KEY TAKEAWAY: Almost 45 million American adults provided informal (unpaid) care. Over half of caregivers are female (60%) while caregiving can take an enormous toll on caregivers. For example, a Stanford Medicine study that showed 40 percent of Alzheimer’s caregivers die before their patient, “not from disease, but from the sheer physical, spiritual and emotional toll of caring for a loved one with Alzheimer’s.
Eight in 10 are taking care of one person (82%). They are 49 years of age, on average. A large majority of caregivers provide care for a relative (85%), with 49 percent caring for a parent or parent-in-law. One in 10 provides care for a spouse. Higher-hour caregivers are almost four times as likely to be caring for a spouse/partner. And all this while trying to work and raise a family.
Three in five care recipients have a long-term physical condition (59%), more than a third have a short-term physical condition (35%), and a quarter have a memory problem (26%). Many care recipients have more than one ongoing problem or illness (37%).
When caregivers are asked what they perceive to be the main reason their recipient needs care, the top three problems reported are “old age” (14%), Alzheimer’s or dementia (8%), or surgery/wounds (8%). Some other common conditions include: cancer (7%), mobility (7%), and mental/emotional health issues (5%).
Although Alzheimer’s or dementia is cited by only 8 percent of caregivers as the main condition for which the care recipient needs help, a total of 22% report their loved one does suffer from this type of condition.
On average, caregivers spend 24.4 hours a week providing care to their loved one . Nearly one-quarter provide 41 or more hours of care a week (23%). Caregiving is particularly time-intensive for those caring for a spouse/partner (44.6 hours a week).
Caregivers help, on average, with 4.2 out of 7 Instrumental Activities of Daily Living (IADLs), including transportation (78%), grocery or other shopping (76%), or housework (72%). Higher-hour caregivers are more likely to help with each of the seven IADLs.
Caregivers’ responsibilities often extend beyond the traditional ADLs and IADLs, to interacting with various providers, agencies, and professionals on their care recipient’s behalf. Two out of three monitor their care recipient’s condition to adjust care (66%), 63 percent communicate with health care professionals, and 50 percent advocate for their recipient. Higher-hour caregivers are more likely to report doing each of these tasks, suggesting that these activities are not without their own additive effect on caregivers’ time.
All of these activities add up to a burden of care that varies widely for caregivers: 40 percent of caregivers report high burden, 18 percent report moderate burden, and 41 percent report a relatively low burden.
Yet where do caregivers turn when they need help? Our health care system largely ignores caregivers and with cuts coming to Medicare and Medicaid it could get a lot worse. I have yet to find one pharma website that addresses the need of caregivers with online resources and links. It’s a problem that’s only going to get worse. Employers need to offer caregiver counseling to employees and insurers also need to provide support. Time to stop thinking of ROI and focus on people.