When I teach Dementia 101, I always start with something that can be difficult for families to hear: dementia changes the brain.
Unlike a broken arm, the need to use a walker, or another physical limitation, we cannot see what’s happening inside someone’s brain. We usually don’t see dementia until it displays itself through a behavior, a forgotten task, a poor decision, or something the person can suddenly no longer do.
That can make dementia particularly difficult for families. If we see someone using a walker, we instinctively understand that he or she may need help opening a door. With dementia, the limitation is often invisible. We have to remind ourselves to look for it.
Understanding what’s happening underneath those changes can help us approach the seniors with more compassion and make better decisions about their care.
Four Truths about Dementia
There are four basic truths I want families to understand about dementia.
- First, parts of the brain are dying. There are physical and chemical changes taking place in the brain, and because our brains control virtually everything we do, those changes can eventually affect memory, judgment, language, movement, behavior, and everyday functioning.
- Second, dementia is progressive. Someone may remain at a certain level for quite some time and then decline. I often describe the progression as stairsteps rather than a straight slide downward. There may be a decline, followed by a plateau, followed by another decline. A very sudden change can sometimes indicate something else is happening, such as an illness, injury, or environmental change.
- Third, dementia currently cannot be cured or fixed. We can absolutely change the environment, change our approach, and put supports in place that help someone function successfully for longer. But we cannot make the underlying disease disappear.
- Finally, dementia can be terminal. Sometimes people die directly from the disease process, while others experience illnesses or injuries their bodies can no longer overcome as dementia progresses.
Those are difficult realities, but understanding them gives families a foundation for what comes next.
Dementia Doesn’t Look the Same at Every Stage
Today, you’ll often hear dementia described in three broad stages: mild, moderate, and late.
In the mild stage, changes can be subtle. Someone may forget things, have difficulty finding the right word, become lost somewhere familiar, or have trouble planning and sequencing tasks.
This is also a stage when people may recognize what’s happening to them, and that can be frightening.
I’ve spent nearly 30 years working with people living with dementia, and I cannot tell you how many older adults have said some version of “I hope I never lose my mind.”
When seniors begin noticing those changes in themselves, they may try to cover them up. Families sometimes interpret this as lying. Mom goes to the doctor and says she’s doing all kinds of things independently that the family knows she’s no longer doing.
But consider what may be underneath that response. If people begin noticing my mistakes, what happens next? They may start doing things for me. They may start making decisions for me. I may lose my independence.
That fear can create a tremendous amount of defensiveness.
As dementia moves into the moderate stage, those changes begin interfering more noticeably with everyday life. Managing finances, preparing meals, bathing, dressing, and choosing appropriate clothing can become more difficult. Eventually, in the later stages, a person may need assistance with nearly every aspect of daily life.
Dementia Is an Umbrella, Not One Disease
Another important part of Dementia 101 is understanding that dementia itself isn’t one specific disease.
I like to compare it to going to the grocery store.
If you need a cucumber and a pepper, you probably don’t ask where the cucumber department is. You ask where the produce section is. Once you get there, you find the specific thing you need.
Dementia works similarly. It’s the umbrella term, and many different disease types fall underneath it.
Alzheimer’s disease is the most commonly diagnosed type. One of its hallmarks is difficulty retaining new information. That’s why someone may eat lunch and an hour later sincerely tell you he or she hasn’t eaten.
It can also explain something I have seen frustrate families tremendously: introducing a walker after a fall.
The family sees the walker as the solution. Dad fell, so now he needs to use this to be safer. But if Dad has Alzheimer’s disease and has never used a walker before, we’re asking his brain to learn a completely new piece of information and then apply it consistently.
He may leave the walker across the room. He may act as though he has no idea what it’s for. The family thinks, “Why won’t he just use it?”
But his brain may simply be unable to retain that new information.
Forgetting the Keys Isn’t the Same as Forgetting What Keys Do
Families also frequently ask me where normal age-related forgetfulness ends and dementia begins. One example I use is losing your keys.
Plenty of us put our keys down and then cannot remember where we left them. I do that myself. With normal forgetfulness, you find them and immediately know what to do next. Someone with Alzheimer’s disease may find the keys and no longer understand what they’re for.
That’s why I encourage families to look beyond memory alone and ask whether these changes are interfering with everyday functional ability. Is your loved one becoming dependent on someone else? Are routines changing because he or she can no longer accomplish certain tasks safely or successfully?
That tells us much more than simply forgetting something occasionally.
