Being isolated can significantly worsen the physical, mental, and cognitive well-being of someone who has Alzheimer's disease. That's why stories like Heather's matter so much. Staying visible, connected, and engaged isn't just good for the spirit; it's good for the brain.
Heather: A Diagnosis Does Not Define Me
HeatherA Diagnosis Does Not Define Me
We are always so interested in telling the stories of family caregivers, and today we are telling the story of a woman who is fighting her own daily battles while helping others who are going through the same thing along the way.
So many people who receive a grim or life-changing diagnosis go into hiding. They cut themselves off from the world, and for someone living with cognitive decline, that isolation can be harmful. Heather chose the opposite path.
November is National Family Caregiver Month, and Heather's story opens a month of features telling the stories of caregivers across the country.
We begin with someone who sees Alzheimer's from the inside. Diagnosed at 56, Heather didn't retreat. She started talking, and more than 40,000 people around the world started listening.
Heather is still living fully, one memory at a time
Faster Cognitive Decline
Lack of conversation, mental stimulation, and everyday social engagement means the brain is exercised less. Studies show that social isolation accelerates memory, language, and thinking decline in people with dementia.
Increased Psychological Distress
Isolation triggers chronic stress, anxiety, and depression, which are common and heavy contributors to worsening behavioral symptoms such as agitation, confusion, and mood swings.
Physical Health Complications
Being socially cut off is linked to higher rates of physical inactivity, poor sleep, and an increased risk of serious cardiovascular issues like heart attack and stroke.
Brain Volume Shrinkage
Research published in Neurology indicates that social isolation is tied to lower volume in critical brain regions responsible for thinking, learning, and memory.
Neglected Care and Safety Risks
People with Alzheimer's who live alone or lack regular check-ins are less likely to manage chronic conditions properly, more likely to miss medications, and less likely to recognize when they need urgent care.
You can read more about how social environments influence brain health through the National Institute on Aging, or explore guidance on supporting isolated individuals through BrainGuide by UsAgainstAlzheimer's.
of the more than 7 million Americans living with Alzheimer's have the younger-onset form, diagnosed before age 65. Most are in their 40s, 50s, or early 60s, and the vast majority of cases are not inherited. Learn more in the Alzheimer's Association's guide to younger-onset Alzheimer's.
Tell us a little about yourself. Who are you beyond your diagnosis?
I'm a mother, sister, and daughter. I love my family fiercely, and we're always making new memories together. I also have a small circle of very close friends who mean the world to me.
Writing is one of my personal passions. I'm a fierce Scrabble competitor and a social connector by nature. I love marketing and helping business owners become more successful and profitable. Throughout my career, I've had the privilege of coaching more than 400 franchisees. I absolutely loved helping them grow their businesses, and many of those relationships have turned into lasting friendships.
My diagnosis does not define me, and I don't believe it should define anyone. I'm still me. I love my people, cherish the moments, laugh a lot, and try to live every day to the fullest.
After my diagnosis, I created a bucket list. Some things are simple, like sleeping under the stars. Others are bigger adventures, like traveling to London, attending the Kentucky Derby, and going sailing with my entire family. I want to experience as much as I can and make as many memories as possible along the way.
"My diagnosis does not define me. I'm still me."
HeatherHow have you maintained your identity and sense of purpose since your diagnosis?
Holding on to my identity has been as effortless as breathing. I'm still the same person at my core. Finding a new sense of purpose, however, was an entirely different story.
Initially, I felt lost. I had spent so much of my career helping others, building businesses, coaching franchisees, and staying busy. Suddenly, so much of that had changed, and I struggled with what my purpose would look like moving forward.
In a relatively short amount of time, I felt called to start sharing my journey on social media. I wanted to help others who were facing similar challenges and let them know they weren't alone.
I never imagined that sharing my story would connect me with more than 40,000 people from around the world. It's been incredibly rewarding to hear from people living with Alzheimer's and those caring for loved ones. Knowing that something I've shared might help someone else has given me a renewed sense of purpose.
