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Society Applauds Launch of Congressional Bipartisan Family Caregiving Caucus

March 3, 2015

Multiple sclerosis (MS) is a complex disease and roughly 25% of people living with MS will require long-term care services at certain stages of the disease progression. For example, due to physical limitations, some people living with MS require daily assistance with everyday tasks, including eating, dressing, bathing, and transportation. It is often family members who step in to provide this care without being compensated—which is vital to keeping their loved one at home and avoiding premature admission to costlier facilities. A 2012 National Alliance for Caregiving (NAC) survey of MS caregivers revealed that, on average, they spend 24 hours a week providing care, often to the detriment of their personal lives or career goals. The NAC survey also showed that 64% of caregivers described themselves as emotionally drained, 32% suffered from depression, and 22% had lost a job due to their caregiving responsibilities.
Considering figures from 2009, the AARP found that about 42 million family caregivers provided over 40 billion hours of unpaid care, and the economic value of that unpaid care was estimated to be $450 billion. Additionally, the AARP estimates that family caregivers provide in excess of 90% of the care that keeps people with disabilities out of nursing homes and other institutional settings. AARP predicts that, as the baby boomer generation ages, there will be an even greater need for family caregivers, and that there will be fewer people available to provide that care.
In February 2015, U.S. Senators Kelly Ayotte (NH) and Michael Bennet (CO), and U.S. Representatives Diane Black (TN) and Michelle Lujan Grisham (NM), announced the creation of the bipartisan and bicameral Assisting Caregivers Today (ACT) Caucus—which was officially launched in early March. This Caucus was designed to bring greater attention to the needs of family caregivers and how they are essential to helping people with disabilities live independently, to educate Congress on these issues, and to work toward bipartisan solutions for family caregivers.
The National Multiple Sclerosis Society strongly supports this initiative, and looks forward to working with ACT Caucus members, AARP and other national organizations to find sustainable, long-term solutions to better supporting our nation’s family caregivers.

About Multiple Sclerosis

Multiple sclerosis is an unpredictable, often disabling disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are leading to better understanding and moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 2.3 million people worldwide.


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