Stigma is alive and well with Alzheimer’s
“He’s always saying – we have to catch a train.”
“He will himself remember things about his childhood. His work life. Many times, he’ll think he’s going on a business trip and he has a flight to catch or train or something like that says Mala* (name changed to protect the family’s privacy) about her father who is suffering from dementia.
Mala’s parents were living independently in India. They came to the US in 2022 to visit, but seeing the level of health challenges they were dealing with, Mala and her husband insisted they live permanently with them.
My father has dementia, says Mala. He has fallen a couple of times and is now bedridden. There was no way her frail 98-pound mother could have managed his care and the home by herself. Looking after her elderly parents while also caring for her mother-in-law here in the Bay Area has added a level of complexity to Mala’s life she could not have imagined a few years ago.
But this is the commonplace and natural setup in most South Asian families. Mala is grateful for the opportunity to look after the elders in her family and derives a lot of pride and satisfaction from it. This sense of duty is the cornerstone of most desi families. But it takes a toll on the caregivers.
The numbers don’t lie
Alzheimer’s disease is the second-leading cause of death in California and the California Department of Public Health (CDPH) is launching Take on Alzheimer’s, a new campaign to reduce the stigma by teaching Californians how to recognize the disease and what to do after a diagnosis.
Dementia is an overarching term that refers to a range of symptoms affecting cognitive abilities. They have several causes, but it affects a person’s ability to perform everyday activities because of impairments with memory, language and problem-solving. It is a degenerative brain disease, meaning that it worsens over time.
Dementia is not a specific disease but rather an umbrella term for a group of symptoms. Other common causes of dementia include vascular dementia, Lewy body dementia, and frontotemporal dementia (FTD.
Alzheimer’s disease (AD) is the most common cause of dementia characterized by progressive memory loss and cognitive decline.
Current estimates reveal that between 2019 and 2040, the population of California will expand by 16%, whereas the population of people living with AD will expand by 127% or nearly 1.6 million.
Two-thirds of people diagnosed with Alzheimer’s are women.
The misconceptions about Alzheimer’s
“One big misconception is that as you get older, everybody will kind of lose their memory or lose some functions,” says CDPH clinician and researcher Dr. Lucía Abascal at an Ethnic Media Services briefing titled “Breaking Cultural Stigmas Around Alzheimer’s.”
Research shows that more than half (56%) of Asian Americans believe that significant loss of memory or cognitive (such as thinking or learning) ability is a normal part of aging.
So instead of attributing this mental deterioration to disease, people just think they’re getting older and don’t seek care.
Alzheimer’s is different, explains Dr. Abascal because it is progressive. “We want to make people aware of those signs and symptoms so that they can recognize those symptoms in themselves and others and seek medical care.”
“There’s screening tools, diagnostic tools, there’s treatments”, continues Dr. Abascal because there’s a lot of research in this area and we expect care and therapies to even get better.
While the most prominent risk factor for Alzheimer’s disease is age, it doesn’t mean that everyone who reaches a certain age is going to have a neural cognitive disorder like Alzheimer’s disease clarifies Dr. María Aranda, USC professor of social work and gerontology, and executive director of the USC Suzanne Dworak-Peck School of Social Work. That’s why getting medical care for it is paramount.
Language barriers may also limit access to health care and health insurance as well as complicate care with paid aides.
We do not talk about it
The South Asian propensity for diseases like heart disease, stroke, and diabetes increases their risk of dementia but research in the UK shows that fear of embarrassment and misunderstanding in South Asian communities is stopping those with dementia from seeking help.
Stigma is alive and well, says Dr. Aranda in any cultural group when we talk about memory loss. In fact, one in four (25%) of Asian Americans report a lack of family support as a barrier.
It’s typically a topic that does not make dinner time conversation, Dr. Aranda continues. It is in fact shunned.
There is both individual stigma and societal stigma because there is a high price and a lot of hierarchy put on people’s intellect explains Dr. Aranda. So when a person begins to show cognitive decline, the reaction is often shame and fear.
“Maybe this is not something we need to talk about publicly or even within our own family.”
This double dilemma of societal stigma on one side and personal family stigma paralyzes most people. They fear that “they are going to treat us differently. They’re gonna treat my loved one differently. They won’t get the care that they need or the services that they’re eligible for.”
One of the consequential ramifications of this fear is not only does the patient not get the medical care they deserve but also this overprotection could preclude individuals from being able to participate in clinical trials leading to a lack of representation in research.
The sandwich generation and the caretaker dilemma
“You need to treat the family as a unit, not just the individual person with dementia…. because dementia affects everyone,” says Dr. Dolores Gallagher Thompson, professor emerita at the Stanford University School of Medicine.
Great stress involved in caregiving, continues Dr. Thompson because the caregivers are typically the middle-aged, 40 to 60 range daughters or daughters-in-law.
“And they are often in the sandwich generation of caring for the adult parent or parents-in-law as well as their own children who may at that point be teenagers, there may even be grandchildren in the picture depending upon the family constellation.”
Mala can relate to this. They have an aide from 7:30 AM to 3:30 PM during the work week. “My husband primarily works from home. I go in a few days a week and then I work from home. The majority of the help we need is in the morning to get him ready.” They manage the rest of the time among themselves. But she admits that she would not be able to do this if she still had kids at home.
“I think what motivates me is that I think this is my duty towards my parents,” says Mala. “With my father’s situation, for my mom to be shouldering that 24 by 7 by herself, even with caregivers and support people – living with a patient with dementia is very challenging.”
Mala soon realized that help only during the week was not sufficient. “The weekend caregiving – we just started doing that,” says Mala. “A couple of months back, we made a conscious decision that we should do that because otherwise, we can’t do anything together. We can’t do hikes, we can’t go out.”
“Learning ways to be a better caregiver involves taking care of yourself,” says Dr. Thompson because depression is reported as the next most common feeling among caregivers.
Filial piety has been the expectation for millennia in many Asian cultures but may not be as heavily endorsed by the younger caregivers explains Dr. Thompson leading to conflict in the family between the multiple roles that they have to fulfill.
Compassion and Respect for the elders
Dr. Thompson has spent over 30 years working with the Chinese and Vietnamese communities. Some of those cultural mores are very similar to South Asian families as well where living in a multi-generational home is the norm and elders have a valuable and respected role in the household.
“To give people with Alzheimer’s a sense of the importance of their role” is significant, points out Dr. Thompson. An example for women might be cooking because it was an important part of their lives.
Being able to prepare the family dinner – they might put the rice on the stove and it burns. It’s not really edible or they put the wrong ingredients together, and so the dinner was not successful, says Dr. Thompson.
“However, rather than become frustrated and irritated and kind of say, what am I going to do now? A more helpful approach is to figure out what the person can still do. How can they contribute to the family dinner? It gives them a sense of meaning and value if you can find ways that are safe and appropriate.”
So for example, maybe the person could make the rice with some supervision with somebody helping or they could set the table or they could prepare some other part of the meal that isn’t as complex or doesn’t involve the stove.
It’s remarkable the difference it makes when the older individual with dementia feels included in the family versus not included explains Dr. Thompson.
This is difficult as Mala knows firsthand with her father. “His communication, his speaking is getting a little more garbled and more difficult to follow. There are moments of lucidity. Sometimes we can catch a word. We’re thinking, why is he saying this? What is he saying? Then we try to put two and two together. You have to keep the conversation going.”