stigmaLast week a video made by a man with Alzheimer’s and his wife went viral. In it, Mary Beth Beamer asked her husband Alan what he would like to say to friends who have stopped visiting him since his diagnosis. Alan makes an emotional outpouring, asking his friends to visit and talk to him just like they used to before he was diagnosed. He says, “They just have to come over for 5 or 10 minutes, but they don’t stay 5 minutes. I would love it if they came over and stayed over for a while, and we could talk about what’s going on…”

You can watch Alan’s video here.

Most people with dementia know exactly what Alan is talking about. He’s not alone.

To let Alan and Mary Beth know they aren’t alone — and to let the general public know that most people with dementia experience the same sort of abandonment by friends — I got together with a group of people with dementia over the weekend to craft a video message. We met on Zoom as we’re located all over the US and Canada. We talked about how Alan has done a lot for Alzheimer’s awareness by speaking out, and how his video made them reflect on their own families and how everyone in the family was affected by the stigma. They talked about some strategies for including people with dementia in the conversation, and they confronted the stigma of dementia head-on, calling a spade a spade.

The final short video message to Alan and Mary Beth Beamer is shown below. The message about the stigma comes out loud and clear, book-ended by words of love and encouragement to Alan, Mary Beth and their family. Please share it to make sure Alan and Mary Beth also see it, and so that more people know that just about everyone affected by dementia is also affected by the stigma and the wrong assumptions the stigma causes us to make.

Many thanks to Jan Ford, Kelly Wood, Teresa Webb, Mary Beth Wighton, Michael Ellenbogen and Chuck Frichot for making this video!

It’s time to change the story of dementia!

For information about support groups for people with dementia, contact your local Alzheimer Society or Alzheimer’s Association office, or for online support groups, contact Dementia Alliance International or Mindset Centre for Living with Dementia.

Mary Beth Wighton is a member of the Ontario Dementia Advisory Group, a group of advocates with dementia in Ontario, Canada. Click here to get involved or visit their Facebook page.