When you consider that the name of my company is “Care for Caregivers,” it’s pretty easy to figure out what our focus is. I’ve been saying it for years: If you are an informal or “at home” caregiver of someone with Alzheimer’s or other dementia, you’re my hero. I recently spoke at a conference in Connecticut and had the opportunity to stop by a table that was handing out brochures on “Caregivers in America.” After reading it, it didn’t take me long to decide that this installment should focus on those incredibly valuable at-home caregivers and the price they are paying.
There are over 15 million unpaid or informal caregivers of those with Alzheimer’s and other dementias in this country and tragically, 30 percent of them will pre-decease those they are caring for. Furthermore, the mortality rate of those caregivers is 63 percent greater than it it is for non-caregivers of the same age. Those are just two of the stats that fuel my passion for what I do.
My attention this week is to look at the broad picture and not drill down on just Alzheimer’s and dementia caregiving. I think you’ll find the information I’m about to share with you as compelling as I did.
For the record, this information is provided by the NAC, the National Alliance for Caregiving (www.caregiving.org). The NAC says there are 39.8 million at-home caregivers in this country and 6 out of 10 are employed. Ninety percent of all caregivers who provide long term support are unpaid. Sixty percent are female and 40 percent are male. One in 10 caregivers are 75 years old or older. Forty-two percent perform medical/nursing tasks, without any training. Seventy-eight percent of those who are providing medical nursing tasks are managing medications as well as administering IVs, injections, as well as medications.
So what kind of a toll is this taking on the caregivers? Not surprisingly, 55 percent feel overwhelmed and one in five report physical strain because of their duties. One in five had to leave the workforce early to care for a loved one(s) and the amount of lost income and benefits for a family caregiver over 50 years old is a shocking $303,880. It should surprise no one that 8 out of 10 of these caregivers admit they could use more information and support, and that’s why I do what I do, and as self-serving as this sounds, it’s why those I work with appreciate it so much.
According to the National Association of States United for Aging and Disabilities, the annual value of this family and friend uncompensated caregiving is $470 billion — an amount rivaling Medicaid spending, which was $545 billion in 2015. One final set of stats for you to digest is where these care recipients receive their care; 48 percent get their care at home, 35 percent get their care in the caregivers home (think about the impact of that), 11 percent get unpaid care in nursing homes, assisted living communities or retirement communities, and 6 percent get their care in someone else’s home altogether.
Once you digest the numbers, it’s easy to see why I have always said these at-home caregivers should be “Sainted.” It would be marvelous if every one of them were natural born caregivers and nurturers, but such is not the case. Many of them have been thrown into it, and would the first ones to tell you that “on the job training” is not the best way to go. My hope and prayer for all of them is that they do reach out to other family members, friends and agencies to take advantage of the help and support that may be available to them. I also hope they realize what a blessing they are in their loved ones life.
Questions? Email me at firstname.lastname@example.org. Remember, Join the Journey.
Robert E.P. Elmer III, of Stonington, is a senior care adviser and Alzheimer’s care specialist. His website is at www.careforcaregivers.org.