Here are strategies to support caregivers
45 million people have dementia worldwide
November is Alzheimer’s Disease Awareness Month. The Alzheimer’s Association estimates that over 6.7 million people have Alzheimer’s a form of dementia in the U.S., which impacts memory and function. The National Institutes of Health says older adults between 85- 89 and more than half of older adults receive help from a caregiver. November is also National Family Caregivers Month. Our guest contributor shares what it’s like to care for her father, and how to alleviate the caregiver’s burden.
By Guest Contributor Fatema Haque
I am a caregiver for my father, who has Lewy Body Dementia (LBD), a brain disorder that affects memory, movement, behavior, and mood. Like Alzheimer’s Disease, people with LBD can experience memory loss and confusion. Additionally, they are at a higher risk of falling, experiencing tremors or muscle stiffness, and having disrupted sleep.
As the disease has progressed, I’ve taken on more and more of my dad’s responsibilities: I pay his bills, schedule his doctor’s appointments, and manage his medications. Nowadays, I also provide constant reassurance, especially when the illness warps his reality or when he gets lost in time and place.
Since becoming a caregiver, I’ve learned that many others around me have been doing the same, often silently. You probably know someone who is a caregiver. Maybe your mom took care of your grandparent(s), maybe you’re a caregiver now or you anticipate being one soon. Maybe you have friends who are already caregiving for their parents.
And there’s a very good chance that the caregivers you know are women.
Nationally, 58 percent of caregivers are women, according to the CDC. I imagine that in Bangladeshi American communities, that number is at least 90 percent. This is for lots of reasons, the main one being gendered expectations of women that makes caregiving obligatory. We shouldn’t take this service for granted, however. The CDC says, caregivers provide “an essential public health service,” in the form of over $470 billion per year of unpaid labor. At the same time, the health and wellbeing of caregivers is at risk and is anticipated to become a public health issue, with higher risks for depression, anxiety, heart disease and/or stroke. This is because caregivers spend so much time caring for others, often neglecting their own health.
We should support the caregivers in our life. Supporting caregivers doesn’t require much, but it does require consistency.
Here are a few tips to support the caregiver in your life:
Learn about the illness.
One of the most time-consuming and difficult things for me as a caregiver has been dealing with family and friends who don’t know much about the illness. I’ve learned that in the Bangladeshi community especially, Alzheimer’s and dementia is not often talked about. People are shocked to learn about some of the symptoms including dizziness, paranoia, confusion, and memory loss. Or that it’s a progressive illness that will only get worse over time. This lack of understanding often leads them to suggest unhelpful and frustrating “solutions,” such as, bringing him to Bangladesh and he’ll get better, feed him pomegranates and that’ll help, and don’t worry, he’ll get better soon.
Learning about the illness will make it easier for you to be there for your loved ones.
Offer caregivers support.
Sometimes, caregiving becomes so all-consuming that it’s difficult for me to know what I need. In those moments, when someone asks what they can do for me, my mind draws a blank. It’s most helpful when I’m offered options instead: Can I bring over some food? I’m here to listen if you’d like to talk. Want a distraction? Here’s a funny TikTok I saw (but no videos about people with dementia, please).
Caregiving can be lonely and isolating in nature. Anything that can help caregivers maintain connection is helpful. If your friend can’t go out to restaurants like you used to, offer to come over and spend time with them in their home. Or, if that’s not possible, have a phone conversation instead. If you know other people who are caregiving, connect your friends with each other.
Sometimes, it’s impossible to find time to do some essential things, like go to a dentist’s appointment or get the car’s oil changed. If you know someone is struggling to find time or manage multiple responsibilities, offer to help them with it. Maybe you take the car for an oil change or spend time with their loved ones while the caregiver runs errands.
Spend time with older adults to enhance their quality of life.
The National Poll on Aging found that one in three adults feel lonely. They often feel isolated and the lack of companionship “can adversely affect mental, cognitive, and physical health, general well-being, and even longevity.” One way to combat the detrimental effects of loneliness is to spend quality time with loved ones.
My dad lights up when his friends visit him. He spends the rest of the day in a brighter, more agreeable mood, which in turn helps me support him. I don’t have to fight with him to stay inside the house instead of wandering outside or taking his medicine on time instead of delaying it. And because he was awake for a longer portion of the day, he sleeps better at night. Keeping him company is immeasurable support.
Help caregivers create new memories of their loved ones.
It’s becoming harder to remember what my dad was like before his illness. I get sad thinking about it, so I avoid it. But I love it when others share memories of him. I’ve learned so much about my dad’s life since his illness through his friends and community who come over to visit him. They tell me stories about him. For instance, I always knew my father had an entrepreneurial spirit, as he always found small ways to earn extra cash. However, I didn’t know that in the decades before my birth, my father started numerous businesses in Bangladesh, including a hotel, a general store, a construction company, and a restaurant! Such stories are precious, and they brighten not only my dad’s day, but also my own.
Advocate at the policy level and take action.
Individual support is incredible in the short term, however, many caregivers need real changes to take place. This includes financial, mental health, and educational support. Caregivers who work outside of the home often have to quit their jobs or reduce their work hours to care for a loved one. This in turn reduces how much healthcare they receive through their employer. Many cannot afford therapy or access it. Caregiving is also a skill. I’ve had to purchase books and other materials to understand my father’s illness and how to best support him, but others may lack access to educational resources.
The CDC estimates that by 2030, 73 million people in the United States will be 65 years or older and, “many will require daily assistance from at least one caregiver to maintain quality of life, independence, and physical and social well-being.” Thus, supporting caregivers must be an urgent policy matter at the state and national level, and we must ask our elected officials to center this in their campaigns. The Family Caregiver Alliance has some tips on how to get started in this advocacy work.
There is no easy way out or a fast-forward button when it comes to caregiving. We live through it, moment by moment. But those moments don’t have to be stressful all the time. With community support, something that can be as lonely as caregiving can become lighter and easier.
After all, the chances of us all experiencing this at some point are pretty great.
Fatema Haque is a Bangladeshi American writer, educator, and fiber artist. You can find her work at fatemawrites.com and follow her on Instagram: @writesfatema. If you’re interested in joining a Bangladeshi American caregiver support group, email her at: haque.fatema@gmail.com