AARP Report on Informal Caregiving

Informal caregiving, the delivery of health care or daily living needs on an unpaid basis, usually by family or friends, has increased dramatically as the population has aged.  A survey of 1250 such caregivers by the AARP Institute for Public Policy provides basic information on the prevalence and work of these people.  (AARP Report)   About 18% of respondents, or an estimated 43.5 million Americans, have provided informal caregiving to an adult or child in the last 12 months.  Most of this care was provided to adults over age 50.  60% of these caregivers are female.  The average age is 49, but 7% are 75 or older.  85% are providing care to a relative.  On average, they have been in the role for four years, with 24% doing it for more than 5 years.  65% of care recipients are female and they average 69 years old, but 47% are 75 or older.  About half of the care recipients live in the same household as the informal caregiver.  59% of the care recipients have a long-term physical problem, 37% have more than one ongoing health issue and 26% have a memory problem.  More than half of the recipients have been hospitalized in the last 12 months.

Caregivers spend on average over 24 hours a week providing care and 23% provide 41 hours a week or more.  Much of the time is associated with activities of daily living such as feeding and even help in moving from one place to another.  Many caregivers also help with medication, arrange medical appointments and interact with health professionals on the recipients behalf.  57% are performing more complex medical tasks, such as injections, tube feedings, and catheter and colostomy care.  Only 14% have any training or preparation for these more complex tasks.  Half of the caregivers said they basically had no choice in taking on the role.  53% get assistance from another unpaid caregiver, and 32% have some paid help, like aides or housekeepers, while a third have no paid or unpaid help.  Being an informal caregiver is very stressful, the longer a person has been one, the more likely they are to report being in poor or fair health.  38% perceive the caregiving situation to be emotionally stressful and those persons who spend more time per week being a caregiver have higher levels of emotional stress.  Financial strain is also an issue for many of these caregivers.  About 60% work and the informal caregiving affected most of their work situations.

To be very blunt about it, this is major and largely hidden social issue.  It is one that is likely to keep growing as the population ages and as we try to treat more and more health needs in the home, perceiving that to be the least expensive setting.  Older children are caring for even older parents.  Most insurance does not pay for 24 hour home health aide care and it is not apparent that society could afford to provide that to everyone who will need it.  The impact on the lives of Americans, especially older Americans, is very serious.  These caregivers suffer an enormous emotional toll, one that often affects their own physical health.  Their working life is often impacted and there are negative financial consequences.  There is also a significant business opportunity, anyone who can find creative ways to ease the burden of informal caregiving will do very well in the market.