Alzheimer’s – Jewish Independent

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].

Jumping gene research

Dr. Gideon Rechavi, who founded Sheba Cancer Research Centre, was in Vancouver in January for an international conference at which he presented new findings on “jumping genes.” (photo from Sheba Cancer Research Centre)

Dr. Gideon Rechavi, who founded Sheba Cancer Research Centre, in Ramat Gan, Israel, was in Vancouver in January for an international conference on DNA and RNA methylation.*

“I described a new work we just published, regarding ‘jumping genes,’” he told the Independent about his presentation at the conference. “Forty-five percent of our genome, part of what people used to call ‘junk DNA,’ is composed of genes that can jump from one place to another.”

As far as what this means for the functioning of a body, he explained, “When they jump, they can activate genes and they can also inactivate genes, and it’s a random process. Actually, when I was PhD student in ’82 at the Weizmann Institute, I found the first example of such an event in mammals.” And, he added, “We were also the first to show the role of such events in cancer.”

Rechavi explained, “In cancer, there is a set of genes called oncogenes, genes that usually are normal genes in our genome but, when they are over-activated or activated in the wrong cell or at the wrong time, they can push the cell to proliferate and can cause cancer.”

Now, he said, many years later, using advanced technologies based on whole genome sequencing, they have found that, “in a variety of neurodevelopmental disorders, such as autism and Rett syndrome and similar diseases, there is a basic gene defect in the family or in the affected child. However, the clinical presentation can differ even between identical twins. Nobody understands why the same genome and the same genetic background will result in such a difference, one patient will be affected by epilepsy, the other one by autism or mental retardation.

“The mechanism that we show is that, in the brain, there is, normally, a constant level of jumping of such genes and, probably, it’s essential for diversity of neurons and brain plasticity and activity.”

This is happening all the time in neuronal stem cells, he said. “During the differentiation of neuronal stem cells … there is a very precise time window of 48 hours when such transposition events can take place. And, probably, it’s essential, because you find it in mice, in monkeys and in humans. However, in all the diseases that we are studying, there is over-activation of the mechanism, so you have many more jumping events.”

We have neuronal stem cells dividing in the brain our whole life, said Rechavi. “In the past, we used to think that all of the neurons are created during pregnancy or soon after, but now, in the last 20 years or so, we know there are also adult neuronal stem cells. When you do gymnastics or when you take Prozac, there are more neuronal stem cells. And, in these neuronal stem cells, these transposable elements – jumping genes – are jumping and probably contribute to brain function.”

The process seems to be quite regulated, he said. “The mechanism we suggest, we call it the ‘lightning rod’ mechanism or hypothesis.”

He explained, “The majority of jumping events occur in sequences in the genome where integration will not cause harm. So, in a normal level of jumping, we expect it will be beneficial, and the chance for damage is low. Although, if, in a variety of diseases, there is uncontrolled activation of this mechanism, so there are many more jumps, then it can saturate the lightning rod safeguard mechanism and then affect genes that are relevant to neuronal diseases, and we have a lot of examples where such things happened.”

To study this, said Rechavi, they sequenced the genomes of 100 samples, which included normal, diseased and control brain samples. “We were able to show that there is a particular normal level of transposition … and, then, over-activation, with many more transposition events, in the brains of disease-affected children.”

From these results, he said, we know that “the genes affected by such insertions from these transpositions, you see that many of them are relevant to neuronal functioning, neural development and a variety of neuronal disorders, such as autism and schizophrenia.”

By understanding the biochemical mechanism in these patients, what activates the jumping, “then you can intervene,” said Rechavi. For example, perhaps a drug could be developed that would decrease the level of transposition.

“This is the next step,” he said. “Now, we have several patients where we know the gene defect involved in the syndrome and, therefore, is involved in the enhanced transposition, so now we have to find a way to shut it off, to lower the activity.”

Rechavi said his lab is researching these jumping genes and their effects in both cancer and neuronal disorders, and that they are currently looking for funding to study the involvement of such genes in Alzheimer’s and in aging.

