Tagged Memory

Dementia Patients Hold On to Love Through Shared Stories

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Credit Paul Rogers

Can you keep the love light shining after your partner’s brain has begun to dim? Just ask Denise Tompkins of Naperville, Ill., married 36 years to John, now 69, who has Alzheimer’s disease.

The Tompkinses participated in an unusual eight-week storytelling workshop at Northwestern University that is helping to keep the spark of love alive in couples coping with the challenges of encroaching dementia.

Every week participants are given a specific assignment to write a brief story about events in their lives that they then share with others in the group. The program culminates with a moving, often funny, 20-minute written story read alternately by the partners in each couple in front of an audience.

Each couple’s story serves as a reminder of both the good and challenging times they have shared, experiences both poignant and humorous that reveal inner strength, resilience and love and appreciation for one another that can be easily forgotten when confronted by a frightening, progressive neurological disease like Alzheimer’s.

“It’s been an amazing experience for us,” Mrs. Tompkins said of the program. “Creating our story revealed such a richness in our life together and is helping us keep that front and center going forward.”

She added that the program provides “an opportunity to process what you’re going through and your relationship to each other. It helped me digest all the wonderful things about John and how well we relate as a couple, things that don’t go away with Alzheimer’s disease. John is so much more than his disease.”

Ditto for Robyn and Ben Ferguson of Chicago, married 42 years in 2012 when they learned that Ben, a psychologist, had Alzheimer’s disease. “The diagnosis was crushing,” said his wife, who is also a psychologist. “Telling people in the program about it helped us recognize the impact on our lives and relationship and really face that. It made things feel not quite so bad.”

The Fergusons have publicly presented their 20-minute story together 19 times so far, helping to enlighten medical students and those training in social work and pastoral care, as well as researchers and members of the general public. “It reinforces our relationship as a couple, rather than caregiver and patient, even though he is 85 percent dependent on me for the activities of daily living.”

Dr. Ben Ferguson, now 69, said, “I feel we’re giving people information that could be very valuable in their future. It’s helpful to them to see us smile, have a good time and give a good report – as well as a bad report – about what goes on with this disease. It’s helpful for people to hear it from someone who has it, and it’s helped us avoid getting so morose.”

As for their presentations, which they now give almost monthly, his wife said, “They help us stay positive and give us a sense of purpose. We both feel a real need to do advocacy work, and this is the best thing we can do right now. We know there’s a sell-by date on this – we won’t be able to do it forever. But we don’t think about that now. Now we’re focused on helping people understand that your life doesn’t stop with the diagnosis. We want people to hear that you go on with your life, even though you may need a lot of help.”

Another workshop participant, Sheila Nicholes, 76, of Chicago, said of her husband, Luther, who has vascular dementia, that the storytelling “brings him back to being funny again. Writing our story together gave us a way to talk about these things, to think about where we were then and where we are now.”

Noting that dementia is “a very hush-hush illness in our black community,” Ms. Nicholes said she hoped that telling their story would help others speak more openly about it and learn to “just roll with the flow.”

The storytelling workshop, which started in January of 2014, was the brainchild of Lauren Dowden, then an intern in social work at Northwestern’s Cognitive, Neurological and Alzheimer’s Disease Center. She quickly learned from family members in a support group that “their concerns were not being addressed about dealing with loss, not just of memory, jobs and independence, but also what they shared as a couple.”

During the group sessions, Ms. Dowden said, “there’s so much laughter in the room, so much joy and love of life as well as poignancy and tears. As they move forward, as the disease progresses, they can be reminded of who they are, their strength and resilience, what has made their relationship strong, what they loved about the person, as opposed to just being patient and caregiver.”

As the program moves week to week, Ms. Dowden said, “there’s more touching, affection, looking at one another and laughing. There are delightful moments of connection when one member of a couple reveals something the other didn’t know.”

The weekly story assignments require that the couple collaborates, “and they learn how to work together in new ways, how to make adjustments, because they’ll have to make thousands and thousands of adjustments throughout the course of the disease.”

In executing the workshop assignments, Dr. Ferguson said she would ask her husband questions, he would answer and she would write down what he said. “The workshop was really transformative,” she said. “It gave us hope for our future together in dealing with this disease.”

Ms. Dowden said the feedback from those in the audience for the 20-minute joint stories has been heartening. She explained, “Students learn about the biology of neurodegenerative conditions. These stories enable them to see the human side of the disease, what it’s like to live with it, and may help them develop programs that help these families live better. In addition to the stigma, there’s a tendency to write off people with dementia.”

