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ON SATURDAY NOVEMBER 9th, 2013, RAYMOND W. HOLMAN JR., WAS AT CALUMET PHOTOGRAPHIC MANHATTAN LOCATION NEW YORK CITY.  THE ADDRESS:  20 WEST 22nd STREET FROM 11:00AM UNIT 5:00PM CAPTURING IMAGES OF “FAMILY CAREGIVERS OF PEOPLE WITH ALZHEIMER’S-DEMENTIA FOR HIS BOOK/MOTION PROJECT. FOR MORE INFORMATION PLEASE CALL 215-205-7414. OR E-MAIL RAYMOND @ holmanjr@voiceinet.com.

38 Comments

  1. It is with great pleasure that I write this letter of support for an artist for whom I have a tremendous degree of respect. Like many of us , who are faced with the challenges of ever- changing situations, Raymond Holman, an outstanding and conscientious photographer, turned a major challenge in his own life into a project that inspired a community of like-minded strangers.The common thread that united the group was that they were all caregivers to either siblings, friends, partners or parents. in Raymond’s case, it was his father ,who in the last few years of life suffered from the ravages of Alzheimer’s disease and dementia, As a result of his dad’s condition, Raymond put his professional pursuits on hold to provide his father all the love, care and kindness he could.It was an experience that led Raymond to discover that he was not alone in his dedication to a loved one. Being the consummate professional that he is,he turned what seemed to some a disaster, into a most enriching experience.
    In the Spring of 2008, as Curator of Exhibits, I was pleased to have the opportunity to present “Caregivers” : Portraits and Stories,Photographs by Raymond Holman Jr.,a collective of 53 bold portraits of proud and dynamic individuals who, like Raymond, had stories to tell.And,that they did, as the opening reception was graced with a majority of those from the region, who shared their emotional memories with pride.The participants were of divergent cultures and ethnic backgrounds.From the responses to the installation, it became evident that this was an exhibit that touched everyone.It is as relevant today as ever. It is my opinion that the substance of such an exhibition will have long lasting affects upon any audience in any community that views it.I speak from truth when I say that the photography is brilliant, and the collective of the narrative commentaries constitutes a winning combination for a memorable and impacting exhibition.I encourage you to engage this project and Raymond Holman into your exhibition season.Great art and good health will always lead to stimulating discussion!

    Sincerely,
    Richard J. Watson,Exhibitions Curator
    The African American Museum in Philadelphia

  2. An Eye for Caring
    Tuesday, 04 June 2013 15:18 | Written by Sheila Simmons | Print

    Local photographer captures spirit of caregivers

    Photo Left: Raymond W. Holman Jr. is a photographer who specializes in portraits of caregivers. Sarah J. Glover/Photographer

    With any luck, the people whom Raymond W. Holman Jr. photographs will begin to see themselves again.

    So consumed are they by the bathing, feeding and financial and medical needs of another, they—much like the mental condition of the person for whom they’re caring—fade.

    Caregivers can “forget who they are,” Holman explains from his West Philadelphia home decorated with black-and-white and colored photographs that document his award-winning, decades-long career in photography.

    In 2008, Holman embarked on “Portraits of Family Caregivers” for people with dementia—culminating with 58 portraits displayed at the African American Museum in Philadelphia. But five years later, the issue of caring still haunts, perplexes, fascinates and inspires him. So now, with support from Calumet Photographic, Holman is at work on a book and documentary film on the subject.

    Seven portraits will be featured at the Alzheimer’s Foundation of America’s conference in New York on June 26. Then in July, Holman will photograph more caregivers at Calumet’s New York City location and then at its studios across the country.

    “I want to capture a look at the spirits of these people,” he says. “I want this book to serve as witness to our ability to care.”

    Holman posts some portraits on his blog (https://1raymondwholmansr.wordpress.com)—people who look proud, determined, sweet, nurturing, exhausted. Subject “Jacquelyn” (he uses only first names) wrote with her photo: “Many people think that taking care of my parents is an extraordinary thing. But I am an ordinary person.”

    “Matt” recalled that his mother “was a great, interested conversationalist.” Now “she struggles to hold a conversation, because after a few words, she cannot remember what she was going to say. . . There are just some songs I cannot listen to when I’m with her, without crying, and that’s OK,” he wrote.

