Thursday, October 25, 2018

"Where did they go?": The faces of Alzheimer's in Northern Nevada

by Kim Burrows & Photojournalist Brad Horn

According to the Centers for Disease Control (CDC), Alzheimer’s disease is an irreversible and progressive kind of dementia that affects an estimated 5.7 million Americans. Here are some startling statistics:
  • It is the sixth leading cause of death among all adults and the fifth leading cause for those aged 65 or older
  • Causes of Alzheimer’s disease and other dementias are not completely understood, but researchers believe they include a combination of genetic, environmental, and lifestyle factors
  • In more than 90% of people with Alzheimer’s, symptoms do not appear until after age 60. The incidence of the disease increases with age and doubles every 5 years beyond age 65
  • Alzheimer’s disease affects mainly older adults, and the growth in the number of older adults is unprecedented. In 2016, 49 million adults living in the United States—15% of the population—were 65 or older. By 2060, that number is expected to climb to about 98 million, or nearly one in four US residents
  • In 2017, total payments for health care, long-term care, and hospice for people with Alzheimer’s and other dementias are estimated to be $259 billion
Alzheimer's robs the brain, steals loved ones from their families, and devastates everyone it touches.
While Alzheimer's is a cruel thief, it does not always steal away life, survival -- or hope.

"It's hard to see what's happening to her."

A doctor gave Shellie Morcom the dismal diagnosis a decade ago when she was only 57 years old. He said she had Frontotemporal Dementia. They suspect she got it in her 40s. Now Shellie, former nurse practitioner, who was known for her ability to take care of others -- now relies on others to take care of her.
Shellie doesn't talk much these days but something interesting happens when Mike sings to her. She will mouth the words and even sing a few of the words. Her husband says he misses hearing her voice.
"We have fun together, we sing together. She doesn't communicate verbally, but she does with her smile and definitely through her eyes," Mike Morcom said. "It breaks my heart, I cry at night. It's hard to see what's happening to her."

Mike knows he is slowly losing his wife to dementia. He just moved her into Brookdale Senior Living, an assisted-living home, so she could get better care and he can sleep easier.
"I don't feel like I'm as stressed as I had been. It's less work for me, but the house is so lonely. It's hard. Nights are always the worst," he said.

Hitting close to home

45,000 Nevadans currently have Alzheimer's and that number is expected to grow to 64,000 by 2025. There's a good chance you probably know someone who has it or you will in your lifetime.
Most people who have dementia or Alzheimer's are typically older.
Cathy Maupin's mom Drusilla passed away at the age of 95. Her mom had the disease for 20 years and spent about a million dollars for her care.
"It's been one of the most heartbreaking things I've ever had to endure. It's broken the hearts of my children to watch their grandmother," Maupin said. "There's a lot of grieving before someone passes away. I said, 'it's death by inches.' It's literally death by inches. I have been living with her dying for a long time. "
But Maupin doesn't focus on how destructive the disease can be, instead she is able to see the brighter side of this dark diagnosis.
"You don't know how many days you really have, and that's why it's really important to live each day fully, joyously, beautifully," she said. "I live more in the moment now, I live a joyous life."

"I kind of feel like they got the wrong guy."

