We all know that caregiving is wrought with difficulties. Caregivers are often short on the time, money and energy needed to juggle the conflicting needs of family and work. While those needing care can feel the sadness, guilt, anxiety and stress that arise with the loss of autonomy. The emotional toll is complicated and heavy on both sides.
In caregiving, “‘burden’ is a big word,” says Anne Tumlinson of Anne Tumlinson Innovations (ATI), a research and advisory firm for the care of older adults. Whether you’re a caregiver or a recipient, she says a component of burden arises from “feeling out of control when you’re in a situation that’s more than you can handle.”
The impact of those feelings extend beyond the emotional wellness within the caregiving relationship. Feelings of caregiver burden cause unmet needs that often lead to hospital visits and other negative outcomes for older adults who need care.
A recent study out of the University of Pittsburgh, “Care Recipient Concerns About Being a Burden and Unmet Needs for Care,” found that when caregivers feel burdened, they are less able to fulfill the needs of the older adults in their care. AND, when care recipients feel like a burden, more of their needs go unmet because they do not ask for help.
In the U.S. nearly 10 million older adults receive help in their home with self-care and housekeeping responsibilities due to their physical, mental or cognitive functioning. Most often, family and friends meet these needs. However, the study finds that when a caregiver is not a spouse, child or paid caregiver, many older adults feel like a burden. And their caregivers feel burdened too.
According to the study, 20 to 32 percent of disabled older adults reported unmet needs in the last month. With this prevalence of unmet needs, older adults may experience increased hospitalizations, risk for neglect and other potentially negative outcomes for their health and wellness.
Yet there are practical ways to combat these feelings that can also improve the caregiving relationship and quality of care to the recipient.
Programs and products seeking to lighten the load of caregivers should consider the role they can play in relieving feelings of burden—for everyone involved.
Tumlinson recommends helping caregivers to identify all the ways caregiving is burdensome, then breaking down each piece and addressing them individually.
“I did a presentation to caregivers this winter. I called it ‘Caregiver as the CEO.’ It’s not a perfect framework, but we are trying to dislodge the feeling of victimhood for caregivers,” she said.
Thinking like a CEO allows caregivers to consider goals and priorities, and act accordingly. “Things feel out of your control. We want to put you back in a position of control,” she added. Part of that control includes finding a team, resources and products to support caregiving.
Tech company Seniorlink recently released results from a pilot program, called VOICE (Vital Outcomes Inspired by Caregiver Engagement). Designed specifically designed for dementia care, the pilot showed that “activating” the family caregiver reduced their burden and improved confidence in their care.
With VOICE, families are connected with professional coaches to improve their caregiving skills through established behavioral science and proven caregiver engagement techniques. Jay V. Patel, Clinical Transformation Officer at SeniorLink said the program can “build trusted relationships with caregivers and existing care teams, meeting caregivers where they are in their knowledge, communication, confidence and care skills.”
Seniorlink found many positive outcomes to their pilot program including: improved caregiver confidence, a decrease in hospitalizations, and most notably, a 51 percent drop in emergency room visits.
In addition to helping caregivers learn how to reduce their burden, we should also consider ways to support care recipients. The University of Pittsburgh study showed that as the needs of older adults increased, their feelings of being a burden did as well. Care recipients need tools and strategies to solicit more help.
Asking for help may feel burdensome, but Tumlinson explains that the opposite may be true. “An effort to not be a burden often creates more stress for the caregiver.”
Ultimately caregiving isn’t about burden. It’s about being in a relationship and working together so everyone can have the best life they can. When we help lighten the burden of caring, we can improve outcomes for all involved.