Questions from Caregivers

Dementia is a difficult diagnosis and presents unique challenges for caregivers.

Reviewed by Lybi Ma

Key points

• Caregiving for someone with dementia requires a unique approach.
• Dementia teaches us how to be with people through all manner of change.
• Here are a few considerations and tools for caregiving when your person has dementia.

The topic of caregiving for elders can come up in conversation with almost anyone, anywhere. It's no surprise since millions of adults in the United States are caring for a spouse, elderly parent, or other relative.

Recently, the topic came up while chatting with people in a neighborhood park: a young woman who is in the early stages of caregiving for her grandfather, who is an accomplished, well-spoken, and warm person. The woman and I have stayed in touch about life and caregiving, and she recently asked if I had written anything about dementia or Alzheimer's. While navigating this very road with a loved one, I learned a few things.

Things don't have to make sense

Trying to understand the questions and requests of someone experiencing dementia can be frustrating because you simply don't understand what they're saying. Their perception of place and time may be affected, they may make impossible demands, or they may suddenly lose the capacity to do something that they could do easily the day before (and will regain a day later). If you always try to understand the specifics, you may lose sight of the big picture, and the big picture goal is to provide the best possible care and loving support for your person.

Distract and redirect

A very simple tool that someone shared with me early on is that of distracting and redirecting attention. The brain is an incredible thing, and it can experience incredible—which is to say, truly impossible to believe!—ways of seeing and experiencing the world. Your person may imagine things that haven't occurred, expect things to be how they were as children, conflate what's on the television with real life, or ask for things that made sense for their lives 20 years prior but not now. If there is something that can't happen or won't happen, it will be futile to discuss it with them, unless they are experiencing a clear moment or day, which certainly happens. Instead, distract them with something else—maybe it's a fresh cup of coffee, a new topic of conversation, or an activity.

You'll need respite

If your person has a form of dementia and is otherwise healthy, you may be caregiving for years, so you must find respite care. This is easier said than done, depending on your access to resources, urban or rural community, and relationships with family and friends. A true solution for caregiving, including respite care, requires forward-thinking policies from state and federal governments, employers, and communities. Until then, you can contact your county office and a nearby agency on aging to see what your options are. Identify these resources sooner rather than later for the sake of your own health and well-being.

Games are fun

There is a wealth of games available to play with people experiencing dementia at any stage of disease progression. Games provide an easy way to engage with your person while also providing stimulation for their minds (and yours!). It is satisfying for someone with cognitive decline to do things they still know how to do, even if it is a simple word game, and it's joyful when you give them a high five for engaging that way. Kids change the rules of games all the time and you can, too. Just make it fun because quality of living is important when everything seems like it's going off the rails.

Don't argue

A person new to caregiving, and even those who've been doing it awhile, might be tempted to argue with a person who has dementia and doesn't completely understand what's happening. A person may be tempted to correct their loved one with the hope of orienting them to the real situation. A person may even feel like they're lying to their loved one when they don't tell it like it is and see distracting and redirecting as dishonest. But the reality is that if someone is experiencing brain atrophy, they are having a different life than you are. They may see things like swans out the window when there are none or bring a glass to their lips for a drink when there is nothing in their hand. You can't argue with something that your brain does not see like theirs, so don't try. And really, it's about them, not you; don't try to be right when they just need you.

Dementia doesn't mean they have nothing to offer

Dementia can affect a person's capacity in a range of ways, but that does not mean they have no way to connect or nothing to offer. Consider the role of music, dancing, or even joking in your loved one's life. There is no reason for total isolation if someone has dementia. There is no need to apologize for a different way of being in the world. How can you revisit the areas that brought them joy? How can you help them engage with others while going for a walk or sharing a meal? Is it possible that your person's way of being will not be a diminished version of themselves but one that is enhanced in new ways?

They are still your person

The person you love may have dementia, but they are still the person who raised you from childhood, advised you on big life decisions, sat with you when you were in pain, and wiped away tears when you achieved your dreams. They may seem like a different person or even a new person, but they are still there. It's okay to sit with them quietly when it's hard to have the kind of conversations you had before. It's okay to feed them when they can't quite do it alone that day. It's okay to help them with activities of daily living that they always hoped they'd do alone. It's okay. They're still your person. Now it's your turn to sit with them.