Ms. Dowden said she is currently refining the workshop curriculum so that it can be used as a model for other institutions to replicate. She is also expanding it to include mother-daughter and sibling pairs.

She realizes, of course, that a storytelling workshop may not be suitable for every couple. “It’s not good if there’s a lot of behavioral issues, a lot of conflict, and no insight,” she said. “But for those it does fit, it’s an opportunity to tap into the core of relationships, to still grow and learn and be delighted by one another.”

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To Boost Memory: Study, Wait, Then Exercise

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Credit Illustration by Renaud Vigourt

Learning requires more than the acquisition of unfamiliar knowledge; that new information or know-how, if it’s to be more than ephemeral, must be consolidated and securely stored in long-term memory.

Mental repetition is one way to do that, of course. But mounting scientific evidence suggests that what we do physically also plays an important role in this process. Sleep, for instance, reinforces memory. And recent experiments show that when mice and rats jog on running wheels after acquiring a new skill, they learn much better than sedentary rodents do. Exercise seems to increase the production of biochemicals in the body and brain related to mental function.

Researchers at the Donders Institute for Brain, Cognition and Behavior at Radboud University in the Netherlands and the University of Edinburgh have begun to explore this connection. For a study published this month in Current Biology, 72 healthy adult men and women spent about 40 minutes undergoing a standard test of visual and spatial learning. They observed pictures on a computer screen and then were asked to remember their locations.

Afterward, the subjects all watched nature documentaries. Two-thirds of them also exercised: Half were first put through interval training on exercise bicycles for 35 minutes immediately after completing the test; the others did the same workout four hours after the test.

Two days later, everyone returned to the lab and repeated the original computerized test while an M.R.I. machine scanned their brain activity.

Those who exercised four hours after the test recognized and recreated the picture locations most accurately. Their brain activity was subtly different, too, showing a more consistent pattern of neural activity. The study’s authors suggest that their brains might have been functioning more efficiently because they had learned the patterns so fully. But why delaying exercise for four hours was more effective than an immediate workout remains mysterious. By contrast, rodents do better in many experiments if they work out right after learning.

Eelco van Dongen, the study’s lead author and a former researcher at Radboud University (he is now a policy officer at the Netherlands Organization for Scientific Research), hopes that future studies will help determine both the optimal time to exercise and the ideal activity to reinforce learning. Workouts that are too strenuous “could be less positive or even detrimental” to acquiring knowledge, Dr. van Dongen says, while gentle exertions — “a short, slow walk,” he adds — might not prompt enough of an increase in the biochemicals needed to influence how the brain learns.

For now, he says, if you are trying to memorize a PowerPoint narrative or teach yourself macroeconomics, it could be beneficial to exercise a few hours after a study session. “Long-term memory is not only influenced by what happens when you learn new things,” he says, “but also by the processes that take place in the hours and days afterward, when new information is stabilized and integrated in your brain.”

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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.

Photo

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.

Yoga May Be Good for the Brain

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Credit Getty Images

A weekly routine of yoga and meditation may strengthen thinking skills and help to stave off aging-related mental decline, according to a new study of older adults with early signs of memory problems.

Most of us past the age of 40 are aware that our minds and, in particular, memories begin to sputter as the years pass. Familiar names and words no longer spring readily to mind, and car keys acquire the power to teleport into jacket pockets where we could not possibly have left them.

Some weakening in mental function appears to be inevitable as we age. But emerging science suggests that we might be able to slow and mitigate the decline by how we live and, in particular, whether and how we move our bodies. Past studies have found that people who run, weight train, dance, practice tai chi, or regularly garden have a lower risk of developing dementia than people who are not physically active at all.

There also is growing evidence that combining physical activity with meditation might intensify the benefits of both pursuits. In an interesting study that I wrote about recently, for example, people with depression who meditated before they went for a run showed greater improvements in their mood than people who did either of those activities alone.

But many people do not have the physical capacity or taste for running or other similarly vigorous activities.

So for the new study, which was published in April in the Journal of Alzheimer’s Disease, researchers at the University of California, Los Angeles, and other institutions decided to test whether yoga, a relatively mild, meditative activity, could alter people’s brains and fortify their ability to think.

They began by recruiting 29 middle-aged and older adults from the Los Angeles area who told the researchers that they were anxious about the state of their memories and who, during evaluations at the university, were found to have mild cognitive impairment, a mental condition that can be a precursor to eventual dementia.

The volunteers also underwent a sophisticated type of brain scan that tracks how different parts of the brain communicate with one another.

The volunteers then were divided into two groups. One began a well-established brain-training program that involves an hour a week of classroom time and a series of mental exercises designed to bolster their memory that volunteers were asked to practice at home for about 15 minutes a day.

