Tagged Dementia

Support Circle: Family Caregivers Share Stories And Tips To Ease Alzheimer’s Toll

Vicki Bartholomew started a support group for wives who are caring for a husband with Alzheimer’s disease because she needed that sort of group herself.

They meet every month in a conference room at a new memory-care facility in Nashville called Abe’s Garden, where Bartholomew’s husband was one of the first residents — a Vietnam veteran and prominent attorney in Nashville.

“My husband’s still living, and now I’m in an even more difficult situation — I’m married, but I’m a widow,” she tells the group one day.

These women draw the shades and open up to each other in ways they can’t with their lifelong friends.

Vicki Bartholomew’s husband, Sam, has been at Abe’s Garden in West Nashville since it opened in 2015.(Credit courtesy Vicki Bartholomew)

“They’re still wonderful friends, but they didn’t know how to handle this. It was hard for them, and as you all know, your friends don’t come around as much as they used to,” Bartholomew said. “I was in bad shape. I didn’t think I was — I did have health problems, and [now] I know I was depressed.”

As the number of Americans afflicted with Alzheimer’s disease continues to swell to an estimated 5.7 million, so do the legions of loved ones caring for friends and family members. The toll on Bartholomew’s own mental health is one of the reasons the Alzheimer’s Foundation of America focuses on the nation’s estimated 16 million unpaid caregivers.

With no cure on the horizon, the foundation has been highlighting the necessity of better support for those caregivers through a national tour. It stopped in Nashville earlier this spring, was in Milwaukee in June and heads to Fairfax, Va., in September.

At the live events, Alzheimer’s researchers and clinicians offer guidance on a number of topics, including how to ensure safety for patients at home, care planning and even how to entertain someone with memory loss.

The organization promotes in-person and telephone support groups, since being a caregiver is often a barrier to getting out of the house alone. Virtual support systems showed effectiveness at reducing loneliness, stress and depression in a small 2014 study.

“We have to do everything we can to educate a caregiver, to provide them with the best practices on caring for somebody,” said Charles Fuschillo Jr., the AFA’s CEO.

For example, the AFA recommends that family members:

  • Feed Alzheimer’s patients one food at a time. “A busy plate can be confusing,” the group says.
  • Mark rooms in the house with signs to avoid unnecessary confusion.
  • Remind a person with Alzheimer’s to use the toilet; don’t wait for them to ask.
  • When traveling, stick with familiar destinations.
  • Watch for a cough while eating; it can signal a swallowing disorder in people with dementia.
  • Schedule overnight stays at a memory-care facility so the caregiver gets some respite.

Just as important, Fuschillo said, “we want to do everything we can to avoid caregiver burnout.”

The breaking point sneaks up on even the most committed caregiver, say Alzheimer’s advocates, especially as the nights grow more sleepless. Alzheimer’s patients can tend to pace, or wake up their partner every few minutes. They can become violent. Or, perhaps worse, they can leave the house.

“And I’ve had some issues at night that I had to take care of alone,” Pam Hawkins, who cares for her husband with Alzheimer’s, said during a support session. “But I’m not ready to have anyone there at night.”

For now, she said, her husband usually sleeps all night. And if there’s a problem, her son-in-law is 15 minutes away.

She’s had to hire caregivers during the day. Knowing how to find and hire the right person is a shared concern by Alzheimer’s family members that inspired a checklist for navigating the process. Tips include these: Interview the aide in the home. Over-share information about the patient. Ask what kind of quality control a supervisor would provide.

Hawkins is adamant about keeping her husband at home, whatever the cost.

“He’s not going anywhere,” she said. “He’s staying at our home until he moves to heaven. We made that decision a long time ago.”

But many caregivers have no choice.

April Simpkins said tending to her husband became all-consuming, and she’s young enough that she still needs to keep her job; she works at a local university.

“It was not possible for us to keep Joe at home,” she said.

Simpkins found she’d often have to call her husband’s siblings to settle him down over the phone. One night, she had to dial 911 when he kept yelling in the hallways of their condo building.

And yet she felt some societal pressure that she wasn’t doing enough.

“There’s a lot of … glory given to the whole idea of someone being long-suffering and staying at home and giving up their life, basically, to care for their loved one,” Simpkins said. “It makes it harder for people who can’t do that.”

Everyone around the table nodded in agreement. Whatever stage of illness their loved one is experiencing, these caregivers understand the complicated existence that many have dubbed “the long goodbye.”

April and Joe Simpkins at Abe’s Garden, the Nashville memory-care facility where Joe moved as his Alzheimer’s advanced.(Blake Farmer/WPLN)

Along with sharing the sorrow, they find a way to share in the humor of it all — one woman said her husband wears a laundry-basket’s-worth of shirts and pants because he forgets he’s already gotten dressed. Even tips on how to reduce the odor from incontinence are offered with a loving laugh.

The support group ends with hugs. Some women head for the parking lot. Others buzz through the locked doors to see their husbands.

Simpkins sits down for lunch with Joe, who is a former state employee and a youthful-looking 66 years old. She drapes an arm around his slumping shoulders and assists him as he spears a cold strawberry with his fork.

“You know, there are some days,” she said, interrupted by a random reflection from Joe. “Yeah, some days are clearer than others.”

Simpkins tries to stop by to see her husband every day. But it’s a wicked kind of blessing, she said, that when she misses a visit, Joe no longer notices.

This story is part of a partnership that includes Nashville Public Radio, NPR and Kaiser Health News.