Dick Tatro knew something was wrong. He was doing some odd things.
"I started doing wacky things. I would go the wrong way on the golf course," he said.
A doctor gave him the bleak news: He had Posterior Cortical Atrophy, a variant and rare form of early onset Alzheimer's Disease.
"I kind of feel like they got the wrong guy."
Dick was just 52 years old.
"Anyone who hears the word Alzheimer's thinks of their 90-year-old grandmother who has Alzheimer's. That's not the case. There are many young families who are dealing with it, as well," Mona Tatro, Dick's wife, said. "Every day is a struggle but we're learning. We try to laugh as much as we can."
Dick was the key speaker at the Walk to End Alzheimer's 2015. He wanted everyone to know how tough it's been for him, his wife, and then 9-year-old son. News 4 has followed the Tatro family for the past two years and seen Dick slowly lose his words and slide into the disease.
"I'm so proud of both of them. Mona has just taken over," Dick said. "Charlie is great... I can just feel the love of that kid. He's really awesome."
Dick was unable to hold on to his job. Mona has taken on the role of caregiver and financial provider.
"He left work in October (2014) and never went back, so we lost his income. I lost my husband. I don't really have a partner anymore that helps me with running our house," she said.
Charlie, who is now 12 years old, is slowing losing his dad.
"It's been hard because instead of him taking care of me it feels like I have to take care of him. So I have to grow up really faster," Charlie said.
Physical exercise can lessen the decline in mental function and improve thinking. Dick used to hit the gym at Saint Mary's Fitness Center in Reno several times a week. He loved the social benefits. Exercise can lower the risk of developing Alzheimer's Disease.
"He's the happiest when he's here. So, even if he's done exercising, done showering he just wants to sit in the lobby and just kind of hang out and talk to people," Kellie Flynn who works at Saint Mary's Fitness Center said.
Mona had to move Dick into Stone Valley Alzheimer's Special Care Center on June 1. Unfortunately he just passed away last Saturday, October 21, almost four years to the day after being diagnosed.

Help is out there, but underutilized

Nevada has many resources for those suffering with the disease, but people often don't take advantage of them.
"Nevada is emerging as one of the leading states in terms of addressing the needs of people living with dementia in communities," Dr. Peter Reed, Director of the Sanford Center for Aging on the University of Nevada, Reno campus. "There is a vast network of care and support services around the country and even here in our community but one of the challenges is that people are not aware of those services," Dr. Reed said.
Barbara Singer's mom lived with Alzheimer's in Minnesota. The Carson City resident visited when possible and called often.
"Sometimes it changes her mood, gets her out of the anxiety or doesn't escalate so music works really well with my mom," Singer said.
Singer reached out for information and services to help her along this difficult road.
"In Carson City, there's not enough facilities, not enough care givers, not enough help," she said.
So she ended up starting a support group for caregivers like herself.
Singer's mother passed away this year at the age of 93; but her support groups continue and are more in-demand.
Northern Nevada offers many programs to care for dementia patients, but often families don't utilize them early enough. There are support groups, respite care, adult daycares, and medicines that can slow the progression of Alzheimer's. Unfortunately, most programs are geared toward older adults because that's typically who is diagnosed with the disease.
"We want to help people remain in their homes to maintain their independence and to live well with Alzheimer's disease. It doesn't have to be a tragic end-of-life diagnosis," said Niki Rubarth, the Regional Director of the Alzheimer's Association of Northern California and Northern Nevada.
At Arbors Memory Care in Sparks, they offer Moments of Memory. It's an art program that gives people with dementia an outlet to work on their cognitive skills.
"Call it a right brain-left brain activity; first, you have to be thinking about the image you want to create. And then, the other side of your brain is thinking, 'How am I going to do it? What am I going to do it with?' So, you're not thinking about being depressed or isolated or in pain," Lynette Schweigert, Director of Moments of Memory said.
Daybreak is Washoe County's licensed adult daycare program, a medically-based program supported by full-time nurses. It's licensed for 33 clients and is often full. It keeps its clients working on their cognitive skills and, at the same time, gives families respite care for the day.
We're trying to, at a minimum, maintain their level and hopefully improve their cognitive capacity level of function," Patrick Brumley, Supervisor of Daybreak said.
He says caregivers burn out, and then find Daybreak -- rather than using those services to hold off burnout.

