dementia

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.

Dementia panel covers range

Left to right: Laura Feldman, Dr. Deborah Toiber, Joanne Haramia, Dr. Janet Kushner Kow and Dr. Gloria Gutman. (photo from CABGU)

Alzheimer’s, Dementia and You, an event presented by Canadian Associates of Ben-Gurion University of the Negev on June 5 at the Rothstein Theatre, featured a panel of experts whose presentations and discussion provided insights to both those seeking information and those seeking support.

Keynote speaker Dr. Deborah Toiber of Ben-Gurion University’s department of life sciences, described her approach to neurodegenerative aging as the key factor in understanding diseases like Alzheimer’s. (See jewishindependent.ca/bgu-finds-key-protein.)

Moderated by Simon Fraser University professor emerita Dr. Gloria Gutman, the panel represented a wealth of experience. Dr. Janet Kushner Kow, a geriatrician associated with Providence Health Care and the University of British Columbia, answered questions from the medical perspective. Laura Feldman, with 10 years of grassroots experience at the Alzheimer Society of British Columbia, spoke about the need to seek knowledge and support. Joanne Haramia recounted how families she has cared for through Jewish Family Services have found it easier to cope when they have support from the community. People stayed after the event to mingle and talk to the panelists and ask more questions.

Prior to the event, there was a reception, catered by Nava Creative Kosher Cuisine, for sponsors and partners. Sponsors were InstaFund and Annie Du and Aeron Evans of National Bank Financial, Wealth Management; co-sponsors were the Jewish Community Centre of Greater Vancouver, Jewish Family Services, Louis Brier Home and Hospital, and Jewish Seniors Alliance, with community partners being the Alzheimer Society of B.C., SFU Gerontology Research Centre and the Jewish Independent as media partner.

– Courtesy of Canadian Associates of Ben-Gurion University of the Negev

BGU finds key protein

Ben-Gurion University’s Dr. Deborah Toiber will be part of a panel in Vancouver called Alzheimer’s, Dementia and You: Research, Risk Reduction and Resources. (photo from CABGU)

Alzheimer’s affects about six percent of people over the age 65 worldwide. For years, scientists have been searching for ways to treat it and to discover its roots, but without much success, until recently.

A group of Ben-Gurion University researchers, under the leadership of Dr. Deborah Toiber, is among those who have made breakthroughs. They have discovered that a certain protein, SIRT6, necessary for DNA repair, is largely missing from the brains of people with Alzheimeir’s. The absence of this protein and the gradual decline in its production by the human body as we age might be what triggers the disease.

On June 5, Toiber will be the keynote speaker at Alzheimer’s, Dementia and You: Research, Risk Reduction and Resources. She will be joined in a panel discussion by Laura Feldman from the Alzheimer Society of British Columbia and Joanne Haramia of Jewish Family Services; Simon Fraser University professor emeritus Dr. Gloria Gutman, one of the founders of SFU’s Gerontology Research Centre, will be the moderator. The event, which will be held at the Rothstein Theatre, is being presented by the Canadian Associates of Ben-Gurion University (CABGU) in partnership with the Jewish Independent, the Jewish Community Centre of Greater Vancouver’s Adults 55+ program, the Alzheimer Society of B.C., Louis Brier Home and Hospital, Jewish Family Services, Jewish Seniors Alliance, and L’Chaim Adult Day Care.

According to David Berson, executive director of CABGU, British Columbia and Alberta Region, “the purpose of the panel is to increase the awareness and understanding of Alzheimer’s disease, dementia and neurodegenerative diseases.”

“Deborah was coming to Canada to visit the community in Winnipeg for a similar event,” Berson told the Independent. “We had a wonderful opportunity to bring the young and dynamic researcher to Vancouver and we jumped at it…. Toiber’s research, as I understand it, is part of a race to discover, isolate and understand the characteristics, components and mechanisms of DNA that will allow us to identify and treat neurodegenerative diseases prior to onset.”

In her email interview with the Independent, Toiber talked about her work and her group’s discovery. She said that DNA deteriorate with age. “It is not something genetic or environmental,” she said. “We repair our DNA and continue going on, but the repairs are not perfect. Some DNA remain unrepaired. As we get older, unrepaired DNA accumulate, and their ability to produce proteins diminishes.”

She further explained: “If the DNA is damaged, and a cell feels it is too dangerous to continue with this damaged DNA, the cell may activate a self-destruct mechanism. If too many cells do this, the tissue with the dying cells will deteriorate, such as the brain.” Essentially, the deterioration of the DNA and the reduced production of SIRT6 protein mark “the beginning of the chain that ends in neurodegenerative diseases in seniors. In Alzheimer’s patients, SIRT6 is almost completely gone.”

Toiber said scientists should be focusing on how to maintain the production of SIRT6 and how to improve the repair capacity of the damaged DNA, because that is what causes Alzheimer’s and similar diseases. Unfortunately, it is impossible to introduce the needed protein directly into the brain. “There is a blood barrier that prevents things from passing into the brain,” she said. “But we are trying to find a way to increase the expression of the protein into the brain.”

Toiber has always been fascinated by the molecular biology of the human brain. “I chose this field because I wanted to understand in-depth how the brain works, to investigate what happens when things stop working,” she said. “I think that molecular biology is the answer to all those questions. It’s like being a detective on the molecular level.”

She realizes that a detective’s work is never easy or fast. “Results take years to build, as they are based on previous findings, ours and other scientists’. My current group, where I am the principal researcher, is about three years old. It is a new lab.”

The research is multifaceted and multidirectional. “We do basic science,” she said. “We use animal models and cells to understand what is happening as we age, what is the cause of disease and what can we learn from this to develop treatments or preventive actions. We also collaborate with medical professionals and other scientists to get a fuller picture of various aspects of aging and neurodegeneration, particularly Alzheimer’s disease.”

Toiber’s group doesn’t work on the pharmaceutical angle of how to introduce the protein into patients’ bodies. Instead, she explained, “We are interested in the molecular causes of aging, such as DNA damage accumulation, and how this leads to disease. We work in experimental biology. These experiments are expensive and difficult. It can take a long time to see and understand the results, but it is also rewarding. Molecular processes help us understand how our organisms work and what happens when things go wrong. We have to be optimistic and keep trying.”

Many scientists in related fields of study are interested in Toiber’s work. “I have talked about our research at the international neurochemistry meeting in Paris and at conferences in Crete and Israel,” she said.

To hear her speak in Vancouver, register at eventbrite.ca. There is no cost to attend.

Olga Livshin is a Vancouver freelance writer. She can be reached at [email protected].