Stigma around Alzheimer’s disease — the second-leading cause of death in California — prevents many communities from getting help
by Selen Ozturk
Stigma around Alzheimer’s disease — the second-leading cause of death in California — prevents many communities from getting help.
In response, 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 spot the disease and what to do after a diagnosis.
At an Ethnic Media Services briefing, CDPH, Alzheimer’s experts and community workers statewide shared what they’ve learned about addressing taboos around Alzheimer’s and related forms of dementia in communities including Latino, Black, AAPI and LGBT+.
Taking on Alzheimer’s
The disease is the leading cause of death for adults 85 and older in California, the state with the largest concentration of older adults — “and as our population continues to age, we expect these numbers to grow,” said CDPH clinician Dr. Lucía Abascal. Even within such a widespread disease, “big disparities exist. Communities of color are more likely to develop it.”
A recent CDPH report found that by 2040, the number of California adults living with the disease will have increased by 127 percent, or nearly 1.6 million.
Take on Alzheimer’s, the first-ever statewide Alzheimer’s campaign, aims “not only to raise awareness that this disease is a big problem and getting bigger, but also to shift misperceptions around it by working with community organizations statewide,” she continued.
“The earlier this progressive disease is diagnosed, the more doors it opens to combat its impacts, but many fear the stigma a diagnosis comes with,” Abascal added. “Alzheimer’s is not a person’s fault and it’s not a normal part of getting old — it’s a disease and must be treated as such by linking people to care. We don’t want communities to wait 10 years to get the help they can get right now.”
Asian American stigma
“There’s often much stress involved with care in Chinese and Vietnamese communities, because caregivers — typically daughters aged 40 to 60 — are sandwiched between caring for the parent as well as their own children,” said Dr. Dolores Gallagher Thompson, professor emerita at the Stanford University School of Medicine.
“A common feeling reported by Asian caregivers is depression, partly associated with filial piety,” said Thompson, who has worked with Asian caregivers for over 30 years. “Younger and middle-aged caregivers may not fully endorse this traditional concept, because it involves conflict in juggling multiple roles … to treat individuals with dementia, you need to treat the family as a unit, because the disease affects everyone.”
“Educating the family that dementia is a neurological condition, not a psychiatric condition, is key,” she continued. “In traditional Chinese writing, the character for ‘dementia’ is the same as that for ‘crazy,’ and this attribution often escalates the stigma. To fight it, we teach caregivers how to respond to problem behavior in ways less stressful for everyone involved, and how to include them in the family by focusing on what they can still do — if they can’t make rice alone, they can make it supervised or wash the dishes.”
“Often unique to the experiences of Vietnamese communities is war-associated PTSD,” Thompson added. “This can make seeking and giving care even harder than it already is, and our programs for the Vietnamese community encourage them to share their experiences, how they’ve coped with them, and how it might impact their caregiving.”
Latino stigma
In the Latino community, “stigma is alive and well,” said Dr. María Aranda, USC professor of social work and gerontology, and executive director of the USC Suzanne Dworak-Peck School of Social Work. “Memory loss is typically a topic that does not make dinnertime conversation.”
“There’s societal stigma, where there’s a high price put on people’s intellect and ability to compete, alongside a personal fear that the person with the diagnosis will be treated differently,” she continued.
“This stigma prompts a ‘cocoon experience’ where Latino families protect the individual against more stigma so much that they miss out on an early diagnosis of dementia, and getting the care they need,” said Aranda.
“Due to less access to timely, accurate information to prevent and manage memory declines, especially among monolingual Spanish speakers, there’s a polarized spectrum where Alzheimer’s is seen as part of a severe psychiatric disorder like psychosis on the one hand, and as apart of normal aging on the other,” she added. “While age is the biggest risk factor, it doesn’t mean everyone who reaches a certain age will have it.”
LGBT+ stigma
Out of an estimated 2.7 million LGBT people in the U.S. over the age of 50, 7.4 percent pf lesbian, gay, and bisexual older adults have dementia “and that number is increasing,” said Lunae Chrysanta, training manager at Openhouse SF, which provides caregiver training and community support for LGBT individuals.
“The same elders who were pathologized for most of their life — from the Lavender Scare of the 50s, through the civil rights movements of the 60s and 70s, to the collective trauma of the HIV and AIDS pandemic in the 80s and 90s — may feel, as they age, like they’re losing the independence that they fought so hard for,” he continued.
Alongside stigma around Alzheimer’s itself, “fear of discrimination stops many LGBT older adults from seeking the care that they need,” Chrysanta explained.
An estimated 40 percent of LGB and 46 percent of transgender older adults don’t disclose their sexual orientation or gender identity to doctors because they fear it will affect quality of care.
In a New York study of over 3,500 LGBT older adults, 8.3 percent reported neglect or abuse from their caregivers because of their sexual orientation or gender identity.
Because LGBTQ elders often find chosen families after facing rejection from biological families, “family structures in the LGBT community often look different than cisgender and heterosexual family units,” Chrysanta continued.
“Many of our elders are aging at the same time as their loved ones and find themselves being caregivers while also needing that support themselves,” he said. “For us, developing intergenerational mental health programs and 110 units of affordable housing has been key to reducing barriers to support. Our elders with dementia shouldn’t feel like they need to hide their true selves again by going back into the closet.”
Black stigma
Older Black Americans are twice as likely to have Alzheimer’s or another form of dementia compared to older whites.
Both stigma and the belief that memory loss is a natural part of aging prevents them from seeking the care they need, said Petra Niles, senior manager of education & outreach for African Americans at Alzheimer’s Los Angeles.
Although 65 percent of Black Americans say that they know somebody with Alzheimer’s or dementia, half report experiencing discrimination while seeking care for someone who has it; only 53 percent believe that a cure would be distributed fairly, without regard to race or ethnicity; and 55 percent think that significant loss of cognitive abilities is a natural part of aging rather than a disease.
“It’s important for this community to have a good relationship with a physician they trust, who will respond to their concerns and not just say that dementia is a normal part of aging,” explained Niles. “There are warning signs like memory loss, getting lost, issues with finances, repeating stories. You shouldn’t have to wait for these symptoms to worsen before getting help.”
“Alzheimer’s stigma not only prevents our community from getting help, but from sharing that diagnosis with friends who can help — and less help adds on stress for the caregiver,” she added. “We’re hearing about many who have died in the throes of caregiving. As long as we don’t stop the stigma, even trying to get help can endanger your health.”
