Family Caregiver Programs and How You Can Advocate

Who Are Family Caregivers?

Family caregivers are found in each racial, age, and socioeconomic group. They can be spouses, children, siblings, or other family members. Caregivers assist with Activities of Daily Living (ADLs) and Instrumental Activities of Daily Living (IADLs).

Many caregivers balance paid jobs while caring for their loved ones. Rachal Hatton, Executive Director of the SC Respite Coalition, shares, “It’s unrelenting work. Caregivers spend [much] time at their place of employment and then [go] right home and are helping care for their mom or their aunt. […] Many of them have to leave the workforce, and especially for parents of children with disabilities, the needs of their child never end. [It’s] something that’s life long 24/7.”

The Numbers

According to a 2019 AARP Report, caregivers in South Carolina spend about 610 million hours of unpaid care. That turns out to be an estimated economic value of $7.6 billion annually. They also spend roughly $7,000 of their own money on caregiving costs. Nationally, the estimated economic value of family caregiving was $470 billion in 2017 alone. You can learn more about family caregiving data and read AARP’s report HERE.

What Respite Programs Do

Respite programs give caregivers a break from their duties. These programs allow caregivers to care for their personal matters, relax, re-energize, and even do something they like for fun. There are three main categories of family caregivers to which respite programs cater: people that care for loved ones aged 60 or older, those that care for a family member of any age with a disability or type of dementia and seniors aged 55 or older caring for a child that’s 18-years-old or younger.

Many regions across the state have a Council of Governments that house their Agencies on Aging. The Waccamaw Area Agency on Aging Family Caregiver Assistance Program serves families in the Waccamaw area (Horry, Georgetown, and Williamsburg counties.) Also, the Central Midlands Family Caregiver Support Program serves caregivers in the Midlands region, including Richland, Lexington, Newberry, and Fairfield counties.

These programs serve family caregivers that fall into the three categories listed above. The regional caregiver advocate works directly with caregivers to provide information and services that help make their jobs more successful. They can also help relieve stressors that come with being a caregiver. These respite services include things like referrals, adult daycare, facility stay, or in-home services. Also, these respite programs can help pay for incontinence products.

There are Respite Coalitions across the United States, including South Carolina. The SC Respite Coalition works with caregivers and other agencies to advance respite in the system of care and continuity of care in South Carolina. They offer many services, such as coaching and referral for families. For example, they provide training programs for respite caregivers, primary caregivers, or family members.

A Cause for Alternative Forms of Respite

Unfortunately, due to the Coronavirus Pandemic, respite programs have had to adjust and find alternate forms of serving caregivers.

Jenny Andrews, Family Caregiver Advocate of the Central Midlands Family Caregiver Support Program, says that self-care is emphasized now more than ever. One caregiver had surgery recently, and the agency was able to provide them extra support during their healing process. “They knew their loved one was taken care of so that they can take care of themselves […] That’s something that we talk to our caregivers a lot about […] You spend your whole day, sometimes several years, taking care of someone else, but you have to take care of yourself as well,” said Andrews.

Valerie Gonzalez, Family Caregiver Advocate from the Waccamaw Area Agency on Aging, says that many respite programs are offering Virtual support groups to allow caregivers an opportunity to connect with others safely. Advocates encourage connecting with local support groups such as those in the Midlands and Waccamaw regions.

How Others Can Advocate

Advocates and industry professionals agree that others in the community can advocate for family caregivers as well. Gonzalez said community churches can be an excellent resource for caregivers because of the diverse individuals and skills present to offer volunteers. “When we go to churches, we have all different kinds of […] plumbers and carpenters and nurses and just a variety of people that attend church if we could even have a list. […] The church leaders could handle connecting those people up with the caregivers.”

Not only can community organizations advocate for caregivers, but individuals can also advocate through moral support.

“I really believe everybody can become a respite champion for family caregivers. The best way that they can advocate is by listening to the needs of caregivers and just talking to people. Often, caregivers don’t identify as caregivers and they don’t necessarily tell people that they’re caring for loved ones.” – Rachel Hatton

Similarly, Andrews asserted that social support goes a long way when advocating for caregivers in the community.” If you’re running out to the store dropping off meals if that seems like something that family might be in need of or something that would help relieve some stress and if you’re comfortable enough […] coming in and sitting with their loved one so they can get just a little bit of a break during the day.”

The importance of caregiver respite is becoming more prominent as we begin to discuss mental health more in social circles. Moral and social support goes a long way. How do you think you can help advocate for family caregivers in your community?