When someone you love has dementia, it’s really easy to start keeping a running list of everything he or she can’t do anymore.
Mom can’t drive. She can’t manage the checkbook. She can’t cook the way she used to. She can’t remember what happened yesterday. And as a caregiver, you have to pay attention to those things. After all, everything your loved one can no longer do often becomes something you have to help with.
But I always challenge families to make another list too: a can-do list.
What can your loved one still do physically? What can he or she still do cognitively? What hobbies does he or she enjoy? What makes your loved one smile? What long-term memories are still there? What can your loved one do independently, even if he or she needs a little help getting started?
We spend so much time looking at the losses that sometimes we forget to look at what’s still there.
And when it comes to dementia care, what’s still there gives us something to work with.
Start with the Environment
One of the best ways we can help someone with dementia be successful is to look at the environment around him or her. I like to break this down into four Fs: friendly, familiar, functional, and forgiving.
A friendly environment is one where someone feels supported and safe. I often say that people with dementia are walking around looking for two things: help and hope. The people around them can provide both.
Familiarity is just as important. Short-term memory may be changing, but familiar objects, routines, and surroundings can still provide comfort.
I once worked with a family whose dad was moving into memory care. He had slept under the same large quilt for years, but his new bed was smaller. Instead of getting rid of the quilt, his family had it cut down and resized to fit the new bed.
That may seem like a little thing, but it wasn’t little to him. It was something familiar in an environment that was otherwise brand-new.
Then we have to ask whether the environment is functional. Is there enough light? Is the television too loud? Can the person comfortably get where he or she needs to go? Are there five different remotes sitting on the table when the person only needs one?
Even something as simple as putting an arrow on a door with the word “bathroom” can help someone navigate the space more independently.
Sometimes functional changes aren’t obvious. I’ve talked with families whose loved ones can still walk perfectly well but trips to the doctor become chaotic because they wander, get distracted, or become overwhelmed. A lightweight transport chair may make that outing easier. It doesn’t mean Mom suddenly can’t walk. It means we’ve changed the environment so she has a better chance of being successful.
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Give People Room to Make Mistakes
The last F, forgiving, is one of my favorites.
A forgiving environment is a place where someone with dementia can make a mistake without being embarrassed or immediately told he or she is doing something wrong.
Imagine a woman who has played cards with the same group of friends for 40 years. Now she has dementia and sometimes makes mistakes during the game. Her friends could decide she can’t play anymore. Or they can understand what’s happening, help her along, and let her keep doing something she loves.
I saw this all the time with bingo when I worked in assisted living. Someone’s dementia would progress and following the numbers would become harder, but the person still wanted to play. The individual knew bingo was on the schedule. It was familiar. It was part of her routine.
And so often, another resident would quietly scoot her chair a little closer. When she covered her own B12, she’d reach over and cover her friend’s B12 too. No big announcement. No pointing out the mistake. Just a little help.
That’s a forgiving environment.
The goal isn’t to make someone prove he or she can still do everything independently. It’s to create enough support around the individual that he or she can continue participating.
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Substitute Instead of Subtract
This is another phrase I want caregivers to remember: substitute, don’t subtract.
Our natural reaction when something becomes difficult is often to take it away. The phone becomes confusing, so we remove the phone. Going to a restaurant becomes difficult, so we stop going out to eat. Playing cards becomes harder, so we stop playing cards.
But every time we take something away, we may also be taking away familiarity, independence, routine or enjoyment.
So before subtracting something, ask: Is there a way I can adapt it instead?
Phones are a great example. Modern phones require a lot of sequencing, and that can become incredibly difficult for someone with dementia. But completely removing the phone may also create anxiety because that phone has always represented a way to reach someone for help.
Maybe we simplify it. Maybe we limit the contacts. Maybe we use picture dialing. I’ve even seen a family leave a familiar contact in the phone but remove one digit from the number when there was a concern about repeated calls. The phone still looked and felt familiar, but the family had found a way to adapt it.
The goal is to ask what we can change before deciding something has to disappear completely.
Sometimes a Little Creativity Goes a Long Way
One of my favorite examples of this involved a husband caring for his wife with dementia.
They had always enjoyed going out to eat together, but restaurants were becoming difficult. She could no longer reliably read the menu or remember what she ordered. She might order something and then, when the food arrived, insist she had never ordered it.
Her husband was getting frustrated. The waiter was confused. His wife was upset.
Eventually he started thinking, Maybe we just can’t go out to eat anymore.
But instead of taking restaurants away, he found a workaround.
He made a tiny card that he could discreetly hand to the hostess before they were seated. The message was basically: let my wife order whatever she wants, but please bring her a small hamburger, fries, and a Coke.
She might order lobster. She might order soup. It didn’t matter.
When the hamburger, fries, and Coke arrived, she was happy.
