Stopping The Stigma Of Alzheimer’s In The South Asian Community

By: Payal Sawhney, Founding Executive Director, Saahas for Cause

In my culture, we believe in karma. The belief is largely shared within the South Asian community. Because karma says that the sum of our past actions can be the cause of our current situation, it leads us to blame ourselves when something bad happens. This is one of the reasons why diseases like Alzheimer’s and related dementias (ADRDs) are so stigmatized within our community – somehow, they are our own karma. To start shifting this cultural perspective, we need to provide resources and information to our community about what Alzheimer’s disease is, why it happens, what the signs are, and that a diagnosis is not anyone’s fault.

Alzheimer’s is now the second leading cause of death in California. Currently, more than 690,000 individuals across the state are living with Alzheimer’s, and that number is projected to double by 2040.1, 2, 3. This is why the California Department of Public Health’s Take on Alzheimer’s media campaign is crucial to our current and future aging population. This campaign is the first-ever statewide campaign of its kind aiming to drive behavior change by educating Californians about the prevalence of Alzheimer’s, and to provide easy and accessible informational resources to better understand relevant risk factors, combat fear and stigma and improve overall brain health.

It is not uncommon for conversations around diabetes, obesity, and heart attacks to be held openly in social settings, but there’s rarely conversations about mental health, brain health, or the impact or risk these can have for developing Alzheimer’s. When it comes to health, many South Asians ignore anything above the neck and don’t consider the brain an important part of the body. The South Asian community is also very resistant to preventive medicine and will ignore signs and symptoms because they don’t want to hear a clinical explanation.

I want our community to know that there is no shame in receiving a diagnosis of ADRDs. That is one of the key messages of the Take on Alzheimer’s campaign, and we hope it leads to more screening and early detection. The earlier ADRDs are diagnosed, the greater chance someone has to improve or extend their overall quality of life while managing their condition, which is also helpful for loved ones with the disease, their family, and their caregivers.

However, stigma plays a large role in preventing people from getting screened early and receiving a diagnosis. Even families feel it is a huge stigma to have a family member suffering from a brain issue. It is important to educate our South Asian Community to help them understand that the sooner you take action to address ADRDs with your loved one and their healthcare provider, the better position you are in to provide the attention and care they need and the more time you have to plan ahead.

After a diagnosis, our older adults are at high risk of being depressed which is why educating those living with Alzheimer’s and their family members is crucial. There is a huge need for communities like ours to create social settings that stimulate the brain because if older adults with Alzheimer’s are left isolated, we know that the disease can progress even faster. Saahas for Cause provides this through older adult wellness groups that focus on physical, mental, financial, and spiritual health. Called Mauj Masti Sehat (which means fun, relaxation, and health in Hindi), we work to incorporate all three of these elements with every session, carefully curated by professors, psychologists, and social workers.

A senior that has attended these sessions asked one day if it was okay to bring his wife next time. He eventually shared that he suspected his wife was showing signs of Alzheimer’s. When she started coming to the group, we learned she was eligible to become a U.S. citizen years ago but because of her memory issues she never applied. This was a big misunderstanding because there are provisions for people with cognitive impairment and memory issues and our staff were able to walk her through the process to help her obtain her citizenship. There is so much information that people don’t know because they are afraid to ask. It not only took a long time for her husband to bring her along, but he also felt like he needed to ask for permission to do so. That’s the intensity of stigma.

We need to talk more about these issues connected to our brain health to help break the stigma. To learn more and to understand ways to reduce risk, support others, and take charge of brain health, visit TakeonALZ.com.

1. CDPH “California State of Public Health, Full Report 2024”

2. Alzheimer’s Association | Northern California and Northern Nevada Chapter

3. Alzheimer’s Disease and Related Dementias Facts and Figures in California: Current Status and Future Projections

Hope here, despair there: For Indian Americans, heartbreak over the homeland

There have been such joyful days lately, when the COVID-19 vaccine clinics that Payal Sawhney helps organize at a Hindu temple in Norwalk are bustling, with thousands of people getting shots.

For the record:

3:03 p.m. May 16, 2021An earlier version of this article said Payal Sawhney’s mother-in-law had tested positive for the coronavirus. She was exposed but did not test positive.