    Holman carries such stories not just on his blog, but also in his head. He rattles off statistics, such as: Alzheimer’s is the sixth-leading cause of death in the United States, and 40 percent of caregivers die before their loved one.

    This photographic journey began when Holman’s father couldn’t remember the way to his daughter’s house. Over the next four and a half years Holman cared for his father, hiring two caregivers for him, before his father died in 2001.

    He said, “Before Daddy got sick, I was really focused on my own self. When Daddy got sick, I started focusing on Daddy. When Daddy died, I got lost.”

    Then an assignment for WHYY to photograph a man suffering from frontotemporal dementia drew Holman’s interest to the man’s wife, who herself took 14 pills a day for her Type-2 diabetes and fibromyalgia and who used a pace maker.

    More recently, at a Wawa store he encountered a woman who asked him to help her find her way back home. “I keep meeting people, so it seems my purpose, as far as my photography right now, is to bring about awareness about people with dementia and the people who care for them,” he said.

    Related Articles:

    Alzheimer’s Disease and Dementia by Raymond W. Holman Jr.

    https://1raymondwholmansr.wordpress.com/

    Raymond W. Holman Jr. Alzheimer’s Caregivers Project

    http://raymondwholmanjralzheimerscaregivers.blogspot.com/

    An article written by Shelia Simmons on my caregivers project.

  3. CAPTURING AND PRESERVING MEMORIES: PORTRAITS OF ALZHEIMER FAMILY CAREGIVERS BY RAYMOND HOLMAN JR.
    July 9, 2013 · in Articles, Calumet News, Interviews
    As Wendy L. Campell, President & CEO of the Delaware Valley Chapter of the Alzheimer’s Association put it, “Calumet Photographic is in the business of capturing and preserving memories; the Alzheimer’s Association is also in the memory business.” That’s why Calumet Photographic Philadelphia is spearheading the Caregiver Project by Raymond Holman Jr., hoping that we can turn it into a nationwide project.

    Calumet Photographic Philadelphia became involved in the project by donating the use of their classroom and rental equipment to use for portrait sessions, and donating a purple Nikon camera (the organization’s signature color) as an auction prize. A reporter from the Daily News sat in on the session and was so intrigued, that he stayed for three hours interviewing the caregivers for an upcoming story. Calumet’s sponsorship helped build credibility for Raymond’s project and also established a relationship with the Alzheimer’s Association.

    We had the chance to speak with Raymond about how the project is going, how he has been personally affected by Alzheimer’s-dementia and how people can reserve a spot in his upcoming caregiver photography shoot at our Calumet New York location.

    This is DaVeeda, who at the age of 20 became a family caregiver with her cousin Racquel who was 19 at the time. They were sole caregivers for their grandmother.
    How instrumental was Calumet Philadelphia and Gregg McIlhenny in moving your project into its second phase?

    Gregg was very instrumental in helping me. He quickly agreed to make the Philadelphia store available, and he contacted Calumet management regarding the use of the Manhattan location. On June 25, 2013 I captured portraits of family caregivers of people with Alzheimer’s-dementia. We ran overtime on that day, and Gregg was willing to keep the store open until we were done. I really appreciate his and Calumet Photographic’s willingness to support this project.

    Moving forward with the project, what are your goals?

    My intention for this project is to travel the country capturing portraits in every part of the United States, and hope to have major exhibits in museums and large galleries around the world as the project grows. I hope this will bring attention to the uniqueness of family caregivers and their willingness to help others in great need of assistance. My intention is to have a book published and produce a short motion documentary on family caregivers. I am looking for all forms of media, and financial (whether it be via grants, corporate or individual) support moving forward.

    I had no idea until about a year ago of the magnitude of this disease. There is a misunderstanding that Alzheimer’s-dementia is an old-person disease, however they are discovering early symptoms in people in their late 20’s. And, there is no cure for it according to the medical field. I find that scary!

    Also, when my father, “Big Ray,” was dealing with Alzheimer’s-dementia, I thought it was just about him not remembering names and faces and stuff like that. But what I have learned recently is that it can be a terrifying experience for the person affected by the different forms of Alzheimer’s-dementia.

    However, my real focus is on the caregiver. This world would be really difficult without their existence. They are great warriors. Many family caregivers have died before the person they were taking care of.

