Fear of stigma can mean hiding memory lapses from loved ones, co-workersPosted by WBHI on Mar 27, 2012 in Think About It
by Sheryl Ubelacker for The Canadian Press
Cynthia first noticed she was having trouble with her memory a couple of years ago while reading books, one of her favourite pastimes. From one day to the next, she found herself unable to recall the plot, the main characters or the setting.
At work, she would discover she was repeating comments and asking questions she’d already had answered.
“If I was having a conversation with somebody — and it was pretty detailed, pretty long — all of a sudden I’d jump in with something I’d already said. And the person would look at me strangely,” said the Toronto-area woman, who asked that her real name not be used.
Cynthia, in her late 50s, has been diagnosed with mild cognitive impairment (MCI), a condition that falls between the mental decline that’s normal with aging and the far more debilitating diagnosis of progressive dementias like Alzheimer’s disease.
Many people experiencing the symptoms of mild cognitive impairment, including lapses in memory and sometimes difficulty with everyday tasks, often make great efforts to hide their condition from family, friends and co-workers, worried about the stigma surrounding people with dementia.
“During a meeting, I would repeat myself, so I’ve taken to writing notes like crazy during meetings,” said Cynthia, who has kept her diagnosis from most of her family members.
“Nobody (at work) knows. And I’m not telling them … I don’t want them to say things like, ‘Why don’t you just retire?’ Or I don’t want them to think that because I have mild cognitive impairment, I can’t do my job.
“My career is really, really important to me.”
Dr. Kelly Murphy, a clinical neuropsychologist at Toronto’s Baycrest Centre for Geriatric Care who works with MCI patients, said many people don’t want others to know what they’re trying to cope with.
“They don’t want others to attach a greater significance to slips that (most people) make from time to time,” she said. “They don’t want to be seen as less capable. And if they make a slip, they may be even more self-conscious … when they’re with people who might think. ‘Oh, that’s because you have mild cognitive impairment and maybe it’s getting worse.’”
Murphy said people with MCI typically are trying to hold on to the perception they have of themselves as vital, capable people — despite their impairment.
“They’ve got a wealth of other cognitive abilities. They’re still just as intelligent as they’ve always been, they can still solve problems. So they can use those other skills to continue to function very well.”
Murphy said some people with MCI can make the mistake of isolating themselves because of embarrassment about their memory deficits and the stigma associated with dementia. But she said that is the worst thing a person with the condition can do.
Research has shown that continuing to work, volunteering and engaging in such leisure activities as playing bridge or just plain socializing can be protective of the brain and often slow cognitive decline.
And while some people with MCI will go on to develop Alzheimer’s or another dementia, others will not and some may even improve.
That’s why it’s critical for anyone experiencing worrisome and possibly worsening memory problems to seek a diagnosis from their doctor, said Dr. Tiffany Chow, a behavioural neurologist at Baycrest.
While MCI can be a forerunner of Alzheimer’s disease, for others their cognitive problems could be due to a vitamin deficiency, untreated depression or an underlying vascular condition that affects the health of brain cells.
Chow said some people’s reaction to having memory lapses and putting off getting a diagnosis is akin to how some people deal with fears they might have cancer.
“There are some people that know something’s wrong and they’re worried that it’s cancer,” she said. “So they don’t go to the doctor and it gets worse and harder to treat the longer you wait. So that avoidant behaviour becomes your downfall.
“And there is a similar thing here with the concept of mild cognitive impairment. There are a lot of people who like to joke with each other, ‘Oh, I must have had a senior’s moment,’ or ‘Ha, ha, you didn’t remember to meet me at a certain time, you must be getting Alzheimer’s disease.’
“But that joking is our present-day culture’s way of trying to reconcile the fact that we’re all worried, that the quality of our aging will be hampered by something scary called Alzheimer’s disease.”
Chow said while there is still much for clinicians to learn about mild cognitive impairment, research suggests there are simple steps that can help slow the progression of memory loss.
“The absolute gospel truth is our science has revealed that all those things your mother told you apply,” she said.
That means a healthy diet high in fish, omega-3 fatty acids and leafy green vegetables, as well as regular exercise — plus looking after one’s psychosocial health.
“The details of that are to become integrated with your supportive community, whether that’s your immediate family or people outside of your home or colleagues. The less isolated you are, the less isolated you feel, the lower your risk of getting Alzheimer’s disease,” Chow said.
“These kinds of things can have a fairly powerful effect in terms of conversion to Alzheimer’s disease.”