When you see changes and worry about dementia
By Heather Costello, MSW, LICSW, CDP
Over the course of a few months, John* noticed that his mother Charlotte had started to forget words and lose her place during their conversations. He thought she was distracted by the grief of losing her husband earlier in the year.
Then he got a call from her on a Wednesday evening when she should have been at bingo with her friends. He was surprised to hear her frantically telling him she couldn’t find the hall.
Yet when he picked 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. John became very 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 talk to the person about the issues they see. But changes like these can be delicate to bring up. And depending on your relationship and the situation at hand, you may be better off approaching the issue gradually and cautiously.
Taking your time and easing into this delicate conversation may help reduce the risk that your loved one will have a negative reaction. If they feel angry, hurt, or defensive, they may shut down completely. And that shuts you out. Think about how you can meet them halfway to understand what makes them comfortable or uncomfortable.
However, it’s also possible to wait too long to have these difficult but important conversations. Dementia or another illness affecting cognitive ability can sometimes progress quickly. This can make it difficult for the person to be able to share 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 is important. It can also be challenging—especially if the person is working hard to hide those changes.
When I talk with people like John, I encourage them to consider some of the possible reasons for these changes in behavior. That way, they can ask some questions in a conversational way, which can put your loved one at ease.
For example … 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 these should be addressed, they don’t indicate a problem with her thinking processes.
There can also be normal age-related changes in the brain. Take this scenario: 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.
But 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. Forgetting details is less of a concern than forgetting large chunks of a conversation or an event.
Many factors involved
John started visiting his mother more often, so he could get a better sense of how she was doing on her own. This meant he could take it slow in bringing up the topics that concerned him. When Charlotte was nervous or upset, she didn’t want to talk about what she was feeling. But during several weeks of visits, there were times when she was calm and talked openly and honestly. John found that it’s helpful to be patient, as best you can, and to listen closely.
As it turns out, Charlotte gave up driving to bingo after 2 more times of getting lost. Her friends brought her once after that, but she said it was hard to hear during the game and embarrassing when she had trouble following it. Those could be early signs of dementia, but a doctor’s evaluation is needed to confirm a diagnosis.
Other factors could be affecting her perceptions and stress level. For example, hearing loss can be related to changes in cognitive activity, according to a study led by researchers at the Johns Hopkins Bloomberg School of Public Health. There are also other conditions—from depression to stress to lack of sleep—and medications (over-the-counter and prescriptions) that can cause dementia-like symptoms. This means that early-stage symptoms may get passed off as something else.
Making a case for calling the doctor
After considering your loved one’s situation, you may feel strongly about them seeing a doctor. They may agree, but there’s always the chance that they may be reluctant or even refuse. Make it clear that you’re coming 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 the root causes. Explain that if it does turn out to be Alzheimer’s or another type of dementia, early treatment may be able to slow progression of the symptoms, even though there is not yet a cure.
If your loved one still refuses, you can provide information directly to their primary care provider (PCP)—even if the PCP doesn't have permission to share information with you in return. You can call the PCP or inform them in writing. Explain how many times your loved one has gotten lost, what behavior/personality changes you’ve seen (and who else has noticed), the concerns you have about unsafe driving practices or car accidents, and anything else you think the provider should know.
Providing this information can be helpful if your loved one is good at downplaying or hiding possible dementia symptoms. Without it, the PCP may dismiss these symptoms as “normal aging” or menopause or as signs of stress.
Don’t wait for a crisis
Even though planning ahead is ideal, it’s more common that people start making plans after something critical happens, such as multiple car accidents, getting lost frequently, increased forgetting of where they’re going or what they’re saying, or acting in ways that are out of character.
Sometimes things have to start falling apart and lead to a crisis situation before people realize changes are needed. 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.
This is the 1st post in a 3-part series about dementia.