AARP Finds Toll On Family Caregivers Is ‘Huge’
Valuing the Invaluable: The Growing Contributions and Costs of Family Caregiving is a new study by the AARP that estimates a value of $450 billion a year for work done by more than 40 million Americans caring for an elderly or disabled loved one. That may be a bargain for society, but it’s a “huge” burden on the family members.
Cymando Henley’s mom was diagnosed with Multiple Sclerosis as he started college. Now she’s in a wheelchair, and Henley has been taking care of her ever since – for nearly twenty years now – helping her in and out of bed and onto the toilet, and even rolling her over in the middle of the night if she gets uncomfortable. Social programs help pay for about 35 hours a week of in-home health care, but Henley puts in at least that much himself for free, on top of working at a full-time job. Such non-medical care from a professional can cost tens of thousands of dollars a year.
Listen to the story or read about it at NPR.org.
How Much Is $450 billion?
It’s such a large number that the AARP report cites several statistics to put it in context:
- $450 billion is more than Medicaid spending in 2009 ($361 billion, which includes federal & state contributions to health care and long term service & support).
- $450 billion nearly matches total Medicare spending in 2009 ($509 billion).
- $450 billion is about 3.2% of the U.S. GDP in 2009 ($14.1 trillion).
- $450 billion is almost as much as the GDP of Belgium, the 20th largest economy in the world ($471 billion in 2009).
Among the impacts are lost worker productivity, reduced earning capacity and retirement income, and increases in caregiver’s own physical and emotional health and related costs. And the increased political demands and budget cuts for home and community-based services place even more responsibilities and economic burdens on families.
In 2009, more than one in four caregivers of adults (27%) reported a moderate to high degree of financial hardship as a result of caregiving.
Family caregiving is finally gaining validity and recognition among policymakers and health professionals as they recognize that aging-in-place at home with family is far less expensive than institutional care. But it calls for identifying and addressing family needs, which the report stresses. Also key is the integration of family caregivers as partners in care.
Self-directed home services are becoming important funding options by allowing older people and disabled adults to manage a budget for their own care. These programs let them hire their own workers, including family and friends, to provide non-medical personal assistance or to buy needed goods and services, such as assistive technologies and transportation.
The report summarizes current federal and state programs and makes recommendations for improvement, based on AARP’s most recent findings.
RELATED ARTICLES:
Caregiving in the U.S. 2015 (Original study by AARP and National Alliance for Caregiving)
Caregiving Costs to Working Caregivers (MetLife)
Statistics: Problem & Market Opportunity (long and growing list of stats)
Aging in America: Stuck in the Middle (video on the caregiver burden from CBS Morning News)
Who Will Care for the Caregivers? (NY Times, 1/19/2017)
The Australian government pays caregivers. Caregivers sacrifice their career (and more) to care for a loved one at home. Australia is smart to pay the caregivers rather than pay for an infrastructure of support outside the home. Go Aussies!
Wayne, This kind of situation is not only associated with individuals with Alzheimer’s, but also other forms of illness or injury that is debilitating. For example, individuals with severe brain injuries may have severe debilitation, cognitive loss, and/or personality changes. Many marriages do not survive due to the complicated and stressful dynamics from finances, compatibility issues, and so forth.
Caretaking for a loved one is not for everyone and many times a willing spouse is not able, because his or her loved one may be violent, resistive to care, excessively wander, exhibit disturbing and/or inappropriate behaviors, etc. Many times with Alzheimer’s and brain injury, the individuals involved are relatively young. I must confess that I have mixed feelings sometimes watching the dynamics play out in certain situations similar to the one that Pat Robertson commented on. On a certain level, there is a betrayal factor on the part of the husband concerning his wife with severe Alzheimer’s because he moved on with another relationship.
Opinions are very strong concerning what is the right or wrong response in this situation for the husband. Because a person chooses to divorce a severely impaired spouse, does not mean that the person does not care about his or her spouses’ well-being. I have heard Pat Robertson’s comment many times from families; we don’t want to hear someone in Pat Robertson’s position even hint about divorce as an answer in any situation. I admire those spouses who devote themselves in the caretaker role and seem to fit the ideal of “in sickness and in health.” However, divorce is an option for some individuals, not necessarily because they are doing the wrong thing, but because they are trying to do the right thing for their particular situation. Still others will move on with an intimate relationship(s) and not divorce.
I cannot know the spiritual dilemma and suffering for both spouses throughout the disease process and I pray to God that in these situations that souls are drawn close to Him, in spite of our weaknesses. I watched the clip of Pat Robertson’s comment which seemed like not the whole discussion and the explanation of his comment was cut off and not aired. Misinformation about Alzheimer’s many times is part of the dynamics involved. Thanks to all for the insight.
Metlife did a similar study on “Caregiving Costs to Working Caregivers,” but I add this reply to share the following two relevant comments about family caretakers from Linkedin:
From Jim – I helped care for my parents for fifteen years. That sentence is easy to write but more challenging to live. I quit a good job, left my life in southern California where I’d live for 13 years and moved to Texas where I hadn’t lived in three decades. I became an overnight parent at 51, untrained, unemployed an unprepared. I was not paid for the hours of at doctors offices, the trips to the audiologist, three doctor days, hospital duty, hours pushing wheelchairs entertaining at the nursing home, learning how to deal with Alzheimer’s, getting two nonagenarians with broken hips in and out of my car. Learning how to put batteries into the hearing aids Dad wouldn’t wear. Keeping my mouth shut when my father told me how to drive.
Was I paid for this? Indeed I got a a bountiful reward: unselfishness (a new concept for me), patience, improvisation, the chance to know my parents on a non-holiday basis, a closeness that I’d never known before, a chance to “show up” when I was needed, the looks on their faces when I walked in the door, a crash course in flowers from my mother and the chance to memorize every WW-II story in my father’s vast repertoire. Most importantly, I learned to respect those who are nearing the end of life but want to live it as fully as possible. I figure I got several million dollars in character development and didn’t pay taxes on any of it.
From Gerry – My wife and I have been the primary caregivers for our parents. My wife has only worked 4 days a week for the last twelve years. While the income is not recoverable, we are grateful to have been there for good days that our mothers had while battling cancer, Alzheimer’s, and heart disease.
Thanks, Jeff. You may also be interested in our Health Care Statistics.
You get so used to seeing numbers in the billions that it’s nice to see it put into perspective with other numbers. Simply staggering. Another AARP report states “in 2011, 2.5 million boomers will turn 65. On average, this is about 7,000 people turning 65 every day in 2011 and by the end of 2011, there will be 41 million Americans 65 years old and over.
There are approximately 70 million baby boomers and once they all reach retirement age who will take care of all of them? Caregiving will be a huge business in the years to come, not just in the U.S. but around the world. It could end up being one of the largest employers unless, like the study suggests, family caregivers step in and take over. It will certainly make it difficult for many people to earn a living and take care of a loved one.