Healthcare providers have the ability to provide support, connection, and resources that can help to reduce caregiver burden and increase caregiver joy.
Lifelong Learning in Clinical Excellence | November 7, 2018 | 3 min read
By Jessica Colburn, MD, Johns Hopkins University School of Medicine
Atul Gawande, MD, shared a short video from Thailand with the following tweet:
“Watch this 6m short from Thailand on gratitude and on caring for more than yourself, and just try not to tear up.”
Limited care options
The video depicts a young man who is an elementary school teacher and a very devoted primary caregiver for his mother, who has dementia. He does not have options for care for her, and so brings his mother to school with him daily, where she sits or naps in the back of the classroom. Parents express concern, and there is a school meeting held, while at the same time his mother goes missing and he and his students are frantically trying to find her. One of his students is driving home from school with his mother, when he sees his teacher’s mother walking along the side of the road and asks his mother to stop to see if she is okay, where they gently approach her and wait until her son comes.
The stresses and joys of caregiving
The video highlights the stresses involved for a caregiver who is balancing work and other responsibilities with the challenges of providing love and care for a loved one with memory loss. It also depicts the joys of caregiving – the love and devotion the teacher has for his mother, the intergenerational benefits for the children who interact with their teacher’s mother and see the changes that come with memory loss, and the appreciation the parents of the students gain in understanding a teacher’s dedication.
A common story
The story of a devoted family member who is struggling with the challenges of balancing work responsibilities with the responsibility of caring for an aging loved one is all too common. Over one-third of visits to physicians involving an older patient include a caregiver in the clinic room, and patients who have a caregiver are more likely to self-report poor health and to carry a higher burden of chronic disease. Caregivers who provide significant help to a loved one report increased physical and financial difficulty as well as restrictions in valued life activities and work productivity loss. Healthcare providers have the ability to provide support, connection, and resources that can help to reduce caregiver burden and increase caregiver joy.
Recommendations for healthcare providers to help with reducing caregiver burden:
1.) Ask caregivers how they are doing with the job of providing care for a loved one. Caregivers may need the opportunity to share their struggles and to have a provider show concern for their experience as a caregiver.
2.) Reassure caregivers that they are doing a good job caring for their loved one. Caregivers value the positive reinforcement of a physician or medical provider who notices and acknowledges when they are providing good care.
3.) Explore available care options for caregivers to work, run errands, or take a break from the challenges of caregiving. For many caregivers, cost is a limiting factor in paying for a home health aide to come into the home, but caregivers may be able to afford an adult day center or senior center, or may be able to ask for help from family members, neighbors, or faith communities.
4.) Offer connections to caregiver support groups and training programs. The Alzheimer’s Association is a great resource for caregivers of people living with dementia. They have a 24-hour hotline, caregiver support groups, educational programs, lending library, and other support.
5.) Finally, ask caregivers to tell you about their loved one as a person, especially if that person has dementia and is unable to share details of their own life story. This can create connection and allow part of a visit to focus on the joys and rewards of caregiving.
As noted by Gawande, the most poignant message in the video is that of gratitude and appreciation – devotion to a beloved family member, the intergenerational value of extended family and community in caring for older adults with memory loss, and the appreciation of shared experience and understanding the burdens of another. We have a special opportunity in medicine to share in someone’s life story, to relieve some of the burdens carried by our patients and their caregivers, and to make room for joy and gratitude.