When someone is diagnosed with dementia it is typically the beginning of a series of losses for that person and their loved ones. One of the earliest and most significant losses is that of community. A person with dementia loses the place that they once held in the community for a number of reasons. They either choose to withdraw themselves, their loved ones force them to withdraw to protect them from the stigma of dementia, or their community no longer knows how to accept them. All of these reasons revolve around one central theme…..the stigma of Alzheimer’s. If given the choice, almost anyone would tell you they’d rather have their body fall apart and maintain a sound mind than to go through the reverse. So, when the devastating diagnosis comes, they retreat, hide, and essentially disappear from the community of which they were a part.
We are optimistic for a time when the devastation of this diagnosis is softened. A time when instead of retreating, families set wheels turning to lay the foundation for maintaining quality of life. That quality of life is improved by remaining a part of the community. The more we educate those around us what to expect, the more our communities will know how to handle us when we have dementia. The way to overcome a stigma like this is to educate. I’m not talking about educating people about Alzheimer’s Disease and what it is, etc. I am talking about educating people on what they need to do to be prepared for a time when dementia might impact their own family. An education focused on how to care for, and interact with someone with dementia. Without the stigma, family caregivers may be more apt to accept offers of help, be extended if our larger communities knew how to interact with someone who has dementia.
This dilemma is being addressed by some communities. For example, the Parks and Recreation department in Seattle, Washington has a program that organizes outings for people with dementia. In Europe, there is a great focus on creating dementia friendly communities and opening doors to people living with dementia. There are also programs for finding a new community of folks who may be going through some similar losses. We have started an Alzheimer’s Café in Kansas City called the KC Memory Café. Our first meeting is coming up on April 12. An Alzheimer’s Café is a facilitated gathering that brings together people living with dementia and their care partners. The mission of this movement is to create a new community where friendships can develop, we find new ways to have fun, and participants can connect with others experiencing similar loss. To learn more about the concept in general visit http://www.AlzheimersCafe.com and to follow what is happening here in Kansas City like our facebook page at http://www.KCMemoryCafe.com.