I've learned that purpose doesn't necessarily have to come from a career or a paycheck. Sometimes, it comes from simply making a difference in someone else's life.
How has Alzheimer's affected your independence?
Hmmmm, independence is a tricky question because, honestly, I've had to surrender quite a bit of it.
I still make decisions about how I spend my days, what I wear, what I eat, who I spend time with, and what I want to accomplish. Those everyday choices are important to me.
However, I can no longer drive or work, and those have been two of the more difficult adjustments. Not being able to drive has been particularly frustrating because I also experience challenges with spatial relationships associated with my Alzheimer's.
I've found other ways to stay engaged and contribute. Although I haven't worked in nearly two years, I've continued offering my consulting and coaching services on a pro bono basis. Being able to help business owners is still incredibly gratifying.
I've learned that independence isn't necessarily about doing everything yourself. It's also about maintaining a voice, making choices, and continuing to contribute in ways that are meaningful to you.
What do you wish loved ones understood about supporting you without taking away your independence?
I think the biggest thing is understanding that support and independence can coexist.
I know my family wants to protect me, and I appreciate that more than I can express. But I still want to make my own decisions, have opinions, try new things, and participate in life.
Not being able to drive has probably been my biggest frustration because it affects my ability to come and go independently. I also experience spatial relationship challenges, so I recognize that some limitations are necessary for my safety.
But I don't want people to automatically assume I can't do something just because I have Alzheimer's.
Include me. Ask me. Let me make decisions. Encourage me to do the things I can do, and help me with the things I can't.
Most importantly, remember that I'm still me.
"Include me. Ask me. Let me make decisions."
HeatherWhat are you doing to maintain your health and well-being?
While I don't have control over the progression of my disease, I believe in taking care of myself and doing everything I reasonably can to support my overall health and well-being.
I focus on eating healthy, limiting sugar, staying socially connected with family and friends, and exercising regularly. Strength training is especially important to me, particularly training my legs.
I also want to mention something important about hearing loss. Untreated hearing loss is a recognized modifiable risk factor associated with dementia, and it's something I wish I had taken more seriously. I'm actually pretty guilty of not addressing my own hearing loss as early as I should have!
I believe staying active, engaged, and connected is important. I want to keep participating in life rather than sitting on the sidelines.
How has your diagnosis changed your relationships with family and friends?
Interestingly, my relationships have become even stronger.
There's almost a silent understanding among my family and friends that we don't know what tomorrow will bring, so we make the most of today. And that doesn't always mean doing something extraordinary. Sometimes it's the simplest things: having dinner together, laughing, spending time together, or just enjoying each other's company.
I think we've all become more intentional about making memories and appreciating the time we have together.
My family has been incredibly supportive, and I don't take that for granted. We laugh a lot, we love fiercely, and we try not to let Alzheimer's take away the joy in our lives.
By sharing your journey publicly, you are helping others see Alzheimer's from a different perspective. What has surprised you most about the response?
I began sharing my journey on TikTok under the name @alzheimerswarrior, and I've connected with more than 40,000 people around the world who are either living with Alzheimer's or caring for someone who is.
It's been such a blessing.
What has surprised me most is just how many people are looking for connection, information, encouragement, and someone who understands what they're going through.
I've received messages from people who tell me that something I've shared helped them feel less alone. Some have shared their own stories, while others have reached out because they're navigating a diagnosis with a loved one.
It's also been surprising to learn how many younger people are living with Alzheimer's, including people in their early 40s.
There is so much more to this disease than what most people see or understand. I want people to recognize that Alzheimer's doesn't erase your personality, your relationships, your dreams, or your ability to make a difference.
I don't want the disease to define me. I want my life, my experiences, and the way I choose to live it to define me.
Have you connected with others living with younger-onset Alzheimer's, and what have those connections meant to you?
Absolutely, and it's been eye-opening.
I've connected with so many people who are much younger than I ever expected to find living with Alzheimer's. Some are in their early 40s, raising children, working, building careers, and trying to navigate a diagnosis that can completely change the direction of their lives.