The purpose of the jumping genes is not certain. “What people suggest,” said Rechavi, “is that it has to do with diversity.” Recalling that it is a random process, he explained, “So, instead of having all the neurons in a particular part of the brain being identical, now you have diversity and probably the diversity increases the efficiency of the brain circuits, etc. It can also be relevant to plasticity. We know that specific brain regions can take over following damage or following a kind of environmental influence and change the activity and perform new activities. So, maybe the ability to create diversity in the brain is an advantage.

“A similar model has to do with the immune system,” he added. “With the immune system, we know that there are genetic mechanisms that increase diversity and, then, the cells of the immune system of an individual can respond to any virus and any bacteria.”

The main focus of his lab at Sheba Medical Centre, he said, is to find new genetic and epigenetic mechanisms, “and then to ask, what is their relevance to normal physiology and what’s their relevance to diseases. That’s how this story that started with cancer research turned out to be very relevant to neuronal disorders and psychiatric disorders.”

Rechavi said the phenomenon of jumping genes, or transposable elements, was first identified by American scientist Barbara McClintock (1902-1992) in experiments with maize. (She won the Nobel Prize in 1983 for this and other contributions to the study of genetics.) “She found it in maize,” he said. “We found it in mammals.”

Conferences like the one Rechavi was attending in Vancouver when he spoke to the Independent by phone Jan. 23 from his room at the Fairmont Hotel Vancouver, where the conference was being held, are useful for several reasons.

“Some people, after my talk, came and they wanted to collaborate, they want to learn the methodologies. Some people suggested samples we could analyze…. This is the basis for scientific collaboration, the main reason to do scientific meetings. You can read everything on the internet,” he said, “but when you discuss with people the findings and you drink coffee together and discuss the details, you can get new information, new non-published information, and also collaborations and friendships.”

Sheba Medical Centre doesn’t have many partnerships with Canadian institutions, said Rechavi. The centre’s main collaboration in Canada, he said, is with Toronto’s Hospital for Sick Children, especially in the field of brain tumours, because one of Rechavi’s former trainees, Dr. Uri Tabori, went to SickKids to study such tumours and stayed there.

Before obtaining his PhD at the Weizmann Institute of Science, in Rehovot, Rechavi earned his doctor of medicine at Tel Aviv University’s Sackler School of Medicine. He is a professor of hematology at Sackler School and heads the Cancer Research Centre at Sheba Medical Centre, the largest hospital in Israel, which serves as a university teaching hospital (affiliated with Sackler) and as a tertiary referral centre. He has published more than 450 scientific papers.

In addition to treating some 1.5 million patients annually, Sheba Medical Centre has 75 laboratories and more than 2,000 ongoing clinical trials; 30% of Israeli medical research is performed at Sheba, which files, on average, 15 biomedical patent applications per year.

In October 2017, Sheba Medical Centre inaugurated the Wohl Institute for Translational Medicine. The idea, said Rechavi, is to take the “findings emerging from basic research and try to translate it into taking care of patients; to better diagnose, to [develop] better treatments.”

* Methylation, explained Dr. Gideon Rechavi, “is the addition of a chemical group known as methyl on the four basic letters of the genetic material (DNA and RNA) to generate a new expanded ‘alphabet.’”

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.

Good news on Alzheimer’s

For the last three years, I have been researching, interviewing and writing articles for Senior Line, the magazine published three times a year by Jewish Seniors Alliance of Greater Vancouver. In that capacity, I read everything I can about dementia, especially Alzheimer’s disease, medical care for seniors and residential facilities for seniors.

A year ago, I succumbed and started paying for a digital subscription to the New York Times. Using their “alerts” system, my inbox is filled with relevant, current articles on these topics. I scour the media (Vancouver Sun, Zoomer Magazine, Jewish Independent, CBC News Network, CNN, documentary channels, movies portraying Alzheimer’s disease, and online newsletters from organizations such as CARP and COSCO) searching out information about these senior issues. I also began visiting the Louis Brier Home and Hospital regularly, interacting with people with dementia (with the assistance of Davka, my Standard Poodle).

Why was I obsessed with Alzheimer’s disease? The truth is that I was swimming in a turbulent sea of fear, dread and panic – analyzing every forgetful moment and constantly measuring my intellectual capacities, to be sure that I wasn’t “losing it.” This had been going on for the past five years.