    This is Matt, who is his mother’s caregiver.
    You will be at our New York store on Saturday, July 13 photographing caregivers. How can people sign up for sittings and what are the times that you will be photographing?

    By e-mail holmanjr@voicenet.com or by calling 215-205-7414. Although I encourage walk-ins on July 13, 2013, I would like people to contact me ahead of time so I have an idea how many people I can expect. My main desire is that the families of patients with caregivers come. I believe it is very important they connect with each other and share their stories.

    Aside from this project, tell us a little bit about what your normal photographic work involves.

    My background is in photojournalism. It was a hobby until I started working for the Philadelphia Inquirer and the Philadelphia Daily newspapers in 1989. I shoot editorial assignments, corporate annual reports, environmental portraits and wedding photography. I have a very special interest in wedding photography because it denotes a time in two people’s lives when love is very present.

    To learn more about Raymond Holman Jr.’s project or how you can become involved you can stop by his blog (www.1raymondwholmansr.wordpress.com), call @ 215-205-7414, or e-mail him at holmanjr@voicenet.com.

    And, don’t miss these other great interviews on the Caregiver Project from Liberty City Press http://www.libertycitypress.net/people-article/387-an-eye-for-caring.html and this newscast from a local Philadelphia Fox News channel:

    No related posts.

    Tags: Alzheimers, Awareness, Caregivers, New York, Philadelphia, Photo Journalism, Photography Project, Portraits
    One Response
    Chris Leavitt July 10, 2013 at 5:38 pm · Reply →
    Thank you Calumet for the excellent article. Please follow up as the effort continues. Let the pro photographer community know how we can help with this and other efforts.