The others took up yoga. For an hour each week, they visited the U.C.L.A. campus to learn Kundalini yoga, which involves breathing exercises and meditation as well as movement and poses. The researchers chose this form of yoga largely because people who are out of shape or new to yoga generally find it easy to complete the classes.

The yoga group also was taught a type of meditation known as Kirtan Kriya that involves repeating a series of sounds — a mantra — while simultaneously “dancing” with repetitive hand movements. They were asked to meditate in this way for 15 minutes every day, so that the total time commitment was equivalent for both groups.

The volunteers practiced their programs for 12 weeks.

Then they returned to the university’s lab for another round of cognitive tests and a second brain scan.

By this time, all of the men and women were able to perform significantly better on most tests of their thinking.

But only those who had practiced yoga and meditation showed improvements in their moods — they scored lower on an assessment of potential depression than those in the brain-training group — and they performed much better on a test of visuospatial memory, a type of remembering that is important for balance, depth perception and the ability to recognize objects and navigate the world.

The brain scans in both groups displayed more communication now between parts of their brains involved in memory and language skills. Those who had practiced yoga, however, also had developed more communication between parts of the brain that control attention, suggesting a greater ability now to focus and multitask.

In effect, yoga and meditation had equaled and then topped the benefits of 12 weeks of brain training.

“We were a bit surprised by the magnitude” of the brain effects, said Dr. Helen Lavretsky, a professor of psychiatry at U.C.L.A. who oversaw the study.

How, physiologically, yoga and meditation had uniquely changed the volunteers’ brains is impossible to know from this study, although reductions in stress hormones and anxiety are likely to play a substantial role, she said. “These were all people worried about the state of their minds,” she pointed out.

Movement also increases the levels of various biochemicals in the muscles and brains that are associated with improved brain health, she said.

Whether other forms of yoga and meditation or either activity on its own might likewise bulk up the brain remains a mystery, she said. But there may be something especially potent, she said, about combining yoga with the type of meditation practiced in this study, during which people were not completely still.

The Alzheimer’s Research and Prevention Foundation, which partially funded this study, provides information on its website about how to start meditating in this style, if you would like to try.

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Walk, Jog or Dance: It’s All Good for the Aging Brain

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Credit Illustration by Sam Island

More people are living longer these days, but the good news comes shadowed by the possible increase in cases of age-related mental decline. By some estimates, the global incidence of dementia will more than triple in the next 35 years. That grim prospect is what makes a study published in March in The Journal of Alzheimer’s Disease so encouraging: It turns out that regular walking, cycling, swimming, dancing and even gardening may substantially reduce the risk of Alzheimer’s.

Exercise has long been linked to better mental capacity in older people. Little research, however, has tracked individuals over years, while also including actual brain scans. So for the new study, researchers at the University of California, Los Angeles, and other institutions analyzed data produced by the Cardiovascular Health Study, begun in 1989, which has evaluated almost 6,000 older men and women. The subjects complete medical and cognitive tests, fill out questionnaires about their lives and physical activities and receive M.R.I. scans of their brains. Looking at 10 years of data from nearly 900 participants who were at least 65 upon entering the study, the researchers first determined who was cognitively impaired, based on their cognitive assessments. Next they estimated the number of calories burned through weekly exercise, based on the participants’ questionnaires.

The scans showed that the top quartile of active individuals proved to have substantially more gray matter, compared with their peers, in those parts of the brain related to memory and higher-­level thinking. More gray matter, which consists mostly of neurons, is generally equated with greater brain health. At the same time, those whose physical activity increased over a five-year period — though these cases were few — showed notable increases in gray-matter volume in those same parts of their brains. And, perhaps most meaningful, people who had more gray matter correlated with physical activity also had 50 percent less risk five years laterof having experienced memory decline or of having developed Alzheimer’s.

“For the purposes of brain health, it looks like it’s a very good idea to stay as physically active as possible,” says Cyrus Raji, a senior radiology resident at U.C.L.A., who led the study. He points out that “physical activity” is an elastic term in this study: It includes walking, jogging and moderate cycling as well as gardening, ballroom dancing and other calorie-burning recreational pursuits. Dr. Raji said he hopes that further research might show whether this caloric expenditure is remodeling the brain, perhaps by reducing inflammation or vascular diseases.

The ideal amount and type of activity for staving off memory loss is unknown, he says, although even the most avid exercisers in this group were generally cycling or dancing only a few times a week. Still, the takeaway is that physical activity might change aging’s arc. “If we want to live a long time but also keep our memories, our basic selves, intact, keep moving,” Dr. Raji says.

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