Mary Beth Wighton has many good days. Like mother’s day, when her 20-year-old gave Wighton and her partner fishing licenses and the three spent the day looking out over the dock, laughing and casting out. She also has tough moments, like when she realized that she could no longer pay household bills on her own. “It still stings,” she wrote in a recent blog post that describes her experiences living with probable frontotemporal dementia. An extremely rare form of dementia, frontotemporal dementia is frequently diagnosed in middle age, unlike other forms of dementia that occur most often in the elderly.
People with mild and moderate dementia continue to live fulfilling lives. Memory lapses, impulsive behaviour and other symptoms come and go, and define a person no more than a physical symptom defines someone.
Yet many people with dementia are often talked about like they’re not in the room. Or they’re reduced to their symptoms. So when they can’t remember their bank card pin, others assume they won’t remember anything. If they say a word like ‘pepper’ when they mean ‘pamper,’ friends think they aren’t following the conversation, and exclude them, explains Gail Mitchell, a professor in nursing at York University who helped research and create a play on the stigma of dementia.
Stigma is a common and serious challenge faced by people living with dementia. While there are many ways to define stigma, stigmatized individuals are stereotyped by others and often treated as inferior. Jim Mann, a 64-year-old living with Alzheimer’s disease, describes the stigma he’s faced as “being talked around, talked over, ignored, not valued and laughed at.”
According to the Alzheimer Society of Canada, 15% of Canadians over age 65 have dementia. Nearly half of those with dementia report losing their friends after diagnosis, according to a UK Alzheimer’s Society report.
Samir Sinha, director of geriatrics at Mount Sinai hospital in Toronto argues that the stigma of dementia is borne out of a larger stigma against aging. “Ageism is the last ism that somehow still seems to be acceptable,” he says. Many see it as acceptable to discriminate against people with a disease associated with old age.
The lack of knowledge around dementia also leads to stigma, as it causes people to rely on harmful assumptions instead of fact. One assumption that Wighton faces often is that all people with dementia are frail looking. “Everyone always says, ‘You seem fine, you don’t look sick,’” says Wighton, who was diagnosed with dementia five years ago, while on leave as a world-travelling business executive.
People don’t want to learn about dementia partly because it’s scary – dementias are progressive, terminal, and involve a lack of control over one’s life. “If I can no longer recognize my own family members, if I can’t make my own decisions, that’s the most disempowering situation,” says Sinha.
“We tend to stigmatize things we don’t understand very well and things that frighten us, which applies to dementia and to mental illness,” adds Heather Gilley, a geriatric doctor at St. Michael’s Hospital.
How societal stigma affects people with dementia
Because people with dementia are often afraid of the disease themselves, they often avoid disclosing the symptoms they’re experiencing until later in the disease, explains Sinha. A 2011 survey of over 1,000 people with dementia by the Alzheimer’s Society found that 44% of respondents waited one year before talking about their symptoms with a doctor. “People seem to believe as soon as you get the diagnosis of Alzheimer’s or dementia, that’s it,” adds Mann.
It doesn’t help that friends might discourage someone from thinking they have a dreaded dementia. When she first expressed concern about her blanking memory, it was attributed to depression or people would say things like “I forget things too,” explains Wighton.
Yet, early diagnosis is important in helping patients manage symptoms, says Mary Schulz, director of education at the Alzheimer Society of Canada. Though there is no cure or treatment to slow the disease overall, some treatments may temporarily slow the development of certain symptoms. Art-based and other therapies are also helpful for many.
Earlier diagnoses can also give people the chance to make major life decisions when they still have the ability to do so. “You can start to have those really tough conversations, like, ‘Am I going to live at home for the rest of my life?’” explains Wighton. “You can start making sure that wills are up to date.”
Of course, stigma is also hurtful. People might falsely think an impairment means the person doesn’t notice when they’re being socially excluded but “they know exactly what’s going on,” says Mitchell.
And social isolation could speed up the progression of the disease. Some studies show social and intellectual engagement may help slow dementia. “Being socially engaged, chatting with the bank teller, talking with someone in the elevator, that helps your brain to be stimulated and to work hard,” says Schulz.
