If you're one of the 65 million Americans caring for an elderly relative or younger person with a disability, you need regular breaks to help protect your health and well-being. During the holiday season, you may have family and friends around to help. But what do you do the rest of the year?
Respite services give caregivers a break. Yet, research consistently shows that caregivers require time, education and encouragement to understand and use respite. When they do, they experience less stress and improved quality of life. They also are less likely to neglect or abuse the person in their care.
Organizations like the Benjamin Rose Institute on Aging, a nonprofit agency in Cleveland, Ohio, offer respite to caregivers of older adults through adult day, home care and other programs. Phil* contacted the agency when he began caring for his elderly mother with Alzheimer's disease. His physician wisely advised him to make sure he got time away from being a caregiver. His mother attends the agency's adult day program and has a Senior Companion volunteer come to their home to stay with her several times a week. Phil believes he gets the most out of respite services by using his breaks to rest, go to the mall, or work on home improvement projects.
Janet* lives with and cares for her elderly mother with dementia. She knows if her mother did not live with her, the only alternative would be nursing home placement. She wanted desperately to avoid this because her mother's dementia makes her combative. Janet feared that nursing home staff could not care for her mother without keeping her sedated. The home health aides who provide assistance to her mother also provide respite for Janet, who is able to continue working during the day and caring for her mother at night.
Unfortunately, respite services are not available and affordable in all communities. To improve the situation for America's caregivers, federal legislation was passed in 2000 to supply respite to eligible caregivers under the National Family Caregiver Support Program through each state's Area Agencies on Aging. Funds are limited though, and the need for respite services exceeds what is available under this program. The federal Lifespan Respite Care Act was passed in 2006 and funds state agencies to work with coalitions and develop statewide respite systems for all caregivers. Progress toward this goal varies widely across the states.
We can hope more progress will be made through the upcoming White House Conference on Aging in 2015. One of its priorities for the next decade, strengthening long-term services and supports for older adults and people with disabilities, recognizes the vital importance of the health and well-being of family caregivers. New policies may be proposed such as grants to caregivers to pay for respite, tax credits for families who pay out-of-pocket for respite services, and long-term care insurance coverage for respite.
If you are caring for an older person and interested in respite services, you can try contacting your Area Agency on Aging, 2-1-1 call center, or the Aging and Disability Resource Center in your area. If you are caring for a younger person, you can also contact Easter Seals or your local board of developmental disabilities. Another option is to seek out faith-based organizations in your community that offer volunteer respite services.
Whether or not you are a caregiver, you can become an advocate for respite services by contacting your state's respite coalition. Currently, 33 states have lifespan respite coalitions. The members include organizations representing individuals of all ages with disabilities or chronic conditions, family caregivers, community- and faith-based organizations, and respite, social service and health care providers. Add your voice to the growing chorus seeking to make this much-needed service a staple in communities throughout the country.
If you are not a caregiver but know someone who is, consider volunteering your services to give them a break from caregiving. Especially during the busy holiday season, the gift of respite is likely to be gratefully accepted.
This blog was co-authored by Miriam Rose, a Senior Research Policy Analyst at the Benjamin Rose Institute on Aging.
* Names have been changed