One of the biggest stigmas around dementia is that you’re going to develop the disease if you grow old, according to seniors advocate Isobel Mackenzie.
“If you look at age 85 and over, 20 per cent do have a diagnosis of dementia — but four out of five don’t,” Mackenzie said Monday.
When it comes to nursing homes, most people might think that every resident has dementia or Alzheimer’s. In fact, about 35 per cent don’t and two-thirds have only mild cognitive impairment, she said.
Mackenzie said dementia is a spectrum. Someone who is diagnosed with dementia may be fully competent in some areas but not in others. In some cases, a person may never go on to develop full dementia.
“It’s a journey,” she said.
In B.C. in 2018 about 70,000 people were living with dementia. By 2033, that’s expected to increase to almost 120,000.
Experts don’t believe the rate of dementia is changing. Instead, the numbers are increasing because there are more older people living longer than ever before.
The aim of this year’s Alzheimer Awareness Month is to eliminate the stigma around the disease by changing attitudes. Events culminate on Jan. 31 with a two-hour open house starting at 3 p.m. at the Alzheimer Society of B.C.’s Resource Centre, 301 — 828 West 8th Avenue, Vancouver.
One family dealing with the affects of dementia is that of Lisa Glanville and her mother Ollie, 82.
Glanville said her mother worked for years as the property manager of Vancouver apartment buildings she owned after her husband died. She also worked as a bartender at the Billy Bishop Legion in Kitsilano.
Glanville said she’s seen stigma directed against her mother when she went to an estate planner and explored options for nursing homes. She was told that it didn’t matter because her mother’s dementia meant she wouldn’t remember anything.
Glanville said the most challenging times for her was before her mother was officially diagnosed. When she found out that her grandfather died of Alzheimer’s, she wondered if her mother had it. Initially, her mother passed tests measuring her cognitive abilities.
But Glanville noticed that things were starting to go awry. One day, she discovered that her mother’s online accounts were locked because someone had unsuccessfully tried to access them.
On another occasion, her mother showed her a cup with five of her molars in it. She’d never told her daughter she had any problem with her teeth.
“I thought: ‘Whoa, what is going on here?’” Glanville said.
The clincher was a visit to the dentist.
“The receptionist said to me after my mom went in. ‘Can I give you some advice?’. I said ‘sure.’ ’Have you got enduring power of attorney yet for her Alzheimer’s?’”
Since Glanville is an only child, her mother’s well being become her responsibility. As part of her efforts to seek help, she started attending monthly Alzheimer caregivers support group meetings at the Alzheimer Society of B.C.
“The validation is incredible,” she said.
Morgan Donahue, support and education coordinator at the Alzheimer Society of B.C.’s Vancouver Resource Centre, said she believes that there is a lot of shame associated with a diagnosis of dementia.
She said the stigma can even discourage people from getting a diagnosis or even telling people they have been diagnosed.
In a survey by the Alzheimer Society in 2018, one in five Canadians said they would feel ashamed or embarrassed if they had dementia; one in five admitted to using derogatory or stigmatizing language about dementia.
“I’ve heard so many family members say they wish their family member had cancer because there is so much more of an understanding and acceptance of cancer than this disease,” Donahue said.
An early diagnosis can mean the person is displaying few, if any, symptoms at first.
“This disease is often so invisible, as with other mental health challenges.”
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