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Understanding Caregiving & How to Support Caregivers

Understanding Caregiving

Learn some important ways you can support caregivers of people living with brain disease as well as how caregivers can make time for their well-being.


Brain disease impacts millions of Americans—not only individuals with a brain disease but also their family, friends, and caregivers. The American Brain Foundation is committed to supporting research across the entire spectrum of brain diseases and sharing valuable resources. As a part of that commitment, our recent webinar connected attendees with two panelists on caregiving and how to support caregivers

The panelists included Bonnie Wattles and Dan Gasby. Bonnie Wattles is the executive director of Hilarity for Charity, a nonprofit organization that focuses on families impacted by Alzheimer’s disease and provides support groups and in-home respite care for caregivers. Dan Gasby is the co-author of Before I Forget, a leading voice for Alzheimer’s disease awareness and caregiver advocacy, and an American Brain Foundation board member.

Becoming a Caregiver

Dan acted as a caregiver for Barbara, his wife of 28 years. “We were two sides of a coin,” he says. “I could look across the room and see Barbara and talk to her with my eyes. I could anticipate what she was thinking, as she could with me.”

But in time, he started to notice something was different. “My wife, who I could talk to by just signaling—it was like things weren’t connecting,” he says. After a number of tests, doctors confirmed that Barbara was having cognitive issues that then developed into Alzheimer’s disease.

Going through this experience with his wife, Dan saw firsthand how having a loved one with a brain disease and becoming a caregiver changes a person’s life. “You’re never going to be the same,” he says. “You really have come to understand that the toughest thing in life—the toughest language to learn—is patience and understanding.”

The journey he went through as his wife’s Alzheimer’s progressed is one many caregivers can understand. “To watch [the life we had planned] flake away and get to that point where you realize it’s not something that could be reversed, and then it goes into that almost surreal, maddening world where the person literally is gone,” he says. “You would keep reaching back and you’d see little glimpses… where you’d see the light and then the light will close.” He shares his story to help others who also find themselves walking this difficult journey.

Caregiving as a Public Health Issue

The current need for caregiving is significant and growing. Bonnie Wattles notes that today, there are about 48 million individuals caring for an adult family member or friend. Of that 48 million, 11.2 million caregivers are caring for somebody with Alzheimer’s or other dementias. That number is expected to triple by 2050.

In her work with Hilarity for Charity, Bonnie recognizes how overwhelmed and unprepared many caregivers feel. They have to balance many different demands as they learn about their loved one’s disease, coordinate responsibilities with siblings or other family members, try to understand their caregiving role, and navigate a complex healthcare system.

Caregivers need tools and resources, especially when it comes to addressing the financial burden of ongoing medical care. Referencing a recent AARP study, Bonnie notes that 8 out of 10 people surveyed said they are going into their own pockets to cover the cost of daily caregiving. The survey found that the typical annual total for out-of-pocket caregiving costs is $7,242. Many caregivers also have to take time away from work or shift to part-time, dip into savings, or cut back on retirement contributions.

An Emotional Rollercoaster

Caregiving requires patience, self-sacrifice, and commitment. The emotional ups and downs can be grueling. “There’s not a day or a week or a moment that you don’t go through the situation saying, ‘why me?’” says Dan. “Why am I missing all of the things that I should naturally be able to do? Why am I having to take care of changing sheets, watching someone destroy things, watching someone lash out?”

Dan recalls having to hide his emotions from his wife when she’d ask if he was okay, noting that these conflicting feelings are part of the caregiving process. “The toughest thing about being a caregiver to me was I couldn’t wait to get away, and when I was away, I couldn’t wait to get back,” he says.

Both Dan and Bonnie encouraged people to talk to their loved ones who have been diagnosed with brain disease and sort out a plan for caregiving before the need comes up, especially as it can impact family dynamics. “In many family situations, it’s not the person who steps up. Everybody steps back and you’re left as the caregiver,” Dan says. He has seen how family members who choose to step back often speak up to comment and critique the caregiver, adding further negativity to a difficult situation. 

The heavy emotional burden of caregiving can lead to mental health issues for caregivers, such as anxiety and depression. This is something Bonnie and Hilarity for Charity want to normalize so caregivers know they aren’t alone. “We’re hoping to create a narrative that people aren’t afraid to get help,” she says. “We need to keep sharing our story and normalizing this conversation so that people can feel supported.”

Dan points out that the responsibilities of caregiving can even affect caregivers physically, as they often tend to not take care of themselves, which can lead to becoming sick more often and taking longer to recover and heal.

Caring for Caregivers

One of the best ways to support caregivers is to give them time for themselves. Support from others can allow caregivers to share the burden of caregiving responsibilities and recharge. 

Hilarity for Charity recently surveyed its caregiver grant recipients and support group members from the past decade. The survey found that respite can improve the quality of care that a caregiver provides. It also alleviates stress, reduces feelings of isolation, and helps caregivers feel more physically and emotionally prepared for the caregiving journey.

While he was caring for his wife, Dan found different ways to relieve his “pressure cooker” of emotions. “You have to have the ability to find things that allow you to decompress,” he says. He would go to the beach and scream, hit a punching bag, or run up hills to let off steam. “I did a lot of stuff because [caregiving] is a thankless job.” He suggests exercise, meditation, and quick naps as helpful ways to recharge.

Dan also emphasizes the importance of a support system. He’s seen that caregivers can’t always rely on their family members, as some may be unable or unwilling to help. That’s where trustworthy friends, resources, and organizations can provide support—and where each of us can step up.

Supporting Brain Health and Research

Both Dan and Bonnie also touched on how crucial it is for people to understand the importance of taking care of their brain health. Research has found that as many as 40% of cases of dementia in Alzheimer’s could be preventable. Because of this finding, Bonnie stresses the importance of caring for our brains from early on in life through exercise, nutrition, quality sleep, being socially and cognitively engaged, and taking care of other health risk factors.

Dan echoes this imperative to take our brain health seriously. “We take the brain for granted,” he says. “If the body was a car—your eyes are headlights, the engine’s your heart, and you can go through all the other body parts—but the one thing that makes a car go is the driver… and the brain is the driver.”

With the growing need for caregiver support, it’s crucial to bring awareness and attention to this issue. “We have to change the narrative around aging,” says Bonnie. “We have to value aging and value caregiving.” These types of conversations can help spark more funding, support, and educational programs for caregivers.

As we continue to shine a light on brain disease, the American Brain Foundation believes in supporting caregivers. A caregiver’s role is physically, financially, and emotionally demanding. It’s important to understand this journey and the challenges caregivers face so we can provide support and respite.

The American Brain Foundation was founded to bring researchers and donors together in the fight against brain disease. Learn more about brain disease or make a gift to support groundbreaking brain disease research.