Black Caregiver Respite: Breaking The Stigma Around Rest & Self-Care

Respite care is temporary care that allows family caregivers to take time off from their caregiving duties. It’s an important type of care that allows the primary caregiver time for rest and self-care. Unfortunately, Black caregivers underutilize respite, often because of stigma. 

In this blog, we’ll talk about:

• Usage rates for respite care in Black families 
• The stigma associated with self-care
• Why respite care is so important 
• Ways to overcome barriers to benefiting from respite services 

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. 

Do Black Caregivers Use Respite Care? 

Respite care is underutilized among all unpaid caregivers. African American caregivers, in particular, are less likely to take advantage of respite care. According to one study, Black dementia caregivers are 69% less likely to use respite services than white caregivers. 

Another study measured respite usage differently but found a similar result for dementia caregivers. The researchers found that the respite care use rate of Black family caregivers is nearly 12 percentage points lower than that of white caregivers. This study did find that the gap between respite use in white and Black dementia caregivers is narrowing.  

Caring for a loved one with dementia, as these studies focus on, is particularly challenging. But, these results can likely be extended to caregivers for individuals with all types of needs. 

The Stigma Behind Respite Use & Self Care

Many barriers prevent caregivers from taking advantage of respite care. These include the costs of care, feelings of guilt associated with not providing care for a loved one, and a lack of a strong support network. 

For Black caregivers and others in the community, stigma and shame are also powerful barriers. Surveys have found that Black caregivers don’t always see themselves as caregivers. Caring for others is simply what they do, a responsibility or duty, not a choice. 

This can lead to feelings of guilt or shame when considering taking time off or using respite care. The effect is particularly strong in Black women, who are often expected to take on the caregiving responsibility for the family. 

The Benefits Of Respite Use

Some studies have found that Black caregivers suffer worse physical and mental health as a result of their responsibilities. All family caregivers, especially those for dementia patients, are at risk for poor health outcomes and even caregiver burnout.

Burnout is a state of exhaustion and poor health caused by long periods of stress. Your caregiving role can be very stressful. Without relief, it’s easy for caregivers to neglect their own wellness and get to this state. 

Regular respite reduces the risk of burnout and provides these other benefits: 

• Rest and stress relief. Taking time off from your duties allows you to rest, manage stress, and seek formal support if needed.
• Better health. Caregivers who use respite services experience improved physical and mental health.
• Social connection. Respite care gives you time to socialize with family and friends, reducing feelings of isolation.
• Stronger relationships. Additional time with loved ones helps strengthen family and personal relationships.
• Work flexibility. Respite care allows you to continue working if needed.
• Enjoyment and self-care. Taking time for activities you enjoy helps you recharge and have fun.
• Improved caregiving. Managing your own health enables you to provide better care for your loved one.
• Engagement for care recipients. Spending time with a respite caregiver can be enjoyable and stimulating for your loved one.

Although studies are limited, research does point to respite benefitting Black caregivers. In one study of Black caregivers of people with dementia, the researchers looked specifically at depression. They found that caregivers who used older adult day care services for their loved ones experienced significantly fewer signs of depression than those who did not. 

Overcoming Barriers To Using Respite Services

The benefits of respite care are enormous. As a caregiver, you deserve a break. Time off allows you to manage your health and be the best caregiver possible. Here are some ways to overcome the barriers preventing you from using respite. 

Rethink Self-Care: A Way To Become A Better Caregiver

Much of the stigma of self-care in African American caregivers comes from guilt associated with taking time away from their loved one. While there is nothing selfish about managing one’s own wellness, it might help caregivers to view respite care as a pathway to becoming better caregivers. 

Respite care allows caregivers to maintain or improve their own mental and physical health. This, in turn, helps them provide better care for their loved ones. Caregivers who are overwhelmed or burned out can’t provide the best care. In fact, they’re more likely to lash out or even become abusive toward their care recipients. 

Expanding Your Support Network

A social network that provides support is a helpful tool for coping with caregiver stress and respite care. Rely on family and friends, and expand your network by finding and participating in Black caregiver or dementia caregiver support groups. 

Improving your social network can help you use more respite care in several ways. 

• It opens you up to more people who might be willing and able to step in and help as a care partner. It’s not easy to ask for help, but it’s easier when you have a group of close family and friends you trust. 
• Connecting with other Black caregivers can help you overcome the guilt or stigma of engaging in self-care. Finding other people who understand your position is powerful and comforting. You can learn self-care and coping strategies from other caregivers in a support group. 

The Binti Circle is an example of a support group specifically for Black women caregivers, especially those caring for a dementia patient. Join the support group to learn more about your role as a caregiver and to find support from other women who understand your struggles.  

Finding Ways To Pay For Respite Care

Financial constraints prevent many caregivers from getting the respite care they really need. Here are some options to consider that might help you cover some or all of the costs: 

• Original Medicare. If your loved one has Original (Part A) Medicare and is in hospice care, you can get up to five consecutive days of respite care. Medicare covers 95% of this cost. The care must take place in a Medicare-certified facility. 
• Medicare Advantage. Medicare Advantage covers some services that Original Medicare does not and that you can use for respite if your loved one has an Advantage plan. Benefits vary by plan but may include adult day care, unskilled in-home care, and skilled home care for dementia patients and those with other chronic conditions. 
• Medicaid. You may be able to get coverage for services you can use as respite if your loved one has Medicaid. Programs vary by state, but many states offer waivers designed to provide more home-based and community level services. These may include in-home care and adult day care. 
• VA Benefits. If your loved one is a veteran, they may qualify for VA services, including respite care for dementia and other patients. Check with your local VA office to learn about services and how to access them. 
• National Family Caregivers Support Program. This national program is part of the Administration for Community Living. It funds state programs that provide respite services for family caregivers. Your local Area Agency on Aging has more information. 
• Lifespan Respite Care Program. Many, but not all, states have this program. It is funded by the government and uses vouchers and grants to help residents pay for respite care. 

Respite care is an essential service for caregivers. Unfortunately, several barriers, including stigma, prevent Black caregivers from using respite. Overcoming the complicated feelings associated with asking for help and other barriers will help you use respite care as a useful tool for your role as a caregiver. 

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

1. https://pubmed.ncbi.nlm.nih.gov/32819177/
2. https://academic.oup.com/biomedgerontology/article/79/Supplement_1/S42/7597466
3. https://www.everydayhealth.com/black-health/storytelling-caregiver-self-care/
4. https://pmc.ncbi.nlm.nih.gov/articles/PMC9137429/
5. https://archrespite.org/bibliography/does-adult-day-service-use-improve-well-being-of-black-caregivers-of-people-living-with-dementia/
6. https://binticircle.org/
7. https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout