Tagged Dementia

‘Tsunami’ Of Alzheimer’s Cases Among Latinos Raises Concerns Over Costs, Caregiving

SACRAMENTO, Calif. — Florence Marquez liked to describe herself as a cannery worker, even though she was best known in her heavily Latino East San Jose neighborhood as a community activist.

She strode alongside Cesar Chavez in the farmworker movement during the 1960s and 70s. She helped build affordable housing for poor families near her local church.

But eight years ago, Florence, now 86, couldn’t find her way to the house she had lived in for 50 years. “That’s when we knew she needed 24-hour care,” said her oldest daughter, Barbara Marquez, 61.

Florence was diagnosed with Alzheimer’s disease, which robbed her of her memory and her fierce independence. Across the United States, stories like hers are becoming more common, particularly among Latinos — the fastest growing minority in the country.

With no cure in sight, the number of U.S. Latinos with Alzheimer’s is expected rise by more than eight times by 2060, to 3.5 million, according to a report by the USC Edward R. Roybal Institute on Aging and the Latinos Against Alzheimer’s network.

Advanced age is the leading risk factor for Alzheimer’s disease and the likelihood of developing Alzheimer’s doubles about every five years after age 65. As a group, Latinos are at least 50 percent more likely than whites to have Alzheimer’s, in part because they tend to live longer, the report notes.

Barbara Marquez visits her mother Florence Marquez at her nursing home on Friday, December 16, 2016. Barbara was her mother’s primary caregiver until the family decided to put their mother in a 24-hour care facility. (Heidi de Marco/KHN)

Barbara Marquez visits her mother Florence Marquez at her nursing home, Sagebrook Senior Living, in Carmichael, Calif., in December 2016. Barbara was her mother’s primary caregiver until the family decided to put their mother in a 24-hour care facility. (Heidi de Marco/KHN)

“This is an incoming tsunami,” said Dr. William Vega, one of the report’s authors and the Roybal Institute’s executive director. “If we don’t find breakthrough medication, we are going to be facing a terrible financial crisis.”

That tidal wave of Alzheimer’s cases is prompting some tough conversations in Latino families, who often pride themselves on caring for elders at home, rather than placing them in nursing homes.

Those talks come with a lot of guilt, Barbara said. Until recently, Barbara was her mother’s primary caregiver. Her sister and brother helped out.

“But it was more than I could have anticipated,” Barbara said, recalling sleepless nights as she tried to make sure Florence didn’t get up and wander off. “It impacts your health, it impacts your marriage. So we looked for help.”

About 1.8 million Latino families nationwide care for someone with Alzheimer’s and other types of dementia. And while the Roybal report shows that Latino families are less likely than whites to use formal care services, such as nursing home care, institutionalized care is becoming more common among these families.

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Between 1999 and 2008, the number of elderly Latinos living in U.S. nursing homes grew by about 55 percent, a rate that outpaced the growth of the overall Latino population during that time, according to research published in July 2011 in Health Affairs.

That can be costly. Nationwide, the average cost for basic services in an assisted living facility is $43,200 per year, according to the Alzheimer’s Association. Yearly nursing home care now averages more than twice that, at slightly more than $92,000.

For many Latino families, getting outside help isn’t an option. It’s often too expensive for seniors who aren’t eligible for Medi-Cal, California’s version of the Medicaid program for low-income people, which generally pays for nursing home care. Immigrants who are in the country unlawfully do not qualify for it, nor do people whose incomes are too high.

Florence’s children decided to take their mother out of her house in San Jose, and they brought her to live with her daughter Barbara in Fair Oaks, just outside Sacramento. They sold the San Jose house, thinking it would help pay for institutionalized care should their mom need it down the road.

She did not qualify for Medi-Cal, so she lived with Barbara for about three years. But after trying out a senior day care program outside of the house at a cost of about $78 a day, Barbara and her family placed Florence in a senior home in the Sacramento suburb of Carmichael, where she has been living for the past year.

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Dwindling Resources

The decision to institutionalize Florence Marquez left her children feeling both guilty and overwhelmed by the steep expense. Her care now costs $3,000 to $4,000 per month, they said. They pay extra for specialized services.

They had the proceeds from the sale of Florence’s house, “but those resources are dwindling,” Barbara said. “What do we do when that money is gone?”