My feelings and thought processes began to evolve as I gained knowledge and understanding of the causes, the progression of this condition and, of utmost importance, the changes in attitude towards the management of seniors residences and the programs offered to seniors with dementia. Most surprisingly, among the gloom and doom scenarios of “the grey tsunami” and “the stark demographic shift,” I began to understand that there is actually good news about dementia and Alzheimer’s disease. Yes, you heard me: good news!

Today, reaching the age of 100 is no longer shocking. I personally know three people who have reached that age. Seniors of my generation, and the Boomers and Zoomers, are living longer. Within this large cohort, dementia is a product of the natural aging process. The longer we live, the higher the probability of dementia. Is there anyone among you who wants to die at 65 or 71 (the risk of Alzheimer’s begins to increase dramatically at the age of 65)? Wouldn’t you rather live to 86 or 94? Of course! Well then, your chances of having dementia will increase.

At 77, I am more active and more productive than I have ever been. I know that, at any time, I may begin to deteriorate. The influence of genes is crucial: one grandmother had dementia, the other did not. My aunt has Alzheimer’s and, recently, a close relative was diagnosed with the early signs of the disease. I am shocked and saddened, but now I am able to accept the possibility, putting it in the context of the result of aging well and living longer.

What have I learned? Maria Shriver, in her Feb. 25 article on WebMD “We can handle the truth: the facts on Alzheimer’s,” writes “try to put your denial impulse aside and take a hard look at the truth about Alzheimer’s. Because the fear that causes you to deny things – like our risk of getting this mind-blowing disease – can actually be the motivator you need to stop ignoring the facts….” We know the risks and the consequences, but we are in denial and unprepared to deal with it – personally, financially and as a society. It seems that by pushing through my ignorance and my fear, I have come to a place of harsh reality and hope.

The intense desire for the discovery of a cure for dementia, or a preventive strategy for Alzheimer’s disease, is universal. Exciting research is happening in labs across the globe but, until a “miracle cure” is found, let us not refuse to act because there is no cure. Denial is the enemy of hope.

How much do you want to know about your risk of getting the disease? Here is a list of ways to learn more:

Review your family history with your doctor.
Review lifestyle factors like diet and exercise with your doctor.
Review your medical history with your doctor, including questions about brain trauma.
Take a genetic test to determine whether you have genes that raise your odds of getting the disease.
Get a brain scan to spot signs of the disease.

But, if you are like 41% of the people in the survey “Insight into Alzheimer’s Attitudes and Behaviors,” you have not – or are not willing to – take any of the proposed steps, according to a Feb. 25 article by Ashley Hayes on WebMD. Another 46% say they aren’t worried about getting Alzheimer’s in the future, mainly because they take care of their health and also because they can’t do anything about it. Thirty-four percent of respondents say they’re concerned about getting the disease in the future and, of those, 69% say they’re concerned because they don’t want to become a burden to their family, with 60% concerned because there’s no cure.

Michael Smith, MD, WebMD’s chief medical editor, states, “There is great concern about the impact of this disease, but denial, fear or other unknown factors seem to be preventing us from taking the necessary steps to prepare.”

People do not seem to realize that they can lower their risk. A few suggestions are offered: stay mentally or intellectually active, eat a healthy diet, take vitamins or supplements, exercise at least three times a week and stay socially active.

There is a positive link between physical exercise and brain health. There is a relationship between the foods, drugs, alcohol and nicotine we ingest and their impact on the brain. Hopefully, more informed, more realistic children will notice when a parent’s mental capacities are diminishing (if you haven’t), and they will get us to the physician or gerontologist early, wasting no time; perhaps to participate in a clinical trial or to get a new drug that could slow its progression. Plans must be made, contingency scenarios must be worked out. The best way to break through denial is to challenge it.

The good news

Dementia rates have been plunging. It took a few reports and more than a decade before many people believed it, but data from the United States and Europe are becoming hard to wave off. The latest report finds a 20% decline in dementia incidence per decade, starting in 1977.