KHN’s coverage of these topics is supported by
John A. Hartford Foundation
and
The SCAN Foundation

Support Circle: Family Caregivers Share Stories And Tips To Ease Alzheimer’s Toll

Vicki Bartholomew started a support group for wives who are caring for a husband with Alzheimer’s disease because she needed that sort of group herself.

They meet every month in a conference room at a new memory-care facility in Nashville called Abe’s Garden, where Bartholomew’s husband was one of the first residents — a Vietnam veteran and prominent attorney in Nashville.

“My husband’s still living, and now I’m in an even more difficult situation — I’m married, but I’m a widow,” she tells the group one day.

These women draw the shades and open up to each other in ways they can’t with their lifelong friends.

Vicki Bartholomew’s husband, Sam, has been at Abe’s Garden in West Nashville since it opened in 2015.(Credit courtesy Vicki Bartholomew)

“They’re still wonderful friends, but they didn’t know how to handle this. It was hard for them, and as you all know, your friends don’t come around as much as they used to,” Bartholomew said. “I was in bad shape. I didn’t think I was — I did have health problems, and [now] I know I was depressed.”

As the number of Americans afflicted with Alzheimer’s disease continues to swell to an estimated 5.7 million, so do the legions of loved ones caring for friends and family members. The toll on Bartholomew’s own mental health is one of the reasons the Alzheimer’s Foundation of America focuses on the nation’s estimated 16 million unpaid caregivers.

With no cure on the horizon, the foundation has been highlighting the necessity of better support for those caregivers through a national tour. It stopped in Nashville earlier this spring, was in Milwaukee in June and heads to Fairfax, Va., in September.

At the live events, Alzheimer’s researchers and clinicians offer guidance on a number of topics, including how to ensure safety for patients at home, care planning and even how to entertain someone with memory loss.

The organization promotes in-person and telephone support groups, since being a caregiver is often a barrier to getting out of the house alone. Virtual support systems showed effectiveness at reducing loneliness, stress and depression in a small 2014 study.

“We have to do everything we can to educate a caregiver, to provide them with the best practices on caring for somebody,” said Charles Fuschillo Jr., the AFA’s CEO.

For example, the AFA recommends that family members:

  • Feed Alzheimer’s patients one food at a time. “A busy plate can be confusing,” the group says.
  • Mark rooms in the house with signs to avoid unnecessary confusion.
  • Remind a person with Alzheimer’s to use the toilet; don’t wait for them to ask.
  • When traveling, stick with familiar destinations.
  • Watch for a cough while eating; it can signal a swallowing disorder in people with dementia.
  • Schedule overnight stays at a memory-care facility so the caregiver gets some respite.

Just as important, Fuschillo said, “we want to do everything we can to avoid caregiver burnout.”

The breaking point sneaks up on even the most committed caregiver, say Alzheimer’s advocates, especially as the nights grow more sleepless. Alzheimer’s patients can tend to pace, or wake up their partner every few minutes. They can become violent. Or, perhaps worse, they can leave the house.

“And I’ve had some issues at night that I had to take care of alone,” Pam Hawkins, who cares for her husband with Alzheimer’s, said during a support session. “But I’m not ready to have anyone there at night.”

For now, she said, her husband usually sleeps all night. And if there’s a problem, her son-in-law is 15 minutes away.

She’s had to hire caregivers during the day. Knowing how to find and hire the right person is a shared concern by Alzheimer’s family members that inspired a checklist for navigating the process. Tips include these: Interview the aide in the home. Over-share information about the patient. Ask what kind of quality control a supervisor would provide.

Hawkins is adamant about keeping her husband at home, whatever the cost.

“He’s not going anywhere,” she said. “He’s staying at our home until he moves to heaven. We made that decision a long time ago.”

But many caregivers have no choice.

April Simpkins said tending to her husband became all-consuming, and she’s young enough that she still needs to keep her job; she works at a local university.

“It was not possible for us to keep Joe at home,” she said.

Simpkins found she’d often have to call her husband’s siblings to settle him down over the phone. One night, she had to dial 911 when he kept yelling in the hallways of their condo building.

And yet she felt some societal pressure that she wasn’t doing enough.

“There’s a lot of … glory given to the whole idea of someone being long-suffering and staying at home and giving up their life, basically, to care for their loved one,” Simpkins said. “It makes it harder for people who can’t do that.”

Everyone around the table nodded in agreement. Whatever stage of illness their loved one is experiencing, these caregivers understand the complicated existence that many have dubbed “the long goodbye.”

April and Joe Simpkins at Abe’s Garden, the Nashville memory-care facility where Joe moved as his Alzheimer’s advanced.(Blake Farmer/WPLN)

Along with sharing the sorrow, they find a way to share in the humor of it all — one woman said her husband wears a laundry-basket’s-worth of shirts and pants because he forgets he’s already gotten dressed. Even tips on how to reduce the odor from incontinence are offered with a loving laugh.

The support group ends with hugs. Some women head for the parking lot. Others buzz through the locked doors to see their husbands.

Simpkins sits down for lunch with Joe, who is a former state employee and a youthful-looking 66 years old. She drapes an arm around his slumping shoulders and assists him as he spears a cold strawberry with his fork.

“You know, there are some days,” she said, interrupted by a random reflection from Joe. “Yeah, some days are clearer than others.”

Simpkins tries to stop by to see her husband every day. But it’s a wicked kind of blessing, she said, that when she misses a visit, Joe no longer notices.

This story is part of a partnership that includes Nashville Public Radio, NPR and Kaiser Health News.


KHN’s coverage of these topics is supported by
John A. Hartford Foundation
and
The SCAN Foundation

Alzheimer’s Disease as an Adventure in Wonderland

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

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.”

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 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.

Photo

<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

Photo

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

Photo

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.”