The future of Alzheimer's in Nevada

On the medical front, there are drugs that can slow the progress of Alzheimer's. Dr. Steven L. Phillips, a geriatric doctor said finding a cure in the future may be difficult so prevention is crucial.
"Certain diseases predispose one to Alzheimer's disease. Diabetes, high blood pressure, chronic lung disease, congestive heart failure, previous strokes, obesity... So, in a high inflammatory state....our body releases certain chemicals and those chemicals have shown to affect the brain in a bad way.," Dr. Phillips said.
Research is at the highest level ever. Jacob Harmon, the former Regional Director for the Alzheimer's Association said that translate into something positive.
"The national plan is to address Alzheimer's disease indicated that a national commitment of $2 billion dollars in Alzheimer's funding would be sufficient to meet our goal of having a treatment by the year 2025 and a cure by 2050," Harmon said.
Nevada Senator Catherine Cortez-Masto, whose grandmother died of Alzheimer's, sits on the Senate Committee on Aging. She said, as a country, we need to fight for better brain health. She put together a listening group with leaders from the healthcare community in Northern Nevada. The focus was to close the gaps on Alzheimer's care.
"It includes better educational outreach, making sure everyone in the community is focused on what Alzheimer's is, that it is something that is not curable, but we can sure do a better job helping people live with it and their families live with it," Cortez-Masto said.

What happens now?

Here's an update on all four families News 4 has followed for this special.

Getting more help

The Alzheimer's Association of Northern Nevada and Northern California offers a list of help, support, services and research on its website. You can also make a donation or volunteer. It also offer a 27 hour helpline: 1-800-272-3900.

Tuesday, October 23, 2018

Sandra Day O’Connor announces likely Alzheimer’s diagnosis

Date: 10/23/2018
Associated Press

WASHINGTON (AP) — Sandra Day O’Connor, the first woman on the Supreme Court, announced Tuesday that she has the beginning stages of dementia, “probably Alzheimer’s disease.”
O’Connor made the announcement in a letter. The 88-year-old said her diagnosis was made some time ago and that as her condition has progressed she is “no longer able to participate in public life.”
“While the final chapter of my life with dementia may be trying, nothing has diminished my gratitude and deep appreciation for the countless blessings in my life. How fortunate I feel to be an American and to have been presented with the remarkable opportunities available to the citizens of our country. As a young cowgirl from the Arizona desert, I never could have imagined that one day I would become the first woman justice on the U.S. Supreme Court,” she wrote.
O’Connor was nominated by President Ronald Reagan and took her seat on the court in 1981. She was 75 when she announced her retirement from the court in 2005. It was a decision influenced by the decline in the health of her husband, John O’Connor III, who himself had been diagnosed with Alzheimer’s disease.
O’Connor was a state court judge before being unanimously confirmed to the Supreme Court at 51. She had graduated third in her class from Stanford Law School and was the first woman to lead the Arizona state senate. On the Supreme Court, her votes were key in cases about abortion, affirmative action and campaign finance as well as the Bush v. Gore decision effectively settling the 2000 election in George W. Bush’s favor.
O’Connor’s announcement of her diagnosis came a day after a story by The Associated Press that she had stepped back from public life. Her son Jay O’Connor said in that story that his mother had begun to have challenges with her short term memory. He also said that hip issues have meant she now primarily uses a wheelchair and stays close to her home in Phoenix.

Monday, October 22, 2018

I Was Diagnosed with Alzheimer’s—Here’s How My Life Has Already Changed

I hate to see more people diagnosed with Alzheimer's, but I am happy to see them share there story. They are not alone in this journey. I hope their family also finds peace with this sharing about there personal experience.

By: Lambeth Hochwald 

By Deborah Waskow (as told to Lambeth Hochwald)
Debbie Waskow 
In 2015, Deborah Waskow was diagnosed with Alzheimer’s disease. She was just 59. Now 62, Waskow lives with her husband, Dan, in Bryan, Texas. She serves as an Early Stage Advisor for the Alzheimer’s Association; she helps educate people about the disease. Waskow shares her story:

The diagnosis

Three years ago, I was working as a legal assistant. For a year or longer, my work was beginning to suffer. I finally got to the point where I couldn’t concentrate—one of the early signs that something was wrong. I was forgetting things all the time. One day, I threw the papers on my desk up in the air and told my office manager, “I can’t do this anymore.” Legal work is complicated, and you have to have a good brain to do that work.
Soon after I left my job, I talked to my primary care doctor about my family’s history of Alzheimer’s; my father and grandfather had it and my mom is currently living with the disease. I was sent to another doctor who performed cognitive tests and a PET scan. The tests confirmed it: I have early-onset Alzheimer’s disease.

