Dr. Patricia Wells

You've worked with hundreds of families navigating dementia. What's the most common mistake you see caregivers make?

The most common mistake is waiting too long to ask for help — and I see it across all backgrounds and family structures. Caregivers develop an identity around doing everything themselves, and accepting help feels like failure. But caregiver burnout is one of the greatest threats to the quality of care someone with dementia receives. When the primary caregiver collapses, everything collapses.

The second most common mistake is not planning ahead legally and financially. I've had patients in the middle stage of Alzheimer's whose families had no power of attorney, no healthcare proxy, no advance directive. Getting those documents in order in the early stage, when the person can still participate in the decisions, changes everything about the later stages.

What do you wish family members understood better about behavioral symptoms in dementia?

That they are symptoms, not choices. When someone with dementia becomes aggressive, or wanders, or refuses bathing, or screams — they are not being difficult. Their brain is damaged and they are, in many cases, frightened or in pain and unable to communicate it. The behavior is communication.

This reframe changes how families respond. Instead of "why are you acting this way," the question becomes "what are you trying to tell me, and how can I help?"

What gives you hope in your work with caregiving families?

The resilience I witness constantly. People who had no medical background become expert advocates for their loved ones. Siblings who haven't spoken in years come together around a parent's care. Caregivers who thought they couldn't survive another day find, somehow, a way to carry on — and often discover capacities in themselves they never knew they had.

This work is hard. But the love that motivates it is extraordinary.