A three-year visual diary documenting a mother with dementia and her life forgotten, poignantly rediscovered through her son’s touchingly created photographs. Artist Tony Luciani shows through a participatory caregiving process that we can all learn to be more willing to help others in times of need and discover profoundly fulfilling joy while doing it.
Click on the link or the image to watch this wonderful story encapsulated in a short incredibly heartwarming video.
Accredited to www.tedxcambridge.com/talk/a-visual-diary-on-dementia-and-caregiving
“You don’t look like you have dementia.”
On the couch of his Orléans home between his wife of 15 years, Robin Meyers, and Bernese mountain dog, Brooklyn, Keith Barrett is the picture of a life well lived.
At 59, he works full time at the company he co-founded more than 20 years ago to support people with disabilities, delights in a growing blended family of six sons and five grandchildren and is looking forward to some Florida sunshine.
But he’s also a new voice of an Alzheimer Society of Canada campaign relaunched on Monday to fight old attitudes about what the more than half a million Canadians with dementia look like.
He’s frank that he once believed what people now thoughtlessly say to him.
“I don’t want people to experience what I experienced,” said Barrett, who was diagnosed two years ago with rare young onset dementia, Alzheimer’s type, which is still in its early stages.
“I was part of the stigma.”
The disease’s name conjured up in his mind the image of an octogenarian, confined to a nursing home bed or a locked ward so they wouldn’t wander.
“That’s the picture that came to my mind and that’s wrong,” Barrett said. “Through my own experiences, you can be diagnosed in your 30s, 40s, 50s. I think the more people that can share their story, the more we can have conversations and the more that our society will be accepting.”
Barrett, who fiercely defends his independence with cutting-edge technology, rigorous routine and the support of his wife — “my rock” — chokes up as he recalls when that acceptance has been painfully missing.
“One person I spoke with, the first words out of their mouth: ‘You’re still driving?’” Barrett said.
“Take your time,” said Meyers, 47, putting a hand on his.
“Keith makes really good decisions around where he drives and when he drives,” she added. “But I have people say to me, ‘You still let him drive?’ What do you mean, let him? He’s capable of making his own decisions. It’s really a lack of understanding that people have that someone is very capable of contributing to their communities, to their lives, and to live.
“That’s what we want people to understand. The moment you get diagnosed doesn’t mean you’re the person who needs a lot of care. The moment you get diagnosed is the moment you say, ‘I’m going to work really hard to keep everything that I have, all my skills, my abilities, for as long as I can.’”
The campaign — “Yes. I live with dementia. Let me help you understand.” — aims to change attitudes the Alzheimer’s Society uncovered with recent research that showed that one in four Canadians said they’d feel ashamed or embarrassed if they had dementia. One in five admitted using derogatory or stigmatizing language about dementia.
That leads to real harm to patients and their families, said Alzheimer Society of Canada chief executive Pauline Tardif, who points to everything from jokes that forgetfulness must be dementia to the assumption that a diagnosis means the end of a meaningful life.
It might make people afraid to seek a reason for their own or a loved one’s symptoms like memory loss, changes in judgment and reasoning or mood and behaviour and difficulty performing familiar tasks or expressing themselves. So they don’t get the support they need and treatment. While Alzheimer’s disease is eventually fatal, some forms of dementia can be cured.
Once diagnosed, people with dementia may face impatience when it takes them a beat longer to order a coffee or remember their PIN — Barrett was yelled at during an airport security check — leading them to shy away from tasks they can still perform and activities they enjoy.
Or stigma — “Why visit when she might not remember my kids’ names or even recognize me?” — can keep friends away, leaving people with dementia socially isolated, which is itself an important contributor to cognitive decline.
People with dementia sit on the society’s board of directors and have important roles in educating policy-makers, as Barrett did when he and Meyers attended a conference hosted by the federal health minister last spring to guide work on a new national dementia strategy.
