Dementia in South Asian Americans: Reflections from a High Schooler

My name is Anshi Purohit and I am a high schooler from Maryland, USA aspiring to be a psychiatrist. As a student who is passionate about mental health advocacy, I wanted to bring attention to the discrepancies in treatment for Alzheimer’s and Dementia among South Asian communities by sharing personal experiences, research analysis, and the perspectives of other high schoolers. Stigma and systemic inequalities remain rooted in the healthcare system when treating individuals across different cultural backgrounds, and my article hopes to spread awareness about these experiences.

Disclaimer

*All included quotes in my article were included with the consent of high school students who have experience interacting with or family connections with individuals afflicted by Alzheimer’s or Dementia. They agreed to be interviewed for the purpose of this post to raise awareness about dementia amongst the public.


The most poignant memory I have of my great aunt (we called her Baddhi Dadi – which means “oldest grandmother”) is when she brought out a floral glass tray of homemade jelly filled cookies to share between the two of us. I loved coming to her home in the early morning, treasuring the dollops of jelly and sugary-sweet chai on my tongue as if they were a shared secret.

Bhaddi Dadi

My great aunt was compassionate and beautiful. She had the brightest smile and the kind of laughter that could brighten anyone’s day.

However, my Baddhi Dadi also had Alzheimer’s disease. Before I fully understood the scope of her condition, I found myself smiling every time she complimented my bird-shaped earrings in a different way several times. We took a picture together where she is wearing those earrings, her arms enfolding mine in a warm embrace. Her compliments and affection were always genuine.

My regrets are not doing the little things like holding the door for her after she stepped out onto her porch or holding her wrinkled palm when she forgot where she was even though we were standing in her garden. Not sharing my confusion and concern with my relatives created a lapse in understanding, and my younger self often couldn’t wrap my head around her daily struggles. 

I was in America when my great aunt passed away in her sleep. I heard her passing was painless, but her absence jarred all of us. I remember realizing that I had never known my Baddhi Dadi during a time when she was not waging an internal war.

Somehow, I hadn’t been able to comprehend the direness of her illness or how her condition impaired her from being able to recognize her family members. I remember my parents explaining Alzheimer’s and dementia, about memory and loss and innumerable sacrifices. 

Weeks after my great aunt’s passing, I pored over research articles and confusing infographics, unsure what I would gain from the excessive hopelessness conveyed through elaborate lists of symptoms. I sought to understand how we could prevent this from affecting anyone else’s older relatives.

Left to Right: Anshi Purohit, Baddhi Dadi, Sonal Purohit (mother), Saanvi Purhoit (sister). Image taken in 2018

In South Asian communities, it is common for close family members—such as a child, first cousin, or parent—to care for individuals with chronic illness. Baddhi Dadi’s daughter—my aunt—is a gynecologist and served as a caregiver for my great aunt. Because South Asians tend to have strong familial bonds and pay respect to their elders, collectivism and responsibility play a large role in caring for aging relatives [1]. 

Being responsible for the day-to-day care of an individual with Alzheimer’s places a burden on caregivers expressed through stress, compromised mental health, and financial trenches. As described in the American Journal of Nursing, “dementia caregivers report higher rates of depression and stress than the general population.” 

However, stigma surrounding Alzheimer’s can be prevalent and may result in a late diagnosis or a misunderstanding of what is happening to the patient. A qualitative research study conducted via a meta-synthesis of seventeen papers revealed that a critical number of South Asian families of Indian background believed dementia to be a symptom for old age or punishment by a God [2]. 

“An elderly lady at my family’s senior daycare has dementia…her family doesn’t associate with her and she instead relies on the daycare for providing her meals,” US high school student Nandi Patel said. “The stigma may be because it is not shown in media often or because women are seen to be all-encompassing caretakers of the family.”

Without a caregiver’s support, Alzheimer patients may suffer increased burdens. Caregivers are the primary liaisons between doctors and patients as well, so creating the framework for clear communication in all settings is imperative for the Alzheimer patient’s well-being. Being a supportive and empathetic caregiver requires dedication and perseverance.

Taking care of someone with a chronic illness is both emotionally and physically taxing; according to the National Institute of Health (NIH), the prevalence of caregiver burden in the United States alone is about 32% as of 2020. Today,  1 in 4 Americans are caregivers for persons with chronic illnesses or special needs. 

“American healthcare systems often focus more on the medical and physical aspect of therapy but it lacks the mental support, which can be isolating,” Patel said. “However, Indian centers, often run with less funding, emphasize community support and healing together without excessive hospital and therapy use.”

Though caregiving is often done out of necessity alongside love and devotion, caregivers should not have to compromise their basic needs and mental stability.  Compassion burnout is present in many caregiver experiences, and while the depth of their sacrifices and dedication is immeasurable, caregivers deserve to care about themselves. 

Approaching dementia care is layered and multifaceted; there is no simple solution to debunking stigma and tackling systemic issues, but through addressing the intersectionality of Alzheimer’s as a whole, anyone can broaden their perspectives to spread awareness.

If someone you know is in need of immediate support, the United States 24-hour hotline for Alzheimer’s/Dementia care is 800.272.3900. Click here to find out where to go for information in the UK.

Written by Anshi Purohit, a high school student and mental health advocate from the United States, mentored by Dr. Karan Jutlla. 

Bibliography in MLA (8) Format

  1. Gill, Navjot. “Navigating the Complexities of Caregiving for Dementia in South Asian Communities.” The Conversation, 14 Sept. 2023, theconversation.com/navigating-the-complexities-of-caregiving-for-dementia-in-south-asian-communities-212426.
  2. Hossain, Muhammad, et al. “Awareness and Understanding of Dementia in South Asians: A Synthesis of Qualitative Evidence.” Dementia, vol. 19, no. 5, 8 Oct. 2018, p. 147130121880064, https://doi.org/10.1177/1471301218800641.
  3. “Asian Americans and Pacific Islanders and Alzheimer’s.” Alzheimer’s Disease and Dementia, 2021, www.alz.org/help-support/resources/asian-americans-and-alzheimers.
  4. “Dementia in the Asian Community: Prevalence, Stigma, and More.” Www.medicalnewstoday.com, 13 Sept. 2021, www.medicalnewstoday.com/articles/dementia-in-the-asian-community#stigma-impact. Accessed 6 Apr. 2024.
  5. https://www.alz.org/media/Documents/alzheimers-facts-and-figures-special-report.pdf

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