Those connections have been incredibly meaningful because there's an understanding that doesn't always need an explanation.
We share experiences, frustrations, questions, and, importantly, hope. We celebrate the good days and support one another through the difficult ones.
I've also learned how important it is to raise awareness about younger-onset Alzheimer's. People need to understand that this isn't exclusively an older person's disease.
My community has become a source of strength, and I'm grateful for every connection.
are when most people with younger-onset Alzheimer's are diagnosed, often while still raising families and building careers. It is not exclusively an older person's disease.
What would you say to another person in their 40s or 50s who has just received an Alzheimer's diagnosis and feels their future has been taken away?
First, I would tell them to take a breath. I know that diagnosis can feel like your entire world has been turned upside down. I've been there.
But please don't assume that your life is over or that your future no longer holds wonderful things.
Your diagnosis does not define you. You are still a mother, father, spouse, friend, professional, adventurer, and so much more. You are still the person you've always been.
Do the things you love. Spend time with the people you love. Stay social, exercise, take classes, join clubs, explore new interests, and make that bucket list a reality.
Don't wait for the perfect moment. Make memories now, even if they're simple ones.
And find your people. Connect with others who understand what you're experiencing. Advocate for yourself, ask questions, seek second opinions when appropriate, and stay informed about treatment options and clinical trials.
I also want people to understand that the treatment landscape is evolving. There are disease-modifying treatments available for some people with early Alzheimer's, but eligibility depends on several factors, including genetic status and individual medical risks.
For those of us with the APOE4/4 profile, the treatment conversation can be particularly challenging. Some treatments carry increased risks of serious side effects, including brain bleeds, and we need more research and more options.
I'm still waiting for a treatment or clinical trial that is an appropriate match for me. We're hoping for that Hail Mary!
But in the meantime, I'm not putting my life on hold.
We're not giving up. We're keeping the faith, staying hopeful, and believing there are still possibilities ahead.
"I can't control my diagnosis, but I can have a say in how I choose to live my life."
HeatherWhat is your advice to someone struggling with their diagnosis or caring for someone with Alzheimer's?
My advice is simple: keep living.
Do the things you love. Be with the people you love. Keep busy, stay social, sign up for classes, join social clubs, try new experiences, and make your bucket list a reality.
Don't let your world become smaller than it needs to be.
And if you're a caregiver, remember that the person you love is still there. They still want to laugh, have fun, make decisions, feel included, and create memories with you.
There will be difficult days, and there will be uncertainty. But there can also be joy, adventure, laughter, and so many beautiful moments.
I can't control my diagnosis, but I can have a say in how I choose to live my life.
Life is still happening. Don't miss it.
"Life is still happening. Don't miss it."
Heather
Heather is a mother, sister, daughter, writer, fierce Scrabble competitor, and lifelong marketer who has coached more than 400 franchisees over her career. Diagnosed with Alzheimer's at 56, she continues to offer pro bono consulting and coaching to business owners.
She shares her journey with honesty and hope as @alzheimerswarrior on TikTok, where she has built a community of more than 40,000 people living with Alzheimer's and those who care for them. Her message is simple: a diagnosis does not define you.
Younger-Onset Alzheimer's Guide
The Alzheimer's Association's guide to diagnosis, planning, and support for people under 65.
Read the GuideAlzheimer's: The Word Nobody Wants to Hear
Our Heart of the Home article on facing an Alzheimer's diagnosis as a family.
Read the ArticleTop Home Safety Picks
Our curated favorites for helping a loved one stay safe, confident, and independent at home.
Shop the PicksBrain Health & Connection
The National Institute on Aging's research and guidance on aging, isolation, and brain health.
Visit NIAFollow @alzheimerswarrior
Honest, hopeful updates from Heather's journey, and a community that understands.
Follow on TikTokSupport Independence at Home
Safety tools that help someone living with Alzheimer's keep doing what they can, with help for what they can't.
Shop Top Safety Picks
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