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  4. Honoring his father by honoring Alzheimer’s caregivers DN Philadelphia bases photographer Raymond Holman Jr. at his home along the 5200 block of Westminster St. near 52nd has been working on a project documenting the caregivers of family members and friends suffering from Alzheimers. His father Raymond Holman Sr. in photograph suffered from Alzheimers. This photograph was taken on Tuesday morning June 11, 2013. ( ALEJANDRO A. ALVAREZ / STAFF PHOTOGRAPHER ) GALLERY: Honoring his father by honoring Alzheimer’s caregivers » DAN GERINGER POSTED: Sunday, June 16, 2013, 3:01 AM HIS FATHER stood 6-4, weighed 250 and was respected throughout his West Philadelphia neighborhood as a strong man, so Raymond Holman Jr. was startled when his dad phoned to say that a female stranger had come into his home and robbed him. “My father’s friends called him ‘Big Ray’ and his friends were big guys,” Holman said. “Everybody in the neighborhood knew daddy. I mean everybody. So it was really a shock that someone would have the nerve to come into daddy’s house like that and steal from him.” But that shock back in 1997 was mild compared to what would follow. When Holman arrived at his father’s house on Race Street near 50th, he learned that a woman had come to the door, asking if she could have something to drink. MORE COVERAGE Residents worry elevated train track accident waiting to happen Girard students join rally against proposed cuts Big Ray went into the kitchen to get her a drink, then remembered that he’d left his wallet out on the coffee table. When he returned to the living room, the woman and the money in his wallet were gone. “I called the police,” Holman said, “and they told us it was probably a drug addict and she would probably be back because she had found a soft spot.” Holman and his father talked about not opening the door to strangers. But a few weeks later, Holman’s father phoned to say that the same woman had come back. She pushed her way in when he opened the door, wrestled him to the floor and robbed him again. “As he told me that story, I knew there was something wrong with my father,” Holman said softly. “And I knew that I couldn’t leave him by himself ever again.” Holman’s mother had died when he was young, so his father had been the mainstay of the family for decades. But now, Big Ray was experiencing the early stages of Alzheimer’s disease, a form of dementia that within three years would leave him helpless and profoundly change his son’s life. Through an aunt’s church, Holman found two women to care for his father in shifts during the week. And as Holman, a professional photographer, documented his father’s final years in black-and-white portraits, he was deeply moved by their loving care. On evenings and weekends, Holman, his brother and his sister also helped to care for Big Ray. “One day, in the last year of his life, I went over to daddy’s house to see how he was doing,” Holman said. “I never remember daddy and I touching at all as I was growing up. I needed to touch daddy. So I reached out my hand and shook his hand and said, ‘How you doing today?’ This became a habit every time I saw him. “And I never remember daddy and I saying we loved each other,” Holman said. “One day, I thought, this is stupid. I said, ‘Daddy, I love you.’ He looks up at me. He’s very surprised. These types of things were coming out of me because daddy was sick like that.” Daughters rescue dad Big Ray died in 2001. A few years later, Holman was on a WHYY-TV assignment in Wilmington, documenting Florence Collins Hardy taking care of her husband, Russell, who suffered from frontotemporal dementia, when he realized that the incredible sacrifices made by loving caregivers in the service of dementia victims was largely an untold story. He’s been telling that story in photographs and videos ever since, from a 2008 exhibit of his caregivers photographs at the African American Museum to the current photo-and-interview sessions he does with caregivers at Calumet Photographic in Pennsport, working toward a hoped-for exhibit at a Philadelphia gallery. At a recent session, sisters Patricia Holland and Lisa Salley talked about caring for their father, Franklin Bradley Salley, who suffered from Lewy body dementia for 18 years before he died in December at 74. “My dad got kicked out of five adult day-cares,” Salley said, sharing a knowing smile with her sister. “They all wanted him to sit still and look out the windows.” Salley said that after serving in the Navy, her dad was a Philadelphia police officer for 33 years and, as one of the first African-Americans on the force, spent many of those years as a civil-rights advocate within the department. So even during his dementia-driven decline, he wasn’t a man who was willing to sit and look out windows. “My dad was never a frail old man,” Holland said. “It took two people to hold him and another one to wash him,” Salley said. One day, she said, her father awoke from a post-shower nap very agitated. “He said, ‘Three little black boys attacked me! They tore my clothes off and threw hot water on me!’ ” The two sisters laughed. “Three little black boys,” Salley said. “Me and my sister and a female aide.” Although taking care of their father for years was stressful, Holland said they were guided by what he had taught them – “Do what’s right at all times” – and by what their mother, who had cared for her husband until her death, had taught them – “Do what’s in your heart to do.” “Our family history is: You take care of your loved ones,” Holland said. “You don’t get a rule book or on-the-job training. You just do it.” Salley said, “Remember the mirrors?” Holland nodded, smiling. “When dad got older and his dementia got worse, he would look in a mirror and say, ‘Who is that man? That ain’t me.’ He didn’t recognize himself. There were a lot of mirrors in his house. He was chasing himself in the mirrors all day, going, ‘That ain’t me.’ It worried him.” Salley got covers for all the mirrors that blended with the décor, so her dad never noticed the change and forgot about the mirrors. “I’m an engineer,” Salley deadpanned. “This is where it came in handy.” Love without limits Five years ago, cousins DaVeeda Clark and Racquel Braham, both 21, had just moved to Columbus, Ohio, ready to go to college, when Clark got a call from her grandmother, Mildred Munden, who had worked as a teacher’s aide for 35 years and had raised her since early childhood. “She was in tears,” Clark said. “She said, ‘I haven’t eaten in two days. I’m locked out of my house. I don’t know where I am.’ ” Clark quickly called a neighbor, who said Munden was standing in front of her own house, wearing her house keys on a chain around her neck. Clark and Braham put their education on hold and rushed home to care for Munden. They found bags of rotting broccoli all over the kitchen, canned goods in the refrigerator and shoes in the microwave. The next day, her grandmother accused Clark of stealing pennies off the dresser. “I realized we had a serious problem,” Clark said. After Munden suffered two strokes, she was unable to speak and unable to walk. For three years, Clark and Braham sacrificed sleep and their personal lives to function as a total-care tag team – feeding Munden, bathing her, dressing her, taking turns rotating her position in her bed every three hours around the clock so she wouldn’t get sores, and telling her they loved her over and over again. Clark shampooed her grandmother’s long hair, rinsed it with warm water and braided it in cornrows-all of which Munden clearly enjoyed, showing her pleasure with smiles because she no longer could speak. Once, while Munden was comatose in her hospital bed after a stroke, Clark played her grandmother’s favorite song, Whitney Houston’s “I Wanna Dance with Somebody” and was delighted when Munden started moving a foot to the music. No one in Munden’s family had graduated college so, even when the strokes and her dementia debilitated her, she fervently wanted to see her granddaughter graduate from Community College of Philadelphia with a degree in elementary education. Munden was near the end of her life when Clark burst into her room in May 2012. “When I came in with my cap and gown, and showed granny my degree, she burst into tears,” Clark said. “She passed away two months later.” It has taken Clark a while to deal emotionally with her grandmother’s death, as it has taken Holman years to deal with his father’s passing. “Sometimes family caregivers fall so deeply into the habits you develop when you’re caring for a loved one that when that person passes away, you have to figure out who you are again,” Holman said. “A psychiatrist once told me that I got lost after my father died. This caretakers project is bringing focus to my life. It just keeps me pushing forward.” Honoring his father Years after his father’s death, Holman still feels the need to help someone whom he thinks is experiencing dementia. Recently, he was parked at a convenience store in Lower Northeast Philadelphia about 5 p.m. when a woman walked over and asked him for directions to City Avenue in Bala Cynwyd. Something about the woman’s vague manner compelled Holman to offer to drive to Bala and lead her home. When they arrived at her apartment building, the woman invited him up to meet her husband. “I felt a little strange,” Holman said. “Her husband looks at me. He looks at his wife. I can see in his eyes that he’s thinking, ‘What in the world is this dude doing with my wife?’ He says to her, ‘Where have you been? You’ve been gone all day.’ “Turns out, she was on her way to a supermarket in Bala, just a few blocks away, and she got lost and ended up in the Lower Northeast.” Her husband had called the police and reported her missing. Although the police questioned Holman and the situation at the apartment was uncomfortable, he is glad that he sensed the woman’s distress and led her home. “I’m just following my conscience,” Holman said. “I’m a guy trying to pay attention to people. That’s why I’m still working on this project and probably will be for the rest of my life.” Twitter: @DanGeringer
    Read more at http://www.philly.com/philly/news/20130616_Honoring_his_father_by_honoring_Alzheimer_s_caregivers.html#rcdWjkT4qbkbZ5w8.99

