Lost my mind, lost my money, lost my life to caregiving?

The more a family caregiver becomes involved with helping a loved one, the more he or she to suffer mentally, financially, and physically. A new study published in JAMA Internal Medicine establishes a difference between caregivers who provide substantial help – assisting with care coordinating care and managing medication – as opposed to caregivers who only provide some or no help with healthcare. Furthermore, the authors determined that the former not only provide almost twice as much hours of assistance a week but were also 79% more likely to experience emotional difficulties, and more than twice as likely to experience physical and financial difficulties – as well as being more than 5 times less likely to participate in important activities outside of caregiving, and more than 3 times as likely to experience productivity loss at work.

 Nearly half (45.5%) of the caregivers who provide substantial help assist and older adult with dementia, and 34% care for a loved one with a serious disability, but only a quarter (26.7%) use supportive services – which is the greater figure when compared to 15.5% and 7.6% for caregivers who provide some or no help respectively, but still quite low, especially taking into account the toll that caregiving can take. The researchers assessed the responses 1739 family and unpaid caregivers of older adults living at home rather than in a nursing facility who participated in the 2011 National Health and Aging Trends Study (NHATS) and National Study of Caregiving (NSOC). Extrapolating the numbers, the authors of the study estimate that 14.7 million caregivers assisting 7.7 million older adults, 6.5 million (44.1%) provided substantial help, 4.4 million (29.8%) provided some help, and 3.8 million (26.1%) provided no help with healthcare.

Caregivers who provide substantial help “were also more likely to be older, less likely, to report their own health as excellent or very good, and more likely to experience emotional and physical problems,” Carol Levine of the United Hospital Fund of New York wrote in an invited commentary. “Caregiving negatively affected their employment and their ability to participate in valued activities.” According to Levine, these care providers are becoming increasingly essential to the wellbeing of an aging population suffering from several chronic medical conditions. For example, they accompany their loved ones to doctor’s appointments, ask questions about treatments and medications, organize and administer several different medicines, and assist with daily living activities such as eating, bathing and dressing.

Nevertheless, “family caregivers are still largely ignored in discussions of workforce health care reform,” Levine pointed out, although – or even because of – they provide services that would be worth $470 billion a year even if paid even a measly $12.50 per hour. “This issue is not a small or isolated issue but is widespread,” lead researcher Jennifer Wolff of Johns Hopkins Bloomberg School of Public Health in Baltimore said. “There is no silver bullet easy solution to simplify the management of meeting complex care needs – this is an issue that is experienced by individuals but is the result of the fragmented and complex health care system and long-term care system that families often are left navigating without any formal preparation.”

As far as measures that can be taken to lessen the burden on caregivers who provide substantial help, Levine suggested that “physicians and other professionals should conduct a routine assessment of family caregivers using a systematic approach to ask about the person’s willingness, capabilities, experiences, health status, and other relevant factors.” Additionally, “unlike personal care or emotional support, which requires hands-on care, (medication management and care coordination) are tasks where other family members, close friends, or professionals like pharmacists or social workers can help. If you get help with at least some of the hardest parts, the others can get your full attention.”

Related: How to offset the costs of caring for someone with dementia