mostly family members, provide over 18 million hours of care valued in excess of $235 billion for their loved ones diagnosed with dementia.
I am one of you.
“You can’t explain what it’s like to mourn someone who is still alive,
unless you have experienced it first hand.”
– Jessica Seay-Soto
Today everyone knows someone touched by dementia or Alzheimer’s disease. We write about this disease because it cannot be prevented or cured. Millennials grew up watching their parents shoulder the responsibility of their grandparent’s care. As adults, those millennials will likely become the primary caregivers to their own aging baby boomer parents.
We need to solve this growing health crisis. Our world has faced many challenging crises over the years and with enough time, talent and resources have moved the needle on so many. My hope is that we can do the same one day with dementia and that my writing may make some small contribution to that critical effort.
The facts about research are alarming. According to the National Institutes of Health: research dollars spent on dementia and its related diseases are only $480 million annually compared to $6 billion for Cancer, $4 billion for Heart Disease, and $3 billion for HIV/AIDS. How will we find the cure for such a troubling disease at that rate?
Books help us to share common experiences. When HIV/AIDS was killing so many, silence meant death until Randy Shilts wrote And the Band Played On. Women with breast cancer had nowhere to turn until Dr. Susan Love wrote Breast Book. And the course of treatment for heart disease would never be the same after Dr. Christiaan Bernard’s groundbreaking work described in his autobiography, One Life.
Family is critical in the dementia care equation. Research tells us that the number of people aged 65 and older is expected to double by 2050. Three-in-ten family members currently report that they are supporting their aging parents financially. And the majority of adult children feel a responsibility to provide other forms of assistance, as their parents require.
My story is simply one of survival – survival over the guilt, sadness and overwhelming responsibility that we face when thrust, often reluctantly, into the role of caregiver.