Different Dementias Can Create Different Challenges
Other forms of dementia can present very differently.
Someone with Lewy body dementia, for example, may experience movement problems, frequent falls, visual disturbances, delusions, and significant fluctuations in ability. That fluctuation can be especially confusing for caregivers.
I hear people say, “Yesterday she could do this completely on her own. Today she acts like she cannot do it at all.”
Naturally, families start wondering whether the person is choosing not to do something or looking for attention.
The reality is that dementia can affect the brain differently from one moment or day to another. With Lewy body dementia in particular, abilities can fluctuate significantly.
Vascular dementia can also create sudden changes and unpredictable good and bad days, while frontotemporal dementia may significantly affect behavior, impulse control, language, and the ability to initiate or sequence tasks.
The diagnosis matters because it can help us better understand what we’re seeing and why the person may be behaving differently than he or she once did.
Look at What Your Loved One Can Still Do
Regardless of the type or stage of dementia, one principle applies throughout the journey. Families naturally create a “can’t-do” list. Mom can’t manage money anymore. Dad can’t cook. She can’t choose appropriate clothing. He can’t use the microwave. That list matters because everything the person truly cannot do has to be handled by someone else. But I also challenge caregivers to create a “can-do” list.
A family once told me that Mom could no longer dress herself because they would arrive in the middle of winter and find her wearing a tank top, shorts, and flip-flops. But when we broke the task down, Mom actually could dress herself. What she couldn’t do was choose clothing appropriate for the weather.
In memory care, we handled situations like this by limiting access to out-of-season clothing. The person could still go to the closet, choose clothes, and dress independently. We simply removed the part of the task the senior’s brain could no longer manage.
We saw the same thing at mealtimes. Someone might sit in front of a plate and appear unable to feed him or herself. Sometimes there were simply too many utensils and the senior couldn’t determine where to begin. We would remove the unnecessary choices. If that didn’t work, we might put the fork in the person’s hand and help him or her take the first bite. Then the individual would eat the rest of the meal independently. The person hadn’t necessarily lost the ability to eat. He or she had lost the ability to initiate the task.
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Sometimes a Small Change Preserves a Lot of Independence
One of my favorite examples involved a woman with early-stage dementia who was having difficulty using her microwave.
Her family was becoming increasingly concerned because the microwave had about 15 buttons, and she kept pressing the wrong ones. Food was overheating and bubbling over, and eventually the family decided they might have to unplug the microwave entirely.
That would have solved one problem but created several others. Using that microwave allowed her to heat food and prepare simple meals independently. Taking it away meant taking away another piece of her independence.
Then someone in the family brought over black nail polish. The microwave was black, so they painted over every button she didn’t need. When they were finished, only the three buttons she actually used were visible. And she could use the microwave again.
She hadn’t lost the ability to use it. Fifteen choices were simply more than her brain could manage. With three choices, she was successful.
I call that “Substitute, don’t subtract.” Before taking something away completely, ask whether there’s a way to change it so your loved one can continue using the abilities he or she still has.
Dementia can affect the ability to perform daily chores independently, and you may need to hire a dedicated caregiver to help your loved one manage these tasks. If your senior loved one has been diagnosed with a serious condition and needs help with tasks like meal prep, transportation, bathing, and grooming, reach out to Assisting Hands Home Care, a leading provider of senior home care Cincinnati families can trust. We also offer comprehensive care for seniors with dementia, Alzheimer’s, and Parkinson’s.
The Person Is Still There
One of the hardest parts of dementia is watching abilities disappear over time. In the late stages, someone may lose the ability to walk, speak, or swallow. Families sometimes tell me it feels as though their loved one is no longer there. I don’t believe that.
I’ve seen people in the final stages of dementia respond to physical touch, music, a familiar voice, or the temperature of a room. The connection may become nonverbal, but that doesn’t mean the connection is gone.
I have a saying I’ve used for years: dementia changes the brain, never the heart.
No matter the diagnosis or the stage, there’s still a person at the center of the disease. Understanding dementia helps us recognize what’s being lost. Good dementia care also asks us to keep looking for what remains.
Aging in place can present a few challenges for seniors living with dementia. However, they can still live independently at home with the help of professional dementia home care. Cincinnati families can rely on Assisting Hands Home Care to provide their elderly loved ones with mental and social stimulation, timely medication reminders, assistance with meal prep, and much more. Our caregivers are available around the clock to help your loved one live a happier and healthier life. Call one of our friendly Care Managers today to learn more about our customized care plans.
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.
