Alzheimer’s disease is a growing public health crisis and it doesn’t discriminate. It affects people of all races, sexes, genders, and ethnicities. But age is the common risk factor. Studies show people who are 65 or older are 10% more likely to get Alzheimer’s while those who are 85 or older are 50% more likely to get it, regardless of race.
But cultural beliefs about mental health conditions like Alzheimer’s can also affect how and when one gets help. For example, if you forget your keys or lose your train of thought in the middle of a conversation, these are early signs of the condition. Whereas research shows that more than half of Black Americans, Hispanic Americans, and Asian Americans are more likely to write off such behavior as natural and unavoidable symptoms of aging. This can lead to delay in diagnosis and treatment and might worsen the outcome in the long run.
Here’s a closer look at how different cultural beliefs might affect Alzheimer’s disease care and management.
What Are the Common Cultural Beliefs About Alzheimer’s?
Cultural beliefs about Alzheimer’s vary widely between different races and ethnicities. And there are many factors that affect it, such as:
- Tendency to view Alzheimer’s signs as a normal part of aging or “old timer’s disease”
- Lack of awareness and education about Alzheimer’s and other mental health conditions
- Shame and guilt about mental health conditions
- Distrust in Western medicine, doctors, or clinical trials
- Respect for elders and their choices or wishes for as long as possible, usually without question
- Downplaying signs of mental health decline or behavioral changes
- Not seeking medical help unless it’s an emergency
- Not sharing private family concerns with strangers
- Looking to religious leaders or institutions for support and guidance
- Using religion or prayer to cope with caregiving-related stress
How Can Cultural Beliefs Affect Diagnosis and Treatment of Alzheimer’s?
Among several societies of color, close family members are often the main source of support for those who start to have Alzheimer’s symptoms. Caregivers may rely on their cultural perspectives to make care-related choices.
People’s sense of self, their cultural background, religious practices and limitations, social norms, and expectations from their community can play a role. It may inform people how they might feel about Alzheimer’s as well as their response to it.
African Americans. Black people are twice as likely to get Alzheimer’s as white people are, and more than 6 in 10 members of the Black community know someone with dementia. Yet there tends to be a gap in education and awareness about the condition.
Research also shows that Black people may not trust medical institutions due to historical discrimination and culturally insensitive treatment by medical professionals, and have a general fear of being used as “guinea pigs” in clinical trials.
Hispanic Americans. While research is limited, Hispanic Americans are more likely to develop Alzheimer’s than any other racial or ethnic group. Due to strong family ties, when elders within the community start to show signs of dementia, it’s mostly thought to be aging. And close family, usually a female relative, tends to take over the role of caregiving at home for as long as possible. This might delay diagnosis and proper care.
You may also face cultural and language barriers when you try to get health services. In fact, 9 out of 10 Hispanics say they need doctors to carefully consider and understand their ethnic background and experience when they look for care.
Asian Americans. If you’re a member of this community, you’re less likely to get Alzheimer’s than any other racial or ethnic group. And in general, there’s very little knowledge about Alzheimer’s in most Asian communities. As a matter of fact, most Asian languages don’t have a word to describe the condition. Most descriptions translate to some form of “crazy” or a “state of confusion.”
Plus, like the Black community, Asian Americans fear being used in clinical trials. More than 4 in 10 Asian Americans believe medical research is biased against people of color. In most Asian cultures, filial piety, or respect for elders, is a deep-rooted custom where it’s one’s duty and responsibility to care for parents or close relatives if they get sick. This means most people don’t get professional help till they absolutely need to. This may worsen the outcome.
Native Americans. Older people within the community are called “Elders” out of respect for their age and wisdom. Research shows that as many as 1 in 3 Native American Elders will develop Alzheimer’s or some form of dementia. As Elders are held in great esteem, they’re more likely to get home care if they were to have signs of Alzheimer’s. This might create stress for the caregiver and delay early detection.
Like Asian Americans, Native Americans also don’t have a specific word to describe dementia. Because of the lack of knowledge about the condition and different cultural ideas around the loss of memory, symptoms are often mistaken for normal aging or as a transition to the next world.
