For people like Karen C., whose mother has Alzheimer's disease, today is a much better day than yesterday. Today, I can give her a more hopeful response to her inquiry to the Alzheimer's Foundation of America's social services team than I could have given her yesterday.
"My parents do not have enough money for the care that my mom needs," she wrote. "Are there government funds available for these patients? I'm at my wit's end to find helpful real information."
Today, the White House's Middle Class Task Force, chaired by Vice President Joseph R. Biden, Jr., released its first annual report that, in its words, "reaffirms the Administration's commitment to fight for the middle class." Among its recommendations: a $102.5 million "Caregiver Initiative" that calls for caregiver support programs, such as respite care, counseling and referrals to resources; and other services, such as adult day care, transportation and in-home aides to assist with activities of daily living.
These are the kinds of services caregivers desperately need hour by hour, day in and day out, often--in the case of Alzheimer's disease--for eight to 20 years.
I don't know if Karen C. is formally a member of the middle class. But I do know that she and countless other Americans caring for individuals with Alzheimer's disease or other chronic disease are struggling. A diagnosis of this brain disorder translates into a storm that typically wreaks financial disaster--from more than $18,000 to more than $36,000 annually--on top of emotional havoc and practical mayhem. Life as families once knew it takes on a whole different meaning.
Despite this, an AFA survey of sandwich generation caregivers found that a majority derive a sense of accomplishment from their duties. That in and of itself says so much. But they also conceded, as they care for both their children and individuals with Alzheimer's disease, that they need more--more money (51 percent) and more time (47 percent).
Therefore, the task force recommendations mark a critical turning point for America's caregivers as they strive to do their very best for their loved ones. These family caregivers have been anxiously waiting for this issue to climb to the national stage and for relief in their own homes and communities. For too long, their plight has not been given its just due and their role in the U.S. healthcare system has been overlooked and undervalued.
There is no doubt that the gravity of the situation is enormous and the overall solution will require much greater price tags. But for countless families like Karen C. who are at wit's end, the task force's initiative can prove helpful--and is welcome. On a case-by-case basis, even a small amount of assistance can make a difference in quality of life. Even just a few hours of time off or connections to community support services can impact caregiver's physical and mental well being, and can mean the difference between keeping a loved one at home and having to turn to more costly nursing home care.
Moreover, the recommendations signal optimism that the compass is finally pointing in the right direction. Minimal or flat lined funding in the past is giving way to more monies to help American families. Funding aside, these recommendations bear enormous value in shedding new light on family caregiving.
Our hope is that the momentum builds--for every step forward, to not take two steps back with cuts in existing state or federal programs, and to press forward for even more relief and even more attention to the value of family caregivers in the future.