As the population grows older, more adult children are caring for aging loved ones, either at home or as guardians of family members in assisted living. In fact, more than 11% of Dallas County residents are over age 65, and approximately 25% of patients over age 65 on Medicare have difficulty performing one or more daily activities.
These daily tasks of care add pressure to loved ones, which researchers call the “caregiver burden.” A 2019 study published by the National Institutes of Health defines caregiver burden as “the strain or load borne by a person who cares for a chronically ill, disabled, or elderly family member.” Some studies have shown that women experience more consistent caregiving stressors while men may experience acute, more intense bouts of burnout.
Despite loving an ailing family member very much, in-home and long-distance caregiving can negatively affect physical health, mental wellness, finances, and relationships. This can lead to feelings of guilt and anxiety, further worsening burnout.
UT Southwestern's Care of the Vulnerable Elderly (COVE) team witnesses caregiver burden firsthand at our patients’ in-home primary care visits. We see you balancing several roles: taking care of aging parents, raising your own family, working, and trying to squeeze in time for relationships and self-care. Over time, this constant churn of responsibility can cause physical and emotional symptoms that diminish quality of life – for you and your aging loved one.
Through COVE, the senior is our patient, not the adult child. However, your health and happiness are very important. No one can pour from an empty cup, and caregiving is a constant job.
To better support our patients’ caregivers, my COVE colleagues and I are embarking on a two-phased research study to better understand the acute and long-term health risks associated with caregiving – at home and via assisted living. Through our study, we hope to uncover opportunities to provide the support caregivers need to manage their loved one’s health and improve their own symptoms and well-being.
Symptoms and outcomes of caregiver burden
In studies, more than half of family caregivers say they have experienced high levels of stress, and a quarter report it has negatively affected their daily life. However, caregivers often worry that recognizing symptoms – let alone discussing them with their doctor – may result in perceptions that they are weak, have failed, or shouldn’t be caring for a loved one.
None of these misperceptions are true. Caregivers must be cognizant of their own health to live well and to provide safe, effective care for aging loved ones. Talk with your doctor if you experience symptoms associated with caregiver burnout.
- Feeling sick more often
- Headaches and neck/back pain caused by stress
- High blood pressure – one study suggests half of caregivers may have it
- Muscle and joint pain from helping with bed, bath, or chair transfers
- Unintended weight changes
- Deterioration of family relationships
- Emotional distress
- Emotional exhaustion
- Financial stress
- Sleep disturbances
- Social isolation
It goes without saying these symptoms come in waves and can get worse over time without proper support. This applies to people who are caring for an aging loved one at home, as well as adult children of seniors in assisted living.
Financial costs for out-of-home care can be overwhelming. According to Genworth Financial, Inc.’s 2021 Cost of Care Survey, adult day health care costs a median of nearly $1,700 a month, and a private room at a nursing home costs over $9,000 a month. Costs vary depending on where your loved one lives and the level of care they need.
Often, caregivers worry about their loved one’s safety away from home. And many agonize over whether they’ve made the right decision for their loved one’s care. A study of 296 caregivers faced with the choice to move a cognitively impaired loved one to a nursing home found that 27% felt mild regret and 15.2% felt moderate to high regret after making their choice.
Though caregiver stressors vary between home and assisted living environments, the emotional load can take a toll on your physical and mental health. When you’re not feeling your best, mistakes can happen in your loved one’s care: medication management errors, missing critical doctor visits, or physical accidents such as falling or dropping them.
As a caregiver, it’s important to be honest with your primary care provider about your burnout symptoms or other health concerns – and equally important to bring up your symptoms if your doctor doesn’t initiate the conversation.
While you don’t usually have the flexibility to “clock out” as a caregiver, you don’t have to try to do everything on your own. Though your aging loved one’s doctor focuses primarily on them, we are experts in recognizing caregiver burnout. COVE social workers provide supportive services such as counseling and navigating resources.
Through our research project, the COVE team hopes to generate innovative ideas to close the gaps between geriatric medicine and caregiver wellness.
A closer look at COVE
Seniors need better primary care access and fewer hospital admissions. UT Southwestern's geriatric specialists target both concerns with COVE – an award-winning house call program that delivers precision medicine to people who need it most.
Research to connect caregivers with burnout treatment
In our study, we’re collecting and analyzing anonymous demographic, personal health, and survey data to better understand the challenges of caregiving. We are using a version of the Zarit Burden Interview – a popular self-reporting survey tool – to identify symptoms, challenges, and gaps between geriatric medicine and caregiver support.
Caregivers who choose to participate will answer 22 questions about their experience as in-home or long-distance caregivers using a five-point scale. So far, more than 100 caregivers have completed the study, and we’re analyzing the data as it is collected.
The data we gather from this study will help us better understand the details of burnout, enabling us to provide connections to additional resources for caregivers. As a tertiary care center, UT Southwestern is uniquely equipped to streamline referrals for caregivers to specialists in internal medicine, mental health care, physical therapy, and more.
Our goal is to get you connected with resources – online and through your primary care provider – to make your life easier and personal health better.
Tips and resources for caregivers
If you or a family member is experiencing symptoms of caregiver burden, here are a few suggestions to start chipping away at the problem:
- Ask your doctor about the Zarit Burden Interview. The results can help your doctor assess whether you are experiencing burnout and direct your next steps.
- Talk with your doctor and the geriatric team online. The MyChart patient portal is a quick way to communicate questions or concerns with your family’s doctors and nurses.
- Connect with a support group or service agency. Many of these groups can work with you online, reducing the stress around arranging care for your loved one so you can leave home.
By 2050, the population of the United States will include nearly 90 million people over the age of 65, marking the first time there will be more older people than younger people in the country. About half of all in-home caregivers in the U.S. are family members, meaning millions of people caring for aging loved ones are at risk of burnout.
You are not alone – physical and emotional support are not only available, but vital.