You can’t remember what you don’t remember…

There are days when I don’t remember much, so I write everything down. It offers some peace for those, like me, with Alzheimer’s and other dementias.

I suppose in some ways misery loves company. And I have a lot of company in this journey. More than 55 million people worldwide live with dementia—a number, experts say, that’s expected to nearly double in 20 years, reaching an estimated 139 million by 2050.

And the impacts on caregivers is astounding in terms of health and personal costs. Caregivers themselves are often plagued with high anxiety and great depression. And unpaid caregivers provide the equivalent of nearly $470 billion a year in free care.

I’m trying to make more sense of all this. So, I recently sat in my studio on Outer Cape Cod with an expert—Suzanne Faith, a psychiatric nurse and a Certified Dementia Professional (CDP) for 40 years. She’s a caregiving expert, former director of the Alzheimer’s caregiver support program at Cape Cod Healthcare, author of the newly released Dementia Engagement: A Definitive Guide to Alzheimer’s and Dementia Activities, and a good friend.

She counseled me in an interview on the fundamentals of dementia caregiving and how to engage those suffering from the disease.

I’ve dealt with both. Years ago, I was a family caregiver for my parents, both of whom passed away from the disease, which also took my maternal grandfather and paternal uncle. I’ve been blessed, doctors tell me, with resilient cognitive reserve and “neuroplasticity”—the brain’s natural ability at times to reconnect brain paths in synapses, thus allowing a neuron, almost robotically, to pass an electrical or chemical signal to another cell despite disease.

(Had to look that up; I barely passed basic biology in high school.)

Why Understanding Brain Changes Is Critical for Caregiving

The success of caregiving, Faith tells me, depends on understanding the changes that are occurring in the brain and learning how to communicate differently:

“In the early stages of Alzheimer’s, language becomes compromised; both the ability to find the right words as well as comprehend what is being said. Caregivers need to understand this. Comprehending words and teasing out their meaning requires abstract understanding, which a person with dementia can no longer do, especially with the fast pace we often speak. Instead, caregivers should speak slowly and use simple language.”

In caregiving, Faith says, “Knowing how the disease progresses can help caregivers adjust their strategies for care. For example, there are four lobes of the brain, each commanding their own unique set of functions. In Alzheimer’s disease, the first lobes to be compromised are the temporal and frontal lobes. If caregivers understand that the frontal lobe controls planning and initiating ideas and the temporal lobe controls language and hearing, compensating for these losses and adjusting how one communicates will lead to greater successes throughout the day.”

Many caregivers, Faith notes, often mistakenly think that those in their care do not want to do anything, and instead seem to prefer just sitting and watching television or staring out the window. “What is happening in their brain is that those with dementia simply don’t understand what a caregiver is asking, which requires them to visualize the concept and follow through with a choice. Since we’re all hardwired to respond to pleas for help, asking someone with dementia for help in performing a task often yields a greater degree of successful engagement.”

Another strategy for caregivers is combining verbal and nonverbal cues at the same time: “For example,” she adds, “offering a choice of two meals or clothing options and having them point to their preference. This avoids the use of relying on words to indicate what they want and preserves their dignity.”

Instinct, Routine, and Safety in Dementia Care

For strategy purposes, Faith often asks caregivers to imagine they are visiting a foreign country and don’t speak the language: thus, how would one communicate needs? It’s a difficult process for both the patient and a family caregiver. “With dementia, you have two victims—the person with the disease and the caregiver,” she explains. “It can be incredibly difficult for both, as the individual with dementia requires more care and the family member is grieving over the loss of a person that they knew. We should be compassionate to both and their respective plights.”

Faith says that in this decline, “it is essential to preserve the dignity of the one suffering from dementia. Having a disability doesn’t mean that you are less of a person. When shown personal dignity, those with dementia know instinctively that there’s an emotional connection even though they may not recognize the person.”

Instinct, she adds, often is not robbed in early stages of dementia, so it’s important to stick to a routine: “Those with dementia need to feel safe and secure. Without memory to ground them to their world, they are free-floating through the day. This is where a daily routine is important. No surprises. Routine helps those with dementia feel safe, which is a constant concern. It’s a horrifying cycle.”

So those with dementia, Faith says, often adopt the mantra of “I want to go home…I want to go home!… What they actually are expressing by this phrase is: ‘I want to feel safe.’”

I relate to this in my own journey. Years ago when I could still drive, I was heading “home” to Cape Cod after a late-night meeting in Boston. I kept thinking of my childhood and wanted to reconnect with it. At midnight, I was many miles away from Cape Cod on I-95 outside New Haven, driving “home” to Rye, New York in Westchester County, where I grew up just outside Manhattan.

My instincts, not my brain, told me to “go home.” I wanted to feel safe…It wasn’t until I was running out of gas that I realized where I was, turned around, and drove back home to Cape Cod, arriving about 3 am. The experience so frightened me…Still does.

And then there’s the common over-the-top rage in dementia when lights in the brain dim—akin to someone flicking lights off after dark. These are periods of overwhelming confusion and anxiety—again, a time for caregiver calm.

In her book, Dementia Engagement, written for both families and professional caregivers, Faith reinforces: “Celebrate every win, big or small. And remember, you’re not just doing activities; you’re building bridges, honoring stories, and making it through each day one success at a time.”