  5. Media Release
    Immediate Release Contact: Raymond W. Holman Jr.
    RAYMOND W. HOLMAN JR. PHOTOGRAPHY 215-205-7414 holmanjr@voicenet.com>
    Photographer Gathering Portraits of Alzheimer’s Caregivers as part of Documentary Project
    One could be sitting right next to you or maybe you just got off the phone with one. It is almost impossible to recognize them because there is nothing about them that indicates the tremendous day-to-day challenges these caregivers face. But in 2012 alone, 15.4 million of these family members and friends provided 17.5 billion hours of unpaid care to those with Alzheimer’s and other dementias — care valued at $216.4 billion, which is more than eight times the total sales of McDonald’s in 2011. Eighty percent of care provided in the community is provided by unpaid caregivers.
    On Saturday October 26, 2013 from 1:30 p.m. until 5:00 p.m. award winning photographer Raymond W. Holman Jr. will be taking portraits of these caregivers as part of a book project aimed at heightening the public’s awareness of Alzheimer’s, the sixth leading cause of death in the United States. The location CALUMET PHOTOGRAPHIC PHILADELPHIA, 1400 South Christopher Columbus Blvd. (Reed Street and Columbus Blvd.) Philadelphia, Pa. Call Raymond W Holman Jr. @ 215-205-7414 for more information and to make an appointment. This is a free event.
    “My aim with this book is to provide not just the faces of caregivers, but I want to capture a look at the spirits of these people, whose lives have been consumed by the caring for others,” said Holman. “I’m not talking about glamourizing this hard, almost sacred work. But I do want to document it in this book. I want this book to serve as witness to our ability to care.”
    And if you are a caregiver and want your portrait taken for possible inclusion in Holman’s book project, stop by CALUMET PHOTOGRAPHIC MANHATTAN, 20 West 22nd Street New York, NY. On Saturday November 9th, 2013 from 11:00 a.m. until 5:00 p.m. or call Raymond W. Holman Jr @ 215-205-7414 for more information and to make an appointment. This is a free event.
    All participants will be asked to sign a model release. Follow on WORDPRESS @ http://www.1raymondwholmansr.wordpress.com/about and http://www.1raymondwholmansr.wordpress.com Please forward this information to friends and family members of people with memory loss disease.

  6. A+AA-
    Photographer shows toll of Alzheimer’s with exhibit
    Written by Ayana Jones Tuesday, 14 January 2014 18:23 font size Print

    Tigist Hailu, coordinator for diversity in research, Penn Memory Center gestures toward a photo of Raymond Holman Sr. The photo is a part of the “Portrait of Alzheimer’s Caregivers” exhibit being displayed at the Perelman Center for Advanced Medicine.— ABDUL SULAYMAN/TRIBUNE CHIEF PHOTOGRAPHER
    A local photographer is shedding light on how Alzheimer’s disease impacts family caregivers.
    Raymond Holman Jr., is exhibiting his “Portraits of Alzheimer’s Caregivers” at the Perelman Center for Advanced Medicine, 34th Street and Civic Center Blvd.
    The exhibit, which is on display through Feb. 5, features more than 20 portraits of people who were dedicated to caring for those with Alzheimer’s and other related dementias. Holman’s project was inspired by his father, Raymond Holman Sr. who died from Alzheimer’s in 2001.
    Holman hopes people who view the exhibit to come away with an understanding of the uniqueness of caregivers and the challenges that many of them face.
    “I think family caregivers are just very unique beings. Family caregivers of people with Alzheimer’s are unusual,” said Holman, an award winning photographer whose work has been featured in the Philadelphia Daily News and Philadelphia Inquirer.
    Holman’s exhibit was brought to the Perelman Center by the Penn Memory Center. The Penn Memory Center is where individuals can come for evaluation and treatment for systems of age related memory loss. The center also offers patients and their families the opportunity to participate in research studies including the evaluation of new treatments for Alzheimer’s disease, new diagnostic techniques and quality of life studies.
    Officials from Penn Memory Center were spurred to bring Holman’s exhibit to Penn after reading about his work in a local newspaper.
    “I’m really honored that Mr. Holman let us show it. We heard about his work from coverage on it in other media and were deeply intrigued because it’s great art that is very relevant to our mission, which is making sense of Alzheimer’s disease, dementia and related disorders,” said Dr. Jason Karlawish, associate director, Penn Memory Center.
    “We are particularly impressed and excited that he focused on people who are often under represented and underappreciated in the world of Alzheimer’s disease and dementia– namely individuals of African American ancestry and in particular people who are working and living in a caregiving roll.”
    Holman’s exhibit is open to the public. His work is being exhibited at a time when more than five million people living with Alzheimer’s disease according to the Alzheimer’s Foundation of America.
    Alzheimer’s disease is the most common form of dementia. Dementia is caused by various diseases and conditions that result in damaged brain cells and is characterized by the loss of a decline in memory and other cognitive abilities.
    His father’s illness changed Holman’s life. Before his father got sick, Holman was solely focused on his photography career.
    “When my father got sick it really redirected my career,” Holman recalled.
    “You have no training as a family caregiver. This thing comes on all of a sudden and you have no training with how to deal with it. You are so focused in on the person that you are taking care or that you lose track of what you are trying to do with your own life.”
    While caregivers often get caught up in caring for their loved one, Holman said it’s important that they don’t neglect their own well-being.
    Before Holman’s father was diagnosed with Alzheimer’s in 1997, he didn’t really understand what was happening and he equated his memory loss to general aging.
    “I didn’t know what was going on at first. I just thought that Daddy was getting older,” Holman admitted.
    The elder Holman, who was known as “Big Ray” was a longtime, well-respected resident of West Philadelphia who had worked as elevator operator and a security guard.
    Holman said he first realized something was going on with his father when he had been robbed twice by a neighborhood junkie. Then there was the time when his father was supposed to attend a barbecue at his daughter’s house in Germantown but never showed up because he couldn’t remember how to get there. Then he started forgetting to pay his bills.
    Holman says it’s important to raise awareness of Alzheimer’s in the African-American community.
    “It seems to come out of the blue and a lot of times we don’t know about the disease. Often times it’s so hard to identify,” he said.
    The Alzheimer’s Association notes that African Americans are at a higher risk for the disease that whites. African-Americans have a higher rate of vascular disease (diseases involving blood vessels, including heart attack and stroke) – one of the suspected risk factors of Alzheimer’s disease.
    According to the Alzheimer’s Association there are 10 warning signs for Alzheimer’s and age-related dementia including memory loss that disrupt daily life; challenging in planning or solving problems; difficulty completing familiar tasks at home, work or leisure; confusion with time or place; trouble understanding visual images; decreased or poor judgment; withdrawal from work or social activities and changes in mood or personality.
    Holman held his first exhibit in 2008 at the African American Museum in Philadelphia where he showcased 58 portraits. The Alzheimer’s Association of Delaware Valley and WHYY were instrumental in helping him locate family caregivers for his project.
    Holman is searching for more family caregivers who are willing to be photographed for his project. He has 95 portraits in his collection and has set a goal of having at least 200 by the end of 2014. He also needs funding to bring the exhibit to more venues and museums.
    “I just want to keep moving forward,” he added.
    Holman was prompted to launch the portrait project when he assigned to shoot still photographs for WHYY’s Circle of Love series featuring first-person accounts of the struggles and joys of family caregivers.
    While working with WHYY, he photographed Delaware resident, Florence Collins and her husband Russell suffered from frontotemporal dementia. When Holman witnessed the love and devotion that Florence displayed in caring for her husband, he decided to do portraits of family caregivers. Her devotion reminded him of the two women who cared for his father.
    “I just thought it was a beautiful situation — the way she was taking care of this man,” said Holman.
    “After a while, I decided to focus on family caregivers because I just thought it was a rarity to see that.”
    As Russell’s caregiver, Florence Collins Hardy had to cope with understanding how the disease impacted her husband. Russell was an auto painter and Sunday school teacher. He was diagnosed with frontal temporal dementia at the age of 58 and died in 2005. Collins Hardy said her family provided a much needed support system.
    When he was first diagnosed, Russell was walking and driving but as his disease progressed he became more dependent and eventually stopped talking.
    Collins Hardy said being a family caregiver is very challenging.
    “The challenge is trying to understand what is going on. You don’t know how to identify something you have no experience with, with this person that you love so much. You are supporting a person that you don’t understand,” said Collins Hardy, who is now remarried.
    “It’s hard. When I see people going through that with their family member all those memories come flooding back and I talk to them and I encourage them to keep up the fight for the loved one and be the advocate for them because they can’t speak for themselves.”
    “There are many organizations, including the government, where it is very difficult to get them to recognize that the caregivers are the ones who are affected almost more than the person who actually has the illness,” she added.
    ^
    Contact staff writer Ayana Jones at (215) 893-5747 or ajones@phillytrib.com.