And because of that little card, they could still go out to dinner together.
Think about everything they preserved by making that one adjustment. She had a reason to get dressed. They walked to the car and into the restaurant. They interacted with other people. They got out of the house. And her husband, who was caring for her 24 hours a day, got to get out too.
He didn’t subtract the experience. He adapted it.
That’s what setting someone up for success can look like.
Look at What You’re Bringing to the Interaction
As caregivers, we also have to remember that we’re part of the environment.
Instead of saying, “You need to get up and walk. You’ve been sitting there all day,” try saying, “Hey, can you help me with something in the kitchen?”
The first approach can easily turn into an argument. Your loved one may not remember that he or she has been sitting there all day. From your loved one’s perspective, you may simply be saying he or she is wrong.
The second approach provides a purpose and an invitation.
I saw this when I worked in memory care. Sometimes a caregiver would walk into someone’s room in the morning, speak loudly, pull the covers back, and expect the person to get up. The resident might yell, curse, or resist.
Then we changed the approach.
Turn on the lights. Introduce yourself. Gently touch the person’s arm. Give him or her a moment to wake up. Slowly pull the covers back.
Guess what? We often got a completely different response.
Sometimes what we’re getting from the person with dementia has a lot to do with what we’re giving.
And this is hard. Caregiving is frustrating. Everything your loved one loses the ability to do can add something else to your plate. If you feel yourself getting frustrated, sometimes the best thing you can do is recognize it, walk away for a few minutes, and come back when you can approach the situation differently.
Become a Detective
Another reality of dementia care is that things are going to disappear.
We used to have a saying: Nothing’s lost. It’s just misplaced.
And I mean that.
My most famous example is the time we lost a resident’s dentures. We looked everywhere. We checked the room. We checked the garbage. We wondered if they had somehow been flushed down the toilet.
Finally someone asked, “Did you look in the toilet tank?”
Sure enough, sitting at the bottom of the tank was a full set of dentures.
With dementia, people may hide or move belongings because they don’t remember where they put them, but anxiety can also play a role. If someone doesn’t completely trust his or her surroundings, hiding something valuable may make perfect sense to the individual.
If there’s a small, inexpensive item your loved one frequently misplaces and becomes very upset without, consider buying two. Simplify cluttered drawers. Use clear containers. Pay attention to the places your loved one tends to put things.
You become a little bit of a detective.
Be Careful with the Questions You Ask
Communication is another area where small changes can make a huge difference.
Try to avoid turning conversations into memory tests.
“Do you remember who came to see you today?”
“Do you remember where we went yesterday?”
“Do you remember Rick?”
If someone has short-term memory loss, there’s a very good chance the answer is no. Asking your loved one to prove that he or she remembers can create anxiety and embarrassment.
Instead of asking, “Do you remember Rick came to visit today?” simply say, “Rick came to visit today.”
You’ve provided the information without asking your loved one to perform.
The same goes for phrases like “You’re wrong,” “You used to be able to do this,” or “Why can’t you do this anymore?”
Some of the hardest moments I’ve experienced in dementia care were the lucid moments when someone recognized his or he own losses and said things like “I’m useless now” or “I’m no good anymore.”
We don’t need to remind someone of what dementia has taken from him or her. These individuals need us to help them use what’s still there.
Success May Look Different Now
Setting someone with dementia up for success doesn’t mean everything is going to go perfectly. Dementia is progressive, and what works today may need to change tomorrow.
But before we take something away, we can ask whether it can be adapted. Before we correct someone, we can ask whether the correction is necessary. Before assuming the individual can no longer participate, we can look at his or her can-do list.
Sometimes success means quietly helping with a bingo card.
Sometimes it means cutting up the meat before the plate ever reaches the table so someone doesn’t have to struggle with a knife and fork.
Sometimes it means resizing an old quilt, simplifying a phone, putting a clock in a better location, or handing a restaurant hostess a little card.
These are small changes, but they can preserve something much bigger: independence, dignity, purpose, and connection.
And when the person with dementia experiences more success and less frustration, we usually experience less frustration as caregivers, too.
That’s the goal. Not to make dementia disappear, but to create an environment where the person we love can continue to succeed for as long as possible.
Caring for a loved one with dementia can be challenging, but compassionate help is available. Certain age-related conditions can make it more challenging for older adults to age in place safely and comfortably, but experts in 24-hour home care for Cincinnati seniors are available around the clock to help aging adults manage their health. Whether your loved one is living with dementia or recovering from a stroke, you can trust the professional caregivers from Assisting Hands Home Care to enhance his or her quality of life. Call us today to talk to one of our compassionate Care Managers about our high-quality home care services.
If you’d like to learn more about dementia, join me in my next Real Talk webinar, where each month I take a deep dive into one dementia-related topic. Learn more and register here.
