The New York Times recently reported on the disappointing result of yet another Alzheimer's drug trial. According to The Times, the drug, LMTX, "failed to slow the rate of decline in mental ability and daily functioning in its first large clinical trial ... The initial reaction to the outcome was disappointment, with perhaps a glimmer of hopefulness."
For those of us who work in the field of Alzheimer's and dementia care, these results, while discouraging, are not surprising. Between 2002 and 2012, 99.6% of the 413 clinical trials for Alzheimer's failed.
What does surprise me is our continued short-sightedness when it comes to Alzheimer's funding. Both of my parents had dementia, so, believe me, I understand that finding effective therapies is essential. But, while we wait, good care is the best medicine we have. So, the lack of funding available to support an effective system of dementia care is an egregious oversight.
Today, we estimate that 5.4 million Americans have Alzheimer's or a related dementia and it's estimated that by 2050, that number will triple. According to data derived from the 2009 CDC's Behavioral Risk Factor Surveillance System, the U.S. Census Bureau, Centers for Medicare and Medicaid Services, National Alliance for Caregiving, AARP and U.S. Department of Labor, in 2015, there were 15.9 million unpaid caregivers, including family members, caring for people with Alzheimer's disease and other dementias. . If, by 2050, as predicted, we have triple the number of people needing care, then over 45 million Americans will be caring for someone with dementia.
The absence of focus on care is a tragic omission and one we will all pay for dearly - as individuals and as a nation.
What should be our focus? First, we need affordable access to knowledgeable, trained healthcare and social service professionals including primary care providers, geriatricians, emergency department personnel, home health aides, long-term care providers and discharge planners - all well-trained to recognize signs of dementia and familiar with resources, like CaringKind in their own communities.
Good care means affordable access to specialized programs and services run by these trained professionals, including support groups and critical respite programs. In addition, we will need access to programs for those who have a dementia diagnosis including senior adult daycare programs. And good care also means having sufficient nursing home and hospital beds, as well as assisted living facilities.
Family caregivers need affordable homecare assistance, without which they are often forced to quit their jobs or place their family member in a long-term care facility at much greater cost. And this has implications for us all. When family members quit a good job to care for someone, they are not paying the very taxes that support the social and medical programs, like Medicaid, that they will draw upon. Fewer dollars coming in and more going out will have a disastrous effect on our already stressed healthcare system.
Critical to addressing this problem is making home healthcare jobs desirable by paying adequate compensation, providing benefits and offering specialized training and education.
We know that none of this comes cheap. At CaringKind our annual budget is $10 million and with this we provide free access to programs and services for as many as 15,000 people each year. But given our estimate that more than half a million people in New York City either have dementia or are taking care of someone who does, CaringKind is only serving a fraction of those who desperately need our help.
Support from government is essential in our efforts. In New York, Governor Andrew Cuomo's Alzheimer's Disease Community Assistance Program (AlzCAP) is providing important support - $3.4 million over three years - to help CaringKind expand our free care and support, outreach and education services.
In response to the mounting costs associated with long-term care, some states are exploring programs that allow caregivers to receive compensation from Medicaid. For example, in New York the Consumer Directed Personal Assistance Program (CDPAP) allows siblings, ex-spouses and adult children to be paid caregivers. While not perfect, this is a step in the right direction.
Our elected officials must also create rational leave policies for family caregivers who take on the burden of caring for loved ones. While we are a long way from achieving this goal, in March, New York State passed a bill requiring paid-family-leave time for most employees. One of only five states with similar measures, New York now mandates up to 12 weeks of paid leave to care for a gravely ill parent, spouse, domestic partner or other family member.
Today, with no prevention or cure in sight, the U.S. healthcare system is unprepared to withstand the extraordinary pressure of so many people ill with dementia and needing care. Make no mistake. This "perfect storm" is on the way. If philanthropists, foundations, government and other funders play their part to support those who care for people with Alzheimer's and dementia, a national crisis can be mitigated.