Introducing Supports for Dementia Care at Home

I was sitting outside with my cup of coffee this morning before the rain, noting just how many plants I have moved over the years because, for one reason or another (too much sun or not enough, the quality of the soil, the plants or trees around it), they didn't do well where they were. Some plants I've moved multiple times in order to find the place they thrive, at least for a time.

One could say it's not so different with people, too, especially as they go down the dementia journey. Dementia comes with unanticipated twists and turns and for the primary caregiver, there often come moments that feel unsustainable, impossible.

No one, especially in the United States, which these days more than others when we more often than not, live far from extended family or have family who are too overextended to help, likes to ask for help. Frequently, money is an issue, too.

If the caregiver goes down, then what?

Extended families can help prevent, delay or otherwise mediate teetering situations by introducing supports at critical junctures, with a spirit of trial and error.

The pandemic has left many of us, myself included, high on pressure and low on patience, but just as it has taken some time and effort in my garden to find where and how certain failing plants can thrive again, similarly some small supports, put in place in strategic ways, can make a big difference.

For example, adult day programs, which are run privately or by churches, as well as some with public funds for those who qualify, often offer half and full-day programs at half the cost of bringing private aides into the home. They also allow the caregiver some space to be at home alone, not to mention, provide a more stimulating and social environment for the person with dementia. Importantly, too, the caregiver may connect with other caregivers in the same situation, which can be mutually supportive.

Bringing help into the home, either through informal companion caregivers or through an agency with Certified Nurse Assistants, might make the most sense for some families. However, there can be an art to this. I remember my grandmother often shutting the door on any help her sons employed to visit her. (I will probably be the same.) Before introducing a caregiver into the home, one might think strategically about the likely barriers. With one recent family whose father was once a powerful executive and could never fathom needing an aide, we employed someone to "help the mother." While the aide was ostensibly helping the mother with laundry and light housecleaning, in reality she was discretely keeping an eye on the father so his wife could get away for the morning without worrying.

In another case, with an extremely social and physically active wife with advanced dementia, we identified those activities that exhausted her caregiver husband and had the aide accompany the wife on walks in various gardens and parks followed by meeting another friend with dementia for lunch.

When bringing in support or attending an adult day program for the first time doesn't go as smoothly as one would like, try to step back, see if an adjustment might help. Is it better to employ help in the morning versus the afternoon? Is one activity better than another? Is one caregiver a better fit than another?

With patience, creativity and sharing the burden of caregiving with a wider circle of paid and unpaid help, families can often extend the time someone with dementia can live at home. Of course, there are behaviors and needs that can arise that may necessitate a move. That is simply unavoidable in some cases.

It is worth asking though, earlier in the dementia journey, if there are strategic supports that can keep the train on the track, and the whole family planted in an ecosystem that works.