“People in our communities need to be better educated and more patient and understanding to enable them to live their full lives and not disable them prematurely,” Tardif said.
The campaign is also needed to reveal the often-invisible scale of a “crisis” in health care, said Tardif, who co-chairs the health minister’s advisory board on dementia after the federal government committed to developing the strategy the society had long advocated.
While 564,000 Canadians live with some form of dementia, that number is expected to rise to 937,000 by 2031.
That’s mostly because our society is aging and we’re living longer. While dementia isn’t a normal part of growing old, age is the No. 1 risk factor for developing dementia. The risk doubles every five years after age 65.
“The prevalence of dementia is growing exponentially and our care partners across Canada are ill-resourced and that is causing a lot of issues in the care of people living with dementia,” she said. “The Alzheimer Society is only one of those players.
“We try to do our bests with our donors’ support but we don’t provide health care, so in working with our provincial partners and hopefully now with the federal government with the national dementia strategy that is being created we can increase the care and support available to people living with dementia.”
Barrett’s symptoms first appeared about four-and-a-half years ago. After decades of speaking effortlessly off-the-cuff for work, he started forgetting what he’d already said. He was misplacing things and using the wrong word, say “fridge” instead of “stove.”
Meyers recalls that Barrett would be angry that people had told him that they had had a conversation with him that he couldn’t remember but he was reluctant to bring it up with doctors and they dismissed the changes as stress or aging.
“I knew him really well,” Meyers said. “I could see the changes more than anyone else could. I couldn’t continue to watch him be as frustrated as he was.”
Meyers kept bringing it up. Finally, Barrett was referred to a neuropsychologist who performed cognitive tests as doctors did other blood work and an MRI to exclude other causes of memory loss.
In December of 2016, he was diagnosed.
The couple started attending Alzheimer Society education sessions and sharing the news with their family but Barrett admits that it didn’t seem real.
“I still didn’t believe it,” Barrett said. “I’m 57 at that point. It couldn’t be right.”
The message he heard was to “go home and get your affairs in order, get your will in order. There was no positive encouragement that you can live with this.”
Meyers, too, was left with the impression that Barrett was being advised to wind down his life and retire.
“I think we need to do the exact opposite,” thought Meyers, a director in a health care organization who works with seniors, many of them with dementia. “Let’s be positive. Let’s live the best life we can.”
Two years after that diagnosis, Barrett is still heading to the office every day with the help of a colleague who supervises some of his work.
He says the key to living well with dementia is constant learning: he’s systematized his routines, starting with morning grooming and relies on technology, including an iWatch, the virtual assistant Alexa at home and GPS when driving.
He takes notes, asks colleagues to follow up work conversations with a short email summarizing what was discussed and Meyers, instead of telling her husband of their plans for Thursday night, for example, sends him a digital invite so it will be on his calendar.
“As articulate as Keith is when he’s talking to you, it’s really important to understand that he’s just affected in a way that maybe isn’t something you can totally see every day,” Meyers said.
Barrett describes losing confidence, like in his former ability to strike up a conversation with anyone, and struggling with anxiety and impatience. The noise and distraction of big social events can be overwhelming, and walks with the dog have largely replaced the movies they used to enjoy.
“Why pay for something you forget the next day?” Barrett quips, but he’s sombre as he says that he tries not to think of his grandchildren and how he will be as they grow.
He’s become a passionate advocate for more services for the estimated 16,000 Canadians under 65 with young onset dementia and for research to find definitive tests for Alzheimer’s disease and effective treatment in the future.
Accredited to www.ottawacitizen.com (click link to redirect to article)
People with Alzheimer’s experience difficulties communicating, learning, thinking and reasoning – problems severe enough to have an impact on an individual’s work, social activities and family life.
The Alzheimer’s Association has developed a checklist of common symptoms to help you recognize the difference between normal age-related memory changes and possible warning signs of Alzheimer’s disease.