  7. “Portraits of Alzheimer’s Caregivers” a photography exhibition

    In honor of national Alzheimer’s Disease Awareness Month and National Caregiver Month, the Penn Memory Center is featuring a photography exhibit displayed at the Center entitled “Portraits of Alzheimer’s Caregivers” by Raymond W. Holman, Jr.

    Mr. Holman is an award-winning photographer whose photographs have been featured in the Philadelphia Inquirer and Philadelphia Daily News, and exhibited at the African American Museum in Philadelphia.

    Inspired by his own father’s death in 2001 from the disease, Raymond has photographed more than 80 people who have dedicated themselves to caring for others. Twenty seven of these portraits are being exhibited through February 28, 2014 at the Perelman Center for Advanced Medicine at the University of Pennsylvania.

    The exhibit is supported by the Penn Memory Center and the University of Pennsylvania Health System.

  8. Search for:

    Penn Memory Center & Holman Photography Exhibit Featured in the Philadelphia Tribune

    Holman Photography Exhibit Featured in the Philadelphia Tribune
    January 14, 2014

    By admin

    The January 14, 2014 issue of the Philadelphia Tribune features a story on Raymond W. Holman, Jr.’s “Portraits of Alzheimer’s Caregivers” exhibit on display at the Perelman Center for Advanced Medicine through February. Reporter Ayana Jones interviewed Dr. Jason Karlawish, Associate Director of the Penn Memory Center, about the exhibit.

    “We heard about (Mr. Holman’s) work from coverage in other media,” Dr. Karlawish said. “We were deeply intrigued because it’s great art that is very relevant to our mission, which is making sense of Alzheimer’s disease, dementia and related disorders,” he added. “We are particularly impressed and excited that he focused on people who are often underrepresented and underappreciated in the world of Alzheimer’s disease and dementia – namely individuals of African American ancestry and people who are working and living in a caregiving role.”

    Read the full article in the Philadelphia Tribune here.

