Tagged Dementia

Stalked by The Fear That Dementia Is Stalking You

Do I know I’m at risk for developing dementia? You bet.

My father died of Alzheimer’s disease at age 72; my sister was felled by frontotemporal dementia at 58.

And that’s not all: Two maternal uncles had Alzheimer’s, and my maternal grandfather may have had vascular dementia. (In his generation, it was called senility.)

So what happens when I misplace a pair of eyeglasses or can’t remember the name of a movie I saw a week ago? “Now comes my turn with dementia,” I think.

Then I talk myself down from that emotional cliff.

Am I alone in this? Hardly. Many people, like me, who’ve watched this cruel illness destroy a family member, dread the prospect that they, too, might become demented.

Judith Graham (left) with her sister, Deborah.(Courtesy of Judith Graham)

The lack of a cure or effective treatments only adds to the anxiety. Just this week, news emerged that another study trying to stop Alzheimer’s in people at extremely high genetic risk had failed.

How do we cope as we face our fears and peer into our future?

Andrea Kline, whose mother, as well as her mother’s sister and uncle, had Alzheimer’s disease, just turned 71 and lives in Boynton Beach, Florida. She’s a retired registered nurse who teaches yoga to seniors at community centers and assisted-living facilities.

“I worry about dementia incessantly. Every little thing that goes wrong, I’m convinced it’s the beginning,” she told me.

Because Kline has had multiple family members with Alzheimer’s, she’s more likely to have a genetic vulnerability than someone with a single occurrence in their family. But that doesn’t mean this condition lies in her future. A risk is just that: It’s not a guarantee.

The age of onset is also important. People with close relatives struck by dementia early — before age 65 — are more likely to be susceptible genetically.

Kline was the primary caregiver for her mother, Charlotte Kline, who received an Alzheimer’s diagnosis in 1999 and passed away in 2007 at age 80. “I try to eat very healthy. I exercise. I have an advance directive, and I’ve discussed what I want [in the way of care] with my son,” she said.

“Lately, I’ve been thinking I should probably get a test for APOE4 [a gene variant that can raise the risk of developing Alzheimer’s], although I’m not really sure if it would help,” Kline added. “Maybe it would add some intensity to my planning for the future.”

I spoke to half a dozen experts for this column. None was in favor of genetic testing, except in unusual circumstances.

“Having the APOE4 allele [gene variant] does not mean you’ll get Alzheimer’s disease. Plenty of people with Alzheimer’s don’t have the allele,” said Mark Mapstone, a professor of neurology at the University of California-Irvine. “And conversely, plenty of people with the allele never develop Alzheimer’s.”

Tamar Gefen, an assistant professor of psychiatry and behavioral sciences at Northwestern University’s Feinberg School of Medicine, strongly suggests having an in-depth discussion with a genetic counselor if you’re considering a test.

“Before you say ‘I have to know,’ really understand what you’re dealing with, how your life might be affected, and what these tests can and cannot tell you,” she advised.

Karen Larsen, 55, is a social worker in the Boston area. Her father, George Larsen, was diagnosed with vascular dementia and Alzheimer’s at age 84 and died within a year in 2014.

Larsen is firm: She doesn’t want to investigate her risk of having memory or thinking problems.

“I’ve already planned for the future. I have a health care proxy and a living will and long-term care insurance. I’ve assigned powers of attorney, and I’ve saved my money,” she said. “Eating a healthy diet, getting exercise, remaining socially engaged — I already do all that, and I plan to as long as I can.”

“What would I do if I learned some negative from a test — sit around and worry?” Larsen said.

Currently, the gold standard in cognitive testing consists of a comprehensive neuropsychological exam. Among the domains examined over three to four hours: memory, attention, language, intellectual functioning, problem-solving, visual-spatial orientation, perception and more.

Brain scans are another diagnostic tool. CT and MRI scans can show whether parts of the brain have structural abnormalities or aren’t functioning optimally. PET scans (not covered by Medicare) can demonstrate the buildup of amyloid proteins — a marker of Alzheimer’s. Also, spinal taps can show whether amyloid and tau proteins are present in cerebrospinal fluid.

A note of caution: While amyloid and tau proteins in the brain are a signature characteristic of Alzheimer’s, not all people with these proteins develop cognitive impairment.

Several experts recommend that people concerned about their Alzheimer’s risk get a baseline set of neuropsychological tests, followed by repeat tests if and when they start experiencing worrisome symptoms.

“When it comes to thinking and memory, everyone is different,” said Frederick Schmitt, a neurology professor at the University of Kentucky. Having baseline results is “very helpful” and “allows us to more carefully measure whether, in fact, significant changes have occurred” over time, he said.

Nora Super holds nieces Kylie and Lian Ascher on the couch beside Nora’s father, Bill Super, and her aunt Trudy Super.(Courtesy of Nora Super)

Nora Super, senior director of the Milken Institute Center for the Future of Aging, watched her father, Bill Super, and all three of his siblings succumb to Alzheimer’s disease over the course of several years — falling, she said, “like a row of dominoes.”

One of her sisters was tested for the APOE4 genetic variant; results were negative. This is no guarantee of a dementia-free future, however, since hundreds of genes are implicated in Alzheimer’s, Lewy body dementia, frontotemporal dementia and vascular dementia.

Rather than get genetic or neuropsychological tests, Super has focused on learning as much as she can about how to protect her brain. At the top of the list: managing her depression as well as stress. Both have been linked to dementia.

Also, Super exercises routinely and eats a MIND-style diet, rich in vegetables, berries, whole grains, nuts, fish and beans. She is learning French (a form of cognitive stimulation), meditates regularly and is socially and intellectually active.

According to a growing body of research, physical inactivity, hearing loss, depression, obesity, hypertension, smoking, social isolation, diabetes and low education levels raise the risk of dementia. All of these factors are modifiable.

What if Super started having memory problems? “I fear I would get really depressed,” she admitted. “Alzheimer’s is such a horrible disease: To see what people you love go through, especially in the early stages, when they’re aware of what’s happening but can’t do anything about it, is excruciating. I’m not sure I want to go through that.”

Gefen of Northwestern said she tells patients that “if [cognitive testing] is something that’s going to stress you out, then don’t do it.”

Nancy Smith celebrates her 81st birthday with sons Nigel (right) and Tim Smith.(Courtesy of Nigel Smith)

Nigel Smith, 49, had a change of heart after caring for his mother, Nancy Smith, 81, who’s in hospice care in the Boston area with Alzheimer’s. When he brought his mother in for a neuropsychological exam in early 2017 and she received a diagnosis of moderate Alzheimer’s, she was furious. At that point, Nancy was still living in the family’s large home in Brookline, Massachusetts, which she refused to leave.

Eventually, after his mother ended up in the hospital, Smith was given legal authority over her affairs and he moved her to a memory care unit.

“Now, she’s deteriorated to the point where she has about 5% of her previous verbal skills,” Nigel said. “She smiles but she doesn’t recognize me.”

Does he want to know if something like this might lie in his future?

A couple of years ago, Smith said he was too afraid of Alzheimer’s to contemplate this question. Now he’s determined to know as much as possible, “not so much because I’m curious but so I can help prepare myself and my family. I see the burden of what I’m doing for my mother, and I want to do everything I can to ease that burden for them.”

Kim Hall, 54, of Plymouth, Minnesota, feels a similar need for a plan. Her mother, Kathleen Peterson, 89, a registered nurse for over 50 years, was diagnosed with vascular dementia five years ago. Today, she resides in assisted living and doesn’t recognize most of her large family, including dozens of nieces and nephews who grew up with Hall.

Hall knows her mother had medical issues that may have harmed her brain: a traumatic brain injury as a young adult, uncontrolled high blood pressure for many years, several operations with general anesthesia and an addiction to prescription painkillers. “I don’t share these, and that may work in my favor,” she said.

Still, Hall is concerned. “I guess I want to know if I’m at risk for dementia and if there is anything I can do to slow it down,” she said. “I don’t want what happened to my mother to happen to me.” Probably, Hall speculated, she’ll arrange to take a neuropsychological exam at some point.

Several years ago, when I was grieving my sister’s death from frontotemporal dementia, my doctor suggested that a baseline exam of this sort might be a good idea.

I knew then I wouldn’t take him up on the offer. If and when my time with dementia comes, I’ll have to deal with it. Until then, I’d rather not know.

Related Topics

Aging Navigating Aging

Alzheimer’s Disease as an Adventure in Wonderland

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A page from “Aliceheimer’s: Alzheimer’s Through the Looking Glass,” by Dana Walrath.

A page from “Aliceheimer’s: Alzheimer’s Through the Looking Glass,” by Dana Walrath.Credit

In her memoir “Aliceheimer’s: Alzheimer’s Through the Looking Glass,” Dana Walrath uses drawings and stories to chronicle three years of caregiving for her mother, Alice, who was in the middle stages of Alzheimer’s disease. The experience turned out to be a magical trip down the rabbit hole of memory loss, an outcome that inspired Dr. Walrath, a medical anthropologist who taught at the University of Vermont College of Medicine and who also studied art and writing, to share their tale.

Refusing to accept the dominant narrative of Alzheimer’s disease as a horror story, Dr. Walrath used the techniques of graphic medicine to create “Aliceheimer’s,” an 80-page, 35-picture tribute to her mother’s animated mind. Graphic medicine uses text and graphics to, as she writes in the book’s introduction, “let us better understand those who are hurting, feel their stories, and redraw and renegotiate those social boundaries.”

We spoke with Dr. Walrath to learn more about graphic medicine, how the book came into being, and what it can teach others about caring for someone with Alzheimer’s disease. Here’s an edited excerpt of our conversation.

Q.

You say that “Aliceheimer’s” found you, not the other way around. What’s the backstory of your story?

A.

After a lifetime of mutually abrasive interaction, my mother moved into my home when a lock-down memory-care unit was her only other option. The years of living together not only brought us closure, but it also integrated my disparate career threads. Medical anthropology, creative writing, visual art — who knew they were connected? I sure didn’t. But Alice must have. During dementia, she said to me, “You should quit your job and make art full time.”

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A page from “Aliceheimer’s: Alzheimer’s Through the Looking Glass,” by Dana Walrath.

A page from “Aliceheimer’s: Alzheimer’s Through the Looking Glass,” by Dana Walrath.Credit

Q.

What is “graphic medicine” and how did you discover the genre?

A.

I started making “Aliceheimer’s” comics before I knew that graphic medicine existed. Watching Alice — a lifelong reader who was finding straight prose too hard to track — eat up books like “Maus,” “Persepolis,” “American Born Chinese” and “Fun Home” when she lived with me, made me certain that to tell our story I wanted to use a form that a person with dementia could access. When a fellow medical anthropologist introduced me to graphic medicine, I knew I had found my tribe. The “Graphic Medicine Manifesto” defines graphic medicine as “the intersection of the medium of comics and the discourse of health care.”

Q.

Which came first: your drawings or your stories? When and how did they merge?

A.

The drawings came first. If you page through “Aliceheimer’s” looking only at the left-hand pages, you can read the original comic, a love story in pictures. I started writing short vignettes, each one in response to one of the original drawings. I began posting them on a blog until the content felt right for the intimate interior of a book.

Q.

How did the “Alice in Wonderland” theme come into play?

A.

My father had read it out loud to us as kids, and during dementia Alice and I often recited parts of it together. But the day I cut up a cheap paperback copy of “Alice in Wonderland” to depict Alice’s bathrobe, her favorite garment, I knew I had found the voice for the story. Life with dementia is filled with alternate realities and magic, both scary and uplifting. Accepting wonderland as our baseline made day to day life an adventure.

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<strong> </strong>A page from “Aliceheimer’s: Alzheimer’s Through the Looking Glass,” by Dana Walrath.

A page from “Aliceheimer’s: Alzheimer’s Through the Looking Glass,” by Dana Walrath.Credit

Q.

How might “Aliceheimer’s” influence the medical, artistic and caregiving communities?

A.

I would love to see “Aliceheimer’s” contribute to reframing dementia as a diversity issue. Of course there is loss involved, but the more we can see people living in this state as useful true humans who might teach us all something about living in the present, about knowing sides of our loved ones that social processes kept inaccessible, the better it will be.

I would love for the medical community to start to touch on the opportunities for closure and forgiveness that this condition might bring instead of the ongoing fight for the cure. For artistic and caregiving communities, I hope the book empowers people to tell their stories, particularly in comics form.