Sawhney’s mother, in the southern Indian city of Hyderabad, has COVID-19. Her brother does, too.

In the city of Gurugram, near New Delhi, her husband’s aunt and uncle tested positive for the coronavirus, as did their son and daughter-in-law, and their two children.

“It feels like, being immigrants between two countries, we are on a roller coaster ride, up and down, up and down,” said Sawhney, 44, of Cerritos.

Payal Sawhney, right, and Raji Satish, center, talk about the COVID-19 vaccine with a passerby on Pioneer Boulevard in Artesia.

 

“When it was bad in L.A. , it was good in India. We were at peace, at least, knowing our families back home were OK. Now, it’s getting good here and bad there. It’s just a cycle. It’s not ending for us.”

The homeland is overwhelmed with COVID-19, and many Indian Americans in California, home to more than 500,000 Indian-born residents — more than any other state in the U.S. — teeter between hope and despair. They cheer plummeting coronavirus cases and deaths and enjoy loosened pandemic restrictions here, even as they anxiously check on loved ones in India as it faces one of the worst outbreaks in the world.

“When it was bad in L.A., it was good in India. We were at peace, at least, knowing our families back home were OK. Now, it’s getting good here and bad there. It’s just a cycle. It’s not ending for us.”

— Payal Sawhney

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In the temple courtyard, Sawhney — president of Saahas for Cause, a nonprofit that supports South Asian immigrants — watched people during their 15-minute waiting period after receiving their shots.

“It’s so beautiful,” she said of the clinics, which her organization coordinates.

There are some Saturdays the clinics are so busy that she goes home with an aching back, but a smile on her face. Other days, she walks through the Little India neighborhood in Artesia, trying to persuade people to get their shots, like she did in January.

Sawhney’s mother, a 65-year-old widow, was living with her in Cerritos when the pandemic began in March.

“We kept her in the house,” Sawhney said. “That really got to her. Her emotional health. Her mental health.”

By the fall, case numbers were starting to spike in L.A. County, and the situation seemed fine in India, where Sawhney’s brother’s wife had just had a baby. In November, her mother boarded a flight.

“We were nervous here,” Sawhney said. “We were telling her, ‘Don’t invite people! Wear a mask!’”

But people there felt the threat had largely passed, her mother told her.

Her mother, who got her first Covishield shot about a month ago, was between doses when she tested positive. She is staying with Sawhney’s brother, a Hyderabad hotel manager, who was also between shots when he got COVID-19, Sawhney said. His wife and 7-month-old son have not gotten sick, but they are isolated in the house.

Sawhney’s mother-in-law, also a widow, was in India most of last year. In November, she had a stroke, and Sawhney and her husband brought her to California to take care of her.

“The same saga happened,” Sawhney said. “She was homebound, lonely. That claustrophobia, the loneliness, the depression, the anxiety, all of that kicks in.”

In early April, she had another severe stroke. Her left side was paralyzed, and she started using a wheelchair. Her sister, who lived nearby, had been helping her, until she and everyone in her household tested positive for COVID-19.

Earlier this month, Sawhney’s mother-in-law flew back to California. She had to test negative for the virus before boarding the plane.


Raji Satish, left, and Payal Sawhney, second from left, talk about the COVID-19 vaccine to passersby on Pioneer Boulevard in Artesia. “It feels like being immigrants between two countries; we are on a roller coaster ride …” Sawhney said of the differing COVID conditions in California and India.

Sawhney, a mental health clinician, and her husband, a physician, get calls at all hours of the day and night, from the U.S. and India.

Sawhney is on a WhatsApp group chat with classmates from her high school in the city of Pune.

“We were all sharing our school-time stories,” she said. “Happy, funny, silly, naughty story. Very soon, our group’s atmosphere changed to one of grief and sorrow. The naughtiness and laughter is gone. We are all just praying for each other.”

Times photographer Irfan Khan and researcher Scott Wilson contributed to this report.

Original Article

The stories shaping California

Hailey Branson-Potts

Hailey Branson-Potts is a Metro reporter for the Los Angeles Times who joined the newspaper in 2011. She grew up in the small town of Perry, Okla., and graduated from the University of Oklahoma.

