New Jersey VA offers conferences
Caregivers of veterans with a spinal-cord injury (SCI), multiple sclerosis (MS) or amyotrophic lateral sclerosis (ALS) make it possible for their loved ones to maintain their independence and quality of life. Often, though, caregivers neglect to make time for themselves.
Joyce Williams, LCSW, a social worker at the Department of Veterans Affairs (VA) New Jersey Health Care System spoke about caregivers and programs to help them during an implementation workshop called Building A Successful Caregivers Appreciation Conference for Spinal-Cord Injury, Multiple Sclerosis and Amyotrophic Lateral Sclerosis Caregivers on Wednesday’s final day of the Paralyzed Veterans of America Healthcare Summit + Expo in Anaheim, Calif.
She says caregivers, 40% to 50% of whom are immediate family members, are the backbone of the United States health care system.
“So many of them suffer poorer health … compared to people who are not in the role of caregiving,” Williams says. “And, so, we see that because of caregiving roles, many caregivers work less and have fewer household incomes. You know, caregiving has been associated with caregiver burden, poor general health, increased depression and anxiety, and relationship and financial strain, which then impacts quality of life.”
Williams says the work caregivers contribute is valued at over $22 billion a year, meaning keeping them physically and mentally healthy also results in cost savings for the health care system. Caregivers become the eyes and ears for medical professionals when patients are discharged to the community. But in addition to addressing their loved one’s medical concerns, caregivers must also figure out how to balance being a parent, a spouse, a son or daughter, etc.
“So, a lot of family caregivers report high burden with just the emotional complexities on who takes priority,” Williams says. “Is it my loved one? Is it myself? Is it my child? Is it my mother? Many caregivers experience guilt when they think about doing things for themselves, and they feel like their loved one’s needs should take priority over their own.”
Williams says the VA has made major improvements in recent years in regard to caregiver services, including home health aides, along with individual psychotherapy services and respite programs. Still, Williams says caregivers have reported having unmet needs. To help bridge the gap and provide caregivers with resources, support and education, the VA New Jersey Health Care System has held caregiver appreciation conferences for the last 15 years.
Williams, along with Carol Gibson-Gill, MD, chief of SCI/D at the VA New Jersey Health Care System, and Sheila Holbert, RN, BSN, SCI/D telehealth coordinator at the VA New Jersey Health Care System, told Summit attendees about their program and how it could be implemented at other medical facilities.
The program, called the Triangle of Healthy Caregiving: The Caregiving Balance Program, started to take shape about 15 years ago when Gibson-Gill and colleagues obtained a $60,000 grant to expand their caregiver outreach from a telephone support group. Their first formal in-person conference was only two hours, but caregivers wanted more. Over time and with additional funding, the conference went to a full day and eventually, in 2010, it was held twice a year.
They have included activities like Zumba, yoga, tai chi, acupuncture facelifts, memoir writing and CPR training, a brown bag discussion with a pharmacist, and sessions about integrative medicine, VA benefits, eating a non-inflammatory diet, VA benefits, emergency preparedness, managing your paid caregivers, caregiving and intimacy and safe patient handling with physical and occupational therapists and more.
As part of the conference, veterans also received education about why it was important for their own health that their caregivers have some time away.
And before the novel coronavirus (COVID-19) pandemic in 2020, the team also implemented a hybrid caregivers conference, called Break Away, utilizing telehealth for those who couldn’t make the drive to the VA.
“It offers an in-person caregivers retreat-style model, and it allows virtual caregivers the ability to engage in activities and interact virtually, all while in the comfort of their own home,” says Holbert. “The hybrid caregivers conference decreases the caregivers’ stress level and dismisses any of the unknown questions that can arise, such as ‘Will he or she be OK while without me or while I’m gone? Maybe I should just stay home instead of going to a conference.’ These are some of the questions that can cause many caregivers to miss out on a wealth of information that would be beneficial to them, as well as their loved one.”
When the pandemic hit, the conference went virtual with 25 caregivers who dialed in to participate in yoga, meditation and empowerment sessions, learn self-care tips and connect with one another. The conference has continued to be held virtually.
“Caregivers felt an increased sense of belonging, decreased sense of isolation,” Williams says. “They like the educational sessions. Our patients, the vets, and the caregivers reported increased understanding of what it means to be a caregiver of a person with these different diagnoses.”