Q.

In “Aliceheimer’s,” you suggest new ways of thinking about Alzheimer’s. How did your mother’s memory-stealing disease open your mind?

A.

The dominant zombie story of bodies without minds strips people with dementia of their humanity and interferes with creating new kinds of familial connections. How many of us have the privilege of knowing our parents as children? Through connection we heal. Comics lead us to light because, subconsciously, we associate comics with laughter, and we need permission to laugh at sickness and not just describe it in medical terms. Laughter is respite. It opens new possibilities for how to cope.

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A page from “Aliceheimer’s: Alzheimer’s Through the Looking Glass,” by Dana Walrath.

A page from “Aliceheimer’s: Alzheimer’s Through the Looking Glass,” by Dana Walrath.Credit

Q.

What suggestions do you have for people caring for a loved one with Alzheimer’s?

A.

Learn to read the signs and messages embedded in your loved one’s actions. Often what looks delusional is an attempt to express a deeply felt need or desire. Dementia has them communicating through a code that we can track. Use the “Yes, and” principle from improv — in which you accept what the other person has said (“yes”) and then expand on that line of thinking (“and”) — to build on what your loved one is experiencing instead of contradicting them, and it will be easier to decipher his or her intentions.

Dementia lets all of us connect back to our deepest memories, to a time when we could communicate — give and receive stories — through the looks in each other’s eyes, through touch, facial expressions, actions and gestures. In this way, even in the midst of loss, dementia lets us heal.

Heartburn Drugs Tied to Dementia Risk

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The popular heartburn drugs known as proton pump inhibitors have been linked to a range of ills: bone fractures, kidney problems, infections and more. Now a large new study has found that they are associated with an increased risk for dementia as well.

Proton pump inhibitors, or P.P.I.s, are widely available both by prescription and over the counter under various brand names, including Prevacid, Prilosec and Nexium.

German researchers, using a database of drug prescriptions, studied P.P.I. use in 73,679 men and women older than 75 who were free of dementia at the start of the study. Over an average follow-up period of more than five years, about 29,000 developed Alzheimer’s disease or other dementias. The study is in JAMA Neurology.

After controlling for age, sex, depression, diabetes, stroke, heart disease and the use of other medicines, they found that regular use of P.P.I.s increased the risk for dementia in men by 52 percent and in women by 42 percent, compared with nonusers.

“Our study does not prove that P.P.I.s cause dementia,” said the senior author, Britta Haenisch of the German Center for Neurodegenerative Diseases. “It can only provide a statistical association. This is just a small part of the puzzle.

“Clinicians, pharmacists and patients have to weigh the benefits against the potential side effects,” she continued, “and future studies will help to better inform these decisions.”

To Reduce the Risk of Alzheimer’s, Eat Fish

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Salmon for sale at the Tsukiji fish market in Tokyo, Japan.

Salmon for sale at the Tsukiji fish market in Tokyo, Japan.Credit Kevin Miyazaki for The New York Times

Eating seafood is linked to a reduced risk of dementia-associated brain changes in people who carry the ApoE4 gene variation, which increases the risk for Alzheimer’s disease. Eating seafood was not linked to similar changes in those who carried other forms of the ApoE gene.

The study, published in JAMA, looked at 286 autopsied brains and also found that eating seafood was linked to increased mercury in the brain, but that mercury levels were not linked to brain abnormalities.

After controlling for age, sex, education and other factors, the researchers found that compared with those who ate less seafood, ApoE4 carriers who had one seafood meal or more a week had lower densities of the amyloid plaques and neurofibrillary tangles typical of Alzheimer’s disease. Over all, they had a 47 percent lower likelihood of having a post-mortem diagnosis of Alzheimer’s.

Consumption of fish oil supplements was not correlated with pathological brain changes.

The lead author, Martha Clare Morris, a professor of epidemiology at Rush University, said that mercury from fish appears to pose little risk for aging people. But, she said, there are studies that show that mercury consumption in pregnancy can cause cognitive problems in babies.

“Most studies in dementia have found that one seafood meal a week is beneficial,” she said, though “they haven’t found that the more you eat, the lower the risk.”