Black Caregiver Respite Programs: Access The Support You Deserve
Respite care is a vital service for caregivers, but Black caregivers underutilize it. Respite use is low for many reasons. In this blog, we’ll discuss:
- Barriers to using respite services
- Why it’s important to overcome these barriers
- Ways to access respite care
- How to pay for respite care
- Other types of support available for Black caregivers
If you’d like to access additional resources to make your caregiving journey easier, check if you have free access to Trualta’s learning library and caregiver community.
About Respite Care
Respite care describes the process of someone else temporarily taking over for the primary caregiver. This allows the primary caregiver to take a break. The purpose of respite is to provide the primary caregiver with relief from their duties. It’s especially important for family caregivers, who often provide many hours of care without a break.
Informal caregivers and unpaid caregivers often rely on respite services so that they can work or handle other family responsibilities. Respite can and should also be used for rest, time off, vacations, self-care, and spending time with other loved ones.
There are many types of respite care: in-home care by a professional health care worker, adult day care, or residential facilities like nursing homes or hospices. Respite services are temporary but may last a few days to weeks.
Respite Use Among Black Caregivers
Respite care is generally underutilized among people providing unpaid care. Many family caregivers face barriers to using respite, such as costs and feelings of guilt.
One study found that Black caregivers of people with dementia were 69% less likely than white caregivers to take advantage of respite care.
There are likely many reasons for this discrepancy. For example, according to the American Society on Aging, many African American caregivers report having no family or friends to help them.
Another barrier is the lack of culturally competent respite care resources. Historic discrimination has discouraged many Black caregivers from seeking and using formal support services.
Why Is Respite Important For Black Caregivers?
Caregiving is a big responsibility that can easily become overwhelming and stressful. Nearly one-third of Black caregivers report feeling isolated and alone. They often experience mental health and physical health challenges due to caregiving.
All caregivers are at risk for caregiver burnout, a mental health state of prolonged stress, fatigue, and exhaustion. Respite care is essential for reducing the risk of burnout and allowing caregivers time to care for themselves. When you take time off, you also ensure you can provide better care for your loved one.
How To Access Respite Care
Many caregivers face access issues when it comes to respite use. These ideas and programs might help you find, utilize, and benefit from respite care.
Family & Friends
If you have a strong social network, consider seeking help within your circle. Many people rely on a primary caregiver, who may find it difficult to hand off duties. This is especially true if your care recipient has particular challenges, like dementia. It’s important to trust and rely on others to help care for a family member.
Talk to your most trusted and reliable friends and family about the possibility of occasional help. This kind of informal respite care can be a big relief to a caregiver, especially if you struggle to afford professional care.
Adult Day Care Services
Many people think of respite care as in-home health care or care in a nursing home, but there’s another option to consider. Adult day care centers are facilities that supervise older adults during the day. They typically provide:
- Recreation
- Social opportunities
- Meals
- Personal care
- Light medical care
According to a study of Black dementia caregivers, those who used adult day services experienced less depression and better overall health. Dementia caregiving is particularly challenging. Even a few hours off can have a big benefit. A day care service allows you to take a day off occasionally. You can also set up a regular schedule, such as twice weekly.
Religious Organizations
Many Black families have strong ties to their religious communities; they should be places you can turn to in times of need. Churches often have programs to help community members, including support groups or services for caregivers. Caregiver support groups also offer the chance to expand your network and find people with whom to exchange respite services.
ACTS2 (African-American Alzheimer’s Caregiver Training & Support) is a religious-based, national program specifically for Black caregivers. It supports Black families caring for a loved one with dementia. While the group doesn’t specifically offer respite, it’s a useful group for support. Dementia caregiving is particularly challenging and isolating. Support like this can help you cope better with your caregiving duties.
Respite & Support Programs
Look both nationwide and in your community for additional resources. Local groups, national groups, and support programs offer respite care or resources to help you find services in your community.
- Family Caregiver Alliance (FCA). The FCA is a national organization with excellent resources. On the local level, the FCA’s Bay Area Caregiver Resource Center offers local, short term respite care and other resources for local caregivers.
- ARCH National Respite Network. ARCH aims to make respite care more accessible to those who need it. Use the respite provider locator to find services in your area.
- National Family Caregivers Support Program (NFCSP). NFCSP is administered by the Administration for Community Living. It funds state programs to support caregivers with services, including respite care. Contact your local Area Agency on Aging for more information.
- Lifespan Respite Care Program (LRCP). The LRCP is a program that supports caregivers of both children and adults with special needs. Funded by the government, the program offers vouchers and grants available through state agencies. Use this link from ARCH to find out if your state has an LRCP.
- The Binti Circle. This group is specifically for Black women caring for an aging parent, including those with dementia. It’s mostly a support network, but the Binti Circle can help you learn more about caregiving, the importance of respite, and resources for finding and financing respite care in your area.
- VA Respite Care. If your loved one is a veteran and qualifies for VA benefits, they may be able to receive respite care. Check with your local VA office to find out what services are available and if your loved one qualifies.
Paying For Respite Care
If your barriers to accessing respite care are financial, consider the different ways to cover the costs. Some of the above resources and groups help you find respite services and offer ways to cover the costs.
Here are some other ways to pay for much-needed respite care:
- Original Medicare. Original Medicare Part A covers up to five consecutive days of respite care for qualifying hospice patients. Hospice patients have been certified by a physician as having a life expectancy of six months or less. Covered respite care must take place in a Medicare-certified facility.
- Medicare Advantage. If your loved one has Medicare Advantage, Part C, they may have coverage for adult day care and non-skilled in-home care. You can use these services as respite care.
- Medicaid. If your loved one qualifies for Medicaid, you may have some options for paid respite care. Medicaid traditionally doesn’t cover respite, but many states now offer waivers for home-based and community-based care. The waivers are supposed to delay the transition to residential facilities, so they may include in-home care or adult day care. Check with your state’s agency that administers Medicaid to determine if you’re eligible for waivers.
- Private Insurance. If your loved one has a private health insurance plan, it might cover respite care. Most insurance programs don’t include respite care, but some long-term care plans do.
Respite care is so important for caregivers, especially if you’re a dementia caregiver. Don’t let barriers keep you from getting the rest and relief you need. Use these resources and rely on family and friends to support your own wellness and mental health.
If you’d like to access additional resources to make your caregiving journey easier, check if you have free access to Trualta’s learning library and caregiver community.
References
- https://pubmed.ncbi.nlm.nih.gov/32819177/
- https://generations.asaging.org/meeting-needs-african-american-caregivers
- https://archrespite.org/bibliography/does-adult-day-service-use-improve-well-being-of-black-caregivers-of-people-living-with-dementia/
- https://www.caregiver.org/resource/programs-and-services-overview/
- https://archrespite.org/
- https://acl.gov/programs/support-caregivers/national-family-caregiver-support-program
- https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx
- https://archrespite.org/ta-center-for-respite/respite-voucher-programs/apply-for-state-lifespan-respite-voucher-programs/
- https://binticircle.org/
- https://www.va.gov/geriatrics/pages/Respite_Care.asp