 

California’s South Asian community rallies support and supplies for Indian families amid COVID crisis

On Tuesday, May 12, 2021, India reached a new COVID-19 death toll. In just one day, more than 4,000 people died, bringing the country’s total death toll to more than 250,000. Mass cremations are filling cities with smoke, hospitals are overwhelmed, and many people of Indian origin in the U.S. are watching in horror and are trying to help.

That includes the nonprofit Saahas for Cause. They’ve identified different organizations in Mumbai and New Delhi to deliver food and other groceries to families in need. The group is also hosting community support circles, where Indians living in LA and Orange County can discuss their pain, grief, and shared resources.

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Saahas For Cause- Encourages- Research, Innovation

Saahas for Cause is very excited to showcase the outcomes of last two years through several posters and panel presentations done at 5th annual South Asian Mental Health Consortium(SAMHC) conference. For Saahas, the clinical efforts and research always goes in sink. The posters are the reflection of us being data driven from the very first day.
We are very proud of our youth members and volunteers who have done innovative projects to address current issues that are faced by our community.

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Saahas For Cause- Pandemic edition

Saahas for Cause, a 501(c)(3) non-profit that serves the Indian American and larger South Asian community living in Los Angeles County and Orange County by educating, empowering, and enabling the immigrant community to improve their quality of life through its four chapters, is partnering with the Los Angeles County Department of Health Services to slow the spread of COVID-19 in the community.

Seminar hosted by Saahas for Cause- Effects of COVID-19 on Physical and Mental Health

‘Saahas for Cause’, along with GOPIO-IE and COLAIAPA, hosted a seminar highlighting the mental and physical health effects of COVID-19 on March 7th, 2021. The Seminar featured Ting Qin, Associate Marriage & Family Therapist, and Dr. Vaishali Saste, M.D., Hematology-Oncology. The speakers discussed things to consider as we adapt to the “new” normal. Guest speakers discussed possible protective measures, practicing mindfulness, stress management, and the safety of the community.

The Coronavirus pandemic has been a redefining moment of our time. Many communities are suffering under an almost intolerable burden of loss. But the pandemic is much more than just a global health crisis. The pandemic has taken a toll on our emotional and mental health. The South Asian community considers mental health a silent and taboo topic to discuss putting additional stress on the community to cope with the pandemic.

Organizations such as Saahas have observed an increase in the number of people battling loneliness and separation anxiety due to limited interactions in the pandemic. Youth and older adults are being hit the hardest by this pandemic and current restrictions.

On the topic of mental health, Ting Qin presented some staggering data. “During late June, 40% of US adults reported struggling with mental health or substance use.” Qin says some factors causing the uptick in mental health or substance use include COVID-19 threat, job security, financial pressure, and aggravated pre-existing issues. After a COVID-19 diagnosis, nearly 1 in 5 people are diagnosed with a mental health condition. The road to recovery is long, but it is achievable through practicing mindfulness, monitoring and managing stress, helping others and selves to seek help from experts and professionals.

The road to recovery would only be possible if we took precautionary measures even as COVID-19 case rates fall.

Dr. Saste focused more on taking measures to keep everyone protected till everyone is vaccinated. With the approval of the Johnson and Johnson vaccine, the community is hopeful and looking ahead towards a return to a normal life. Dr. Saste emphasized wearing masks correctly, washing hands frequently, and maintaining social distance. She addressed some common myths and conspiracy theories about vaccines. Dr. Saste also briefly outlined what life would look like after mass vaccination.

With more than 40 participants, many actively participated in the Q&A session and appreciated the effort of Saahas for Cause, GOPIO-IE, and COLAIAPA for giving a platform to address such important topics during this crucial time.

About ‘Saahas For Cause’:

Saahas for Cause is a 501(c)(3) non-profit that serves the South Asian community living in Los Angeles County and Orange County by educating, empowering, and enabling the immigrant community to improve their quality of life through its four chapters.

Saahas is also actively engaged in various community health and outreach events. One such project is working with the Los Angeles County Department of Public Health to serve the South Asian community impacted by the COVID-19 pandemic through resources and prevention.