In my job as a caregiver consultant at the Amherst H. Wilder Foundation, I work with people who are caring for a family member or friend, often someone with dementia.

I’ve learned from this work that caregiving for a person with dementia is one of the most difficult challenges in life. There’s so much grief and uncertainty for the caregiver and — to make matters worse — often the person they’ve always turned to for counsel and comfort is slipping away.

There’s a lot I can offer to help these families, including finding community resources such as day programs, open invitations to support groups and coaching on how to manage difficult behaviors.

One of the most frequent requests I get from caregivers is help with the transition from caring for the person at home to caring for them in memory care.

For caregivers who are ready to make that transition, I can offer information about the different types of memory-care facilities, the costs and even ideas about how to evaluate them.

But for many the struggle is less in figuring out where to move the person and more about when.

This decision, like so many caregiving decisions, is deeply personal and unique to each situation.

Many caregivers ask for a sign that it’s time — such as a diagnosis or a test that will then result in a prescription for memory care.

I understand this desire for certainty, and I wish I could give it. While there are assessments that can give information about the safety of someone being left alone or the amount of care a person needs, there’s no assessment that can definitively say to a caregiver, “The care this person requires is now beyond what you can do at home.”

So many caregivers find themselves stuck in uncertainty about whether they should move their loved one and/or themselves to more supportive housing.

Even though I can’t tell a caregiver when it’s time for them to move, I can suggest that they consider more than just the needs of the person they’re caring for.

I tell them that if they have the money and the ability, they can care for someone at home for a very long time. But at some point, it may come at a cost to their own health, wellbeing and possibly their relationship with the person they’re caring for.

I also remind them that just because the person they’re caring for will be living in a facility, they most definitely still will be doing caregiving!

I also encourage caregivers who are grappling with this decision to meet with other caregivers. Other caregivers understand better than anyone what they’re going through.

Earlier this spring and again this summer we hosted a series of events for caregivers thinking about moving. They included information on available housing, rights of residents and their families in facilities, and tours of a few facilities to get an idea of what they look like and what questions to ask.

Many caregivers said the most valuable part was hearing from others about what they were looking for and what questions they were asking.

Deciding when it’s time to move someone into memory-care facility is very difficult and complex.

There’s support available, however, even if there aren’t easy answers.

Catherine Engstrom is a licensed social worker in Caregiver Services at the Amherst H. Wilder Foundation in
St. Paul. Learn more at wilder.org.