Needless to say, my life has changed. My husband retired soon after my diagnosis, so we spend a lot of time together. I write on my blog on Facebook. Instead of going to work, I spend my days having lunch with my friends and visiting my mother who lives an hour’s drive away. I was able to drive to see her up until recently, when I’ve gotten lost a couple of times. The situation wasn’t terrible, but I’d gotten turned around enough that it scared me. I don’t drive out of town anymore. I stay in town and I can do things like drive to the grocery store and back. I’m okay with that.
One way my life has really changed is that I no longer bake. I used to love making cakes, pies, and cookies, but I had to stop because I kept forgetting the ingredients. My husband even went and bought different measuring cups and he told me to put flour in one cup and sugar in another, but it’s hard to follow the recipes—even ones I’ve made for years.I am a very independent person. I spent time as a single mother to my son after my first marriage broke up (and before I met Dan). I loved my self-reliance, but now I have to give up some of that independence. I’m okay with letting my husband take care of things like chores and paying bills. We mostly do the grocery shopping together now because I forget the list. 

Planning for the future

Right now, Dan and I are enjoying life while we can. You hear about people saving money for trips years down the road. We’re not waiting; we take a trip every year. We went on an amazing train trip to Alaska last year. We recently did a fall colors trip to Boston and Maine. I’m not scared. We’re just taking it one day at a time. What makes me sad is my husband’s sorrow. I hate to think of his future without me. But I kind of know what’s coming: I’ve seen my dad, grandfather, and mom go through this, and I know what to expect. Dan says he wants to take care of me as long as he can, but I’ve already told him I don’t want him to do that for too long. I told him I will go to a facility. That’s the one thing about Alzheimer’s. You have time to prepare. The one thing I wish I could change is people’s reaction when I tell them I have Alzheimer’s. They shut down. I can still talk; it’s not like all of a sudden I can’t remember anything. This happened with my dad. He was a college professor, he was very social, and he had lots of friends. When he got Alzheimer’s and had to retire, his friends wouldn’t come to visit him. I think people get scared. Instead, they should learn more about Alzheimer’s and realize that people with the disease can still socialize. We need to make the most of life for as long as we can.

Wednesday, August 15, 2018

What does it feel like to have Alzheimer's? Virtual reality programs may help you find out

What an interesting article. I am happy to read about programs that are helping those who to not have Alzheimer's, begin to understand this journey of those who do have this awful disease. 

Chicago Tribune

After experiencing the world as a woman with Alzheimer’s disease, Ana Lebron took off her virtual reality headset and began to cry.
She couldn’t pinpoint which part of the experience left her in tears. After all, she works with Alzheimer’s patients every day as an activities coordinator at assisted living facility Hartwell Place in Andersonville.
But when she put on that headset and tried to navigate a virtual grocery store, the lights were overpowering, and the food labels were fuzzy. When people spoke to her, their words were distorted. Her virtual family members shot her frustrated glances before they understood why she kept forgetting holidays, faces and how to cook.
“This brings it home even more,” Lebron, said of the experience.
With 5.7 million Americans living with Alzheimer’s, care facilities and schools are continuously searching for ways to better train caregivers. In recent years, some schools and facilities have turned to a new approach: virtual reality. By putting on a headset, caregivers and others can experience life through the eyes and ears of an individual with Alzheimer’s, even hearing that person’s thoughts.
Leaders of Chicago Methodist Senior Services, which includes Hartwell Place, hope to train all their workers with a program from Los Angeles-based Embodied Labs.
The program includes several different characters going through various scenarios.
On a recent day, new Hartwell employees took turns sitting before a laptop and donning the headsets to experience life as Beatriz, a fictional math teacher in her 60s advancing through the stages of Alzheimer’s. By wearing the headsets, the workers could look around Beatriz’s world, hear sounds as she would and hear Beatriz’s thoughts. They could even move Beatriz’s hands by moving their own, thanks to a camera on the headset.

