For family caregivers who feel overwhelmed by their responsibilities, respite care provides a desperately needed opportunity to recharge and take care of their own physical and mental health. Respite services represent a true win–win, benefitting the health and well-being of both caregivers and the older loved ones for whom they care.
In New York State, there are 2.6 million unpaid caregivers providing 2.4 billion hours of care to family members and friends, according to a recent AARP New York report. But there aren’t enough respite programs to meet the needs of caregivers, and that’s especially true in much of upstate New York.
In October 2018, the Health Foundation for Western and Central New Yorkbrought together about sixty of our central New York community partners that play a role in providing and paying for services for family caregivers for an event we called “Connecting to Caregivers.”
Part of the purpose of the event was to announce two new respite care initiatives that the Health Foundation plans to award in spring 2019. But it was also to begin framing a new conversation around how the community might better address the unmet needs of family caregivers across western and central New York, and particularly how we can enhance community respite and support services while better connecting family caregivers to the community.
These new initiatives build on the work the Health Foundation has done over the past five years to improve the lives of family caregivers in the sixteen New York counties that we serve.
Advancing Respite Care
The Health Foundation’s latest efforts focus on better understanding how much short-term relief is needed for family caregivers, while also funding community-based organizations to develop local respite care programs based on national models to help address the health and social needs of family caregivers.
The Health Foundation recently approved a $149,980 grant for a study, by Tiffany Washington of the University of Georgia, to gauge how often caregivers across western and central New York are using respite services. This study will also examine whether caregivers’ social support networks, among other factors, relate to their access to, and desire for, respite care.
In addition, we are asking twenty caregivers who care for persons with dementia to engage in a conversation with the Health Foundation, at the 2019 National Lifespan Respite Conference about the complex role of caregiving for older persons with dementia-related diseases (including Alzheimer’s disease and Parkinson’s disease). The Health Foundation is a major sponsor of the conference, which will be held in Buffalo, New York, in May 2019.
At the recent “Connecting to Caregivers” event, the Health Foundation also announced plans to award up to $255,000 to ten community-based organizations—five each in western New York and in central New York—to develop local programs to provide respite care for caregivers through two Brookdale Foundation models: the National Group Respite Program, a social group model designed to address the special needs of Alzheimer’s families, and the Relatives as Parents Program, which promotes the creation or expansion of community-based respite and other support programs for grandparents or other relatives caring for a child.
A National Issue
These initiatives address an issue not only in our region, but across the nation. According to a 2015 report published by AARP and the National Alliance for Caregiving, every day more than 43.5 million of our friends, neighbors, and relatives provide caregiving services for a parent or parent-in-law, spouse, relative, or other loved one.
In addition to shopping, preparing food, doing housekeeping, providing transportation, and helping with medications, they also assist with personal hygiene, dressing and undressing, and getting in and out of bed, among other daily activities. And almost half of family caregivers provide complex chronic care normally performed by a medical or nursing professional.
As a result, family caregivers are at higher risk than non-caregivers for emotional distress, depression, anxiety, social isolation, burnout, fatigue, and other negative physical and mental health effects.
The demand for caregiving is increasing significantly due to the dramatic rise in the number of older adults (particularly those eighty years and older), coupled with the decline in the number of family members available to provide care. The size of American families is shrinking, and the makeup of families is changing as more people do not have children, never marry, divorce, or blend families. This leaves fewer family members available to provide care to a growing number of older relatives.
Informing The Field
Our work in the field of family caregiving is a natural complement to our portfolio of older adult work—particularly the Health Foundation’s framework around Triggers of Decline, which points to a scarcity of evidence regarding best practices for addressing the needs of older adults and informal caregivers.
To inform the field and increase our own knowledge about the many complex issues surrounding caregiving, the Health Foundation in 2014 was one of a large diverse group of philanthropic sponsors (including Archstone Foundation, California Health Care Foundation, the Commonwealth Fund, the Fan Fox and Leslie R. Samuels Foundation, The John A. Hartford Foundation, May and Stanley Smith Charitable Trust, the Retirement Research Foundation, the Rosalinde and Arthur Gilbert Foundation, Santa Barbara Foundation, Tufts Health Plan Foundation, and others) supporting the National Academy of Medicine’s Families Caring for an Aging America report, which was ultimately published in 2016.
The study addresses the state of caregiving in this country, needs for the future, and policies required to support family caregivers. It calls for interventions that include education and skills training to improve caregivers’ confidence, as well as counseling available for caregivers, self-care, and respite programs to improve caregivers’ quality of life.
The study notes that research suggests that providing care management services assists caregivers in managing medical conditions of their loved ones more effectively, and may delay older adults’ institutionalization and reduce hospital readmissions. Unfortunately, most caregivers still do not have access to such services.
Connecting to Caregivers
In 2018 our efforts in this area received a powerful boost when the Ralph C. Wilson Jr. Foundation in Detroit, Michigan, endowed $2 million to both the Michigan Health Endowment Fund and to our foundation to support a new staff position at each foundation, focused on programs and initiatives that support caregivers for older adults. This unique philanthropic partnership creates the framework for dialogue, cross-learning, and collaboration between the Michigan and New York foundations, including future collaborative funding opportunities that have the potential for multistate impact.
This creative collaboration will be instrumental in sustaining the conversations we are having with our communities and funding partners about the ways we can better connect caregivers to the services and supports they so desperately need. One of the things we discussed at our “Connecting to Caregivers” event was that providing respite care and other support services to caregivers is made more challenging because many people do not consider the help they provide as “caregiving,” and therefore do not see themselves as needing assistance.
That’s why talking—and even more important, listening—to caregivers and those who support them is so important. Those conversations will help guide us as we deepen our commitment to addressing this area that is vital to the health of our communities, our families, and of course, older adults.
https://www.healthaffairs.org/do/10.1377/hblog20190131.170678/full/
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