Because early-onset dementia afflicts people in their 50s, the symptoms are often misunderstood as a normal part of ageing, like needing glasses to read. But the disease progresses quickly, taking its victims in increments and leaving loved ones in a stressful caregiver role
Early-onset dementia, a heart-rendering disease that took Dales Judd in his prime
Before Feb. 11, 2016, Greta Judd, like most people, had only a general awareness of dementia. She just knew Alzheimer’s disease was a form of dementia that affected older people. No one in her family had suffered from dementia. And she had never heard of early-onset dementia.
Many years before, Greta had started to notice subtle changes in Dales, her husband and high school sweetheart. But at first, these seemed simply to be the normal signs of ageing, like needing glasses to read a book.
So when Dales’ anxiety levels started to increase in his early 50s, she wrote it off as getting older and becoming more set in his ways. When the avid cyclist fell off his bike, he was just clumsy. When he couldn’t remember the name of something, he was merely forgetful.
“With dementia, you lose the person in increments”
But over the years, Greta had become increasingly worried about the changes she saw in Dales. She circumvented Dales’ family doctor and pressed for a clinical diagnosis from an Island Health specialist in seniors care.
On Feb. 11, 2016, the Judds learned that Dales was living through Dementia with Lewy Bodies, an incurably rare disease with characteristics of both Alzheimers and Parkinsons, but one that progressed more quickly than both.
“Getting the diagnosis was horrible,” Greta told Decafnation. “It was devastating to realize my husband of 45 years wasn’t coming back. This wasn’t something we could fix.”
She cried a lot at first but hid it from him by going out for walks.
“He fed off my moods and I didn’t want to upset him,” she said.
Lewy Body Dementia represents between five percent to 10 percent of all dementia cases in Canada. Most of the 500,000 Canadians with dementia are over 65 and have Alzheimer’s or vascular dementias. Lewy Body typically exhibits earlier, around age 50, and tends to afflict slightly more men than women.
Dales’ life expectancy was pegged at three to seven years.
After slowly declining over almost 20 years, Dales died exactly on Feb. 11, 2019, at age 68. But he did not die how you might imagine.
SEEING THE SIGNS
Looking back, Greta can see now the little signs of dementia that Dales had been exhibiting for more than a decade before his diagnosis.
He always had poor sleep patterns and frequent insomnia and he experienced noticeable weight gains and losses. Both are commonly accepted indications of a propensity to develop dementia.
He started to forget simple words like ‘refrigerator.’ “You know,” he would say, “that place where we keep the food.” Once an avid and daily sudoku puzzler, he suddenly stopped altogether.
When they went to a restaurant, Dales seemed to always forget his reading glasses. “Just order me something,” he would say. Greta understands now that he couldn’t read the menu because the words weren’t making sense to him any more.
It’s common to develop masking and coping strategies, but as the disease progresses they become harder to hide.
On a driving trip to the Grand Canyon several years before his diagnosis, Dale asked one morning, “Where are we?” Greta took out the map to show the route. But she soon realized his question was more profound than a specific town or campground.
His symptoms worsened. More than once during his sleepless night, Dales flooded the kitchen floor by washing the dishes and leaving the plug in the sink with the water running.
When he left all four elements burning on the stove, about a year before his diagnosis, Greta could no longer leave him alone in the house or outside.
And neither Greta or Dales’ sister, Carol, with whom he was very close, knew until after the diagnosis that he had been having visual hallucinations. They were friendly but frightening.
Dales continued to recognize people right to the end, Greta believes. He just couldn’t say their names or speak.
“He would try. His mouth would open but the words just wouldn’t come,” she said.
Finally, the only way he could communicate or show emotion was to cry.
WHO WAS DALES JUDD?
Greta was 18 when she married Dales, 23. They were married for 45 years. They moved to the Courtenay from Canmore, Alberta in 2003. They semi-retired from Dales’ career as the Canmore community services director and previously as director of a YMCA in Calgary. Dales drove a school bus for the Comox Valley Schools.
Greta remembers Dales as a tremendous athlete.
For a while, he mastered all the racquet sports. Then he got into long-distance cycling. He cycled from Canmore to Alaska twice. He cycled once from Canmore to Jasper over to Prince Rupert, ferried down to Port Hardy and cycled down the Island and then back to Canmore. He and his sister, Carol, once cycled from Victoria to Newfoundland.
Dales always needed a goal, something that he was training for. He ran many marathons and half-marathons.
She also remembers Dales “big sense of humor and he was incredibly funny.” Greta says he was “kind, generous and a superb father. He was proud of his children. He made it a point to expose his children to as many activities and experiences as he could.”
THE END IN A CARE HOME
The tragedy of Dales Judd’s death was not that he died. Greta, her sister-in-law and their children all knew the end was coming.
“I had been grieving for three years already,” she said. “With dementia, you lose the person in increments.”
When Dales’ physical deterioration became too difficult to manage safely, Greta made the difficult decision to move him into a residential care home.
And that’s when the tragedy of Dale’ death occurred. He did not die from his dementia. He died from the Norwalk virus that had spread through the Comox Valley Seniors Village for the second time in 10 months.