A recent American study, for example, reports that the incidence among people over age 60 was 3.6 per 100 in the years 1986-1991 but, by the years 2004-2008, it had fallen to 2.0 per 100 over age 60. With more older people in the population every year, there may be more cases in total, but an individual’s chance of getting dementia has gotten lower and lower, as Gina Kolata reported in a July 8 New York Times article.

The psychological definition of “denial” is an unconscious defence mechanism characterized by refusal to acknowledge painful realities, thoughts or feelings. My anxiety, fear and dread have disappeared. I have faced the dreaded monster, I have embraced the enemy. I now visit with people suffering from Alzheimer’s. I have spoken to my children frankly about my wishes if I should become incapable of handling my affairs. I have decided where I wish to live if I must move into a seniors residence to receive care. I am aware of the newer approaches to residential care and housing arrangements. I have informed myself of the resources that my community can offer me.

Now, every day is an invitation to excel, to learn and to enjoy. I have become ambitious, physically stronger and more committed than ever to appreciate my good health and sense of well-being.

Dolores Luber, a retired psychotherapist and psychology teacher, is editor of Jewish Seniors Alliance’s Senior Line magazine and website (jsalliance.org). She blogs for yossilinks.com and write movie reviews for the Isaac Waldman Jewish Public Library website.

Dealing with memory loss

Artwork from a participant in an exhibit by the Society for the Arts in Dementia Care. (photo by Baila Lazarus)

As the population ages, there will be more adult children, caregivers, seniors homes and other centres caring for loved ones or patients whose memories are failing.

For many years, it’s been believed that there is little that can be done to slow such degeneration. We’re told that, if we challenge ourselves with puzzles or other intellectual games, this might have an effect. But, one woman has been investigating a different option – one that started out facing a lot of skepticism by those working in the field but has been slowly gaining acceptance.

Dalia Gottlieb-Tanaka didn’t set out to become an expert in the conditions of dementia, but life brought her onto this path, which she embraces with passion … and compassion.

Born in Israel, Gottlieb-Tanaka actually started out in a drafting career with the Israeli navy and studied at the Bezalel Academy of Arts and Design, where she met her husband, Mineo, who was from the Okanagan. They came back to Canada in 1975 to study at the University of British Columbia, where she did a master’s degree in architecture. The two are both semi-retired now and share their residency between Vernon and Vancouver.

In 1990, Gottlieb-Tanaka volunteered to spend time with a woman living with dementia and that subsequently led to her present occupation. This was a pivotal turning point in Gottlieb-Tanaka’s career.

“I went there and fell in love with this woman. She was so lovely and we could talk about anything in the world,” said Gottlieb-Tanaka.

photo - Dalia Gottlieb-Tanaka — Dalia Gottlieb-Tanaka *(photo from Dalia Gottlieb-Tanaka)*

Over time, Gottlieb-Tanaka noticed there were situations in which the woman demonstrated a lack of memory and no conception of the consequences of certain actions.

“Then it clicked,” she said. “It’s unpredictable. There are good and bad days.”

She became fascinated and started to immerse herself in the study of what she refers to as a medical condition, not a disease.

She learned that there are 72 different types of dementia, of which Alzheimer’s affects the largest number of people; that dementia is characterized by confusion and memory loss; and that it can be brought on by stress or depression.

“You can meet people with dementia who are very, very normal, but they might have memory issues,” she explained. “It doesn’t mean they’re mentally ill, and only now people are understanding the difference.”

Eventually, Gottlieb-Tanaka took her studies to UBC, where she completed a PhD in the Institute of Health Promotion Research and the Interdisciplinary Studies Program. In 2011, she completed a post-doctoral fellowship with the department of psychology.

Her goal was to assess the creative abilities – singing, art, flower arrangement, among others – of people with memory loss to determine how those activities were affected, and whether an increase in those activities could make a difference in staving off the development of these medical conditions.

“So what if someone has memory loss?” she said. “Does it mean they don’t like listening to music?”

Despite a steep learning curve, Gottlieb-Tanaka started to make inroads. She eventually developed the Creative Expression Activities Program for seniors with dementia, for which she won an award from the American Society on Aging. She also founded the Society for the Arts in Dementia Care in British Columbia, which just celebrated a 10-year anniversary.

