Dementia Difficulties:
Navigating Hard Conversations

Caring for someone with Alzheimer’s or another form of dementia presents challenges beyond those of many other caregiving roles. As the disease progresses, care partners are often faced with difficult but necessary conversations — such as when driving is no longer safe, when in-home help is needed or when it’s time to consider a care facility. Nathaniel Chin, M.D., medical director of the Wisconsin Alzheimer’s Disease Research Center, has extensive experience guiding families through these moments. During an AFA Fireside Chat, he shared practical advice for navigating these conversations, beginning with when and how to discuss driving.

Asking a person to stop driving

“It’s one of the hardest discussions in our clinic,” Chin said. “Driving represents much more than getting from point A to point B — it’s independence and choice. Being told you can’t do this anymore signals that something drastic has changed.”

Conversations about stopping driving usually happen in the mild-tomoderate stages of dementia, when the person may not fully understand what’s happening. “It can feel like a surprise, even if it’s been discussed before,” Chin said.

Driving cessation can be especially difficult when the person with dementia is the primary driver, particularly in rural areas. “That’s a major shift,” Chin noted. “There needs to be a system in place, which is why these conversations should start well before driving stops.”

Warning signs include getting lost while driving alone, fender benders and traffic violations. Even earlier signals may include reduced confidence or deferring driving to a partner. “They still want to drive,” Chin said. “They’re just not confident.”

Chin refers to this as “driving fitness,” noting that tasks like making left turns — which require higher executive function — can be especially telling. He also asks families, “Would you let your grandkids ride with this loved one?”

Because giving up driving is so difficult, Chin recommends involving a healthcare provider. “Blame the doctor,” he said. While physicians can’t assess driving ability directly, they can refer patients to occupational therapists and help families plan safe alternatives, such as car services or rides from family, friends or neighbors.

Bringing in help

Chin understands why many people living with dementia oppose bringing in an aide.

“You’ve taken away their car keys, their freedom, now you’re going to take away their comfort and the privacy of their home. But this isn’t just about their privacy. It’s about the person they love who’s helping them. They have needs, too.

“One of the things the caregiver can do is sit down with their loved one when they’re in their best state and their best mood. That opens the door for the caregiver to say, ‘This is how I feel. I’m feeling really overwhelmed, and I would like someone to come into the home to help me. They’re going to be in this space with us, and I want to know that you’re going to be OK with it.”

If the person still opposes the idea, emphasize that you need help.

“You could say, ‘Well, I’m going to do it, and I want you to understand why.”

He said he learned from his social worker colleagues to tell the person you will give it a trial run and mention a set number of weeks. Don’t mention that the person will be bathing or dressing them.

“You want to say they’re going to be helping around the house, doing things that aren’t personal.”

If the person remains resistant, Chin says wait as long as possible before hiring someone.

“If they wait long enough, the person loses enough insight that they start to be less resistant to those challenges. I’m not advocating just toughing it out as long as possible, but this is what I tend to see in our clinic.”

Transitioning to a care facility

To help his patients’ care partners make this decision, he asks them what it would take to make them feel they could no longer provide the right level of care.“Many people will say they can’t handle the incontinence or physically they can’t pick up the person. That plants the seed for the caregiver.”

He suggests raising the subject by telling the person that their home may not be the safest place at some point, “not forcing the moment but preparing for down the road and coming back to it when it is about safety.”

He says it often helps if the care partner acknowledges that the person wants to stay home but that it is time for a change, and offers a possible script:

“’It’s not what you’d want, but this is what we’re going to do. So how do we make this transition the best way we can, given that this is the way we are heading? I think that kind of honesty, as a family member to another family member, is something they can appreciate, and they can still feel valued. It shows respect and dignity for the loved one.”

The patient’s medical team can help facilitate the conversation. And the change often results in the person finding happiness in the care facility.

This article was adapted from an AFA Fireside Chat. To see the complete episode, go to www.alzfdn.org/event/navigating-difficultcare- conversations