When a loved one develops dementia, family members often find themselves concentrating on everything that has gone wrong. She can’t manage her bills anymore. He can’t remember to use his walker. She can’t operate the microwave. He can’t figure out how to start eating his dinner.
Those observations are important. Dementia is progressive, and over time, families must step in to handle tasks that are no longer safe or manageable. But after nearly three decades of working with people living with dementia, I’ve learned that another question is just as important: What can this person still do?
The answer can change the way we provide care.
Dementia Changes Ability, but Not Always in the Way We Assume
One reason dementia is so challenging for caregivers is that we cannot see the physical changes happening in the brain. A visible physical limitation gives us an immediate explanation. If someone is using a walker, we recognize the person may need extra time or assistance. When dementia causes someone to make an unusual decision, forget an important task, or experience difficulty with something he or she has done for decades, the cause is less obvious.
Family members may think the person is being stubborn, careless, or intentionally difficult. Often, what the person is actually seeing is the effect of a changing brain. Dementia involves physical and chemical changes that can eventually affect memory, language, judgment, movement, behavior, and the ability to complete everyday activities. Remembering that the brain itself is changing can help caregivers focus less on correcting the person and more on identifying the support he or she needs.
The “Can-Do List”
Families quickly develop what I call a “can’t-do list.” Dad can’t cook safely. Mom can’t manage money. Dad can’t remember his medication. Mom can’t choose appropriate clothes. Every item on that list matters because a family member or caregiver may need to take responsibility for it.
But I encourage families to make a second list alongside it: the “can-do list.” Sometimes a person hasn’t lost an entire skill. He or she has lost one piece of the skill.
I once worked with a family who believed their mother could no longer dress herself. Their concern was understandable. They might arrive during cold winter weather and discover her wearing shorts, a tank top and flip-flops. At first glance, “Mom can’t dress herself” seemed accurate.
But when we broke the activity down, she could open the closet, select clothing, and physically put the clothing on. What she could no longer reliably do was judge which clothes were appropriate for the weather. Those are two very different problems.
Instead of taking over dressing completely, the environment could be changed. If only seasonally appropriate clothing was available, Mom could still make choices and dress herself. We removed the part of the task that had become difficult without removing her independence from the entire activity.
Simplification Can Be More Powerful than Assistance
Mealtimes offer another example. Imagine someone with dementia sitting in front of dinner without taking a bite. A caregiver may conclude the person can no longer feed him or herself and begin feeding him or her. Sometimes that assistance is necessary, but other times the person may simply be unable to figure out how to start.
Several utensils, different foods, and multiple decisions can create more complexity than the person’s brain can process. Reducing the number of choices may help. If that doesn’t work, placing the fork in your loved one’s hand or helping with the first bite may be enough to get the process started.
You may discover your loved one can independently eat everything else on the plate. In that situation, your loved one didn’t lose the ability to eat. Dementia affected the ability to initiate the task. That’s an important distinction because doing everything for someone can unintentionally remove abilities he or she still has an opportunity to use.
One Microwave Taught Me an Important Lesson
A woman with early-stage dementia once began having trouble with her microwave. It had roughly 15 buttons, and while she had previously used it successfully, all those options became confusing as her dementia progressed. She started pushing the wrong buttons, overheating meals, and causing food to bubble over. Her family worried about safety and began considering unplugging the microwave.
There was nothing unreasonable about that response. Removing the microwave would remove the immediate problem, but it would also remove one of the ways she was still preparing food independently. Then the family came up with a wonderfully simple solution.
The microwave was black, so they took black nail polish and covered every button she didn’t need. When they finished, only three useful buttons remained visible, and she could use it again. The issue wasn’t that she had completely forgotten how a microwave worked. Her brain simply could not successfully navigate 15 choices anymore. Three choices were manageable.
I call this approach “Substitute, don’t subtract.” Whenever possible, adapt the activity before eliminating it.
Why New Routines Can Be Difficult with Alzheimer’s Disease
Understanding the specific type of dementia can also help families determine what kinds of support are likely to work. Dementia isn’t a single disease. It’s an umbrella term covering multiple diagnoses, including Alzheimer’s disease, Lewy body dementia, vascular dementia, and frontotemporal dementia.
Alzheimer’s disease, the most commonly diagnosed type, often creates difficulty retaining new information. Consider what happens after a fall. Dad falls, and his family gets him a walker. To everyone else, the logic is straightforward: Dad fell, the walker makes him safer, so Dad should use the walker.
But Dad has never used one before. If Alzheimer’s has affected his ability to retain new information, his brain is now being asked to learn what this unfamiliar object is, remember why he needs it, and incorporate it into an established routine. He may stand up and walk away while the walker remains on the other side of the room.