Among the activities of the society are exhibits of artwork by people suffering from dementia. In its first year, the society’s exhibit was held in North Vancouver and 4,000 people came.

“They were amazed by the results,” said Gottlieb-Tanaka.

The society also runs an annual international conference on creativity and aging, which takes place this year in Vernon, Sept. 8-10.

Trying to pursue her research has been an uphill struggle because Gottlieb-Tanaka was constantly breaking new ground. In some cases, people thought she was crazy. Slowly, however, her ideas are gaining acceptance.

Originally, her work focused on bringing the arts to dementia sufferers; now, she’s looking at how such activities might prevent the onset of those conditions, and she’s showing that such memory loss might be delayed by up to two years.

As her research becomes more known, Gottlieb-Tanaka is trying to pass the torch to those working with people with dementia – nurses, art therapists, music therapists, elder-care facilitators and seniors advocates. That’s the goal of the upcoming conference in Vernon, which offers presentations and hands-on workshops and includes a keynote by Isobel Mackenzie, seniors advocate with the B.C. government. It’s been a 25-year battle, but it seems people are finally starting to take notice.

For more information on the conference, visit cecd-society.org.

Baila Lazarus is a freelance writer and media trainer in Vancouver. Her consulting work can be seen at phase2coaching.com.

Expert on sundowning

Dr. Brian Goldman (photo from Brian Goldman)

While most people have heard of dementia, many of us won’t have heard the term sundowning before.

According to Dr. Brian Goldman, emergency physician at Mount Sinai Hospital in Toronto, sundowning is generally part and parcel with dementia of various kinds.

“Sundowning refers to a person who is sleepy during the day and very active at night,” he explained. “Almost as soon as the sun goes down, that’s when they become active. The activity can be not just when awake and walking about in an agitated or restless state.… For sundowning to have its maximum impact on the patient and others – the caregivers and care providers – you have to have dementia [as well].

“A person who is cognitively intact, who is simply sleeping during the day and being up all night, would have the cognitive reserve to be able to handle that. They might feel they have a problem, need to see a doctor, or they might rearrange their lives because, when everyone’s sleeping, they’re up, [but] they’d be able to cognitively make sense of it.”

Goldman explained dementia as “a chronic disorder caused by a brain disease or injury. It is characterized or marked by impaired cognition or thinking, memory and personality changes.”

Goldman – who grew up in Toronto’s North York, the heart of the Jewish community – said he is seeing more elderly people with dementia. Often he is one of the first people to notice the symptoms.

“As an emergency physician,” he said, “I would say that an increasing percentage of the patients I see in the emergency department are frail seniors. When I started out in the 1980s, we would see an occasional patient over the age 90, but now it’s commonplace.

“I have professional experience, but I also have personal experience. Both my parents have passed away in the last two years and they both reached frail senior years. My mother had dementia. My father did not.”

Why some dementia patients also suffer from sundowning while others do not, Goldman said, remains a mystery. As well, the number of people who suffer from this newly defined condition of sundowning is also unknown, with estimates ranging from as low as two to three percent of people with dementia up to more than 60%.

“It has been said that sundowning tends to occur when the person is in unfamiliar surroundings, though it can also occur in the home,” said Goldman. “It’s well known that some people with dementia have damage to the pathways to their brain that recognize light coming in through their eyes and stimulating a part of the brain called the pineal gland. The pineal gland secretes the hormone melatonin.”

Melatonin is secreted somewhere around 2 or 3 a.m. every morning. It resets your body’s circadian rhythm. If that pathway is disrupted, it makes sense that your sleep-wake cycles would be seriously disrupted.

Another theory is that people who sundown are dreaming vividly. They are flipping between the awake and dreaming states quickly and frequently. And, again, because they don’t have the cognitive reserve, they do not know if they are dreaming or awake.

There is not yet a lot known about sundowning and another phenomenon known as delirium.

According to Goldman, delirium is confusion associated with the activation of the fight or flight response along with symptoms that include tremors, shaking, a fast heart rate, sweating and dilated pupils. These symptoms are sometimes also referred to as “toxic delirium.” People with toxic delirium have a rapid, traumatic change in their demeanor. Triggers of toxic delirium are often fever, urinary infection, pneumonia, flu, or even a heart attack.

