Join the Chorus

Support the call to care for the caregivers of those with Alzheimer’s disease.

On Oct. 22, the Alzheimer’s Foundation of America (AFA) released and urged swift implementation of a series of hard-hitting recommendations in its No Time to Waste  report to defeat the burgeoning epidemic of Alzheimer’s disease in America.

Central to the report is a call to action urging greater training and support for family caregivers of all demographics across the continuum of care for patients with Alzheimer’s disease.

At this very moment, members of the Congressional Joint Select Committee on Deficit Reduction (the Super Committee) are considering and debating options to curb America’s burgeoning budget deficit. Not only is it unlikely that funding for programs that train and support family caregivers will increase, existing funding to support these vital programs is at risk.

The time is now to let your voice be heard in Congress.

Alzheimer’s disease is a huge problem in America and it’s getting bigger – 5.4 million Americans are living with Alzheimer’s disease. Another American develops Alzheimer’s disease every 69 seconds. In 2050, an American will develop the disease every 33 seconds.

The impacts of Alzheimer’s disease are far-reaching, affecting not only personal health and employment, but also the health and employment status of those who care for patients with Alzheimer’s disease.

• In 2010, 14.9 million family and friends provided 17 billion hours of unpaid care to those with Alzheimer’s and other dementias.
• The economic value of the unpaid care provided to those with Alzheimer’s and other dementias totaled $202.6 billion in 2010.
• More than 60 percent of Alzheimer’s and dementia caregivers rate the emotional stress of caregiving as high or very high; one-third report symptoms of depression.

No Time to Waste describes the profound challenge of caring for a person with Alzheimer’s disease.  

Caring for a person with Alzheimer’s disease is often very difficult. Many caregivers experience high levels of emotional stress and depression and often there is negative impact on the health, employment, income and financial security. Many caregivers get caught in a difficult spiral of negative consequences. They are forced to take time off from work, forgo promotions and maybe event drop out of the workforce altogether to care for relatives. Consequently, they work and earn less, which reduces the Social Security and pension benefits they receive.

The report claims are born out in the results of an October 2010 study by the Alzheimer’s Association.

The report found that the majority of men and women surveyed made substantial changes to their work schedules because of caregiving responsibilities. In the survey of caregivers:

• 61 percent of women and 70 percent of men said they had to go in late, leave early or take time off ;
• 21 percent of women and 18 percent of men had to take a leave of absence.

Caregiver Employment

Business productivity losses related to family caregiving in the United States have been estimated as high as $33 billion per year.

But while the problem of Alzheimer’s disease grows and its impact on the health and employment of caregivers becomes more profound, funding the programs best suited to meet caregivers’ needs are at risk.  

No Time to Waste calls on Congress to “fully fund existing programs that seek to reduce the family caregiver burden and reduce institutionalization.”

Lifespan Respite  brings together federal, state and local resources and funding to provide temporary relief for caregivers. A Minnesota Board of Aging program is in place to enhance listings, train community members as “respite ambassadors” and increase respite service choices. These are two examples of programs that are having a profound and favorable impact for caregivers.

The challenge to sustain funding for these and other impactful programs midst the Super Committee debate is profound.

In an opinion piece posted on the Health Affairs blog, Sean Coffey, a policy specialist at the National Center on Caregiving at Family Caregiver Alliance, points out that two-thirds of laws supporting caregivers are never enacted. Money (lack thereof) and inertia in thinking about new ways of providing care are among the primary reasons.

Last Thursday, 31 national organizations stepped boldly forward to respectfully request  that the Joint Select Committee of Congress preserve vital funding for programs supporting caregivers who provide $450 billion in unpaid care every year. The Alzheimer’s Foundation of America was among those organizations who lent their voice to the growing chorus on this critical issue.

Contact your Senator or member of Congress.  Let your voice be heard today.