Across the country, roughly 7 million Americans are living with Alzheimer’s disease; nearly all of us know someone who is affected. Alzheimer’s, a form of dementia, is a brain disease that damages parts of the brain responsible for language, thinking and memory. While the early stages of the disease often yield no noticeable symptoms, those with advanced Alzheimer’s are unable to communicate verbally and depend upon other people for care. As of now, there is no cure.
Caregiving for those with Alzheimer’s can be difficult, thankless work, with emotional and financial repercussions. While many Alzheimer’s patients live in memory care facilities, others live with family members and are given care at home.
One such caregiver, Ty Lewis, has been taking care of her mother, Gertrude, for four years and making the best of Gertrude’s diagnosis of Alzheimer’s with behavioral disturbances in the process. Lewis now runs a consulting business for memory care facilities and caregivers, as well as an Instagram page dedicated to caregiving for her mom, all with the goal of showing that joy can be found after diagnosis —even amid the pain and hardship. “My mother always taught me to love, serve well and be generous,” Lewis says. “Those lessons will always stay with me. Even now, unknowingly, she is doing the same in our social media community, and so many lives are benefitting and being changed.”
Yahoo Life spoke with Lewis and other caregivers across the United States to hear what they’ve learned about life and Alzheimer’s disease by working so closely with people who often remember very little. Here’s what they shared.
Don’t give in to fear
As with many uncomfortable topics, people tend to look away from Alzheimer’s rather than learn as much as they can about it. Dementia care specialist Teepa Snow says truly facing how to care for a loved one with the disease is one of the most important lessons she’s learned. “Fear often gets in the way of people learning about dementia and building their skills, both of which are essential to providing effective support,” she tells Yahoo Life. “The ability to successfully support people living with dementia isn’t a skill that comes naturally for the vast majority of people — it must be learned.”
Elizabeth Edgerly, senior director of community programs and services at the Alzheimer’s Association, says that strength is one way to face that fear. “The biggest lesson I’ve learned from my work is witnessing the profound resilience and courage of those living with Alzheimer’s and dementia, as well as their care partners,” she tells Yahoo Life. “Their strength in the face of such challenging circumstances has been incredibly inspiring.”
Everyone’s journey with the disease is individual
When you or someone you love is diagnosed with Alzheimer’s, it can be easy to feel like the future is written, but the caregivers we spoke with cautioned against that mindset. “I’ve seen tremendous variation in what people experience,” says Edgerly. “We often say, ‘If you’ve met one person with Alzheimer’s, you’ve met one person with Alzheimer’s.’ It doesn’t necessarily apply to the next person you meet.”
Take care of yourself and plan for the future
Many of the caregivers we spoke with mentioned how being so close to Alzheimer’s on a daily basis caused them to make changes to how they live in order to protect their own brain health. Snow says her work caused her “to adopt habits to reduce my risk of developing dementia, including exercise, a healthy diet, using my brain and making time for socializing.”
Edgerly agrees.“High blood pressure is a major risk factor, so I focus on managing it carefully — every day, without exception. I also prioritize regular exercise such as walking, making healthier choices in my diet and improving my sleep habits.”
Lewis says seeing her mother’s disease has also caused her to take better care of herself. “My new habits [have] included reducing my risk by watching what I eat, exercising regularly, staying active and social and reducing my stress,” she tells Yahoo Life.
Kristen Romea, director of supportive services at Alzheimer’s San Diego, says her work has led her to take practical steps toward her future care. “I am the only person I know who had an advance health care directive before age 30,” Romea says. “Working at Alzheimer’s San Diego with those who have these conditions has taught me to plan ahead and be prepared in ways that my friends and peers are not.”
Purpose is everything
While diagnosis is upsetting, Snow says finding purpose is crucial to patients staying positive. “Without any purpose, life doesn’t feel worth living,” patients have told her. “Helping people to find their purpose, especially when abilities have changed, is key,” Snow says.
“The secret to life isn’t in what you achieve but in how you cherish what you have,” says Sheri Easton-Garrett, senior vice president of clinical operations at Belmont Village Senior Living, of what she’s learned about purpose from working with Alzheimer’s patients for decades. “The little moments — laughing with a friend, holding a hand, being present with your family — that is what truly matters in the end. That simple secret wisdom has stayed with me and shaped how I approach each day, both personally and professionally.”
Lewis notes that her mother’s diagnosis has inspired her to live more fully in the moment and find her purpose in the everyday. “The biggest lesson I’ve learned from taking care of my mom is that life is truly short,” says Lewis. “So serve, give and love hard while you can.”
You don’t need to face Alzheimer’s alone
“I wish that everyone knew how important it is to build a support system early with family, friends and community organizations,” says Romea.
A community can be found in all kinds of places, from structured organizations like Alzheimer’s San Diego to chosen or biological families. “I’ve witnessed many families grow closer as they navigate these challenges together, finding deeper connections and moments of joy,” shares Edgerly. “There is no need to face this alone. It really helps to connect with and learn from others who’ve walked this path before.”
Even after diagnosis, there is joy
Through everything, the caregivers emphasized that even after a diagnosis like Alzheimer’s, there is joy. “Beneath the confusion and memory loss, there remains a person with feelings, a rich history and a continued desire for connection,” says Easton-Garrett. “Even as memories fade, the person is still there — deserving of love, patience and dignity. It’s easy to get lost in the symptoms and forget that each person still holds emotions, joy and a need for everyday connection. It’s essential to focus on what remains rather than what has been lost.”
“One thing I wish everyone knew about Alzheimer’s is that life doesn’t end when someone is diagnosed with Alzheimer’s,” adds Edgerly. “It doesn’t erase the person’s capacity to experience joy and connection. People with Alzheimer’s can still find happiness in moments, relationships and activities, and their dignity and humanity remain intact throughout the journey.”
