I have always been struck by the fact that, unlike most other chronic illnesses, dementia progressively takes away the ability to speak for oneself. Our voice, the ability to articulate our views, is one of our most valuable possessions. When that is gone, it is incumbent upon those who are able to represent with their voice.
Recently, I had the opportunity to meet with domestic policy staff from the presidential campaigns of Senator John McCain and Senator Barack Obama. As a nonpartisan 501(c)(3) organization, the Alzheimer's Foundation of America's (AFA) goal in meeting with the campaigns was to educate them about our issues-to give voice to the concerns and needs of our constituency. In my role as AFA's president and chief executive officer, I felt a tremendous responsibility to convey the views and experiences of our member organizations, which provide hands-on care and guidance to individuals with dementia and their loved ones in communities across the nation.
The fact is that individuals in the early stages of dementia, family caregivers, care professionals and local advocates know better than anyone what is needed to promote earlier diagnosis and treatment; enhance home care and long-term care; create better caregiver support and quality of care; address health workforce issues; and offer solutions to defray costs. As former Speaker of the House Tip O'Neill once said, "All politics is local."
Both campaigns acknowledged that our nation faces a looming crisis in long-term care, which must be addressed before it spirals out of control. They also recognize that the crushing burden of an epidemic of chronic disease-and dementia in particular-is-falling squarely on the shoulders of family caregivers, who lack the resources to effectively manage it.
More specifically, we highlighted that the government must encourage the adjustment of outpatient and inpatient medical care to meet the special needs of persons with cognitive disabilities. Federal leadership, in partnership with the grassroots advocacy efforts of family caregivers and individuals with the disease at the state and local levels, is desperately required to support investments not only in basic research, but in prevention; screening programs; training for both family caregivers and professionals; chronic care coordination; technology and quality improvement in long-term care settings; and respite services; as well as to ensure parity in the Medicare eligibility levels for home and community-based care with that of nursing home care.
I cannot, and would not, tell you who to vote for. I will, however, strongly encourage you to exercise one of your most important civil rights and vote.
Many of you may already be actively engaged in the electoral process. If so, I encourage you to explain the importance of long-term health care issues to those elected officials and candidates with whom you are working. They need to hear it from you.
If you're new to all this, I encourage you as well to tap into the democratic process and, likewise, speak out about issues affecting your family and, no doubt, other families across America. Even your one anecdote about Alzheimer's disease could weigh in on the incoming administration's health policy.
It is you and me and millions of other Americans who will ultimately determine the direction of healthcare, and more specifically care for individuals with dementia, in our country.
Published On: August 22, 2008