Marquez, 85, was diagnosed with Alzheimer’s disease eight years ago. She lived in the same house for 50 years, but one day she couldn’t find her way back home. (Heidi de Marco/KHN)

Florence Marquez, 85, was diagnosed with Alzheimer’s disease eight years ago. She lived in the same house for 50 years, but one day she couldn’t find her way back home. (Heidi de Marco/KHN)

The Roybal study estimates that the cumulative economic impact of Alzheimer’s among Latinos will hit $2.35 trillion by 2060. That figure includes the costs of medical and long-term care, as well as the lost earnings of family members who provide unpaid in-home care, and of the Alzheimer’s victims themselves, according to the study.

Gustavo Lopez of Chicago cares for his mother, Agustina Lopez, 76, who was diagnosed with Alzheimer’s disease seven years ago.

Gustavo, 48, and his four siblings looked into assisted living but couldn’t afford it. Agustina, after moving between her children’s homes, eventually landed with Gustavo, her youngest.

When Gustavo first took on the role of primary caregiver, his mother still did most things on her own, he said. But she now relies on him to help her eat, bathe, dress and take her medication.

So Gustavo needs a job with flexible hours. He’s worked mostly as a waiter. Other employment opportunities have come his way, some with better pay, but caring for his mother comes first, he said.

Asking For Help

Gustavo does get some help from family friends who check in on his mom while he is at work. He also found Casa Cultural in Chicago, a social service agency that offers a day program for seniors. He can drop his mom off at the center for a few hours, giving him a respite.

Free or low-cost programs like these are available in many communities, but families need to do research and ask for help, said Constantina Mizis, president of the Chicago-based Latino Alzheimer’s and Memory Disorders Alliance.

The alliance, formed in 2009, focuses on family members who are primary caregivers. Mizis said she has met many caregivers who are near their breaking point. The nonprofit offers training for them, helps find resources to boost their own well-being and puts on community events for families.

When seeking support, the best place to start is at a local community group or center — a church, a nonprofit, a United Way office, or the local Alzheimer’s Association chapter, for example, Mizis said. These groups will most likely refer caregivers to a county’s Agency on Aging or a state’s Department of Aging.

There, families are assigned a social worker who can discuss what benefits are available. If an Alzheimer’s patient qualifies for Medicaid, these benefits could include caregiver training and payment through programs such as California’s In-Home Supportive Services. But benefits and eligibility vary by state.

In 2010, the Social Security Administration recognized early-onset Alzheimer’s as a medical condition eligible for disability income. That could help people whose Alzheimer’s disease is diagnosed before the age of 65, but many Latino families aren’t aware the program exists, Mizis said.

A Push For Awareness

Because Latinos are more likely to use informal and more affordable care options, the Roybal report calls for improving training and resources for families in both English and Spanish.

Among the caregivers who opt to keep a parent with Alzheimer’s at home is Julia Garcia, of Houston, Texas. She rotates with her three daughters to watch her mother, Marcela Barberena, 85, who was diagnosed with the disease last year.

Julia, who had been unfamiliar with Alzheimer’s, initially thought her mother’s forgetfulness and childlike behavior was due to age.

“Too often people will see Alzheimer’s as a result of old age, but this brain-deteriorating disease is not natural,” said Vega, co-author of the report.

Julia Garcia said she realized it was something more serious when her mother took a shuttle bus from Houston’s international airport without knowing her destination.

“We had agreed I’d pick her up, but she left on her own,” Julia said. “She ended up downtown. It was the scariest moment of my life.”

As a new caregiver, Julia reached out to her local Alzheimer’s Association chapter for information. While some resources are available in Spanish in the Houston chapter, Julia noticed very few Latinos attending the informational workshops or classes.

Barbara Marquez takes her mother, Florence Marquez, on a walk on Friday, December 16, 2016. (Heidi de Marco/KHN)

Barbara Marquez takes her mother, Florence Marquez, on a walk. (Heidi de Marco/KHN)

Spanish-language media provided little information about the disease. “You rarely hear anything about it on TV or the radio,” she said.

In addition, many Latinos, including the Marquez, Lopez and Garcia families, are often unaware of clinical trials through which families can gain access to experimental therapies and medications at little or no cost.

