Fighting Off Stereotypes of Alzheimer’s and Other Dementias

Personal Perspective: Refusing to give up in the face of dementia.

By Greg O’Brien

Sunset on Skaket Beach, Cape Cod
Source: Greg O’Brien

Facing financial challenges with my advancing Alzheimer’s and cancer, I often repeat: “I have plenty of money; it’s just tied up in debt…”

Humor is a coin of life—a currency needed in plodding through the serpentine valley of Alzheimer’s and other forms of dementia.

I know first-hand about Alzheimer’s, a mind-body malaise that experts say can take up to 20 years to run its fearsome course—like having a sliver of your brain shaved every day. Alzheimer’s has taken several of my family members over the years, and about a decade ago, Alzheimer’s came for me. I’m 74 now, about to turn the quarter on two-thirds of a century.

As a career journalist, a political and investigative reporter, I chose not to hide in the bunker but instead to come out punching at this hellish disease in full faith, hope, and humor, refusing to give in, refusing to give up, as experts race for a cure, and as I read the wrenching obits of others who have died from this disease.

So, I turned to the iconic film Animal House, to John Belushi, aka “Bluto” Blutarsky, in his epic speech rallying defeated fraternity brothers facing school expulsion:

“Over? Did you say ‘over’?” Bluto goads them. “Nothing is over until we decide it is!”

And so it should be in Alzheimer’s and other dementias, fighting back in numbers, as we can in the moment. The stereotypes of Alzheimer’s and other forms of dementia are just plain false.

“People with dementia can and do continue to have meaningful, active lives,” states the Alzheimer’s Foundation of America. “It’s important that they try to continue to enjoy their usual activities for as long as they can, making some adaptations and relying on help from others. Many people in the earlier stages of dementia—and even into the middle stages—can learn new routines and habits. Most importantly, during all stages of dementia, people are capable of giving and receiving love, able to share moments of joy and laughter.”

Dementia can take others by surprise,” says a statement from those battling Alzheimer’s and other forms of dementia with the counseling of the Alzheimer’s Family Support Center of Cape Cod, where I serve as an advisor.

“Dementia can be invisible, so people in your life may not recognize that you have it or think that they know anyone who is affected by it,” notes a statement from the group’s Social Engagement Program, a cornerstone of the organization. “Some of us on this journey have had generations of dementia in our families and have cared for parents and grandparents. Dementia can be demoralizing. We see how it affects our kids, our grandkids, everyone. Many of us with Alzheimer’s have been successful earlier in our lives. We have served in the military and taught school and raised kids. We have spent our lives helping others, and we don’t want to stop.”

And we shouldn’t. As the Alzheimer’s Family Support Center notes: “Until there’s a cure, there’s community.”

Community is a plural. A pity party, after all, is just a party of one. Those fighting dementia today are in a public petri dish of sorts. We can either assist the research in terms of early diagnosis, clinical tests, pursuing brain health models, figuring out new pathways, and the like, or we can just surrender.

I remember well, so etched in my long-term memory, sitting in my doctor’s office years ago with my wife Mary Catherine by my side, listening to my diagnosis after confirmation of numerous tests and brain scans. I could feel the tears running down my face. I reached for my wife’s hand and said, “What about the kids?”

Alzheimer’s is about the kids—your kids, my kids, your grandkids, my grandkids. It’s about protecting the next generations from this vile disease—about providing teachable moments. You can’t do that if you have surrendered.

I’ve lived on Outer Cape Cod for close to a half-century, just a mile from pastoral Cape Cod Bay and near the Atlantic. My pathway, when feelings overcome, is watching a stunning sunset at Skaket Beach on the bay or a serene walk along the ocean at Nauset Beach in Orleans, where I follow the soothing surf, tossing like a little boy, small flat weather-beaten beach stones into the surface of the sea, then watching them bounce—flinging concerns away.

Then, I follow the path back to where I started. It’s always a peaceful, spiritual walk for me, making me realize there’s something far more powerful than the pain of dementia. I observe the single footprints in front of me, reflecting on the allegorical poem Footprints in the Sand—God carrying me.

There are many coping mechanisms. Caregivers can also help find new pathways for loved ones with a better understanding of the disease. “By spreading awareness of the effects of Alzheimer’s, we can accelerate the search for a cure,” advises Cure Alzheimer’s Fund.

The biggest obstacle, though, is often stress. The Mayo Clinic has a remedy for such anguish: “Your body often interprets stress as a threat to survival. When this happens, your brain releases stress hormones throughout your body, further contributing to your experience of emotional exhaustion. When you're able to focus on small neutral or positive events, your brain learns that the threat is not as dire as it may first seem. The amount of stress hormone released is decreased, and you're able to feel more emotionally balanced.”

Take Dr. Rudy Tanzi’s direction, for example. Dr. Tanzi, Chair of the Cure Alzheimer’s Fund Research Leadership Group, co-director of Mass General Institute for Neurodegenerative Disease, and a Joseph P. and Rose F. Kennedy Professor of Neurology at Harvard Medical School, calls his simple brain enhancing program “SHIELD.”

It stands for: Sleep at least seven hours a night; Handle stress; Interact regularly with friends; Exercise daily; Learn new things; Eat a healthy Mediterranean-type diet.

Learning new things is key to keeping a mind active and engaged.

And as noted author and scholar, the late William Arthur Ward, has written:

“The adventure of life is to learn.
The purpose of life is to grow.
The nature of life is to change.
The challenge of life is to overcome.
The essence of life is to care.”

This post was also published on the Cure Alzheimer's Fund website.

(Greg O’Brien is a career journalist, writer, and author. He lost his maternal grandfather, mother, and paternal uncle to Alzheimer’s, and before his father’s death, his dad was diagnosed with dementia.)