dementia

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].

Victoria is alive and kicking!

Dulcinea Langfelder, being carried by Eric Gingras, in Victoria, which is at Massey Theatre for two shows only next week. (photo from Dulcinea Langfelder & Co.)

Victoria is coming to New Westminster next week for two shows only. Created and performed by Dulcinea Langfelder, a versatile dancer, multimedia performer and award-winning choreographer from Montreal, Victoria is about old age and young spirit, about laughter in the face of tragedy.

Langfelder started her life in New York. She studied ballet and pantomime, singing and acting. After a few years in Europe, including London and Paris, she moved to Montreal in 1978 to join La Troupe Omnibus. Since then, Montreal has been her home. In 1985, she founded her own company, Virtuous Circle Dance Theatre. In 1997, the company changed its name to Dulcinea Langfelder & Co.

Langfelder loves Montreal and can’t imagine living anywhere else. “The city is effervescent, young culturally compared to New York or Paris,” she said. “Fewer boundaries between categories, and close enough to New York to visit my mom. Why on earth would I want to live elsewhere?”

The same philosophy applies to her choreography and performing. Why on earth would she do anything else? “For the moment, I can still do what I love to do, and I believe that it’s important to see older people on stage. Art has always been the most effective way to influence our attitudes. Victoria gives voice to those who have ‘disappeared’ through aging – but we are still alive and kicking!”

Although it’s hard to pinpoint Victoria’s exact theatrical classification, Langfelder said, “It is a multidisciplinary and multimedia work for the stage. There really is no major discipline. I work with the elements on my palette: movement (I guess I do always put that one first), text, humour, dramatic – through line, projected imagery, music and a bit of puppetry. Everything is choreographed, not just the movement.”

The heroine, Victoria, is “a wheelchair-bound 90-year-old, suffering from the loss of memory, autonomy and just about everything else,” reads the press release. But Langfelder melds poignant and funny in this show of an elderly woman’s courage. Victoria premièred in 1999, and Langfelder told the Independent about its origins.

“In 1994, an actor friend of mine, Charles Fariala, who also worked as an orderly and knew that I have a penchant for tragicomedy, called me to say, ‘You must meet Victor, an old man in a wheelchair who’s lost his memory; sometimes I wonder if he’s just gaga or if he’s discovered Nirvana.’ I immediately responded, ‘We’ll call her Victoria!’ I was intrigued by the question: Where do we find our mental victory when we we’ve lost our physical power?”

Inspired by the concept, Fariala and Langfelder started working on the project. “Charles wrote pages of text, which I re-worked,” said Langfelder. “I also incorporated a lot of text that came from Angel Petrilli, a woman who became the principal model for the character, although there were other people as well, including my own father. But this piece is multidisciplinary and multimedia, so the ‘script’ is composed of text, choreography, song and projected imagery. It was written in concert with all of my collaborators; I created the choreography.”

One of the most unusual aspects of the show is that the protagonist is bound to her wheelchair. “It is hard to tame the wheelchair beast,” Langfelder admitted, “but fascinating for a mover!”

The show’s success and longevity – 18 years now – surprises even its creator. “I didn’t think it would fly at all, with such taboo subject matter,” she said. “But I discovered that audiences had been starving to have this conversation in a non-depressing way. While treating this subject as accurately as I can, Victoria is an uplifting piece, because there really are rich, poetic and hilarious moments when dealing with dementia and the end of life. We just underline those moments, without taking the subject matter lightly.”

Like every performer, Langfelder knows that art must change with time, that an actor should be flexible in her communication with different audiences. Victoria is no exception to this rule. “It changed a lot in the first years,” Langfelder explained, “then subtle changes. It adapted to different languages and cultures, though it clearly reminds us of what we have in common around the world. We’ve done this piece everywhere from Japan to Zimbabwe, in seven languages.”

One of the latest changes was adding another actress to play the title role. “I recently realized that this piece could live longer than I will,” said Langfelder. “I trained Anne Sabourin in the role. She plays Victoria in French.”

Langfelder herself plays Victoria in English in every show, in every country, and the reception has been overwhelmingly favourable, but that is not enough for the actress. “The Victoria project is about touring the piece for the general audience it was designed for,” she said. “Plus, we work hard to get those who can most benefit, and are the least likely to frequent the theatre: seniors and family/professional caregivers. The way we get them to the theatre, and Victoria can’t be done anywhere else, is that we go to them first. We offer workshops that answer their immediate needs, like non-verbal communication, movement for seniors and seminars on creativity, humour and dementia. Then we use the opportunity to make them understand that theatre can actually be useful, even more useful than workshops. We invite them to the theatre.”

Like her heroine, Langfelder meets her challenges with a smile. “I love making people laugh at difficult situations,” she said. “It makes me feel useful. My father’s last words to me, before his stroke, were in response to me complaining about my challenges. He said, ‘You mustn’t get discouraged, because what you do is so important! You put human dilemma on stage and allow us to laugh at it; what could be more important than that?’ I had just begun working on Victoria, and he never saw it. I become him when I play Victoria.”

Victoria is at the Massey Theatre in New Westminster on Oct. 27 and 28. For tickets, visit ticketsnw.ca or call 604-521-5050.

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

Books for people with dementia

Eliezer Sobel created L’Chaim: Pictures to Evoke Memories of Jewish Life with his parents in mind. (photo from Shutterstock)

Eliezer Sobel’s new book, L’Chaim: Pictures to Evoke Memories of Jewish Life, was born from personal experience.