Latinos are underrepresented in clinical trials sponsored by the National Institutes of Health: They account for 17 percent of the U.S. population but only 7.5 percent of participants at the 32 NIH-funded Alzheimer’s research centers across the country, according to the Roybal study.

Latino volunteers for these trials are important in helping researchers develop Alzheimer’s treatments that work for all ethnic groups, the report says.

“This is why it is so important to invest in the education of these communities,” Mizis said.

Her group helps train promotoras, or community health educators, in regions with large Latino communities — including San Francisco, Los Angeles, Baltimore and New York. Going door-to-door, promotoras educate families about the disease.

“I see firsthand everyday how much help our communities need,” Mizis said. “And this need keeps growing.”

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

Categories: Aging, California Healthline, Mental Health, Public Health, Syndicate

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El “tsunami” de casos de Alzheimer entre latinos plantea inquietudes sobre el cuidado y los costos

SACRAMENTO, Calif. — A Florence Márquez le gustaba describirse a ella misma como una trabajadora de fábrica de conservas, a pesar que era conocida en su latinísimo vecindario del este de San José como una activista comunitaria.

Ella caminó junto a César Chávez en el movimiento de trabajadores agrícolas durante los años 60 y 70. Ayudó a construir viviendas asequibles para familias pobres cerca de su iglesia local.

Pero hace ocho años, Florence, ahora de 86, no pudo encontrar su camino a la casa en la que había vivido durante 50 años. “Fue cuando supimos que necesitaba atención las 24 horas”, dijo su hija mayor, Barbara Márquez, de 61 años.

Florence fue diagnosticada con la enfermedad de Alzheimer, que le robó su memoria y su feroz independencia. A lo largo de los Estados Unidos, historias como Florence Márquez se están convirtiendo en más comunes, particularmente entre los latinos, la minoría de más rápido crecimiento en el país.

Sin una cura a la vista, se espera que el número de latinos con Alzheimer aumente más de ocho veces para 2060, a 3.5 millones, según un informe del Edward R. Roybal Institute on Aging de la Universidad del Sur de California (USC) y de la red Latinos Against Alzheimer.

La edad avanzada es el principal factor de riesgo para la enfermedad de Alzheimer y la posibilidad de desarrollar el mal se duplica cada cinco años después de los 65. Los latinos son al menos 50% más propensos que los blancos no hispanos a tener Alzheimer, en parte porque viven vidas más largas, destaca el informe.

Barbara Marquez visits her mother Florence Marquez at her nursing home on Friday, December 16, 2016. Barbara was her mother’s primary caregiver until the family decided to put their mother in a 24-hour care facility. (Heidi de Marco/KHN)

Barbara Marquez, de 61 años, visita a su madre, Florence Marquez, de 85, en el hogar Sagebrook Senior Living, en Carmichael, Calif., el viernes 16 de diciembre de 2016. (Heidi de Marco/KHN)

“Este es un tsunami en marcha”, dijo el doctor William Vega, uno de los autores del informe y director ejecutivo del Roybal Institute. “Si no encontramos medicamentos innovadores, vamos a enfrentar una terrible crisis financiera”.

Esa marea de casos de Alzheimer está provocando algunas conversaciones difíciles en las familias latinas, que a menudo se enorgullecen de cuidar a sus ancianos en casa, en lugar de ponerlos en hogares para adultos mayores.

Esas charlas se presentan con mucha culpa, dijo Barbara Márquez. Hasta hace poco, Barbara era la principal cuidadora de su madre. Su hermana y su hermano ayudaban.

“Pero fue más de lo que yo podría haber previsto”, dijo Barbara, recordando las noches sin dormir mientras intentaba asegurarse de que Florence no se levantara y escapara. “Afecta tu salud, tu matrimonio. Así que buscamos ayuda”.

Alrededor de 1,8 millones de familias latinas en todo el país cuidan a alguien con Alzheimer y otros tipos de demencia, y mientras que el informe de la USC muestra que las familias latinas tienen menos probabilidades que los blancos no hispanos de usar servicios de atención formales, como un hogar, el cuidado institucionalizado se está convirtiendo en una opción más popular entre estas familias.