Dale had survived the first outbreak, but he and the residents of three adjoining rooms, none of whom were mobile, all died from the second virus outbreak at about the same time.
Because the restrictions of the coming COVID virus pandemic were not yet underway, Greta and Dale were able to spend the last hours of his life together.
But Greta and the family members of the other victims were angry.
“His life in the Seniors Village was horrible,” she said. “Staff all did their own thing then. There was no leadership. Some of the staff even resented family members’ visits.”
Greta was doing all of Dales’ person care and even feeding him. That was common among the residents, she said because the facility was so short-staffed.
She says family members had become the privately-owned facilities’ essential workers even though they were paying the care home $7,000 a month (family cost plus public subsidy).
“I think it’s better now,” she said. “But by the time he died I was grateful that he didn’t have to live that way any longer. It was a demoralizing, demeaning way to live.”
There is another tragedy that accompanies all forms of dementia: the toll it takes on family caregivers.
According to B.C. Seniors Advocate Isobel Mackenzie, there are roughly one million unpaid caregivers in B.C. Ninety-one percent of them are family members, usually adult children (58 percent) or spouses (21 percent).
In a report, “Caregivers in Distress: A Growing Problem,” Mackenzie said 31 percent of unpaid caregivers were in distress in 2016, which represented a 14 percent increase in the actual number of distressed caregivers over the previous year.
She defined ‘distress’ as anger, depression and feeling unable to continue.
Fortunately for Greta, Dales was able to age in place at home for a while with the help of some friends, family and Island Health home care aides. But even so, she says, the burden of having to do everything from pay the bills to take the car in for repairs while providing almost 24/7 personal care took its toll.
“The home care we did get was wonderful, but it was only minimal care. They would sit with him so I could go to buy groceries or run other errands. But it was just to make sure he was safe. They didn’t shower him or do any personal care,” she said.
What Greta really needed was longer-term mental health breaks for herself so she could recharge. She was able to get a week-long respite bed only two times in three years, one each in Cumberland and Glacier View Lodge.
But she eventually connected with a group of five other women while taking their husbands to a weekly Minds in Motion dementia program at the Lower Natives Sons Hall. The group continued to have coffee regularly after their spouses were in care homes.
Now, the women have all taken up the ukulele and formed a group called the Uke-A-Ladies and they play together via Zoom.
And Greta has become active in other groups lobbying the BC government for more long-term care beds and respite beds for the Comox Valley.
Now, she’s thinking of selling the travel trailer the couple purchased long ago with intentions to explore North America. She might trade it for a travel van and make a few trips with her dog.
“We can’t move on,” Greta said. “But we have to move forward with our lives.”
WHAT IS LEWY BODY DEMENTIA?
People with dementia with Lewy bodies have a decline in thinking ability that may look somewhat like Alzheimer’s disease. But over time they also develop movement and other distinctive symptoms of Parkinson’s disease that suggest dementia with Lewy bodies.
Dementia in British Columbia Dementia is a broad term used to describe the symptoms of a number of illnesses that cause a loss of memory, judgment and reasoning, as well as changes in behaviour and mood. These changes result in a progressive decline in a person’s ability to function at work, in social relationships, or to perform regular daily activities.
In British Columbia, current estimates of the numbers of people with dementia vary between 60,000 and 70,000. As the numbers of seniors grow, dementia cases will rise.
TYPES OF DEMENTIA
Alzheimer disease: A progressive disease of the brain featuring memory loss and at least one of the following cognitive disturbances that significantly affects activities of daily living: Language disturbances (aphasia); An impaired ability to carry out motor activities despite intact motor function (apraxia); A failure to recognize or identify objects despite intact sensory function (agnosia); and Disturbance in executive functions such as planning, organizing, sequencing, and abstracting.
Vascular Dementia: A dementia that is a result of brain cell death that occurs when blood circulation is cut off to parts of the brain. This may be the result of a single stroke or multiple strokes, or more diffusely as the result of small vessel disease.
Dementia with Lewy Bodies: This disease often has features of both Alzheimer disease and Parkinson’s disease. Microscopic ‘Lewy bodies’ are found in affected parts of the brain. Common symptoms include visual hallucinations, fluctuations in alertness and attention, and a tendency to fall.
— Internet sources
BY THE NUMBERS
Over 500,000 — The number of Canadians living with dementia today.
912,000 — The number of Canadians living with dementia in 2030.
25,000 — The number of Canadians diagnosed with dementia every year.
65% — Of those diagnosed with dementia over the age of 65 are women.
1 in 5 — Canadians have experience caring for someone living with dementia.
Over $12 billion — The annual cost to Canadians to care for those living with dementia.
$359 million — The cost to bring a dementia-treating drug from lab to market.
56% — of Canadians are concerned about being affected by Alzheimer’s disease.
46% — of Canadians admit they would feel ashamed or embarrassed if that they had dementia.
87% — of caregivers wish more people understood the realities of caring for someone with dementia.
— Alzheimers Society of Canada
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