Inadequate knowledge about dementia also means that people don’t know how to help people who suffer from the disease. For example, people with dementia can have short-term memory lapses that might result in them “suddenly finding themselves in a parking lot with no idea how they got there,” explains Mitchell. Such experiences are terrifying, but compassionate and calming support from a stranger can help someone recover and find their way home. Instead, people who see an agitated older person “are afraid and they turn away,” says Mitchell.
What stigma means when accessing health care
Not only can stigma prevent people from mentioning dementia symptoms to doctors, the low value placed on dementia means doctors don’t get enough training to recognize the early signs of dementia, argues Sinha. And those who do have specialized training are difficult to access; there are ten times the number of pediatricians in Canada than geriatricians, he points out.
But a diagnosis can cause a person to be stigmatized when accessing other health services. Sinha has seen cases where patients with early-stage dementia are deemed ineligible for health care services, like rehabilitation care or even surgery, as doctors believe the person will die soon. (Alzheimer’s disease progresses to death after around 10 years, with wide variability from person to person). “Having the label is dangerous,” says Sinha. While Sinha has seen patients with dementia being denied appropriate care, we were unable to find reports or studies on how commonly this occurs.
How health workers talk to patients can change when dementia is written on someone’s record. In some cases, health workers “don’t bother asking the patient questions and talk over the patient’s head,” says Sinha. For these reasons, Sinha instructs his trainees to indicate if a person’s dementia is mild, moderate or advanced. At St. Michael’s, geriatric nurses try to visit their patients with dementia to educate the medical ward nurses on the patient’s capabilities, says Gilley.
In some cases, health workers might not make accommodations for a person with dementia because the disease can be an invisible one. Mann was once yelled at when he approached an emergency nurse with his wife. “Patient only!” the nurse said. When he explained that he has Alzheimer’s and needed his wife to help record information, “she looked me up and down and said, ‘You look fine,’” he says.
Challenging stigma and supporting people with dementia
Numerous initiatives have been launched to challenge the stigma of dementia in Canada and around the world, many of which were highlighted in a major Alzheimer’s Disease International report on stigma. In Seoul, South Korea, for example, children are trained in school to support someone with dementia, and drop-in centres that offer sports and music activities for people with dementia have opened in every city district.
Here in Canada, Mitchell’s play, “I’m Still Here” raises awareness about the effects of stigma and has been performed more than 100 times in Canada and the US, at venues including long-term care homes, community centres and churches. A survey of health professional audience members found many recalled scenes of the patients being ignored or dismissed six months later and that the play helped them to be more “patient and understanding” towards people with dementia.
Kevin Woo, a professor at the School of Nursing at Queen’s University, says that although his university has an undergraduate course that focuses on gerontology and nursing, and covers dementia assessment and management, many universities don’t have such courses. But “things are changing gradually,” with more universities offering courses in gerontology. “We see it as a need with the increased prevalence of dementia,” he says.
Friends and family can help by encouraging people with dementia to continue with many of their daily tasks as before. That could mean accompanying someone to get their mail, instead of getting the mail for them. It also means having a loved one at the table to discuss family or business affairs. “The person may not have the judgment to pull the whole picture together,” says Gilley, but he or she can still offer points to factor into a decision. “Respect that there’s a lot of experience there.”
Schulz encourages health workers to make accommodations for people with dementia, such as repeating questions or asking, “Would it help if I wrote something down?” Schulz adds that if a person is at an advanced stage and isn’t able to comprehend much of a conversation, instead of turning away from the person, health workers can ask, “Would it be alright if I spoke to your partner or son/daughter?”
But Mann advises health workers to assume a patient with dementia is capable of engaging in health conversations unless the person indicates otherwise. “Don’t do the stereotype thing in your head when you hear someone has dementia.”
The Alzheimer’s Society of Canada website offers tips on fighting stigma including a video on how to include and be helpful to someone with dementia in day to day life.
Patients and their families can fight stigma by encouraging other people to expand their knowledge about dementia by offering pamphlets or directing loved ones to websites. When Wighton was diagnosed, she told her loved ones, “Listen, I’m just learning about this, but ask me anything. I might not know the answer, but we can look into it together.”
Wighton also thinks the more that people open up about dementia, the more others will understand that people with dementia live full lives. “I let shopkeepers know that I have dementia,” Wighton says, explaining the disclosure often leads the person to be more helpful when she’s counting change, for example. In some cases, however, “people don’t even respond and they just look at me and say, ‘that will be five dollars, please.’ Obviously, they’re not able to get past stigma.”