“You recognize it if you see a sudden change from what the person was doing a week ago,” explained Goldman. “They look sick, sweaty … something seriously wrong … and there is an underlying cause. Treat the cause and the toxic delirium goes away.

“Sundowning is a more chronic pattern that can go on for months. There is no vast dramatic change. The only change in pattern you might notice, wherein dad or mom wander off at night once a month, then it becomes once a week, then every night. It’s a gradual pattern.”

Ways to help this condition, according Goldman, include regularizing a sundowner’s routine: having meals at set times, a set time for exercise (but not at night), set times for bathing and toileting (like washing in the morning or before bed), and the like.

“The experts say that caffeine should be avoided,” he added. “You want people to walk. Walking is good for them. Visitors are good, but probably not close to the time they’re going to bed. Also, reduce noise from TVs and radios and address the lighting in the room, ensuring you don’t have harsh lighting that could cast disturbing shadows on the wall.”

Besides these steps and before turning to sleep medication, Goldman advised exploring some other preventive approaches. Light therapy has shown some promise, he said, affecting patients in a similar way as those with seasonal affective disorder. This involves getting special light-generating therapy units, which are available without a prescription and come with instructions on use.

When it comes to lost brain pathways, Goldman sees the technique as especially helpful when approached in a “use it or lose it” fashion. “If you want to build up a reserve, this might be a way of doing that, with year-round light therapy,” he said.

“Certainly, making them busier during the day with exercise and other stimulation is the way to go. Somebody with dementia wants adventures in the same way that everyone wants adventures, something new. Keeping to the same routine everyday is helpful for structure, but the novelty factor can be helpful as well.”

Goldman said these practices can offer some relief of the effects of dementia, including Alzheimer’s, the most common cause and form of dementia.

Rebeca Kuropatwa is a Winnipeg freelance writer.

Dementia, cinema’s darling

Julianne Moore as Alice in Still Alice. (photo by Jojo Whilden, courtesy of Sony Pictures Classics)

Fifteen years ago, the subject of dementia was the “elephant in the room,” a very large issue that everyone is acutely aware of, but nobody wants to talk about. If you or a member of your family developed symptoms such as forgetfulness or confusion, you kept it quiet as long as you could. The first time your grandfather found himself somewhere and did not know why he was there was but the coup de grâce, the decisive stroke that heralded the end of a lifestyle as he knew it. This was the beginning of a terrifying and tragic journey towards senility and death.

I remember my paternal grandmother; she was a wonderful cook, Polish style. Her husband took care of her until she had to be placed in a seniors residence. The topic of her illness never came up at home. My father visited her every week. My brother and I did not go with him. Then there was the telephone conversation with my aunt: she was surprised to hear that I lived in Vancouver (I had moved here eight years prior). I knew then that she had Alzheimer’s disease. It was a shock.

During the last 10 years, things have changed. Articles about dementia, in terms of statistics, symptoms, prevention strategies, caregivers and residential settings, abound in our newspapers, magazines, on the radio and on the internet. Seminars, forums, courses, self-help and support groups are readily available – and world cinema has made up for lost time. For the last few years, I have been tracking American, Canadian, British, European and Israeli films that feature people who are suffering from some form of dementia, especially Alzheimer’s. These movies show the impact of their condition on caregivers, whether they be spouses, sons, daughters or friends.

photo - Jim Broadbent with Judi Dench in Iris — Jim Broadbent with Judi Dench in *Iris*. *(photo from Everett Collection / Rex Features)*

The British film Iris (2001) reveals the true story of the lifelong romance between novelist Iris Murdoch and her husband John Bayley, and her gradual deterioration due to Alzheimer’s disease.

The Canadian movie Away from Her (2006) follows a loving couple; she acknowledges her condition and moves into a seniors residence, and the husband must cope with his wife’s new romantic attachment to a male resident of the facility. Still Mine (2012), also a Canadian movie, is an old-age love story told with minimal sentimentality and spiky integrity. She has Alzheimer’s, he wants to build her a smaller house, with his own hands; complications ensue.

Amour (2012), a French film, gives us an unflinching vision of dementia caused by stroke and the complex relationship between the members of the octogenarian couple. It was widely acclaimed and nominated for several Academy Awards.