Lesbian, gay, bisexual, transgender, and queer (LGBTQ) community. LGBTQ folks are more likely to face unique, additional challenges with Alzheimer’s compared to others. Even though over 2.7 million LGBTQ people have the condition, they often find it difficult to find culturally sensitive care, reliable support networks, and other resources to help them through it.
Issues may include:
- Lack of family support
Such things may delay care or diagnosis, and symptoms might worsen in the long run.
What Role Does Stigma Play in Alzheimer’s Care?
Stigma is when you attach a negative view or belief to something that might be seen as a disadvantage. It’s common for mental health conditions like Alzheimer’s to have a stigma attached to them. It may cause others to use it to discriminate against you, and you might even judge yourself.
Other harmful effects of stigma include:
- Hesitation to get help, diagnosis, or treatment
- Reluctance to place a family member in a long-term care facility
- Lack of understanding and support by family, friends, co-workers, or others
- Bullying, physical violence, or harassment
- Health insurance that doesn't adequately cover your mental illness treatment
- Stress for the caregiver
- Shame, guilt, and self-doubt for you and your loved ones
There’s some level of stigma attached to Alzheimer’s in most cultures, especially Asian American communities. This might make it difficult to have conversations within the family. Caregivers might also put off getting help from a specialist as being associated with a person who has dementia might bring about feelings of shame or worry about what others in the community might say.
To cope with stigma, don’t hesitate to get help from a professional if you need it. You can also join a support group to meet others who might share similar experiences.
What Does Culturally Competent Care Look Like?
In order to better serve different racial and ethnic communities affected by Alzheimer’s and improve access and quality of care, health care providers should plan for culturally competent person-centered planning.
What does this mean? As people of color tend to have unique needs and deeper involvement as caregivers to those with Alzheimer’s, doctors should plan to include several family members or loved ones throughout the treatment plan.
- Spend time getting to know the family and caregivers of those with Alzheimer’s. This might include extended family and neighbors if they’re involved in caregiving.
- Spend time explaining complex medical terms and treatment steps to family.
- Provide examples or stories to explain difficult medical concepts.
- Not push American values during care. For example, doctors have to understand the importance of customs like filial piety, especially if they need to discuss long-term nursing care as an option.
- Understand that dinner invitations or refreshments are offered as a sign of gratitude.
- Avoid ethnic stereotypes. This worsens the distrust in medical care.
- Avoid rushing through meetings.
- Use plain language to explain issues. Use a translator, if necessary, to make sure there’s no miscommunication.
- Work with a community member as a liaison to help fill any gaps in communication and increase referrals.
- Educate the family about the condition. They might pass on the information to others within the community and lower barriers to care.
- Hire medical staff to reflect the ethnic community they serve.
Long-Term Care for LGBTQ With Alzheimer’s Disease
According to research, LGBTQ older people are twice as likely to be single and alone and four times less likely to have kids. If you’re an older adult and you’re unable to lean on children or close family for support and care, you might have caregiver concerns. In such cases, it’s important to establish long-term care goals early.
Reach out to LGBTQ-friendly doctors. It’s important that you or your caregiving partner find a health care provider who accepts your identity, relationship, and treats both you and your condition without any bias. They should make you feel welcome and comfortable to ask questions and get good care.
Check the Gay and Lesbian Medical Association (GLMA.org) for referrals, or ask for a recommendation at your local community center in the area.
Find support. If you or your partner is diagnosed with Alzheimer’s and unable to lean on close family members for support, it’s important to find other sources to help you get through this difficult time. Look for a LGBTQ-friendly support group.
Plan for the future. If you or your loved one is starting to show symptoms of Alzheimer’s and you’re worried about lack of care, openly discuss options about end-of-life care and wishes around long-term care goals. It’s best if you or your partner make these decisions while you’re still able to.
you can establish an “advance directive.” It’s a legal document in which you can specify your preferences regarding these decisions, including end-of-life care. There are two types of advance directives:
- Durable power of attorney for health care. It allows a person to name a person as a health care agent to make decisions on their behalf when they’re no longer able to.
- Living will. In this legal document, you can specify your medical wishes and how you’d like to be treated in certain conditions. For example, you can specify if you want artificial life support to keep you alive.
You can usually establish these documents without the help of a lawyer. But if it’s complicated and you’d like some help, it’s best to reach out for professional legal advice.