There’s no clear-cut line between normal changes and warning signs. It’s always a good idea to check with a doctor if a person’s level of function seems to be changing. The Alzheimer’s Association believes that it is critical for people diagnosed with dementia and their families to receive information, care and support as early as possible.
Forgetting new information is one of the most common early signs of dementia. General memory loss and forgetting important events and asking for the same information over and over are also common symptoms of early stage Alzheimer’s disease. What’s typical? Forgetting names or appointments occasionally and remembering them later.
People with dementia often find it hard to plan or complete everyday tasks. Individuals may lose track of the steps involved in preparing a meal, placing a telephone call or playing a game. What’s typical? Occasionally forgetting why you came into a room or what you planned to say.
People with Alzheimer’s disease often forget simple words or substitute unusual words, making their speech or writing hard to understand. They may be unable to find the toothbrush, for example, and instead ask for “that thing for my mouth.” What’s typical?Sometimes having trouble finding the right word.
People with Alzheimer’s disease can become lost in their own neighborhood, forget where they are and how they got there, and not know how to get back home. What’s typical?Forgetting the day of the week or where you were going.
Those with Alzheimer’s may dress inappropriately, wearing several layers on a warm day or little clothing in the cold. They may show poor judgment, like giving away large sums of money to telemarketers. What’s typical? Making a questionable or debatable decision from time to time.
Someone with Alzheimer’s disease may have unusual difficulty performing complex mental tasks, like forgetting what numbers are for and how they should be used. What’s typical?Finding it challenging to balance a checkbook.
A person with Alzheimer’s disease may put things in unusual places: an iron in the freezer or a wristwatch in the sugar bowl. What’s typical? Misplacing keys or a wallet, but being able to retrace steps to find it later.
Someone with Alzheimer’s disease may show rapid mood swings – from calm to tears to anger and aggression – for no apparent reason. They may become extremely confused, anxious, suspicious or dependent on a family member. What’s typical? Occasionally feeling sad or moody.
For some people, a change in visual processing may be a sign of early Alzheimer’s disease. They may have difficulty reading, judging distance and determining color or contrast, which may cause problems with driving. What’s typical? Vision changes related to cataracts.
A person with early stage Alzheimer’s disease may avoid being social because of the changes they’ve experienced. They may remove themselves from sports, social events and hobbies. They may become passive, sitting in front of the TV for hours, sleeping more than usual or not want to perform daily living activities. What’s typical? Sometimes feeling weary of work or social obligations.
Post accredited A place For Mom www.aplaceformom.com. Click on link to be redirected to article
After being diagnosed with Alzheimer’s, 81-year-old Ron Robert decided to enroll in university as a personal experiment to see if education could keep the chronic neuro-degenerative disease at bay.
“I thought when I was given this diagnosis, I got to change my lifestyle; I’ve got to do something about this thing,” Robert told CTV News. “I mean, I’m not just going to sit on my butt and let my brain turn to mush.”
Robert is now a first-year undergraduate student at King’s University College in London, Ont., where he takes classes twice a week in political science and disability studies. He is also one of the faces of the Alzheimer Society of Canada’s “Yes. I live with Dementia” campaign to mark Alzheimer’s Awareness Month in January. By “shining a light on the facts about people living with Alzheimer’s and other forms of dementia,” the campaign aims to challenge “misconceptions so that the stigma that surrounds the disease can be reduced.”
“Too many people, they get diagnosed with something like Alzheimer’s and they think somehow it’s the end,” Robert said. “Well, it’s not an end — it’s just a new beginning. It’s something you’ve got to work at. And actually, it’s a good thing because I was getting quite bored being retired! So this is all a new challenge for me.”
‘You don’t look like you have Alzheimer’s!’
At school, Robert has made no secret of his diagnosis with his peers, many of whom are young enough to be his grandchildren. A common response, he says, is “Well, you don’t look like you have Alzheimer’s!”
“I basically say I’m here to keep it at bay and they all think it’s wonderful,” Robert added. “They’re so receptive to it. They sort of look a bit sad at first, but then after I talk to them for a little bit, then they’re all for it.”