The British comedy Quartet (2013) brings together four superb actors in a magnificent seniors residence for musicians. Each member of the ensemble has his or her own impairments and talents. Somehow they cope and produce beautiful music together.

The American movie Still Alice (2014) shocked and educated every viewer who stayed until the end. We watch as early-onset dementia gradually overcomes the heroine’s intelligence and independence. Her strategies and courage educate and enrich our lives as she struggles with her loss of memory and mental abilities. Julianne Moore won an Academy Award for her performance.

In the American documentary Glen Campbell … I’ll be Me (2015), the legendary singer agrees to a final North American tour knowing that he has Alzheimer’s. The family supports, encourages and devises ways in which he can continue to perform despite the debilitating effects of the disease. A superb real-life drama that makes one appreciate how drastically the disease affects everyone close to the struggling singer.

photo - Christopher Plummer in Remember — Christopher Plummer in *Remember. (photo from Serendipity Point Films)*

In the Canadian movie Remember (2015), two residents of a seniors home seek revenge against the Nazi killer of their families in the Holocaust. With Alzheimer’s robbing him of his capacity to remember, one old man goes forth, with detailed instructions in hand, to find and kill his tormentor. He struggles with his inadequacies and perseveres.

Then there is the Israeli drama The Farewell Party (2015), which deals with the topic of assisted suicide and dementia. Notwithstanding the topic, it is a sweet, funny and sad tale that teaches us compassion and acceptance.

I recommend all of these movies to you, no matter at what stage of life you find yourself. But you might say, why should I watch these movies, why should I care? I am not there yet. It is not my issue, I don’t need to know about all this. It is too depressing. I defy readers to tell me they do not know someone who is suffering or has suffered from dementia. One in nine people over the age of 65 will develop some form of dementia. We must acquire knowledge of the disease, we must become familiar with the signs and symptoms, we must acquaint ourselves with the various paths that dementia takes.

How can we understand, empathize and assist these people, our grandparents, our parents, our friends, in their journey? As ethical human beings, it is our obligation and privilege to make the disease and those who suffer from it an integral part of our society. Watching these movies will provide you with the tools and strategies to be informed, to be helpful and to be accepting of this condition. After all, you or I may receive the diagnosis of dementia tomorrow.

Dolores Luber is a retired psychotherapist and psychology teacher living in Vancouver. She writes regular columns for Senior Line, blogs for Yossilinks and writes movie reviews for Isaac Waldman Jewish Public Library. This article was originally published on yossilinks.com.

Early detection is key

Left to right: Dr. Alon Friedman, Jayson Dzikowicz, Dr. Michael Ellis and Benedict Albensi. (photo by Rebeca Kuropatwa)

It has been known for years that there is a connection between brain injuries and diseases like Alzheimer’s, autisms and epilepsy, but early detection and possible prevention still elude us.

This was the message Ben-Gurion University’s Dr. Alon Friedman relayed at a recent brain-injury panel discussion, hosted by the Canadian Associates of Ben-Gurion University in Winnipeg. A professor in the medical faculty at Dalhousie University, Friedman was joined by Dr. Michael Ellis of the Pan Am Clinic Concussion Program; Dr. Benedict Albensi of the University of Manitoba and St. Boniface Hospital; and Jayson Dzikowicz of the Blue Bomber Alumni Association. The discussion was moderated by Charles Laflèche of St. Boniface Hospital Foundation.

Friedman opened with remarks on the work being done in the field of brain injuries at BGU and broke the discussion into two topics: traumatic brain injury and brain deterioration due to age.

“The money that we as a community spend on traumatic brain injury and on the outcome is tremendous,” said Friedman. “Sport injury is only one small part of it. Mostly, it’s road accidents and falls.

“We are getting into the 21st century and the average [life] expectancy in Western countries is around 80-to-90-years-old. Most of us will live at least until 90 or 100. The price is that we will all probably die with a brain disorder.”

According to Friedman, what is clear with all of the diseases is that we lose a lot of brain tissue before we see any symptoms. “The main problem is that we don’t understand how the diseases are generated. [Over] the last decade, we are trying to look differently at the brain.”

