You know how frustrating and heartbreaking dementia symptoms are from the point of view of a caregiver. You know the pain of slowly seeing a loved one slip away. But what is it like for them? What is it like for a person to slowly -- or sometimes quickly -- forget almost everything they ever knew?
Dementia is ultimately a lonely condition, and you can never truly know what it’s like for your loved one. But by asking experts – and people who are themselves in the early stages of the disease – we can get some idea.
“It’s devastating,” says Mary Ann Becklenberg, of Dyer, Ind., who was diagnosed with Alzheimer’s disease in 2008 at the age of 62. “I am acutely aware of all those areas in which I am not competent anymore, both small and large. Coming to terms with my own deficiencies is so hard.”
Learning something about the other side, beyond the dementia symptoms you see, could make you feel closer to your loved one. It could also make you a more understanding and effective caregiver.
Memory Loss: “Everything Became Fuzzier”
Dementia symptoms result from damage to the brain caused by disease or injury. As brain cells die, it becomes difficult or impossible to store new memories or access old ones. Sometimes dementia comes on suddenly, after a stroke or head injury. Often it comes on more slowly as the result of conditions like Alzheimer’s disease or Parkinson’s disease. Most causes of dementia cannot be reversed.
Mary Ann Becklenberg is in the early stages of Alzheimer’s disease, but her dementia symptoms have already had an enormous impact on her life. In 2006, she had to leave her position as a clinical social worker because she could no longer meet the responsibilities. “The world became much less defined than it had been,” says Becklenberg. “Everything became fuzzier.”
The diagnosis didn’t come until later. John Becklenberg says that he first knew that his wife had Alzheimer’s disease after she returned from a monthlong trip to California. “I was there with her for a week of her stay,” he says. “But when she got back, she didn’t remember that I’d been there at all.”
“That was so hard,” says Mary Ann Becklenberg, who now serves as an Alzheimer’s Association early stage adviser. “John listed all these things we did and places we went, and I didn’t remember any of them. That was when we knew.”
Dementia Symptoms: What Memory Loss Means
Some people think of memory loss superficially, as merely forgetting words or names. But it’s much more profound than that. Everything we do is premised on memory. When you walk into the kitchen to make dinner, your actions are almost unconscious. You grab food from the fridge, turn on the oven, take out plates and silverware – your memories are a foundation, and they give you a context for what you’re supposed to do in a given situation.
For a person with dementia, that context is ripped away. A woman with Alzheimer’s disease may walk into a kitchen and have no idea why they were there or what were supposed to be doing. They might still be able to make dinner – especially in the early stages of the disease – but it’s a struggle. Each step has to be reasoned out and thought through. That’s why people with dementia tend to act more slowly than they once did.
In the advanced stages of the disease, the actions of a person with dementia may seem irrational. But Beth Kallmyer, MSW, director of client services for the national office of the Alzheimer's Association in Chicago, says that they often make a kind of warped logic.
“Our brains are built to reason,” says Kallmyer, “and even when the brain has been affected by a disease like Alzheimer’s, it’s still struggling to reason.” The problem is that as memories are lost, the brain just doesn’t have enough information to interpret situations correctly.
Dementia Symptoms: What Caregivers Should Know
As a caregiver, you may find certain dementia symptoms frustrating, baffling, and sometimes frightening. But what is the other side of the story? What is your mother doing -- and feeling -- when they put their wedding ring in the freezer or accuse you of stealing from them? Here are some clues to understanding dementia behavior.
- Forgetting. Obviously, memory loss is the essential dementia symptom. What is it like? We’ve all experienced the frustration of losing our keys seconds after we had them in our hands. Imagine that frustration, magnified and repeated constantly throughout the day.
In the early stages, people are well aware of this particular dementia symptom. They know that they’re losing their memories.
“Think about how you’d feel if someone brought in your granddaughter and you didn’t know who she was,” says Kallmyer. “You know you should know who she is, but you just don’t. You’d feel humiliated, frustrated, and afraid.”
What’s especially confusing to caregivers is that while the condition may be progressive, individual memories may pop in and out. One day, your mother doesn’t remember how to turn on the oven. The next, they successfully roast a turkey. That sort of inconsistency is just a typical dementia symptom.
- Difficulty communicating. One early-stage dementia symptom is difficulty following conversations, even though the person might cover it up well. “Sometimes, it really is easier to go along -- to laugh and pretend that I know what a person is talking about,” says Becklenberg. “I guess you could say I’m doing it to save face.”
It’s understandable, experts say. It’s a natural desire to avoid the humiliation of having to say, “I don’t’ remember,” over and over again.
As the disease progresses, these dementia symptoms worsen. A person’s language might become artificially complex and contorted, as they navigate around the countless words that have dropped out of their vocabulary. There will come a point where they’ll have difficulty articulating even basic needs. “Sometimes, the best a caregiver can do is guess,” says Kallmyer.
