It was powerful to attend my local National Alzheimer’s Project Act (NAPA) event, which was held by my local Alzheimer’s Association. There was a listening panel that was comprised of local politicians, local area on aging folks, local researchers/physicians, and Alzheimer’s Association reps.

Audience members were the speakers, as they were given three minutes to share with the listening panel what they thought should be included in NAPA.

It took me all of about five minutes to shed tears as I listened to family caregivers and persons with Alzheimer’s describe their stories, needs, and hopes. Wow. I think this is a must-attend for any of us in the “business” of serving those with AD and their families. It was a close-up of the pain associated with this disease and the cry for help and the need for our services. Most families expressed feeling “lost and alone” with “no help or guidance after a diagnosis.” Many explained the “horror” of moving their loved ones into facilities that don’t care, with staff who aren’t properly trained. Many described the horror of losing their loved ones to the disease. They described horrible experiences with poorly trained physicians, nurses, aides, firemen, police officers, and airline employees. They gave numerous examples of a public that is fearful of the disease and lacks the education, empathy, and understanding to allow a person with AD to thrive in an everyday community.

I shared a few words with the panel and rallied for NAPA to focus on:

• Improving the requirements and standards for quality training.
• Proactive therapy intervention in all living environments.
• A decreased use of psychotropic meds to “control” behavior.

I also hope to contribute in a more direct way to the development of NAPA.

And we can all contribute to this discussion. We have a philosophy and an approach that can help in every challenge that was brought forward at this meeting by the families and the people living with AD. Yes, a few talked about a cure, but most talked about wanting and needing support, guidance, and expertise from health care professionals. I was happy to let the families and the listening panel know that we are here to help.

I encourage you to attend one of these sessions. If you can’t attend, please share your input with the officials who are creating the National Alzheimer’s Plan.