In the wake of the pandemic, which saw families take on extra caregiving duties, Maine launched a $5.1 million program to provide caregivers a much-needed break.
The program, called “Respite for ME,” provides grants of up to $2,000 to Maine families who are caring for a family member at home. Respite care is some else taking care of your loved one so the primary caregiver can have a break.
Since the inception of the two-year, pilot program in October, more than 200 inquiries have been received by Maine’s Area Agencies on Aging, which are partners in the program, the Maine Department of Health and Human Services said.
Under the program, family caregivers of people living with a disability, Alzheimer’s disease, or other related dementias may receive grants to help them access respite care for their loved one. Caregivers may also receive counseling and training, legal and financial guidance, and services to maintain their own health such as occupational and physical therapy.
“Many Maine people took on new or expanded caregiving responsibilities for parents, grandparents, spouses and other family members during the pandemic,” said Maine Health and Human Services Commissioner Jeanne Lambrew. “These grants will help them to not only care for their loved ones at home, but also to take care of themselves. This pilot program will also help us learn how to best support family caregivers moving forward.”
Other state, federal and private foundation programs exist to help provide respite care. Since 2009, Congress has appropriated about $2.5 million per year to implement Lifespan Respite Programs. As of 2017, competitive grants of up to $200,000 each were awarded to eligible agencies in 37 states and the District of Columbia.
Still, with the existence of these programs, the vast majority of caregivers don’t use respite care.
AARP, in a joint report with the National Alliance for Caregiving called Caregiving in the United States, found that 38% of caregivers feel having respite services available would be helpful, but only 14% of caregivers report having used respite services.
“Respite care is very important. You want to try to avoid burnout. Caregivers are on 24-7, particularly with a loved one with dementia. Respite care is needed in order for the caregiver to maintain a level of patience and sense of self. Caregiving is extremely stressful and caregivers completely neglect themselves,” said Debra Feldman, president of the board of directors of the Aging Life Care Association.
Feldman said signs of burnout include loss of patience, fatigue, depression and loss of sleep.
Amy Goyer, AARP’s family and caregiving expert, said it can be hard for caregivers to hand off responsibility, especially if a patient says they don’t want anyone else taking care of them.
“Caregivers often feel guilty doing something for themselves. But it’s a way to fill you up so you can be a better caregiver,” Goyer said. “Respite care can take many different forms. It can be a full break for hours or a day or days for the caregiver, or just a second pair of eyes and hands to watch the patient while you do laundry and clean.”
Paying for respite care is another hurdle. Rates vary by region and the type of care and where it’s being provided. Respite care runs the gamut from care in the home, adult day care centers, hospice respite care and assisted living services that can be for extended days.
Even in the home, respite care can be mere companionship and safety for a patient while the caregiver attends to other duties in the home and expands from there to include bathing, meal preparation, feeding or running errands.
According to a Genworth survey, adult day care costs average $74 a day nationally, assisted living facilities are the next most affordable option, averaging $141 a day and in-home care is the most expensive option, averaging $150 a day for a home health aide.
The cost is only one problem. The biggest hurdle, experts said, was finding someone to provide care.
According to an AARP study, the number of potential caregivers is dropping as populations shift and baby boomers age. In 2010, the caregiver support ratio was more than seven potential caregivers for every person in the high-risk years of 80-plus. By 2030, that ratio is projected to decline sharply to four-to-one; and it is expected to further fall to less than three to one in 2050, when all boomers will be in the high-risk years of late life.
“The need is definitely growing. Public awareness has been growing for 20 years, but we have a long way to go. People don’t even know what respite care is or how to ask for it,” said
Jill Kagan, director of the ARCH National Respite Network and Resource Center. “Respite care has a huge, unmet need.”
“There are multiple barriers to access respite care—the list goes on and the reasons vary. But the greatest barrier is the direct care worker crisis—people can’t find care providers,” Kagan said.