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Entre 1999 y 2008, el número de latinos seniors que vivían en hogares aumentó un 55%, una tasa que superó el crecimiento de la población latina en general durante ese período de tiempo, según una investigación publicada en julio de 2011 en Health Affairs.

A nivel nacional, el costo promedio de los servicios básicos en un centro de asistencia es de $43,200 al año, según la Asociación de Alzheimer. Los cuidados anuales en hogares de ancianos son, en promedio, unos $92,000, más del doble.

Para muchas familias latinas, obtener ayuda externa no es ni siquiera una opción. A menudo es demasiado costoso para las personas mayores que no son elegibles para el Medi-Cal, la versión de California del Medicaid para personas de bajos ingresos, que generalmente paga por el cuidado de enfermería en hogares de ancianos. Los inmigrantes que están en el país ilegalmente no califican, ni tampoco las personas cuyos ingresos son demasiado altos.

Después de probar un programa de cuidado de ancianos fuera de la casa a unos $78 al día, Barbara y su familia pusieron a Florence en una residencia para ancianos de la zona de Sacramento, donde ha estado viviendo durante el último año.

 Recursos en baja

La decisión de institucionalizar a Florence Márquez dejó a sus hijos no sólo sintiéndose culpables, sino también con una economía tambaleante por los elevados gastos. El cuidado de su mamá ahora cuesta de $3,000 a $4,000 por mes, dijeron. Pagan extra por servicios especializados.

Florence actualmente no califica para el Medi-Cal, por lo que la familia Márquez vendió la casa de su madre en San José para pagar por su atención. “Pero esos recursos están disminuyendo”, dijo Barbara. “¿Qué vamos a hacer cuando se acabe el dinero?”.

El informe de la USC estima que el impacto económico acumulado de la enfermedad de Alzheimer entre los latinos llegará a $ 2,35 mil billones en 2060. Esta cifra incluye los costos de atención médica y de largo plazo, así como la pérdida de ingresos de los miembros de la familia, y de las propias víctimas del Alzheimer, según el estudio.

Gustavo López, de Chicago, se preocupa por su madre, Agustina López, de 76 años, diagnosticada con la enfermedad de Alzheimer hace siete años.

Gustavo, de 48 años, y sus cuatro hermanos buscaron un centro de asistencia, pero no pudieron solventarlo. Agustina, después de vivir en las casas de todos sus hijos, eventualmente se quedó con Gustavo, el más joven.

Marquez, 85, was diagnosed with Alzheimer’s disease eight years ago. She lived in the same house for 50 years, but one day she couldn’t find her way back home. (Heidi de Marco/KHN)

Florence Marquez, de 85, fue diagnosticada con Alzheimer hace 8 años. Marquez vivió en la misma casa por 50 años, pero un día no pudo encontrar el camino a su hogar. (Heidi de Marco/KHN)

Cuando Gustavo asumió por primera vez el papel de cuidador principal, su madre todavía hacía la mayoría de las cosas por su cuenta, dijo. Pero ahora depende de él para comer, bañarse, vestirse y tomar su medicación.

Así que Gustavo necesita un empleo con horario flexible. Ha estado trabajando principalmente como camarero. Han aparecido otras oportunidades de empleo, algunos con mejor salario, pero el cuidado de su madre está primero, dijo.

 Pidiendo ayuda

Gustavo recibe ayuda de amigos de la familia que vigilan a su madre mientras está en el trabajo. También encontró Casa Cultural en Chicago, una agencia de servicios sociales que ofrece un programa de día para personas mayores. Puede dejar a su mamá en el centro por unas horas, lo que le da un respiro.

Programas gratuitos o de bajo costo como éstos están disponibles en muchas comunidades, pero las familias necesitan investigar y pedir ayuda, dijo Constantina Mizis, presidenta de la Latino Alzheimer’s and Memory Disorders Alliance, con sede en Chicago.

La alianza, formada en 2009, se centra en los miembros de la familia que son los principales cuidadores. Mizis dijo que ha conocido a muchos cuidadores que están al borde de quebrarse. La organización sin fines de lucro les ofrece capacitación, ayuda para encontrar recursos para impulsar su propio bienestar, y participación en eventos comunitarios para las familias.