Researchers are now starting to look at the brain as a whole entity, including different cells that interact and communicate with one another all the time.

“While the brain gets the most blood to supply it with the elements it needs, blood does not enter into the brain tissue normally,” said Friedman. “The brain has its own environment protected by what researchers call ‘the blood-brain barrier.’ This separation allows the nerve cells in the brain to act in a very accurate and stable condition, regardless of what’s happening in the blood. A brain injury occurs when this barrier is broken.”

BGU learned more about this barrier by studying a group of football players in Be’er Sheva. “The reason we did it with football players is we knew it would attract the media much more than others, unfortunately,” said Friedman.

To help the audience grasp what football players face, Dzikowicz, who is a former player, shared his experiences with the panel. He has had approximately nine concussions. “Usually, one is more than enough to take people out of sports,” he said. “In business, if you’re faulting, it’s a long process to replace you. In sports, your replacement is standing 30 feet away…. You’re heavily motivated to stay on the field despite injury.

“When it became an issue with me … if you ever rub your eyes a lot and you see those circles … when I had those circles permanently, and when I got hit in the head and they’d be pulsing and flashing for weeks on end, that’s when I got the message that maybe I should stop playing.”

In the 1990s, when Dzikowicz played the game, his coaches’ main reaction was to say that he had “had his bell rung.” Dzikowicz went on to explain, “You got two plays off, you got some smelling salts and you got tapped on the butt and sent back on the field.”

Run by Ellis, the Pan Am Clinic Concussion Program treats children who have had concussions – the program focuses on kids with head injuries. “It’s a very unique partnership between Pan Am, the Children’s Hospital and our provincial government – multidisciplinary care for the children of Manitoba with mild, traumatic brain injuries,” he said. “Patients with more severe injuries go to the Children’s Hospital. We see 40-60 children a week.

“Fortunately, the vast majority of children who sustain a concussion will recover within two to three weeks, but we know that there’s a certain proportion, about 30-40%, who will have symptoms that will last longer.”

Some kids will have headaches or visual/reading abnormalities, issues with balance or develop mood disorders. The focus of the Pan Am program is to bring together experts from various fields to meet the needs of each individual patient.

While collaborative research on brain tumors and Alzheimer’s is being conducted, less is known about the connection between concussions and epilepsy. About the connection between brain trauma and epilepsy, however, Albensi said, “There’s certainly very good evidence that head trauma can lead to neurodegenerative disease…. The question is how many patients with TBI [traumatic brain injuries] develop epilepsy?”

At BGU, the focus is on using MRI to get better pictures of brain injuries and comparing them with images of normal brains. At Pan Am, researchers are developing an MRI brain stress test and looking at blood flow within the brain.

All the panelists agreed that treatment would be more effective with early detection. “Unfortunately, if someone has full-blown Alzheimer’s, the chances of reversing and changing the situation is almost impossible,” said Friedman. “The only chance … is early diagnosis.”

One of the biggest hurdles is getting those who are experiencing memory loss to see a doctor early enough and for the doctor to send them to a specialist without dismissing the memory loss as “normal.”

“There is a lack of awareness, because people don’t think that there’s something to do,” said Friedman. “Patients can go to early diagnosis in every large hospital today. There is general advice to be made and practice for detection, for treating.”

“I think that what we agree on is that there is some risk in families,” added Albensi. “It’s basically impossible to predict if a parent had Alzheimer’s whether his/her son or daughter will have it. Early diagnosis is more important.”

Albensi explained, “What we study in my laboratory as far as the inflammatory response are transcription factors, which are specialized proteins involved long term in the inflammatory process. And, it’s getting the brain to turn off this inflammatory process, in my view, that is key to reducing the risk for these neurodegenerative disorders.”

“The brain can change itself any time in our life,” said Friedman. “The fact that we can learn means the brain can change, at any age. In any condition basically after a trauma, whether emotional or physical, I don’t think it’s that important, but it’s possible.

“Inside a person, stress is a very important factor against brain plasticity. If we are motivated to change our brain, we can find ways to do it and help ourselves.”

Rebeca Kuropatwa is a Winnipeg freelance writer.