    © 2014 Penn Memory Center

  9. Penn Memory Center > Uncategorized > How Brain Scans Might Change the Way Doctors Diagnose Alzheimer’s

    How Brain Scans Might Change the Way Doctors Diagnose Alzheimer’s
    December 4, 2013

    Jason Karlawish, M.D., Associate Director of the Penn Memory Center, is quoted in the December 10, 2013 issue of Scientific American. The article, How Brain Scans Might Change the Way Doctors Diagnose Alzheimer’s, discusses the development over the past 10 years of sophisticated brain scans that can estimate the amount of plaque in the brain, and an upcoming clinical trial that will investigate whether giving an experimental drug as soon as the scans detect the formation of plaques can slow or halt the development of Alzheimer’s. That trial, the A4 Study, aims to screen 3,000 healthy senior citizens to identify 1,000 amyloid-positive individuals who will receive either a drug therapy for Alzheimer’s called solanezumab or a placebo for three years. The Penn Memory Center is one of the 60 sites where the study will take place.

    © 2014 Penn Memory Center

  10. In Honor of Big Ray

    “I know that (family caregivers) can get lost in their role,”
    Raymond says. “I always talk to people to make sure
    that they are not so absorbed that they forget about their
    own self. Caregivers are overwhelmed, and they can feel
    unsupported. “

    Big Ray, as Holman’s father was known, first began showing
    signs of Alzheimer’s disease dementia in 1997.

    “At first I didn’t pick up on the signs,” Raymond says.

    Raymond described how his father got
    lost driving to his daughter’s house. How
    his telephone was shut off after forgetting
    to pay his bill. And how, one day, he
    let a stranger into his house, and was
    subsequently wrestled to the ground and
    robbed. “After that I knew something was very wrong.”

    Big Ray “was fortunate because he had beautiful caregivers”
    who were with him through the end, said his son.
    Caregivers May and Joan worked with Big Ray for four
    years before he died in his home.

    “This project is about faith,” Raymond Jr. says, “and
    bringing focus to this disease,” and to those in the shadows
    of caregiving.

    Photographer Raymond W. Holman, Jr.

    documents Alzheimer’s disease caregivers

    by Barbara Overholser

    aymond W. Holman Jr. documents those
    sometimes forgotten figures in the battle against
    Alzheimer’s disease dementia. Young and old,
    men and women – caregivers are often on the frontlines of
    the daily undertaking to ensure dignity for those suffering
    from dementia.

    Inspired by his own
    father’s death in 2001 from
    the disease, Raymond
    has photographed more
    than 80 people who have
    dedicated themselves to caring for others. 27 of these
    portraits are being exhibited through February 2014 at the
    Perelman Center for Advanced Medicine at the University
    of Pennsylvania.

    Raymond first picked up a camera almost 40 years ago
    when he wanted to photograph the gifts around his
    Christmas tree. But it took another decade for him to
    seriously pursue photography as a career. He then moved
    from a job in banking to freelance photography for the
    Philadelphia Inquirer and Daily News.

    Since 2007 he has photographed caregivers across
    the Delaware Valley. In 2008 a series of his portraits
    were exhibited at the African American Museum in
    Philadelphia.

    R

    “This project is about faith.”


    Raymond W. Holman, Jr.

    Raymond W. Holman,
    Jr. began his career as
    a photographer for the
    Philadelphia Inquirer
    and Daily News.

    His work has been
    displayed at the African
    American Museum
    in Philadelphia, the
    Brooklyn Museum of
    Art, and the Noyes
    Museum.

    Images of Raymond W. Holman, Sr. (“Big Ray”) are
    exhibited at the Perelman Center for Advanced Medicine
    along with images of Alzheimer’s caregivers.

    Big Ray died of Alzheimer’s disease in 2001.

    INSIGHT newsletter of the penn memory center fall 2013 page 4

    Raymond W. Holman, Jr.

    “Portraits of Alzheimer’s Caregivers” –

    November 21, 2013 – February 2014 at the Perelman Center for Advanced Medicine

    a photography exhibition

    “My mother “Lady Bird” developed
    Alzheimer’s disease over ten years
    ago. I returned from Europe in

    order to care for her. My life
    changed from that moment. “

    — Pat

    Pat returned from Europe to care for her

    ailing mother.

    Photo credit: Raymond W. Holman, Jr.

    More than 85 guests enjoyed a catered reception at
    the exhibit’s opening event. L to R: Sandy Lawrence,
    Philadelphia Corporation for Aging Interfaith Outreach
    Coordinator; photographer Raymond W. