John DenBoer, a clinical neuropsychologist and dementia researcher, was studying the brain and how it works when his grandmother began to develop dementia. She was one of the most important people in his life, and even though he was an expert on this disorder and others like it, he felt helpless.
“That experience galvanized me to help, to make it my personal and professional mission to identify people who may be at risk for dementia, and help provide alternatives,” he said. DenBoer created Smart Brain Aging, a cognitive intervention company with an in-person clinic in Scottsdale, Ariz., and an online program. He is now also a director and producer behind a new film called “This is Dementia,” to be released on May 1 and available on Netflix.
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Cases of Alzheimer’s and dementia are expected to double by 2060, potentially affecting nearly 14 million older Americans, according to a peer-reviewed article in the Journal of the Alzheimer’s Association. Symptoms of these disorders include decline in memory and cognitive abilities, and are most associated with older people. Many family members and close friends end up acting as caregivers to those with dementia, which can be a long, heart wrenching and brutal battle for both parties. “We lost her before she physically died,” DenBoer said.
DenBoer spoke with MarketWatch about his film, dementia and what people can do to help their loved ones — and themselves.
See: Dementia doesn’t have to be the end — here’s how to live well
MarketWatch: What would you say are the major misconceptions or myths around dementia?
John DenBoer: There are many. One, dementia is just synonymous with aging — that it happens as you get older. This is a deep-seated philosophical myth because people tend to base a lot of their actions around that. They don’t take action, they don’t treat dementia like they would treat heart disease or diabetes, they don’t do a lot of the prevention or intervention because they don’t believe anything can be done. That leads to myth No. 2: That nothing can be done to curtail this disease.
And there’s another myth, that by simply doing brain activities, that will somehow be helpful in dementia prevention and intervention. If people keep their brain active, that’s OK, but it is not especially helpful for dementia mitigation because people tend to do things they already know how to do. My grandmother, for instance, she did the New York Times crossword puzzle, and she did that into Stage 2 and 3 dementia. So she would not know who we were but she knew how to do the New York Times crossword puzzle.
MW: So then, what is helpful?
DenBoer: New and novel learning. Doing things with the brain we’ve never done before. The American Academy of Neurology has indicated that doing new things with your brain, new and novel learning, helps release a chemical in the brain that helps prevent the brain from shrinking, which is what happens in all forms of dementia.
MW: How do you suggest someone help a family member or friend with dementia?
DenBoer: This is not meant to be critical — this is a question I get most often by many people — but it is exemplary of having the wrong conversation about dementia. We often times have the conversation about dementia when people get it. It is a great question — what can we do with loved ones who have dementia? How can a caregiver help them? — but I think of that question as akin to having a conversation about what to do with my loved one who has had heart attacks. We should really be having the conversation of what we can do to help people when they get into their 60s and 70s. What can we do to promote optimal brain health so they don’t develop the disease at all. We need to have that conversation along with how to be a caregiver conversation.
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MW: How can that be done?
DenBoer: Everybody should get a brain evaluation. It should consist of a two-hour neuropsychological evaluation and an MRI of the brain. And people should receive repeat testing and repeat MRIs of the brain every two years after the age of 65 for the rest of their lives. And if there are any problems, then it’s our job to pick it up as soon as possible and we can start people on a combination of medications and therapies to help curtail the decline.
MW: Do you think doctors have this conversation?
DenBoer: Doctors don’t have that conversation because they’re not educated on this. Also, it is a difficult conversation to have with clients because people don’t want to do preventive care. I do feel people should be required to do this, or strongly encouraged by our national health care systems, like Medicare. People will typically not elect to do preventive health care, and dementia is a total preventive play — it is just like diabetes and heart disease, or hypertension. There is very little we can do about the disorder once someone has it.
MW: I have seen studies about doctors and patients, or family members, hesitating to have these conversations, because those who are older or at risk get defensive while those talking to them about it feel awkward or uncomfortable. How would you talk about it?
DenBoer: I would emphasize two or three points. Have the conversation very early — timing is everything. When somebody gets to be in their 60s or 65, that’s the time to start having the conversation. I suggest keeping it light and practical. The conversation can be something like a loved one saying “you’re aging, you’re getting older, we need to keep a monitor on your brain health” and “you can do everything you can to help prevent dementia.” And then I would say to make sure your diet is a heart-healthy diet, that you can also reduce hypertension and to keep an eye on your blood pressure, cholesterol, diabetes. Make sure to get evaluated as part of your annual wellness check for any baseline cognitive problems. That’s the big piece.
And then I would say the third part needs to be “I love you, I care about you, and I want to see you as independent for as long as possible.” The conversation is about brain health, not dementia. They tend to think of it as a terrible word they can do nothing about but that isn’t really true. But that’s people’s conception of it, and they’re scared of it. The documentary and book are titled “This is Dementia” because I want to expose it, I want people to use that word. This is a nerdy example, but like Voldemort’s name in “Harry Potter.” Saying it destigmatized it. We can say this word, we can discuss it the same way we discuss heart attacks and cancer. Cancer is a scary word, but people still use it.
Also see: This is the one thing you must do if you’re caring for someone with Alzheimer’s
MW: What do you think would be the impact if we destigmatized the word?
DenBoer: They’d see it as a medical disease and not a mental health issue. It’s sort of bold, but when people started talking about depression they destigmatized it. People wouldn’t keep the disorder under the rug as much — they would say, I have dementia. They didn’t cause it, it’s not a personal defect although it feels like one. During the premiere of the film, people were even laughing. They weren’t laughing at it, but with it, and that’s something we need to do. We can laugh in the face of cancer, and say people battle cancer, but we’re not laughing in the face of dementia, we’re running scared from it. In turn, we’re doing nothing. We’re letting it happen to our loved ones and ourselves.
Source : MTV
