Memory Keepers Blog

By Cheryl Kinney, MSW, LCSW

You probably didn’t plan on becoming a caregiver. The role likely snuck up on you as your mother’s health started to decline or your husband’s memory got worse. With progressive dementias like Alzheimer’s disease, early symptoms can be sporadic and vague. You may have noticed a change in mood, a missed appointment, or an unexplained dent in the car. You probably thought the person was depressed or under a lot of stress or had too many things going on. But gradually, you found yourself taking on things like bill paying, grocery shopping, scheduling appointments, and other tasks to keep things afloat. On top of that, you began to worry constantly about “what’s next” and whether the person is safe. You wonder whether you can manage all of this on top of everything else you have to juggle each day.

“Can she still live alone?”

“Should he be driving?’

“Is my boss going to say something about all the times mom calls me at work?”

As your responsibilities increased, your level of stress increased too. Your kids and friends have started to mention how worn out you look. Your doctor is concerned that your blood pressure has increased. You caught yourself snapping at your husband for asking the same question over and over. You didn’t want to burden them, so you told your kids and friends everything was fine and brushed off their concerns. Guess what – you have joined the ranks of the over 11 million Americans providing care and support to a loved one with dementia.

With advancing age considered to be the greatest risk factor for Alzheimer’s disease, the population of those living with dementia has been increasing as the baby boomers get older. In 2024, the number of Americans with Alzheimer’s reached over 6.5 million. This number is expected to grow to 13 million by 2050. The toll on the person living with dementia is high, but caregivers of those with dementia are also impacted physically, emotionally, and financially.

11% of family caregivers report that caregiving has caused their physical health to deteriorate. About 40% of family caregivers of people with dementia suffer from depression. 25% of caregivers say it is very difficult to get assistance that is both affordable and helpful. (Family Caregiver Alliance)

The vast majority of those providing care and support to a person living with dementia feel isolated and alone. Caregivers often feel compelled to take on the full weight of the responsibility themselves. Much of this is self-imposed.

“I don’t want to be a burden.”

“I know they are busy.”

“He wouldn’t want anyone but me to take care of him.”

Family and friends offer assistance, but you think you should be able to handle everything yourself. You may even feel guilty or ashamed when faced with the idea of turning to others for help.

When did we start believing we were alone on this island – that there was no one else out there willing or available to help us? Why are we so willing to help others, but so resistant to allowing others to help us?

By nature, humans are designed to live in community with one another. We are stronger when we work together. Sharing care responsibilities with others reduces stress, and helps us maintain our own physical and emotional well-being so we can do the best job possible when supporting the person in our care.

In Debbie DeMoss Compton’s collaborative book The Caregivers Advocate: A Complete Guide to Support and Resources, I wrote about the benefits of taking a team approach when caring for a person living with dementia (Chapter 3: Building Your Support Team: The Art and Freedom of Asking for and Accepting Help). “…instead of thinking that asking for help is a sign of weakness, think of it as a sign of strength: seeking support is a proactive step we can take toward caring for ourselves and others.”

You’ve likely heard the adage “It takes a village to raise a child.” The same holds true when caring for a person with dementia. By building a support team, you can better provide for their emotional, physical, and spiritual needs.

Consider the types of things others might do to help you. This may include lawn care, rides to the doctor, grocery shopping, bill paying, or someone to give you some much-needed time off. It can be helpful to create a list of all the different types of support you or the person with dementia might need, no matter how big or small.
Next, create a list of family members, friends, neighbors, community resources, and professional services you might reach out to for help. Start by listing anyone who has offered assistance in some way in the past. These people are likely the easiest to turn to because they have already expressed a desire to help. Start with small requests to get into the practice of including others on the support team.

“Can you pick up some milk for me when you do your grocery shopping this week?”

“Would you mind taking this book back to the library on your way home from work?”

Make it easy for the person to assist you by asking them to do something specific.

Sharing the care with other members of your newly developed team provides you with an opportunity to rest, recharge your energy, and focus on other responsibilities. Respite care is defined as a short-term break for caregivers. Respite can be provided by informal support including family members, friends, neighbors, or volunteers, or through formal support services such as home care agencies, adult day programs, and care communities. By taking a team approach, you can all share ideas about how to best support the person with dementia. And, the person providing you that much-needed time off can provide meaningful social interactions for the person with dementia.

Individuals living with dementia are often lonely and isolated. Challenges with communication can lead to embarrassment and withdrawal from social situations. As the disease progresses, driving becomes an issue and the person typically stops participating in activities outside the home. When you share the care with others, you help build and strengthen the person’s social relationships by providing opportunities for the person to interact with others.

You can find more information about building a support team and the art and freedom of asking for and accepting help in chapter 3 of the best-selling book The Caregiver’s Advocate: A Complete Guide to Support and Resources now available on Amazon. For a signed copy of the book, visit MemoryKeepers.org.