My grandma was diagnosed with dementia when I was in college. She started mixing up the stories she had told me growing up. Her doctor gave her medication and told her it may or may not help.

Over the years, as a family, we suffered ambiguous loss as grandma was losing her ability to cook, move independently, shower on her own, control her bladder, amongst other things. Like most Asian families, we took turns helping her with these increasing disabilities, while learning how to communicate in her disease/stage-appropriate language. One day, as I was helping her bathe, she cried and said, “why are you helping me with this, I bathed you.” I responded, “you’re right you did, so now it’s my turn.”

When grandma’s paid caregiver moved, my mom decided to retire early to take care of her at home. Given how emotionally and physically draining as it was, mom often said “I’ll die before her.” I’d give mom a break and I’d take grandma to spend one week at a time with us in Petaluma.

This was an extremely arduous journey for us, the progression of the disease revealing new challenges at every turn, which required us to learn and adapt. This is a journey not unlike every caregiver and family with a loved one suffering from dementia.

While caring for our elders is a cultural touchstone for many AAPI communities, the challenge of older adult care and managing a multigenerational household can be overwhelming for anyone.

When a parent, grandparent or other loved one begins to show a new pattern of forgetfulness, lost items or confusion with time – possible early signs of Alzheimer’s Disease and Related Dementias (ADRDs) – the stress for caregivers is compounded. The loved one, often aware of their increasing lapses may also fear their loss of control and the stigma of aging and becoming a burden to their family.

Now, the State of California is helping people meet these challenges through the Take on
Alzheimer’s campaign. The first-ever statewide campaign of its kind, it aims to shift perceptions and reduce stigma around Alzheimer’s.

For Asian American and Pacific Islander (AAPI) populations the message is critical. We know that almost half (46%) of Asian Americans say that they are concerned about developing Alzheimer’s or dementia and 90% worry about being a burden on their family if they develop Alzheimer’s disease. Moreover, we know that stigma can play a role in limiting the help families receive. Too often AAPI families experience shame that deters them from seeking information, assistance, or a formal diagnosis, until the disease has progressed to later stages.

Honest and empathetic conversations with friends, loved ones or a clinician can be critical to improving outcomes. The earlier ADRDs are diagnosed, the better it is for the loved one with the disease and their caregivers. Take on Alzheimer’s hopes to make conversations about symptoms, diagnosis, and caregiving commonplace. We want people to know that first and foremost, there are things we can do to take care of our brain health before and after diagnosis.

We also want to shift perceptions so that people understand that Alzheimer’s is a neurological disorder and not a psychiatric disorder. There are new treatments and considerable research in this area, and we expect care and therapies to get even better.

Why is California taking on Alzheimer’s now? According to the 2024 California State of Public Health report, Alzheimer’s is now the second leading cause of death in California, affecting over 690,000 individuals across the state. California is expecting the number of residents living with Alzheimer’s to double by 2040.

By identifying when memory loss disrupts your loved one’s daily life or tasks, you can discuss symptoms with a doctor and take action. It’s ok to be afraid at this step, but open
communication leads to better outcomes and increased support for the affected loved one.

California’s Take on Alzheimer’s campaign hopes that by fighting the stigma associated with Alzheimer’s, people can get the resources and assistance they need sooner. Especially in the early stages, eating a balanced diet, exercising, getting good sleep, and staying socially connected help preserve quality of life.

With early screening and detection, people with ADRD, along with their family members, have the chance to make the choices that are right for them. Families can also take critical steps to create the necessary legal and financial plans for their affected loved one. While these conversations may be difficult to start, they are critically important to ensuring your loved one’s needs and wishes are met.

Ready to start the conversation? Visit TakeOnAlz.com for information, tips and resources.

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Dr. Canio is the Regional Dementia Care Clinical Lead for Kaiser Permanente of Northern California

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