Honoring the Unpaid Caregivers of Loved Ones with Alzheimer’s

(All figures are taken from the 2023 special report from the Alzheimer's Association.)

Most people today know what Alzheimer’s disease is and how devastating it can be. But many may not realize exactly how widespread it has become, and how much of a strain it puts on unpaid caregivers. November is National Alzheimer’s Disease Awareness Month and National Family Caregivers Month, so it is a good time to reflect and show appreciation for caregivers.

Around 6.7 million people in the United States are now diagnosed with Alzheimer’s disease – and this number is only expected to increase. As the size of the U.S. population age 65 and older continues to grow, so too will the number and proportion of Americans with Alzheimer’s or other dementias. Approximately 1 in 9 people over age 65 has Alzheimer’s. For the over 85 age group, that number jumps to just 1 in 3.

Shockingly, a substantial number of those who meet the criteria for Alzheimer’s and other dementias are actually never diagnosed with dementia by a physician. Furthermore, according to one report, only about half of Medicare beneficiaries who have a diagnosis of Alzheimer’s or another dementia in their billing records report being told of their diagnosis. Because Alzheimer’s is often underdiagnosed – and if it is diagnosed by a clinician, people appear to often be unaware of their diagnosis – a large portion of those with Alzheimer’s may not even know that they have it.

Individuals with mild symptoms often may continue to work, drive, and participate in their favorite activities, with occasional help from family members and friends. However, Alzheimer’s disease is progressive, meaning it gets worse over time. How quickly it progresses varies from person to person. As time passes, more help from caregivers is needed to assist with activities of daily living, such as dressing, feeding, and bathing, to keep the individual safe.

83% of the help provided to older adults in the United States comes from family members, friends, or other unpaid caregivers. And nearly half of all caregivers who provide help to older adults do so for someone with Alzheimer’s or another form of dementia, adding up to more than 11 million individuals. In 2022, the 11.5 million unpaid caregivers of people with Alzheimer’s or other dementias provided an estimated 18 billion hours of unpaid help. This number represents an average of 30 hours of care per caregiver per week.

Caregivers provide assistance to a person with dementia primarily to keep their loved one at home instead of in an assisted living facility or nursing home.  It is a difficult but rewarding work, and these unsung heroes deserve more credit than they often receive.

I have direct personal experience with Alzheimer’s; my mother developed early onset Alzheimer's, at a time when people weren’t talking about it. My mother, who passed away in 1978, was diagnosed initially with everything from bronchitis to senile dementia. Senile dementia was the catchall basket for things they really didn't know how to explain, and now they tend to differentiate between the different types of dementia (Alzheimer's, vascular, Lewy bodies, Parkinson's, etc.), but in the long run you end up in the same place of needing total care from other people.

My mother was an artist and was always a little bit eccentric.  Looking back, I now realize that the disease was present a lot sooner, a lot earlier, than the acute symptoms of memory loss: not knowing who my dad was, not being able to paint anymore. That was my mother's pride and joy, was being able to paint, and should have been a huge red flag for my father and I when she stopped painting. But, again, we weren't educated in this area, nobody was really at that time. There was no Alzheimer’s Association.  Thankfully things are different now, and so we take this month to educate ourselves about Alzheimer’s and the effects it has not only on those who have the disease, but on their loved ones and caregivers as well.

So in honor of both National Alzheimer’s Disease Awareness Month and National Family Caregivers Month, take the time to check out the Alzheimer’s Association website for education, and show your support to any caregivers in your life.