We recently did a couple of focus groups with spouses/partners of those living with dementia. We asked what our community could do better to provide them with support.

There were a lot of things, of course. However, my team and I keep coming back to one issue that several caregivers brought to our attention.

A couple of women mentioned that their husbands with dementia were not at the point where they needed memory or nursing home care. In fact, their husbands were quite active. They still wanted to spend time with friends. They liked going to brunch, playing cards, and wine night.

These women told us that, as soon as the diagnosis came along, they were no longer on the invite list.

And they were hurt.

They assumed their friends weren’t sure if they could still participate. Or they just didn’t know what to say.

So people living with dementia and their caregivers were ousted from the social circle. No matter the reason, exclusion is painful. And some of the friends who excluded them had been in their social circle for 25 years.

Their friends didn’t ask them, “Hey, are you and Tom still interested in coming over when we have dinner parties?”

Or, “We’d love to have you for card club, but if that doesn’t work anymore, we’d love to just stop by a visit every week or so?”

Sigh.

To be fair, I’ve become more positive about the power of friendship (or even “chosen family”) in our lives as I’ve ventured more into the dementia community. Friendships can be really amazing.

I know a woman who moved across the country to live with her best friend to help caregive when her best friend’s husband was diagnosed with Alzheimer’s. It is common when I do presentations that a female caregiver comes with a friend, who insisted they take the time to show up and serves as the caregiver’s primary support.

It is probably not surprising that I see this less among men. Men struggle with social support when their wives are diagnosed with dementia because it is typical that the vast majority of social support has come from their wives.

When someone has dementia, there are friends who come through. And those who don’t.

I always tell people to focus on the friends who are there rather than the friends who aren’t there.

Sadly, someone recently responded with, “But what if no one is there?”

The purpose of our focus groups was to figure out what we could do better. A few ideas come to mind….

But one that I am passionate about is educating communities about dementia. We do a training called Dementia Friends. People learn the basics of dementia–and how you might interact or support with someone living with dementia. It’s not time-consuming. It’s a one hour training that most people find interesting, and it can be delivered in-person or virtually.

A focus of the training is that people with dementia can have a positive quality of life.

We need to do more of these trainings. We need to impact more people.

We need to talk more about dementia. We need to eliminate the stigma. We need to make interacting with someone who has dementia a normal occurence, not something that is stressful or scary.

If we can do this, when people’s friends have dementia, they may step toward them rather than away.