Alzheimer’s – Page 2

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.

Chanukah with Alzheimer’s

(photo from chabad.org)

Bubby’s crispy latkes, Grandpa’s melodious singing and the image of multiple generations gazing at the Chanukah flames – these are among some of our most cherished memories of Chanukah. But what are we to do when someone in our family is suffering from dementia and is no longer able to celebrate the holidays as he or she once did? How can we make sure that Chanukah remains meaningful and enjoyable, as well as safe, for the whole family? In search of answers, two experts in the field of eldercare and dementia offer some advice.

Dr. Allen Power is a geriatrician who is a recognized leader in the field of dementia and other eldercare topics. He has written extensively about dementia care and has been interviewed by major media outlets such as BBC television and the Wall Street Journal.

Dan Fern is the owner of Homewatch CareGivers, a home-care services company in Phoenix. Fern’s mother is an elderly Holocaust survivor who suffers from dementia.

Menachem Posner: As we plan our celebrations with our aging family members in mind, what can we do to make the experience as smooth as possible?

Allen Power: Scheduling is important. Think about what time of day your parent or grandparent feels best, and schedule your celebration for that time. Some people feel better in the morning, and others do better in the evenings, so plan accordingly. Also, bear in mind that they may not be able to handle as long a party as they once did, so plan to have a shorter party, or at least a way for them to leave when you sense that they are beginning to tire.

Also, coach small children in advance. Help them understand the sensitivities involved, and let them know about communication issues or other limitations beforehand so that they can contribute to a positive experience.

Dan Fern: I would add that it may be better to bring the party to them instead of bringing them to the party. That will reduce the level of stimulation and allow them to enjoy the celebration in a safe, familiar environment. Also, designate someone in advance whose job it will be to act as caregiver, making sure that the parent or grandparent can take a rest or go to the bathroom when they need to.

MP: How can we deal with dietary restrictions? What do you suggest for seniors who are no longer able to cook?

AP: I don’t have a lot of concerns about food. In many cases, you can probably work around whatever restrictions there are. Even though there are some caveats, it’s important to involve people with traditions. Flavors and smells can evoke powerful memories, even for people who forget so much, so they are important.

DF: In my work, it is important that our staff help our clients participate to whatever degree possible. We may have women read recipes, stir a pot, cut veggies, or give them other roles they feel connected to. Of course, for men, we also try to help them take on at least part of the role they used to have, making sure they are not left out.

MP: What do you suggest for menorah lighting? What can we do for people who are no longer able to light on their own?

DF: My mom is 91, and she has moderate dementia. We go to her apartment and light the candles, and she loves to watch them and sing the songs. Singing is a big part of the Jewish holidays and a form of reminiscence. It has also been shown to put you in a better mood and brings oxygen to your brain. Stimulation from light, sounds and large crowds of people can be overwhelming for her, so we come to her apartment, and she thoroughly enjoys the experience. We also make sure to take out the menorah a few days in advance and leave it out where she can see it and discuss it. Just seeing the unlit menorah brings her comfort.

AP: Also make sure that you do it in a safe way. If you are afraid the person may knock over the flames, tea lights placed on a tray are a good, safe alternative.

MP: What can be done to ease the discomfort of a Chanukah gift-giver who no longer knows who gets what?

AP: If people are forgetful, never put them on the spot. Coach family members to introduce themselves when they arrive, and to do so often throughout the visit. Set things up so that they cannot make mistakes that will embarrass them. If there is gift giving, keep a written record so that they can refer to a list.

DF: And when they do make a mistake, don’t correct them; just go with it. My mom knows my name but she doesn’t know our relationship. Sometimes she calls me her nephew, and sometimes she calls me a relative. I don’t correct her. If they use the wrong name, just accept it. Of course, you can help things along by reminding your parent or grandparent beforehand what people’s names are and how they are related.

MP: How many nights of Chanukah would you suggest celebrating?

DF: It’s a unique experience every night. Even if you do exactly the same thing every night, people with dementia will not remember and will be happy to do it each time, so see them as much as you can. It’s well documented that, for people with dementia, a good mood lingers even they no longer know what caused them to feel good in the first place. Remember, you have a limited number of days to celebrate with your beloved parent or grandparent, so take advantage of all the time that is available.

AP: That’s right. One of the wonderful things about people with dementia is that they live fully in the present, so make the most of each present moment. If you want to make some visits briefer than others, that’s fine.

MP: What tips can you suggest for taking grandchildren to see grandparents with dementia?

AP: In my writings, I spend a lot of time talking about how we can model though our speech and body language, showing others how to deal with our seniors. Treat their limitations matter-of-factly and normalize them. Tell the kids, “This is Grandma, we love her and it’s OK.” Give the message that they don’t need to be fearful. You can also show respect by asking the senior for an opinion, demonstrating that this person is someone to be looked up to. Cast your parent or grandparent in the role of wise elder. Also, since people with dementia live in the moment, they tend to do well with little kids who also live in the moment.

DF: When asking questions, make sure they can answer them. Say things, like, “We use this candle to light the menorah, right?” or “Remember when we had such a great time last year?” Even if they don’t remember, they are likely to say they do. You can also engage them by using open-ended comments that allow them to respond as they see fit. With a lot of people, showing affection is very appropriate. Sit next to them, hug them, kiss them and hold their hand. Do what you can to make them feel welcomed and part of what is going on around them.

MP: With so many people living far away from parents and grandparents, what can be done to make holidays special from a distance?

AP: It depends on the person. You can always call [or] Skype, even when it’s not Chanukah. For some people, seeing a face and voice may be very reassuring. But be aware that some people may not relate to it, and seeing a loved one on a screen may be unsettling. In those cases, a handwritten letter that someone can read to them may be better.

DF: A major limitation for many older people is hearing impairment, which makes the phone and Skype difficult. Cards, drawings and pictures can often accomplish the same thing, and they can be looked at again and again.

MP: Any more advice?

AP: Most people with dementia are an open book. Look in their eyes and you can see how they are feeling and proceed appropriately.

DF: Constantly monitor the situation. Be aware of the possibility that you may be pushing the limits. They may be tired and ready for a nap. Keep close tabs, and act before things become a problem. It all comes back to the fact that we want them to have a good time, we want to make them feel comfortable and not put them on the spot. If we’re sensitive to their emotions, it can be a great Chanukah celebration. Chanukah is a time when we make and relive great memories.

AP: I hope this will help people not be fearful of bringing Chanukah to a relative with dementia. Isolation can be harmful, so I hope people take the plunge and do it well.

– This article is reprinted with permission from chabad.org.