The family becomes frustrated and wonders, “Why won’t Dad use his walker?” The better question may be: Is Dad’s brain still able to learn and consistently retain this new routine? Changing the question changes our approach.
Different Diagnoses Can Produce Different Behaviors
Not every type of dementia affects the brain in exactly the same way. A person with Lewy body dementia may experience movement difficulties, falls, visual disturbances, or delusions. The person’s abilities may also fluctuate significantly, which can be confusing for families because someone may accomplish a task successfully on Monday and have difficulty with it on Tuesday.
That inconsistency can look intentional. A caregiver may naturally wonder, “If she did it yesterday, why can’t she do it today?” But fluctuating abilities can be part of the disease.
Vascular dementia may also produce sudden changes and considerable variation between good and bad days. Frontotemporal dementia can have major effects on behavior, impulse control, language, and the ability to initiate or sequence activities. A diagnosis does more than give the condition a name. It can give caregivers clues about why certain behaviors and limitations are occurring.
Normal Forgetfulness and Dementia Aren’t the Same
Memory problems receive a great deal of attention, but dementia is about more than forgetting. One simple example involves keys. Almost everyone has misplaced his or her keys. You put them down somewhere unusual, search the house, and eventually find them. The moment you see them, you know exactly what they are and what to do with them.
A person with Alzheimer’s disease may eventually encounter the keys and no longer understand their purpose. That difference is important. When families are concerned about dementia, I encourage them to pay attention to changes in functional ability. Is forgetfulness interfering with your loved one’s capacity to safely manage daily life? Are familiar activities becoming confusing? Is your loved one increasingly relying on others to complete tasks he or she previously handled independently?
The effect on daily functioning often tells us more than an occasional forgotten name or misplaced object.
Living with dementia can make it difficult for seniors to manage everyday tasks on their own. 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 Northern Kentucky 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.
Dementia Progression Isn’t Always a Smooth Decline
Dementia is generally progressive, but progression can look different from what families expect. Rather than imagining a smooth downward slope, imagine a staircase. Someone may decline and then remain at that level for weeks or months. Another decline occurs, followed by another plateau.
Families should also pay attention to unusually sudden changes. A rapid decline can sometimes signal another problem, including illness, injury, or a significant environmental change.
Broadly, dementia is often described as mild, moderate, or late stage. Early changes might include difficulty finding words, getting lost in familiar places, or trouble planning and organizing tasks. As the disease reaches the moderate stage, challenges increasingly interfere with activities such as managing finances, cooking, bathing, and dressing. During later stages, a person may require assistance with almost every aspect of daily life.
Dementia currently cannot be cured, and it can ultimately be terminal. We cannot reverse the underlying disease, but that doesn’t mean there’s nothing we can do. We can change the environment, simplify choices, adjust expectations, change the way we communicate, and preserve abilities for as long as possible.
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 Northern Kentucky families can trust. We also offer comprehensive care for seniors with dementia, Alzheimer’s, and Parkinson’s.
Fear Can Look Like Defiance
One of the most important things caregivers can do is consider what may be happening beneath their loved one’s behavior. During early dementia, people sometimes recognize they’re changing, and that can be terrifying.
I have heard older adults say countless times that they hope they never “lose their mind.” When someone begins experiencing memory problems or other cognitive changes, he or she may realize the thing he or she feared is beginning to happen. Then other fears emerge. What if my children take over my finances? What if they tell me I cannot drive? What if I’m forced to leave my home? What if everyone starts making decisions for me?
Seniors may deny problems or insist they’re doing things independently that family members know they’re no longer managing successfully. It can appear dishonest or defiant, but fear of losing independence may be driving that response. Seeing the fear underneath the behavior doesn’t eliminate safety concerns. It does help us approach those concerns differently.
Preserve What Remains
Eventually, dementia can take away profound abilities. In late stages, people may lose speech, mobility, and the ability to swallow. Family members sometimes describe feeling as though the person they love is already gone.
I’ve seen enough people with advanced dementia to believe we should be careful with that assumption. Someone who can no longer speak may still respond to a familiar voice. Someone who cannot participate in a conversation may respond to music. Gentle touch or even the temperature and atmosphere of a room may still affect the person. Connection can continue even when it no longer looks the way it once did.
That’s why one phrase has stayed with me throughout my career: Dementia changes the brain, never the heart.
Caring well for someone with dementia means recognizing genuine limitations and providing the assistance needed to keep that person safe. But it also means resisting the temptation to take over too quickly. Simplify before eliminating. Adapt before removing. Cue before completing the task for your loved one.
Most importantly, continue looking for your loved one and the abilities that remain, not only the ones dementia has taken away.
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. Northern Kentucky 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.
For those interested in learning more about dementia, I host a monthly Real Talk webinar that explores one important dementia-related topic in greater detail. Learn more about upcoming sessions and register here.
