As many of you know, my late husband, Joe, passed away with Alzheimer’s Disease. It was a heart-wrenching journey that I faced both as his caregiver and advocate. Alzheimer’s had already struck close to home—his father had also battled the disease—so I am intimately familiar with the devastation it brings. These experiences, coupled with my professional work, inspired me to write Taming the Chaos of Dementia, a book that sheds light on this dreaded disease and provides support for those navigating the tumultuous waters of dementia care.
Alzheimer’s is not just a disease that affects memory; it fundamentally alters how we engage with life. According to the AARP, dementia—of which Alzheimer’s is the most common form—is the most feared condition among seniors, even more than cancer or heart disease. But why does Alzheimer’s evoke such profound fear?
The Devastating Impact of Alzheimer’s
Dementia, particularly Alzheimer’s, robs us of our memories, our identities, and our connections to the world. It attacks cognition, leading to the gradual erosion of basic life skills—everything from remembering a loved one’s name to managing daily tasks becomes a challenge. This loss of self and autonomy is perhaps what makes the disease so terrifying.
On September 21st, World Alzheimer’s Day, we are reminded of the global scale of this crisis. Nearly 7 million Americans are living with Alzheimer's today, and without meaningful intervention, that number is expected to more than double by 2050, reaching nearly 13 million. This isn’t just an aging issue—it’s a looming healthcare catastrophe.
In 2021, Alzheimer's was the fifth-leading cause of death among people aged 65 and older. According to the Alzheimer's Association, 10% of all people over the age of 65 currently live with Alzheimer's, and that number skyrockets to 50% for those over the age of 85. Even more alarming, the prevalence of Alzheimer’s doubles every five years after the age of 65.
A Caregiving System in Crisis
Despite the increasing numbers, there is still no cure for Alzheimer’s. While some medications can slow progression in the early stages, the disease continues its relentless march. Even more concerning is the state of caregiving: our healthcare system, families, and care facilities are woefully unprepared for the future.
Family caregivers, often loved ones without formal training, are overwhelmed by the complex physical and emotional demands of supporting someone with dementia. Memory care facilities, already under strain, face an insurmountable challenge in the coming decades as the number of people needing specialized care far exceeds available resources. Professional caregivers are dwindling, and the financial burden on families continues to grow.
This crisis isn’t on the horizon—it’s here, and it’s growing. So, what can we do?
Building Awareness and Taking Action
The first step in tackling the Alzheimer’s crisis is raising awareness. Alzheimer’s and other forms of dementia aren’t distant problems—they’re in our neighborhoods, within our families, and very much a part of our own futures. These diseases will impact not just our parents and grandparents, but our spouses, siblings, and even ourselves.
To manage this crisis, we must address it with both compassion and urgency. We need more research funding to develop effective treatments and, hopefully, one day a cure. We need more resources for caregivers—both family members and professionals—to provide them with the training, support, and respite they need to continue their essential work. Memory care facilities must expand to meet the rising demand, and policies must adapt to offer better long-term care solutions for all.
But perhaps most importantly, we need to talk about Alzheimer’s. Open conversations reduce the stigma and isolation that often accompany this disease. By creating a network of support, we not only raise awareness but also build a foundation of understanding that benefits both those with Alzheimer’s and the caregivers who love them.
Action Plan: Small Contributions, Big Impact
Each of us has a role to play in addressing the Alzheimer’s crisis. Here are some simple yet powerful steps we can all take to make a meaningful difference:
Educate Yourself and Others
The first step is knowledge. Learn the signs of Alzheimer's and dementia, and share that knowledge with others. Understanding the disease helps reduce stigma and encourages early detection. Attend community events or webinars on Alzheimer's, and read resources from the Alzheimer's Association and similar organizations.
Support Caregivers
Caregiving is emotionally and physically exhausting. Reach out to someone you know who is a caregiver and offer your support. This could be as simple as running errands, preparing a meal, or just listening. If you can, volunteer at local respite care programs to give caregivers a much-needed break.
Advocate for Change
Join the fight for better policies and funding by contacting your local representatives. Advocate for more research funding for Alzheimer's and dementia, and push for healthcare policies that provide support for both patients and caregivers. Even a single phone call or email can make a difference.
Participate in Fundraising Efforts
Many organizations hold annual walks, runs, and other events to raise money for Alzheimer’s research and support services. Participate in or donate to local Alzheimer’s fundraising events such as the Walk to End Alzheimer's or The Longest Day. Every dollar raised brings us closer to better treatments and care.
Volunteer in Your Community
Whether it’s spending time at a local memory care center or offering companionship to someone with dementia, volunteering can be a deeply rewarding way to help. Even small gestures like reading aloud, playing music, or simply being present can have a profound impact on those living with Alzheimer’s.
Engage in Research
If you're willing, consider participating in Alzheimer's research studies or clinical trials. Research is crucial for developing new treatments, and many studies rely on the participation of both individuals with Alzheimer’s and healthy volunteers. Check out the Alzheimer’s Association's Trial Match service to find opportunities
.
Spread Awareness on Social Media
Use your social platforms to raise awareness. Share stories, statistics, and resources about Alzheimer's and dementia to your network. Start conversations that challenge stereotypes and misconceptions about the disease. And wear purple to celebrate solidarity!
Promote Brain Health
Encourage others to take proactive steps toward brain health. This includes regular exercise, a healthy diet, mental stimulation, and staying socially connected. There’s growing evidence that lifestyle factors can help reduce the risk of cognitive decline.
The Path Forward
The Alzheimer’s crisis requires a collective effort. Governments, healthcare providers, caregivers, and communities must come together to create a future where those with Alzheimer’s are treated with dignity and compassion, and their caregivers are supported, not sidelined.
So, as we approach World Alzheimer’s Day, let’s all commit to learning more, talking more, and doing more. Whether through advocacy, volunteering, or simply offering a kind word to a caregiver, every action matters.
And here's something you can do right now: pass this article on to your friends, family, and co-workers. Let’s start the conversation today. The first step in raising awareness is sharing what you’ve learned. Together, we can create a future of hope for those affected by Alzheimer’s. Take the first step now!
Barbara J. Huelat Healthcare Design Specialist & Author Championing compassionate care and innovative solutions for dementia.
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Barbara Huelat, a dynamic force in healthcare design, author, and speaker, shares her expertise in her latest publication, Taming the Chaos of Dementia. With her profound understanding and passion for the subject, she offers practical wisdom on navigating dementia care with empathy and skill, transforming this complex challenge into an empowering journey. Explore Barbara's insights at barbarahuelat.com or call 703-795-1743 for an enriching experience.
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