Reducing Caregiver Burden
Jeanine Penzo, MSW, LICSW, speaks at the PVA Summit + Expo on Thursday, Aug. 31, 2017 in National Harbor, Md.
A breakout session on Thursday’s final day of the PVA Summit + Expo brought awareness to the ever increasing burden caregivers face and how that impacts the care veterans with spinal-cord injury and disease (SCI/D) receive at home.
Jeanine Penzo, MSW, LICSW, a licensed clinical social worker with the Department of Veterans Affair Boston Healthcare System, discussed several case studies of veterans and their caregivers at the Gaylord National Resort & Convention Center in National Harbor, Md., and offered some interventions health care professionals can utilize to help caregivers reduce their perceived burden and ultimately improve veterans' care.
Penzo says because people are living longer due to advances in modern medicine, hospital stays are shorter and more people are living at home with chronic illnesses than they have in the past, caregivers are now required to perform more medical-related tasks.
Currently there are 18 million Americans caring for family members older than age 65. That number is expected to reach 30 million by 2050, Penzo says. Research has shown that caregivers are more likely to be depressed, have anxiety and develop chronic illnesses because chronic stress can lead to a suppressed immune system.
"Not only is it important that patients and caregivers take care of themselves so that they can care for their loved ones, but it's important for their own health that they learn to reduce stress," Penzo says. "As our veterans with SCI/D age, their caregivers are aging as well. And as our patients need more help and have more medical problems, so do their caregivers, and that really can be a source of caregiving crisis in the home that we all have to deal with on a pretty regular basis."
In a recent study, Penzo says the authors asked questions of caregivers and care recipients to see if perceived caregiver burden equated to unmet care needs. The researchers found most of the caregivers had good intentions at the beginning and felt they could manage the family member and fit him or her into their current lifestyle. Over time, as the tasks became more difficult and the patient became more disabled, the caregivers became more tired and felt it was too late to back out or get more help. In addition, the more tired the caregivers became, the more likely it was for a patient to receive substandard care, even though it wasn't intentional.
When Penzo has talked to caregivers about requesting help from other family members, such as children, the typical response is the caregiver doesn't want the family members to know he or she can no longer cope.
"So we have this scenario of caregivers who are feeling burdened and overwhelmed and don't want to be a burden on everybody else, so it's coming in from both sides of the issue," Penzo says.
Another situation Penzo has come across is when a patient is aware that he or she is a burden on the family caregiver. Veterans might talk about being worried that their spouse isn't getting to go out more, that he or she looks more tired than usual or isn't feeling well and won't see a doctor. Even more concerning, some veterans will fall and injure themselves while trying to transfer because they didn't want to bother their spouse. Others will forgo being turned at night or will go without food or drink to avoid being a burden.
"I think it's important that we're aware of this," Penzo says. "I think it's something we need to discuss with our patients, especially if we suspect that they are letting their fear or their perception of being a burden affect their care ... Their spouses may be verbalizing that 'you are not a burden,' but they feel like a burden."
Ways for caregivers to combat overexertion are through meditation or physical activity, which has been shown to produce endorphins, release tension and stress and improve mood. A 2016 McGill University study looked at the impact of physical activity on caregivers' mood and overall health and found some reported decrease in stress and less felt burden, Penzo says.
Penzo says caregivers should take advantage of available respite programs. Penzo's unit offers both inpatient and in-home respite programs, as well as phone-in caregiver support groups.
Penzo emphasized the importance for caregivers to reach out for help, whether it's from a family member or home health professional. Some studies indicate that when caregivers ask for help, their loved ones are able to stay at home up to a year longer.
"Research has shown that once people can get over the hump, once people can ask for help from others, their depression levels decrease, their anxiety levels decrease," Penzo says.
Penzo says overall, health care providers should try to remind caregivers why they decided to become caregivers in the first place.
"Initially all of our caregivers enjoy taking care of their loved one, and sometimes by helping discuss that with them, helping them find a little bit of that again, they can make the caregiving seem less tiring, less [like] a chore, and find the love in it that they originally started doing it for," Penzo says.
Reducing Caregiver Burden
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