I don't think I was the only one with tears running down my cheeks when Tim McGraw sang Glen Campbell's Oscar-nominated song, "I'm Not Gonna Miss You," at the Oscars.
The song deals with Campbell's struggle with Alzheimer's disease. He was diagnosed with the disease in 2011. Rather than hiding it, Campbell and his family chose to give the world an inside look at his battle with the disease as they embarked on an emotional and triumphant nationwide tour.
The documentary movie, "I'll Be Me," chronicles the diagnosis and what they thought would be a five-week tour. Instead, it went on for 151 spectacular sold-out shows over more than a year across America. The film documents the amazing journey as Campbell and his family attempt to navigate the wildly unpredictable nature of his progressing disease using love, laughter and music as their medicine of choice. Off stage, Campbell suffered, but on stage his music was amazingly intact. The documentary was released to theaters and will be available on DVD this spring. I highly recommend seeing this movie.
Also at the Oscars (I stayed awake for the whole show!), Julianne Moore won the award for best actress in her portrayal of early onset Alzheimer's patient in "Still Alice." It sounds like I'm a real movie fan, but really, the national exposure to Alzheimer's disease is long overdue. In Minnesota alone, 88,000 people over age 65 live with the disease and the number is growing. In Minnesota, 245,000 caregivers are caring for family members with Alzheimer's and other dementias. Seventy percent of people with Alzheimer's live in their own homes and need support from families and community members. These numbers cannot be overlooked any longer.
What about our community? Are we dementia friendly? Are we informed, safe and respectful of individuals with dementia and prepared to support people living with Alzheimer's and those touched by the disease? Do we know enough about the disease to not shy away from friends or folks we see in the community that struggle? Is this something that, unless you've been exposed to it, you would rather know nothing about? I hear from families over and over that friends quit visiting after a diagnosis of Alzheimer's. Is it because they don't know what to do, say or how to act?
What if employees in restaurants, banks, retail stores were aware enough to recognize signs of Alzheimer's and other dementias and shaped their customer service to be responsive to that? What if a caregiver in this situation handed you a card at your work that said, "The person I'm with struggles with Alzheimer's. Please be patient." Would you know how to react?
Are our public spaces and transportation supportive of folks with memory loss? What about our emergency response systems?
Is there an opportunity for our children to be aware? Do they understand some of the things that may be affecting their grandparents or others in their family? I have recently talked to a family where the younger members do not know what is happening and tend to be nervous and giggle when their grandparent can't answer the appropriate way. Is this what we want?
Do we have health care systems that are dementia aware and responsive to needed services? Do we have enough services to support the family caregivers, from support groups to availability of respite care for that well-deserved break?
If we could be better, how do we go about it? An opportunity awaits our community. The local ACT on Alzheimer's group will host a community meeting from 4-5:30 p.m. March 24 at First Lutheran Church, 424 S. Eighth St., Brainerd, and you should be there. At this meeting, the results from ACT on Alzheimer's survey conducted in the community over the last several months will be discussed. There will be priorities and goals established for our journey to become a dementia-friendly community. There will be roundtable discussions to gather ideas and to get the ball rolling.
ACT on Alzheimer's is a statewide, volunteer-driven collaboration preparing Minnesota for the personal, social and budgetary impacts of Alzheimer's disease. Passionate and committed partners, supporters and communities are taking part in the work and making a difference. Our community is honored to be part of this group and has received a grant to identify our needs and work toward our vision of being a dementia-friendly community. Refer to www.ACTonAlz.org for more information.
To envision a world without Alzheimer's is a lofty goal. Raising funds for support and research is very necessary to fight this disease. We can also make a difference locally by making our community a safe and healthy place for those who suffer from Alzheimer's and other dementias to live. It can be a place where families, friends, and caregivers can easily help take care of their loved ones in a safe and friendly environment and get the support they need themselves. We need your help. See you on March 24.