(Adapted from remarks made at a hearing sponsored by Congressman Steve Israel, D-NY)
First, the federal government must re-prioritize its spending to make a stronger commitment to fund Alzheimer’s research. Four years ago, Congress declared War on Alzheimer’s by enacting the National Alzheimer’s Project Act (NAPA), which in turn required our nation to develop a national plan to attack this disease. This plan established as Goal One preventing and treating Alzheimer’s by 2025. 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, thankfully leading to effective means of prevention and treatment today that have made the disease a manageable chronic condition for many. The death rate from HIV/AIDS has dropped dramatically and it has not been listed among the top fifteen causes of death in this country since 1997. Contrast that with Alzheimer’s, the sixth leading cause of death in the United States and the only one with no effective means of prevention or treatment. And the Alzheimer’s death rate continues to rise. Yet during each of the past five years our National Institutes of Health has continued to spend more than $3 billion on HIV/AIDS research compared to only around $500 million on Alzheimer’s research.
President Obama’s 2014 Budget contained $2.4 billion for HIV/AIDS but only $100 million more for Alzheimer’s. Where is this supposed War on Alzheimer’s? We must increase or re-prioritize our federal spending if we truly want to end Alzheimer’s.
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 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 and 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 existing medications. There is no clinical trial evidence indicating that current FDA-approved Alzheimer’s medications are effective beyond one year - if they have any benefit 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.” Some of 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 $2,000-$3,000 each month. For 24/7 aides, costs can double or triple. Assisted living for Alzheimer’s residents can cost $6,000-7,000 each month, and if a private aide is also needed monthly costs can easily double. Basic nursing home costs often start at around $12,000-15,000 per month for Alzheimer’s patients. These costs are prohibitive for most middle class Long Islanders.
We should consider tax credits or subsidies for non-profits so they can provide more support groups and affordable day care programs. We should consider tax credits or subsidies for 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.
We must tell our political leaders that the same insufficient, "business-as-usual" response is not enough to end Alzheimer's - a disease we know is the great public health care crisis of our time. Click here to tell Congress to do more to fight this disease.
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.