Skip to main content

The Alzheimer's Playbook

Susan Frick | 24 September 2019

“I wish there was a playbook for Alzheimer’s disease.”

Over the past year, this comment has come up frequently in our Without Warning meetings, by both people with dementia and family members. Knowing what is coming next and having a guide of how to respond, is a common wish for anyone. But, when living with the uncertainty and fluctuation of dementia, this desire for a playbook or roadmap can be even stronger.

As a support group facilitator, I find it a challenge to provide support and education on the course of Alzheimer’s or other forms of dementia without overwhelming the person. As we know with dementia, people can progress differently and what happens for one family doesn’t always happen for the other.

Having people with different experiences and at different points of the illness in the same group becomes another challenge for the support group leader. I find as the leader it is important to let people share their current experiences without having them place judgement or expectations on others. At times you might have a person in your group who makes others feel that there is the only one way to experience dementia – the way it happened in their family.

Setting the tone of acceptance for each person’s journey becomes our job as the facilitator. Maybe you set up ground rules which are handed out to new members. Maybe it’s a phrase you repeat during meetings. I find myself often saying, “Everyone experiences dementia a bit differently but here are some common themes.”

So, maybe that becomes our playbook – a basic knowledge of dementia, the understanding that people's experiences are different, the realization that living with uncertainty is stressful, and the comfort in sharing all these experiences, both the common and the unique, with people who understand and are there for each other.

Susan Frick is the Director of the Rush Alzheimer's Disease Center Without Warning Program