Caring for our caregivers

By U.S. Sen. Susan Collins
(R-Maine)

There are more than 40 million individuals in our nation who know all too well the compassion, commitment, and endurance that it takes to be a caregiver of a loved one. They also know the frustration and exhaustion that often results.  Our caregivers devote their time and attention, and they frequently must make many personal and financial sacrifices to ensure that their loved ones have the care they need day in and day out.  Most important, America’s caregivers enable many of our nation’s seniors to remain living in the safety and comfort of their own homes.

Basic demographics illustrate some of the challenges faced by our family caregivers.  Simply put, our nation is aging.

According to the Census Bureau projections, 21 percent of our population will be 65 and older by 2040, up from just under 14 percent in 2012.  Every day, 10,000 baby boomers celebrate their sixty-fifth birthdays, and many of them have chronic health conditions.  Americans 85 and older are the fastest growing segment of our population.  This is the very population that is most at risk of multiple and interacting health problems that can lead to disability and the need for round-the-clock care.

At the very time that our population is aging and the need for care and support is increasing, declining birthrates mean that the population of caregivers is shrinking.  In Maine, where we already are the oldest state in the nation by median age, this trend poses a particular challenge.

Today, there are seven potential caregivers for each person over 80 and at the highest risk of requiring long-term care.  By 2030, there will be four, and by 2050, the number drops to fewer than three.  As a consequence, more people will have to rely on fewer caregivers.

Families will likely continue to be the most important source of support for people with long-term care needs.  In 2013, family caregivers provided an estimated $470 billion in uncompensated long-term care—in Maine alone, that estimate is $2.2 billion.

Family caregivers face tremendous challenges.  The typical family caregiver is a 49-year- old woman who takes care of an older relative and in some cases, they are also caring for children.  Thirty-four percent of family caregivers, however, are seniors age 65 or older.  Nearly one in ten is 75 or older.  Many of these caregivers are putting their own health at risk, since caregivers experience high levels of stress and have a greater incidence of chronic conditions like heart disease, cancer, and depression.

Most family caregivers are employed and struggle to balance their work and caregiving responsibilities.  Nearly seven in ten caregivers report making sacrifices in the workplace because of their caregiving responsibilities.  Family caregivers age 50 and older who leave the workforce to care for a parent lose, on average, nearly $304,000 in wages and benefits over their lifetime.

As a nation, we must do more to care for our family caregivers.

I have introduced bipartisan legislation, which has been endorsed by the AARP and the Alzheimer’s Association, to require the Secretary of Health and Human Services (HHS) to develop a national strategy to support family caregivers.  Titled the Recognize, Assist, Include, Support, and Engage, or RAISE, Family Caregivers Act, the legislation is based on a recommendation of the bipartisan Commission on Long Term Care.  It is modeled after a law that I co-authored in 2010 with then-Senator Evan Bayh that created a coordinated strategic national plan to combat Alzheimer’s disease that has made a real difference in our fight against Alzheimer’s disease.

The RAISE Act directs HHS to establish a National Family Caregiving Project to develop and sustain a national strategy to support family caregivers.  The bill would create a Family Caregiving Advisory Council composed of relevant federal agencies and non-federal members.  It would include family caregivers, older adults with long-term care needs, individuals with disabilities, employers, health and social service providers, advocates for family caregivers, state and local officials, and others with expertise in family caregiving.

The Advisory Council would be charged with making recommendations to HHS. The strategy and plan would be updated annually to reflect new developments.  The plan would include an initial inventory and assessment of federally funded caregiver efforts.  It would then identify specific actions that government, communities, employers, providers, and others can take to support family caregivers.

The Project would be funded entirely from existing HHS funding.

Family caregivers are an invaluable resource to our aging nation. Chances are that, sooner or later, we will all either be family caregivers or someone who needs one.  We need to do more to support those who have given so much to care for a family member with significant long-term care needs.