Kristi Guillory

Kristi Guillory

Senior Associate Director, Policy Development

In 2017, 16.1 million Americans provided unpaid care for people with Alzheimer's or other dementias. These caregivers provide an estimated 18.4 billion hours of care valued at over $232 billion.

Recently, I had the opportunity to join leaders from the National Alliance for Caregiving at the 2018 Aging in America Conference to discuss dementia caregiving. The conference workshop, "Dementia Caregiving in the United States," examined the unique characteristics of caring for someone with Alzheimer's and other forms of dementia, the demographics of Alzheimer's caregivers and policies that affect those caregivers, including recent legislative developments.

Caregiving is an overwhelming task, and with Alzheimer's disease, this role usually falls on family and friends. Data from the 2016 Caregiver Module of the Behavioral Risk Factor Surveillance System (BRFSS), based on caregivers providing 20 or more hours of care per week, indicated that a typical caregiver for a person with Alzheimer's or another dementia is a middle-aged working woman caring for a parent or parent-in-law.

Indeed, women play a pivotal role in Alzheimer's care. The greater and longer that care is provided to an individual with Alzheimer's, the more likely it is that a woman is providing the care. BRFSS data indicated that among those who have been providing care for more than five years, 67.8 percent are women. However, female Alzheimer's caregivers do not always get the assistance that they need. Women are disproportionately more likely than men to say that they need, but don't obtain, individual counseling and respite care.

The Alzheimer's Impact Movement (AIM) and the Alzheimer's Association are strong advocates for legislation that can provide this additional support to caregivers, including the RAISE Family Caregivers Act. Signed into law earlier this year, the law directs the Department of Health and Human Services (HHS) to create a national strategy to provide education and training, long-term services and supports, and financial stability for caregivers. The Alzheimer's Association and AIM are continuing to play an active role in the process as HHS works to develop and implement the national strategy.

Additionally, AIM and the Alzheimer's Association were instrumental in developing the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer's Act (S. 2076/H.R. 4256), new bipartisan legislation prioritizing our nation's approach to Alzheimer's disease. This innovative legislation addresses Alzheimer's as a public health issue. The BOLD Infrastructure for Alzheimer's Act would establish Alzheimer's Centers of Excellence in communities around the country to expand and promote the evidence base for effective Alzheimer's interventions, and issue funding to state and local public health departments to promote cognitive health, risk reduction, and early detection and diagnosis. The BOLD Infrastructure for Alzheimer's Act would assist caregivers by enhancing caregiver supports and by increasing the analysis and timely reporting of data on cognitive decline and caregiving to inform future public health actions.

Policymakers must continue to provide support for our nation's caregivers. The Alzheimer's Association and AIM will continue to work to advance policies at the federal and state level that will address these gaps and assist caregivers. Learn more about our policy priorities and take action today.

Kristi Guillory

Kristi Guillory

Senior Associate Director, Policy Development

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