Caregiver Dementia: Oh Yea, It’s Real.

For years, we’ve read that Alzheimer’s disease is the leading cause of dementia. That’s not entirely true.

The leading cause is “caregiver dementia,” which strikes an estimated 100 million overwhelmed and stressed-out caregivers worldwide. The term was used initially in the 1980s, and while not an official medical diagnosis, it includes symptoms such as disorientation, forgetfulness and depression.

Stressful conditions produce high levels of the hormone cortisol, which, over time, may contribute to memory loss. Think about it: You’re working long hours, you see no end in sight and you’re exhausted.Who can think straight under those conditions?

In my late 30s, while in the throes of caregiving for my father with Alzheimer’s, I couldn’t recall what year it was while writing a check at the grocery store. How does a woman in her late 30s ask the twenty-something cashier what year it is? Mustering the courage, I asked and she laughed, then looked away as if I were joking. Thinking I could leave that part of the check blank – but I couldn’t even recall the month or day – I asked again in desperation. She refused to tell me. If it weren’t for the older woman behind me who offered, “Honey, it’s 1997,” I’m sure I would have left without my groceries. The woman’s kindness enabled me to relax and surprisingly, the month and day easily came to mind. Despite the positive outcome, I felt anxious as I left the store and drove home.

Imagine if I had been caring for my spouse instead of my father. A 2010 Utah study published in the Journal of the American Geriatrics Society of 1,221 couples tracked for 12 years found that seniors caring for a husband or wife with dementia had six times the risk of getting dementia as members of the general population. Surprisingly, men were most susceptible, facing double that risk.

Some Dementias Are Reversible

Fortunately, caregiver dementia is reversible, as is dementia caused by depression, drug or alcohol abuse, hypothyroidism and vitamin B-12 deficiency.Even undiagnosed urinary tract infections may lead to sudden behavior changes such as confusion, agitation, withdrawal or delirium according to the Alzheimer’s Society in the U.K.

Medicines will also have varying effects, as we grow older. As we age, our liver and kidneys don’t work as efficiently resulting in a buildup over time of unprocessed medications. These chemicals become toxic leading to dementia symptoms or delirium.

Which leaves us with caregiver dementia.

Until caregivers are able to take proactive steps to overcome feelings of hopelessness resulting from the stress of caring for another person, they’ll continue to endure embarrassing and even scary moments.

While on a familiar road, I had a momentary lapse of where I was, when it was and even who I was. It was scary, because I was driving. I maintained enough self-control to keep steering straight (fortunately, the road was straight) while maintaining a steady speed. This incident and a number of other wake-up calls made me finally reach out for help with caring for my father.

Caregivers Will Overcome

Caregivers are a hearty bunch, but we won’t be for long, unless we take notice when multiple alarm bells ring. If we don’t heed the warnings soon enough, many of us will die before those for whom we are caring. We lucky ones will wonder, as my husband and I did, if we were getting Alzheimer’s while trying to keep up with my father’s care. Seriously! There was a time we were looking for home-care options … for us!The onset of caregiver dementia is real and it strikes primary caregivers. Those who heed the call and take action will survive.

But there’s more to being a caregiver than just surviving. We need to apply both legs of our “caring” and “giving” nature to overcome and thrive. We start with a break. As little as a five-minute respite can make all the difference. Ultimately, we’ll need help. Today, caregivers have a variety of options to choose from, including in-home and adult day care, residential care and assisted living. The only other cure is to stop caregiving, and this is not an option for many.

Here is a short video that offers a touching example of a day in the life of a family affected by Alzheimer’s disease. Vincent Zangaro, singer-songwriter and caregiver, sent it to me and asked me to share it. I found it particularly moving, as it depicts him and his wife caring for his father, who was diagnosed with Alzheimer’s at age 62, 10 years ago.