it, then children, nephews or nieces, grandchildren or even close friends should read this book.

There are eight chapters – “The Diagnosis,” “Alzheimer’s Disease: A History and an Update,” “Finding Help and Comfort for your AD Partner,” “Care Homes,” “Improving Your AD Partner’s Quality of Life,” “Taking Care of the Caregiver,” “Sexuality and Intimacy” and “Into the Future” – followed by notes and the bibliography.

This small but powerful book takes the reader from the first stages when a spouse or other family member realizes something cognitive is happening to one’s loved one; when a family member begins to know that their loved one’s life is changing for the worse.

With humour, honesty, pathos and the strong voice of man who deeply loved his wife, Kirkpatrick takes the reader on his journey, from before, during and after the diagnosis, to a care home, and all the way to her death.

There are so many quotes that I could share, but space doesn’t allow it. In addition to Kirkpatrick’s words of insight are many important transcripts from other spouses talking with great honesty about their experiences. Every person’s experience in such a situation is partly unique, but it is also fair to say that all of the spouses in the book are on the same road, just getting off at different exits before returning yet again to the main highway leading to the same destination. Kirkpatrick’s special personal and professional voice shines a light to assist readers to see their way.

In Chapter 4, “Care Homes,” after talking about many of the heartbreaking yet life-saving choices a spouse must make on where the Alzheimer’s spouse should live, Kirkpatrick encourages the reader this way: “These are questions that are not always answered quickly or easily, but they must be asked, and the earlier in your shared experience that you do this, the better.” Yet, near the end of the chapter, he writes, “Think it through carefully. Perhaps write down pros and cons. Other than your decision to become partners in the first place, this is the most important decision in all your years together, so take all the time you need.”

One of my favourite quotes from the book is at the beginning of Chapter 6. It is a toast: “Here’s to Aloneness and her second cousin, Loneliness. May we continue to especially savour and enjoy the former without being absorbed by the latter.” And isn’t this yet another way to describe the holy and tragic dance of loving and losing?

While Kirkpatrick writes beautifully as a psychiatrist and as a husband throughout the book, in Chapter 7, “Sex and Intimacy,” he reveals to the reader even greater depths and poignancy. But, every chapter is filled with meaningful advice, guidance and hope.

Finally, a personal note that I’d like to share with you, the reader of this review, and hopefully a future reader of David Kirkpatrick’s book. Besides being a past congregant of mine, David also has been a dear friend for the past 17 years. In addition, before the onset of Alzheimer’s, my wife and I used to go out with David and Clair to dinners and plays. They were one of our favourite couples to see. Watching their dynamic relationship, their sense of humour, their deep shared mutuality and enjoyment was truly an honour. It is, of course, all the more sad knowing what they had and what they lost.

David, already an accomplished psychiatrist and therapist, certainly never wanted to experience such a loss, but he has translated that tragedy into this book. Neither Married Nor Single is a gift to anyone related or close to people with Alzheimer’s, but it is an especially meaningful and helpful gift to spouses suffering on their own.

Rabbi Shmuel Birnham was the rabbi and spiritual leader at Congregation Har El on the North Shore for 16 years. He retired two years ago. Rabbi Shmuel thoroughly loved being Har El’s rabbi and he also completely loves being retired.