Dealing with dementia

With an aging population, Saskatchewan is looking at an increasingly tough fight against dementia in the years ahead, health experts say.

A family's heartbreaking experience with Alzheimer's

Edna Parrott said it was devastating the first time her husband said he didn't recognize her. (CBC)

With an aging population, Saskatchewan is looking at an increasingly tough fight against dementia in the years ahead, health experts say.

And right now ordinary people like Ron and Edna Parrott, who have been torn apart by Alzheimer's disease, are on the front lines.

For many years, they were inseparable. Now they live 30 kilometres apart — she at their home in Yorkton, he at a care home in a small town.

About Taking the Pulse  

Taking The Pulse reflects the views and opinions of 1,750 people in Saskatchewan.

The University of Saskatchewan's Social Sciences Research Lab conducted the telephone interviews of randomly selected adults March 5-19.

With a sample size of 1,750, the poll is considered accurate to within plus or minus 2.34 per cent, 19 times out of 20.

What drove them apart was dementia, a chronic mental disorder marked by symptoms such as loss of memory, impaired reasoning and judgment as well as changes in personality.

The most common type is Alzheimer's and, according to a Taking The Pulse survey, it's affecting many thousands of families in Saskatchewan.

In fact, 43 per cent of respondents said Alzheimer's directly impacted their immediate or extended families.

There is no cure for the disease. It worsens as it progresses and eventually leads to death. Medications are used to help slow down the rate of symptoms, but that's the best that can be expected.

Looking to the future, the statistics are sobering.

About three times a week, Edna Parrott visits her husband at a care home 30 kilometres from home. (CBC)

In 2008, there were over 3,920 newly diagnosed cases of Alzheimer's and other forms of dementia in seniors aged 65 and older in Saskatchewan.

By 2038, the number of newly diagnosed cases is expected to more than double, reaching over 8,140.

That means many more people will be facing the struggles the Parrott's deal with every day.

Ron was a pastor for more than 30 years, a hard-working family man with a green thumb.

Most Alzheimer's isn't diagnosed early

According to Joanne Bracken, CEO of the Alzheimer Society of Saskatchewan, more and more Saskatchewan people will find themselves in the Parrotts' situation in the next three decades.

Even now, the current number of people with dementia is considered only the tip of the iceberg.

"Only 20 to 50 per cent of people with dementia have a diagnosis and without that diagnosis people don't seek out the help and support that they need," Bracken said.

Three decades from now, the excess demand for long-term care required by dementia patients is expected to increase tenfold.

That will mean longer waiting lists and a larger role for "informal care" provided by families. "Families are really the ones living day to day and helping people with the disease," Bracken said.  

However, many informal caregivers lack adequate resources and support, the Alzheimer Society says.

As well, because families have been getting smaller, there will be fewer people available to help in the future.

But after he retired, things changed. At first Edna thought he was depressed.

"He would forget things. He would ask the same question several times," she said.  "But he was the kind of fella that never wanted to go to the doctor. 

Ron's memory worsened. He was eventually diagnosed with Alzheimer's disease. It was just the beginning of a long, difficult journey for him and his wife.

At first Edna, who was still working, cared for Ron at home.

"He was always taking off on me and we lost him two or three times in Yorkton," she said. "Friends found him one time and brought him back to the house and he wouldn't get out of the car because he said 'It's not my house.'"

One day came the worst blow of all — Ron didn't recognize Edna.

"All of a sudden he said to me, 'Where's mother?' He always called me mother since our kids were born. And I said 'Who do you mean? Me or your mother?' And he didn't know who 'me' meant. It took me awhile but I came to grips with that. It's not easy. 

Nearly 10 years after the diagnosis, Edna could no longer manage. Today Ron lives at a care home in Saltcoats and Edna stops by about three times a week.

"I don't know what's going to happen or when it's going to happen," she said. "I just know that he's still here and I still need him." Back in Yorkton, Edna is still adjusting to living alone.

"There are times I've shed a few tears on the way home knowing what I've lost and what I don't have today," she said.

Ron Parrott now lives at a care home in Saltcoats, about 30 kilometres southeast of Yorkton, Sask. (CBC)