The toll is huge!
It is estimated that there are about 400,000 of us in the U.S. with Early or Younger Onset Alzheimer's Disease (EOAD or YOAD) or related dementias. No one knows the real number since many are closeted for a variety of reasons (stigma, embarrassment, job security, lack of adequate disability insurance, fear of loss of friends and family, lack of caregiver support or resources, etc.). I am very fortunate to have the necessary support and resources, and thus feel a responsibility to speak on behalf of those who, for whatever reason, cannot.
So many with EOAD need support and help now! Not in 2025 (per false promise of the National Alzheimer's Project Act) but right now. Where is the promise for those living with the disease? Where is the commitment to those family caregivers who sacrifice their lives for their loved ones? How many people do you know who work hard every day without ever getting a day off...for free? I'm not against funding research (although much of it lacks direction and nearly every drug trial for Alzheimer's fails), but where are the funds for those with years of life with dementia ahead of them?
The cost of dementia care in both dollars and human currency are high! Spouses and children are often ignoring their own lives and wellbeing for their loved ones with dementia.
So yes, the toll is huge. The question is how are we going to pay it?
Written by David Kramer. Originally posted at Living Well With Alzheimer's Facebook Page
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