After a long career as both a political journalist and an aide to former Prime Minister Pierre Trudeau, Robert’s diagnosis at age 78 came as a shock — even though two of his siblings both died with the disease.
“I should have been aware, but I was in denial just like so many other Canadians are,” Robert said. “We don’t think that we’re going to get it.”
Even how the diagnosis was delivered was jarring. “All they told me was, number one, you have Alzheimer’s, number two, you’ve lost your (driver’s) licence and (the) conversation was over,” Robert recalled. “So you’re on your own basically and that, by the way, I’ve heard that repeated many times by people that have Alzheimer’s.”
So, Robert decided to take matters into his own hands. With no effective medication to stop Alzheimer’s, Robert instead thought that academic assignments and deadlines would help keep his mind sharp. The strategy seems to be working.
“I feel really good,” he said. “The short-term memory is terrible; long-term memory has improved. I feel better mentally, and I think that’s a big important part too. You’ve got to be upbeat.”
And if Robert gets disorientated or lost on the sprawling Southwestern Ontario university campus, his peers always put him back on track.
“One or two or three of them can come over and say, ‘Are you OK? Can we help you?’” Robert said. “You know, that kind of caring means a lot to people like me.”
‘Just like any other student’
Dr. Jeff Preston, who teaches Robert’s disability studies class, describes the octogenarian as “very eager,” “passionate” and “just like any other student.”
“One of the greatest things about Ron being in the classroom is he brings a different perspective: a perspective of his life, but also a perspective of somebody who has a… diagnosed disability,” Preston told CTV News. “I’m so thankful that Ron is stepping forward and saying, ‘I’m going to add my voice… to this fight to think differently about Alzheimer’s and dementia,’ to say, ‘This isn’t the end, this is just the start of a new chapter.’”
As for Robert, he hopes his example will inspire more research into living well after receiving an Alzheimer’s diagnosis.
“What annoys me is all of the money that goes into research on Alzheimer’s, it seems it’s always about the pills,” he said. “I haven’t seen one study yet about how to handle it. I’ve written a brief paper recommending a study be done based on what I’m doing and it’s really hard to get the researchers interested in it.”
And what started as a way to keep his mind active has also given him some new goals too.
“I want to cross that stage with some of those great, bright young adults… to graduate,” Robert said. “I’m hoping I’m the beginning of a wave — I hope that all those people out there listening that have given up on Alzheimer’s will just get off their butts and join me out here!”
Skateboarding, acrobatics and graffiti at 60 – WOW (see video link below).
This amazing story is not only so heartwarming and inspiring but it also directly emphasises the crucial link between hobbies and well-being.
Whether living a normal healthy life in our senior years or caring for a loved one living with dementia, keeping up hobbies or even finding new ones (who is going to be as adventurous as this incredible human being 🤔😉🙃😊) is vital to enhance well-being.
A very interesting video worth watching (link below). Care home trials virtual cycling trips for dementia patients
Stapely Care Home in Liverpool is trialling a scheme where exercise bikes and videos are used to enable residents living with dementia to go on virtual cycling trips to locations around the world.
Staff say the project, which originated in Norway, has boosted well-being and happiness.
Establishing DROP has been a very personal journey for Sharyn and Ross McCarthy, with two living parent diagnosed with the illness (one very advanced and one with a very mild cognitive decline), and one parent passed from dementia.
A recent article in the North Coast Courier provides more insight into the founders thinking and philosophies read more around this terribly challenging and most often exceptionally frightening illness.
With an ever evolving mandate, DROP’s core purpose is ultimately to provide support to all affected people across cultures and societies; as well as individuals and organisations providing vital support services.
A key objective of our organisation is to develop long-term relationships and partnerships with like-minded people, organisations and businesses to help create a paradigm shift in thinking and actions for the support and care of people living with Dementia and Alzheimers, and Senior Citizens.