- “Lying” and Confabulation. Pretty quickly, caregivers learn that they can’t trust their loved one’s answers even to very basic questions like “What did you have for lunch?” These apparent lies can make caregivers feel betrayed and angry.
It’s true that in the early stages of the disease, people with dementia might fib to cover for memory loss. But most examples of “lying” are dementia symptoms rather than intentional deception. “They’re more like an unconscious defense mechanism,” says Kallmyer. Specifically, it’s called confabulation – unconsciously replacing lost memories with fabrications.
What’s behind this dementia symptom? Our brains are always trying to make sense of things, to impose order on the information we take in. But when a person has dementia, whole experiences are constantly being lost, which makes it difficult for the brain to get its bearings. So the unconscious mind fills in the gaps, swapping in an old memory or coming up with a plausible alternative.
As a caregiver, you might be disturbed when your father sits down to Christmas dinner and says, “Happy Thanksgiving!” But from their perspective, they have no memory of opening gifts 20 minutes ago. Instead, they see extended family sitting around the dining room table and make an unconscious guess as to why they’re there. Their brain tries to fill in for the missing information. Sometimes it’s right and sometimes wrong.
- Anxiety and Depression. It can be difficult for a caregiver to see a loved one – who may have been generally optimistic and easygoing when they were well -- become anxious or depressed. Both are common dementia symptoms, and it’s hardly surprising. While their memories may fade, people with dementia are aware of what’s happening to them, at least in the early stages. They know that they have an incurable, degenerative disease. They can feel the scope of their world becoming more and more confined as they lose freedoms like driving. They know that they’re losing part of themselves too.
“Prior to having this disease, I wasn’t a person who needed to ask for help much,” says Becklenberg. “But now I do, and it’s been a blow to my self-assurance and self-esteem. I can’t participate fully in life like I used to, and it’s a huge loss.”
- Wandering. It’s not uncommon for a person with dementia to wander – to walk out of the house in a seemingly random direction. Caregivers can find this dementia symptom mysterious. Why would a loved one leave the safety of their home to wander through unfamiliar streets?
Sometimes, it’s aimless, the product of boredom. But in other cases, there’s a reason behind this dementia symptom. When a person has dementia, even the house they lived in for decades might suddenly be unfamiliar. Confused, they want to get out and search for a place that they recognize and where they feel safe. “Sometimes people who wander from their homes say that they’re trying to go home,” says Kallmyer. “It confuses caregivers, but the person might mean a different home – maybe the home she grew up in.”
- Fear and Aggression. As the world becomes more confusing, and even their closest family members seem like strangers, people with dementia can feel defenseless and afraid, trapped and angry. Sometimes they can become physically aggressive, which can be frightening for a caregiver. How could your loved one turn on you?
Look at this dementia symptom as a defense mechanism -- you’re not the real target of the aggression. Instead, a person with dementia is trying to fight back against the confusion and chaos. Kallmyer says that if a loved one is prone to aggression, it could reflect a specific problem that they can’t articulate. Sometimes just getting more physical activity during the day can reduce this dementia symptom, too.
- Paranoia. A person with dementia may become irrationally suspicious of the people around them. They might become convinced, again and again, that someone has stolen their wallet. It can be demoralizing – after all the work you do as a caregiver, being called a thief a couple of times a day isn’t fun.
But Kallmyer urges people to look at this dementia symptom from the other person’s perspective. “Imagine that you go to get your wallet right where you left it and it’s gone,” says Kallmyer. “You positively know you didn’t move it – because you have no memory of doing that. So the only logical conclusion is that someone else did. That’s the reality from the perspective of a person with dementia.”
Finding the Message in Dementia Symptoms
When it comes to understanding dementia symptoms, Kallmyer says that there are limits to what a caregiver can do. “Sometimes, the behavior of a person with dementia will have no meaning,” she says. “The disease is just destroying their brain cells, and their actions have no rhyme or reason.”
But other times, Kallmyer says, seemingly irrational dementia symptoms will cloak a message that you can decode. “We like to think of all behaviors as forms of communication from a person with dementia,” she tells WebMD. Taking the time to interpret and understand could not only get your loved one what they need, but also bring you closer together. While the relationship you once had with your loved one will fade away, you may forge a new and different but still meaningful connection.
John and Mary Ann Becklenberg can’t know what the future holds for them, but for now they’re focusing on what they have.
“I think that we’ve actually felt closer as a result of this disease,” says John Becklenberg, who is the primary caregiver for his wife. “I’ve had to slow down some and take more time with her.”
Mary Ann Becklenberg is grateful. “Caregivers really don’t get the respect that they deserve,” she says. “They’re the unsung heroes of diseases like Alzheimer’s.”
She also has some advice. “Despite the difficulties, I’d urge caregivers and people with [dementia] to try to find the humor in their lives,” she says. “John and I laugh about things, and it helps. People really need to know that.”