Family caregivers of older adults are increasingly experiencing stress-related effects of caring for loved ones and may be putting their own health at risk, according to aging and policy experts on the Health Journalism 2015 panel, “Challenges Facing America’s Family Caregivers.” Experts cautioned that a widening “care gap” means fewer available family caregivers to meet future needs.
Most care for older adults is not provided by Medicare or Medicaid-reimbursed services; rather it is done through an informal network of family and friends – usually an adult daughter or daughter-in-law between 45 and 64. Lynn Friss Feinberg, M.S.W., senior strategic policy adviser at the AARP Public Policy Institute, said the “care gap,” or Caregiver Support Ratio, of potential family caregivers for each person over age 80 is a serious concern.
Those age 80 and above are most likely to need long-term services and supports. In 2010, there were more than seven potential caregivers for every person over 80; in 2030, the ratio is expected to drop to 4 to 1, and will decline to 3 to 1 by 2050. Feinberg pointed to family size and greater geographic diversity as the primary reasons.
Feinberg also urged the audience not to use the term “informal caregivers”, because “there’s nothing informal about what they’re doing, including helping with toileting, bathing, and dressing mom and dad.”
The demands of family caregiving, especially if that person has a neurocognitive disorder, places enormous stress on those adult children, said Dolores Gallagher-Thompson, Ph.D., director of the Stanford Geriatric Education Center. In addition to activities of daily living, caregivers stress can occur from their role of medical advocate or needing to manage difficult behaviors like agitation, wandering, and repetitive questioning.
“Compared with non-caregivers, family caregivers experience more physical and mental health vulnerability,” said Gallagher-Thompson, also a professor in the Department of Psychiatry at Stanford University School of Medicine. These include:
- Fatigue
- Sleeplessness
- Increased use of psychotropic drugs and alcohol
- Overeating
- Depressive symptoms
- Increased anxiety and worry
- More anger and frustration
- Impaired immunological response
The majority of caregivers spend about 10 years helping their loved one and nearly 40 percent also have children under age 18 at home, a true “sandwich” generation, said Gallagher-Thompson. “It’s a recipe for increased risk of numerous health problems.” Helping caregivers learn to manage their stressors has been shown to reduce depression, boost life satisfaction and improve coping skills.
When it comes to covering family caregiving issues, journalists have a smorgasbord of stories ideas to choose from, said journalist Yanick Rice Lamb, co-founder of Fierceforblackwomen.com and associate professor and interim assistant chair of the new Department of Media, Journalism and Film at Howard University. Rice Lamb recently reported on what is still an unusual case: a male African American who cared for his dementia-afflicted elderly mother.
Among her suggestions:
- Young adults as caregivers
- Caregiving while still recovering from the recession
- How prepared are caregivers to give care?
- Does the hospital at home model work for everyone?
- “Helicopter” kids
- Children who don’t want their parents to die at home.
- Dealing with HIPAA
- Aging in place safely
- Family dynamics
- Sharing your own caregiving journey, as appropriate
Rice Lamb told attendees, “sharing your stories can be cathartic, but they also serve as road maps, whether they help people understand which way to turn or simply what they’re seeing along the way.”
Here are some helpful resources mentioned during the panel for reporting on this issue:
- AARP Public Policy Institute:
- National Alliance for Family Caregiving
- John A. Hartford Foundation
- Family Caregiver Alliance
- iCareFamily: online information and stress management training for family caregivers
- Alzheimer’s Association
- National Study on Caregiving: Information from th National Health and Aging Trends Survey
- AARP paper: Valuing the Invaluable: The Growing Contributions and Costs of Family Caregiving
Additionally, Liz Seegert, who moderated the panel, oversees AHCJ’s Aging core topic pages which include a number of resources on writing about caregiving.
