Dementia Call To Action
Here is a note from one of my colleagues, Meryl comer who is out fighting the battle of dementia.
I have cared at home for my husband, Harvey, who was diagnosed with early onset Alzheimer’s at age 58, for almost 20 years, and now I care for my mother at home too. Unfortunately, nothing has changed in these last 20 years – there are still no disease-modifying treatments or better care options. So I wrote Slow Dancing with a Stranger to urge caregivers to tell the hard truth about this cruel disease and flip their pain by becoming more vocal advocates. After all, we are already on the frontline of care – in doctors’ offices, hospitals, and doing battle with insurers. So I hope all caregivers will come out of the shadows with me.
It’s been shown that caregiving can have harmful mental and physical health consequences – like depression, fatigue, stress, and chronic illness. What upsets me is the latest research that shows caregiving can take as much as 10 years off a family caregiver’s life. How unfair is that!!
That’s why I’m asking you to take 20 minutes of your time to participate in our new online study – “from the lab to your laptop” – to help researchers focus on the cognitive toll of caregiving. Why? Because what happens to our loved ones if something happens to us? It’s time to show the research community that we can be valuable research partners, and to do this we’re creating the largest virtual cohort of caregivers to join together on the front lines of research – without leaving home.
That’s why yesterday we launched the 21CBT/Health e-Brain Study that invites caregivers to complete a quick lifestyle survey and take a Lumosity brain performance test. That’s it! We promise to share what we learn to help protect your health.
I think most people are worried about their own risk if they have seen Alzheimer’s in their family. I worry all the time. But we don’t need to be powerless. We deserve more than lip service for our unpaid contribution to long-term care in this country. Join this study to show that caregivers count. Our metric for success is to help caregivers stay well and we are using our brains to do it.
Fighting Alzheimer’s on the outside when I know it will win at home, makes me fearless. This is not about me. My fight is to make certain no other family ends up like mine. Together we need to show the world what’s really on our mind!
P.S. If you’re not a caregiver but know someone who is, please forward this message to help us reach as many caregivers as possible.
More than 400 leading Alzheimer’s researchers agree that we can prevent and effectively treat Alzheimer’s by 2025 – and it could even be sooner if critical investments and reforms are made. We must SUBSTANTIALLY INCREASE funding for Alzheimer’s research in the next 5 years and we must DRAMATICALLY SHRINK the time it takes to get new, safe therapies to market.
USAgainstAlzheimer’s is a community of enraged and engaged individuals who have been touched by Alzheimer’s disease and are committed to achieving the bold and attainable goal of ending Alzheimer’s.