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Expert Blog

Just What We All Need

October 7, 2016

Life has ups and downs. Life has the sometimes, humdrum, boring, day to day monotony with seemingly nothing exciting or interesting going on. At this juncture in my life, I try hard to keep perspective. Sometimes I do. And sometimes I don’t. Sometimes I get submerged into that tedium life and can’t find a way out.

Recently, Home Instead Senior Care co-sponsored an amazing event in Washington D.C. Lucky for me, they asked that I attend The Alzheimer’s Summit and Hill Day put together by UsAgainstAlzheimer’s. It was just what I needed to rejuvenate my soul, my drive to help bring about a cure and get me back into the swing of talking to people and being in the world.

Part of the discussions we listened to centered on research and clinical trials. My question to you: have you or your loved ones signed up for a clinical trial? You do not necessarily have to be diagnosed with dementia or cognitive impairment to participate. They need healthy adults as well.

Another part of the dialogue focused on women and minorities. Alzheimer’s takes its toll on women in much higher numbers for two reasons: 1) they tend to become the caregivers for parents, spouses, children, siblings, etc. 2) women are diagnosed with dementia at a higher rate than men.

There was also an interesting aspect along the lines of minorities being affected differently. Typically, minorities (African American and Latino) will not seek help until they are completely past the point of being able to take care of their loved one. They will typically only speak with those they trust in their community or in some cases there may be a language barrier. This bothered me for a variety of reasons and made me wonder if this may be part of the reason we have to fight so hard for funding. If the majority of people affected were middle aged white males, would that make a difference?

In my world we are all part of the same community: the Alzheimer’s community. We ALL need help. We all speak the same language: not knowing what to do, when to do it and how to do whatever it is that we should have done months or years ago. We are all struggling to get a diagnosis. We are all struggling to figure out finances. We are all struggling to provide the safest care for someone we are fighting to hold onto.

This Summit covered a lot of information and I felt like we could have stayed there a month and still not covered in depth all that encompasses being part of the dementia family.

Home Instead Senior Care and other companies have done a wonderful job supporting UsAgainstAlzheimer’s, but I encourage you to do your part. I encourage you to seek help. Don’t wait until you can’t take it anymore. I know that feeling. Of course, in many instances you are told you can’t sign up for anything until the person with the disease is at the point of needing whatever it is you are filling out the paperwork for. But then there is a long wait and probably more forms.

I encourage you to contact your representatives and demand funding for research and for help with caregiving. I encourage you to share your story and be heard. While attending this event, I was surrounded by others who have been the caregiver, who are the person being cared for, researchers who haven’t personally been affected but have enough empathy and wisdom to know they must use their talents to stop this epidemic and by representatives who can make a difference unlike most of us. It felt good. It felt productive. It is energizing being part of something bigger than you. There is something comforting in surrounding yourself with others who get where you have been, the struggles you face day in and day out and there is no stigma and no explanations needed. Finally, the hope in listening to the passion of so many who care just as deeply about finding a cure was just what I needed. I am wondering if it also just what you need?

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