Community key to living well with Alzheimer’s

Alzheimer’s blog

Marv is retired college dean and chemistry professor turned inspirational voice for people living with Alzheimer’s.

He’s also an advocate for taking action to improve the health care system and engage communities to make a real difference in lives of those impacted by dementia.

Previously (see last 2 blog postings), Marv talked about early diagnosis and acceptance as keys to living well with Alzheimer’s. There’s one more key ingredient we’d like to add, it’s called community.

“Everyone has their own pathway through the process of memory loss and cognitive decline,” says Marv. “To live well, early diagnosis and acceptance were necessary for me. But Alzheimer’s is a team sport, not an individual sport, and to win the game and achieve success, we must build a team of understanding and dedicated players. However, the team is not limited to a doctor or a health care system; integral to this team is the understanding and support comes from family, neighbors, friends and the community.”

Minnesota and many others states are engaged in a coordinated effort as part of the Dementia Friendly America initiative.

Dementia Friendly America is much more than simply being kind to those impacted by dementia. A dementia friendly community is one where those living with Alzheimer’s and other cognitive disorders and their care partners feel respected, understood, supported, and included in everyday community life.

Not long ago I met with small groups of individuals living with memory loss and dementia from several different towns and cities across Minnesota. I asked them to share with me what they want people in their community to know, and to do.

Several common themes emerged and below are 8 of them. This list incorporates some thoughts shared by Marv as well.

A few things those living with Alzheimer’s want you to know:

• See me and interact with me as a person; I am a person with feelings, emotions, ideas and opinions. Having a diagnosis of Alzheimer’s disease does not take this away.
• Don’t assume I cannot learn, or do things, just because of the label (dementia) I have been given.
• Focus on what I can still do rather than what I cannot. Support my needs as my disease progresses, of greatest importance:
  • My need to be treated with dignity and respect at all times.
  • My need to maintain a degree of choice and control.
  • My need to feel I can contribute and that my life still has meaning.
• Give me more time to say and do things. In other words, practice patience.
• Make it OK for me to ask for help — if it looks like I need help, please ask.
• Know that my biggest worry is that I will be a burden to my family. Please see my partner (wife, husband) as an integral part of all of this and support her/him as well.
• Recognize that what I need most from my community is to be needed by my community. Please include me.

We may not have a medical cure for Alzheimer’s, but a societal treatment is within reach — it’s called community. The first step is to hold the truth that we are all in this together.