Sobel is an artist at heart and has spent his life finding ways to interact with people – through writing, facilitating workshops and running retreats over the past three decades. Three years ago, on his parents’ 67th anniversary, things took a turn for the worse.

“My mother is in her 17th year of Alzheimer’s and is 93,” Sobel told the Independent. “My dad was fine and taking care of her at home until he was 90. On their 67th wedding anniversary, he fell down the stairs. He fell on his head and almost died. Overnight, there were two dementia patients in the house.

“Prior to that, he was driving, cooking and shopping, as well as hiring and handling the payroll for a team of seven aides. He was amazing with it. Suddenly, overnight, I had a brain-damaged dad at 90 years old.”

Sobel and his wife lived in Virginia at the time, which is seven to eight hours away from New Jersey, where his parents lived. After the accident, however, they moved into his parents’ home.

photo - Writer Eliezer Sobel’s parents, Manya and Max, in 2016. They were the inspiration for Sobel’s series of picture books for readers with dementia — Writer Eliezer Sobel’s parents, Manya and Max, in 2016. They were the inspiration for Sobel’s series of picture books for readers with dementia. *(photo by Eliezer Sobel)*

“We stayed in the house for 10 months, taking care of my parents and trying to get the right kind of help in the house that would enable us to eventually move out,” explained Sobel. “But we stayed nearby so we could monitor and manage the scene.”

His dad recovered a substantial amount of his cognitive and physical ability, but passed away this past November.

The work on the book goes back to 2011. “She didn’t speak English words anymore,” said Sobel of his mother at the time. “She would sometimes make up her own language and sounds. She stopped reading, as far as we knew.

“One day, I came upon her accidentally…. She was flipping through a magazine and I overheard her reading the big print headlines out loud, in English, correctly. I was totally floored. Mom can still read, even if it’s just a three-word phrase.”

Sobel wanted to run out and buy his mom a picture book, one designed for Alzheimer’s and dementia sufferers, but he couldn’t find one anywhere. His next thought was to use a children’s picture book, but he was unsure whether his mother could negotiate a book with a storyline. He wanted each page to stand on its own, so it would not require the reader to recall what had happened on a previous page.

“I called up the national Alzheimer’s association and spoke with their chief librarian for the whole U.S. and her response to me was to say that there were 20,000 books for caregivers of those with memory loss,” said Sobel. “I said, ‘I am not looking for [a book for] the caregiver, I’m looking for my mother, the patient. There was dead silence on the other end of the line. She couldn’t think of any such book. Eventually, she did mention one other author who has since become an acquaintance of mine who had a few books, but they weren’t really what I wanted, so I realized I had to do this myself.

“I first did a book that wasn’t just for Jews. It was for anyone with memory loss. It was called Blue Sky, White Clouds, and came out in 2012.”

Sobel – who has also written a novel and a memoir – received such a positive response to this first picture book that he decided to make it into a series.

“My mother got to enjoy the first book a lot,” said Sobel. “Her aides would use it with her almost daily. We would observe that she would zero in on particular photos, ignore certain pages, find a photo – particularly one of a married elderly couple – and contemplate it for 20 minutes and caress the faces.

“These books are for a particular stage of dementia,” he said. “They’re appropriate for someone who’s got enough memory loss and dementia that they won’t be offended or have awareness that this is kind of a simplistic picture book, they’ll just be interested. But they can’t be too far gone, like my mother now, who can’t even look at my face, let alone my book.”

Caregivers often struggle with how to engage people with Alzheimer’s.

photo - A page from L’Chaim: Pictures to Evoke Memories of Jewish Life — A page from L’Chaim: Pictures to Evoke Memories of Jewish Life. (photo by Olaf Herfurth)

“It’s very hard to find activities to do with someone in that condition,” said Sobel. “So, what I was trying to accomplish was to give caregivers something they could share with the patient … or give patients something they could use on their own…. It was an opportunity for sharing to occur, an activity of quality time. For certain pages, in the earlier stages [of dementia], it stimulates memories, conversations, reminiscences or free association.

“I’m from the creative right brain of things, so I could find things to do with my mother, like empty a box of coins on the table and we’d spend an hour playing with them – pennies over here, stacking the quarters, making a picture of a house with the dimes. Then, I’d say to my dad, ‘See, Dad! There are lots of things you can do with Mom. You could put these coins away and do the same thing tomorrow. She won’t remember.’

“He would call me the next day, and say, ‘Ah, it didn’t work. She didn’t know the difference between a penny and a nickel.’ That was the point. He’s a mathematician and very linear … [he] could not break into the play mode. If you’re someone who’s good with little kids, you can do that with someone like my mom.”

In some ways, Sobel often finds himself feeling grateful to Alzheimer’s, because it made it possible for him and his mother to grow closer – at least for the first 10 years of her disease.

At the beginning, Sobel saw her become more available. As a Holocaust refugee, she had always been very insulated, private and afraid of others. Sobel said he went to a psychic early on in her disease, worried that his mother was losing her memories, and the psychic thought she’d be happier without them.

“It was true,” Sobel reflected. “She transformed from that scared refugee into an open, childlike, loving, laughing angel. People would feel blessed to be around her. She was delightful – greeting strangers and striking up conversations that made no sense. She and I laughed about who knows what. She and my father would dance to music. A lot of things were happy about her Alzheimer’s experience.

“I’m not saying there weren’t nightmarish times. We had our share of those as well,” he added. “She went through a violent period where she was chasing people with steak knives. We had to put her into a psych ward for 10 days.”

That was the exception, though, and Sobel said, “I had an opportunity to finally heal my relationship with her.”

Rebeca Kuropatwa is a Winnipeg freelance writer.