When you see changes and worry about dementia

By Heather Costello, MSW, LICSW, CDP

Over the last few months, John* noticed that his mother had started to forget words and lose her place during their conversations. He thought she was distracted by the grief of losing her husband less than a year ago.

Then he got a call from her on a Wednesday evening when she should have been at bingo with her friends. He was even more surprised to hear her frantically telling him she couldn’t find the church. 

Yet when he went to pick her up, Charlotte seemed composed, and she brushed off her confusion. She said she’d been preoccupied by the anniversary of her late husband’s cancer diagnosis, and then a construction detour and the seasonal darkness threw her off even more. John was willing to accept her explanation.

Three months passed before he learned that Charlotte had gradually stopped calling her friends and quit bingo entirely. That meant she was alone most of the time. Then John was really worried, but he wasn’t sure what to do, if anything.

Difficult conversations ahead

When you notice memory lapses, behavior changes, confusion, poor judgement or a decline in driving ability in someone you care about, it can be alarming. And confusing. How do you know if a forgotten conversation is a sign of dementia, normal age-related change, stress or something else?

Many people want to immediately confront the person and discuss the issues they see. But these can be delicate topics to bring up in conversation. Depending on your relationship and the situation at hand, you may be better off approaching the issue gradually and cautiously to reduce the risk that the person will take offense. If they feel angry, hurt or defensive, you may find that they shut down completely—and shut you out. Think about how you can meet them halfway to understand what makes them comfortable or uncomfortable.

On the other hand, it’s possible to wait too long to have these difficult but important conversations. Dementia or other illness affecting cognitive function can advance too far for the person to be able to express their wishes for how they want to be cared for and what medical treatment they want to receive.

Consider the context

In the situation John describes, Charlotte’s behavior isn’t necessarily the result of early-stage Alzheimer’s disease or another type of dementia, but it could be. Determining whether changes in memory are due to normal aging or dementia can be challenging, especially if the person is working hard to hide those changes.

When I talk with caregivers like John, I encourage them to consider ahead of time some of the possible reasons for his mother’s behavior and then ask some questions in a conversational way. Did Charlotte stop going to bingo because she doesn’t feel like being around a lot of people? Because she’s physically not feeling well? Because she’s mourning her late husband or feeling depressed for other reasons? While issues like those need to be addressed, they don’t indicate a problem with her thinking processes.

There can also be normal age-related changes in the brain. For example, you’re 65 or 70 and you go out to dinner with a group of 15 friends from high school. When you’re telling your spouse about it the next day, you might not remember the names of everyone who was there. That’s normal aging.

Forgetting details is less of a concern than forgetting large chunks of a conversation or an event. If your spouse asks you about the event the next day and you don’t remember that you were at a restaurant the night before—or don’t remember going to the event at all—that’s not normal.

Many factors involved

John started visiting his mother in person more often, so he could get a better sense of how she was doing on her own. And he could take it slow in bringing up the topics that concerned him. When she was nervous or upset, she didn’t want to talk about what she was feeling, but over weeks of visits, there were calm times when she talked openly and honestly. It’s helpful to be patient, as best you can, and listen closely.

As it turns out, she gave up driving to bingo after getting lost on two more occasions. Her friends brought her once after that, but she said it was hard for her to hear and embarrassing to have trouble following the game.

Those could be early signs of dementia, but a doctor would need to evaluate Charlotte. Other factors, such as her hearing loss, could be affecting her perceptions and stress level. Hearing loss can be involved in changes in cognitive activity, according to a 2016 study published in the journal Aging Health. There are also physical conditions—from depression to stress to lack of sleep—and medications that can cause dementia-like symptoms. Mixing them up can mean that early stage symptoms get passed off as something else.

Making a case for calling the doctor

After considering your loved one’s situation, you may feel strongly that they should see a doctor. Your loved one may agree, but there’s always the chance that they may be reluctant or even refuse. Make it clear that you’re coming to the conversation from a place of genuine concern for them.

Let them know that dementia-like symptoms are sometimes caused by other conditions and illnesses or by medications and that it’s important to identify and address those root causes—so they don’t get worse. Also explain that if it does turn out to be Alzheimer’s or another type dementia, early treatment may be able to slow progression of the symptoms, even though there is not yet a cure.

If they still refuse, you can provide information directly to your loved one’s primary care provider (PCP)—even if your loved one doesn’t give the PCP permission to share information with you in return. You can make a phone call or, even better, inform the PCP in writing. Explain how many times your loved one has gotten lost, what behavior/personality changes you’ve seen (and who else has noticed), concern about unsafe driving practices or car accidents, and anything else you think the doctor should know. 

This additional information can also be helpful if your loved one is good at downplaying or hiding possible dementia symptoms. Without it, the PCP may dismiss them as “normal aging” or as symptoms of stress or menopause.

Don’t wait for a crisis

Even though planning ahead is ideal, it’s more common that something happens to bring things to a head—such as having multiple car crashes, getting lost, forgetting where they’re going or what they’re saying, or acting in ways that are out of character.

Sometimes things have to start to fall apart, and the resulting crisis or event sparks change. I find that many families would like to step in at that point and take charge of the situation, but I remind them that they can’t control everything. One of the best things you can do is stay aware of what’s happening, so you can step in at the right time to help.

*Names and identifying details have been changed to protect anonymity.

Heather Costello is a memory specialist and Behavioral Health Case Manager for Fallon Health.