Al buscar apoyo, el mejor lugar para comenzar es en un grupo o centro comunitario local: una iglesia, una organización sin fines de lucro, una oficina de United Way o el capítulo local de la Asociación de Alzheimer, por ejemplo, dijo Mizis. Es probable que estos grupos refieran a los cuidadores a la Agencia de Envejecimiento del condado o al Departamento de Envejecimiento del estado.

Allí, se les asigna a las familias un trabajador social que puede discutir qué beneficios están disponibles. Si un paciente de Alzheimer califica para Medicaid [Medi-Cal en California], estos beneficios podrían incluir capacitación para cuidadores y pago a través de programas de “efectivo y consejería”. Los Servicios de Apoyo en el Hogar de California es uno de esos programas. Sin embargo, los beneficios y la elegibilidad varían según el estado.

En 2010, la Administración del Seguro Social reconoció al Alzheimer de inicio temprano como una condición médica elegible para los ingresos por discapacidad. Eso podría ayudar a las personas cuya enfermedad de Alzheimer se diagnostica antes de los 65 años, pero muchas familias latinas no son conscientes de esto, dijo Mizis.

Un impulso para la concientización

Debido a que los latinos son más propensos a usar opciones de atención informales y más asequibles, el informe de la USC pide mejorar la capacitación y los recursos para las familias, tanto en inglés como en español.

Entre los cuidadores que optan por mantener a un padre con Alzheimer en casa está Julia García, de Houston, Texas. Ella se rota con sus tres hijas adolescentes y adultas para cuidar a su madre, Marcela Barberena, de 85 años, quien fue diagnosticada con la enfermedad el año pasado.

Julia, que no estaba familiarizada con el Alzheimer, pensó que el olvido y el comportamiento infantil de su madre se debían a la edad.

“Demasiado a menudo la gente ve al Alzheimer como resultado de la vejez, pero la enfermedad que deteriora el cerebro no es natural”, dijo Vega, coautor del informe de la USC.

Barbara visits her mother almost every weekend. Her mother's care now costs $3,000 to $4,000 per month, says Barbara. (Heidi de Marco/KHN)

Barbara Marquez saca a pasear a su madre, Florence Marquez, el viernes 16 de diciembre de 2016. (Heidi de Marco/KHN)

Julia García dijo que se dio cuenta de que era algo más serio cuando su madre tomó un micro desde el aeropuerto internacional de Houston sin saber su destino.

“Habíamos acordado que la recogería, pero ella se fue por su cuenta”, dijo Julia. “Terminó en el centro de la ciudad. Fue el momento más espantoso de mi vida”.

Como nueva cuidadora, Julia se acercó a la sede local de la Asociación de Alzheimer para obtener información. Aunque algunos recursos están disponibles en español en el capítulo de Houston, Julia notó que muy pocos latinos asistían a los talleres informativos o a las clases.

Lo mismo ocurre con los medios en español, que proporcionan poca información sobre la enfermedad. “Rara vez se oye nada en la televisión o en la radio”, dijo.

Muchos latinos, incluyendo las familias de Márquez, López y García, no saben sobre los ensayos clínicos y cómo pueden ayudar a sus seres queridos.

Los latinos están subrepresentados en los ensayos clínicos patrocinados por los Institutos Nacionales de Salud: representan el 17 por ciento de la población de los Estados Unidos, pero sólo el 7,5 por ciento de los participantes en los 32 centros de investigación de Alzheimer financiados por los INS en todo el país, según el informe de Roybal.

Los voluntarios latinos son importantes para ayudar a los investigadores a desarrollar tratamientos para el Alzheimer que funcionen para todos los grupos étnicos, según el informe de USC.

“Por eso es tan importante invertir en la educación de estas comunidades”, dijo Mizis.

Su grupo ayuda a entrenar promotoras o educadores comunitarios de salud en regiones con grandes comunidades latinas, incluyendo San Francisco, Los Ángeles, Baltimore y Nueva York. Al ir de puerta en puerta, las promotoras educan a las familias sobre la enfermedad.

“Veo de primera mano cuánto necesitan ayuda nuestras comunidades”, dijo Mizis. “Y esta necesidad sigue creciendo”.

Esta historia fue producida por Kaiser Health News, que publica California Healthline, un servicio editorial independiente de la California Health Care Foundation.

Categories: Aging, Mental Health, Noticias En Español, Public Health, Syndicate

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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.

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.”