In the early stages of Alzheimer’s, Beatriz sat at a park with her grown daughter but grew paranoid when she thought her daughter had taken her purse. In a middle stage of the disease, she sat in her living room, but a roar filled the air and the shadow of a man jerked violently against the wall. She cried out for help. The roar turned out to be the noise from a fan, and the menacing shadow disappeared once her daughter opened the windows, letting light fill the room.
“You are there and you are observing this and you have a deep sense of feeling of what’s happening,” said Dr. Neelum Aggarwal of the Rush Alzheimer’s Disease Center. Aggarwal worked with Embodied Labs, as an advisor, to develop Beatriz and the scenarios she goes through. “We know when there’s an emotional connection to something, that whole experience is enhanced and virtual reality seems to be able to do this.”
Rush is now piloting the Embodied Labs program with 60 Rush medical, pharmacy and nursing students, Aggarwal said. Students’ levels of empathy and bias, and beliefs about aging will be measured before and after participating in the virtual reality modules, and they’ll discuss their impressions together.
Aagarwal, however, said the program could also potentially help family caregivers.

“Caregivers of people with dementia often ask me, ‘What is she feeling? I don’t know what it’s like,’” Aggarwal said. “My hope is we not only focus on providers and students that will become future physicians but let’s also use this with the caregivers to help them.”
Chicago Methodist also offers the program to patients’ family members, said CEO Bill Lowe, whose own mother lives at Hartwell.
Embodied Labs CEO Carrie Shaw developed the prototype of the program as a graduate student at the University of Illinois Chicago in 2015 and 2016, inspired by her mother who had early onset Alzheimer’s. She said the program has trained more than 2,000 caregivers across 50 organizations in 14 states and four countries. The company charges about $2,000 for the headset and other equipment and a monthly subscription fee of about $250 to $600 for the virtual reality experiences, depending on the size of the organization.
Other organizations are also working to help caregivers experience – and not just learn about – their Alzheimer’s patients’ conditions.
Georgia-based nonprofit Second Wind Dreams created a “virtual dementia tour” in 2001, in which participants wear special glasses, gloves and headphones, among other things, to simulate the experience of having dementia. Northwestern Medicine’s Mesulam Cognitive Neurology and Alzheimer’s Disease Center has had a “Buddy Program” since 1997, a program that pairs medical students with people with early-stage dementia.
And Dementia Australia, like Embodied Labs, offers a virtual reality program that lets users step into the world of a person with dementia.
Such virtual reality programs are yet one more way to help caregivers better understand their patients, said Beth Kallmyer, Alzheimer’s Association vice president for care and support. She said there’s a real need for additional training for caregivers for people with dementia and Alzheimer’s.
“It is a very, very stressful situation for the caregiver, psychologically, emotionally, financially, physically,” Kallmyer said. “What we know is when caregivers are prepared in advance for what’s going to occur they’re going to be better able to handle it.”
Lebron, the activities coordinator at Hartwell, said she’s not sure if the virtual reality experience will make her do her job any differently. She said she’s always tried to approach patients with empathy and cheer -- though the experience was still eye-opening.
But Ann Brennan, director of volunteer services for Chicago Methodist, said she had a better understanding, after the virtual reality program, of why patients sometimes become aggressive, angry or isolated.
“We’ve read, we’ve had classroom studies, we observe, but to actually immerse yourself in it and be that person has been remarkable,” Brennan said. “When you see people take off that oculus, oftentimes there’s a big sigh like, ‘Oh my gosh, I’m so glad I can step out of Beatriz’s shoes.’”