Note: The Alzheimer’s Solutions Summit, an intergovernmental hearing, was held on July 1, 2014 at the Long Island Alzheimer’s Foundation. The hearing was initiated and chaired by Congressman Steve Israel (D-NY), co-hosted with State Senator Jack Martins (R-NY) and Assemblyman Charles Lavine (D-NY). I was invited by Congressman Israel to testify as part of a caregiver panel. In my allotted 5 minutes I discussed three major issues from my caregiver’s perspective. Following that hearing, I submitted my remarks for consideration as a blog posting on the website of USAgainstAlzheimer’s, a 501(c)(4) organization engaging in public advocacy, federal relations, grassroots activity, and voter education.
First, our federal government must re-prioritize its spending to make a stronger commitment to fund Alzheimer’s research. 4 years ago, Congress declared War on Alzheimer’s with the creation of NAPA, the National Alzheimer’s Project Act. But, unfortunately, Congress never authorized any additional money for Alzheimer’s research when it created NAPA. Since we declared War on HIV/AIDS about 25 years ago, our federal government has spent billions of dollars to fight this disease, leading to effective means of prevention and treatment. The death rate from HIV/AIDS fell 42% this past decade and it has not been listed among the top 15 causes of death in this country since 1997. Contrast that with Alzheimer’s, the 6th leading cause of death in this country, with no effective means of prevention or treatment. The death rate from Alzheimer’s rose 68% this past decade. Yet, during each of the past 5 years our National Institutes of Health have continued to fund more than $3 billion on HIV/AIDS research compared to only about $500 million on Alzheimer’s research.
President Obama’s 2014 Budget contains an additional $2.4 billion for HIV/AIDS, but only $100 million more for Alzheimer’s. So, where is this supposed War on Alzheimer’s? We must re-prioritize our federal spending if we truly want to end Alzheimer’s. We should also support the state bond initiative promoted by Congressman Israel and Assemblyman Lavine to make New York our country’s center for Alzheimer’s research.
Second, we must reform medical practice. Doctors must pay more attention to caregivers during office visits. Too many caregivers report that their earliest observations of possible Alzheimer’s symptoms in their loved ones were ignored by doctors. I propose that doctors administer the AD8 questionnaire to all caregivers expressing such concerns. It only takes 2 - 3 minutes, and research already supports the AD8 as being more effective to screen for early signs of Alzheimer’s than the widely used patient test, the Mini-Mental State Examination, or MMSE. If the AD8 validates caregiver concerns, doctors should do a complete neuropsychological evaluation of the patient ... even if they don’t personally observe Alzheimer’s symptoms and even if MMSE scores don’t indicate any problems.
When issuing an Alzheimer’s diagnosis, doctors should also inform patients and caregivers about support groups and helpful social day care programs. Doctors should also provide a handout explaining the progression of Alzheimer’s over time, with a strong recommendation to meet with an eldercare attorney and financial advisor to properly prepare for the future, making sure that all end-of-life documents are in order ... will, trust, living will, health care proxy, durable power of attorney. We hear too often in support groups ... “I wish someone had told me about this earlier so I could have been better prepared.”
Doctors also need to be more direct with patients and caregivers about the limited effectiveness of medications. There is absolutely no clinical trial evidence indicating that current FDA-approved Alzheimer’s medications are effective beyond one year ... if they have any benefit at all. Not even Big Pharma claims their meds are effective beyond a year, if effective at all. Yet many doctors prescribe these meds year after year, resulting in caregivers spending thousands of dollars on what I refer to as “expensive bottles of hope.” This money could be much better spent by caregivers on day care programs, aides, or other services.
Third, we must find ways to reduce the high cost for Alzheimer’s care. Unless one is wealthy enough to self-pay, poor enough to qualify for Medicaid, or has a good long term health care policy ... costs for Alzheimer’s care can completely drain retirement savings and drastically change the surviving caregiver’s future. Monthly costs for day care programs and home health care aides can easily run $2-3000 each month. For 24/7 aides, costs can double or triple. Assisted living for Alzheimer’s residents can cost $6-7000 each month, and if a private aide is also needed, monthly costs can easily double. Basic nursing home costs often start at around $12-15000 per month for Alzheimer’s patients. These costs are prohibitive for most middle class Long Islanders.
We should consider tax credits or subsidies to non-profits so they can provide more support groups and affordable day care programs. We should consider tax credits or subsidies to assisted living and nursing home facilities so they can provide more staff training and programs for residents. And we should consider tax credits or subsidies, along with changes in current Medicare and Medicaid legislation, to provide caregivers with some cost relief.
It won’t be easy, but somehow we must find ways to lower the high cost of caring for a loved one with Alzheimer’s.
Published as a guest blog on the “by2020” site of USAGainstAlzheimer’s, October 1, 2014. Access online only at www.usagainstalzheimers.org/blog/3-steps-fight-alzheimers.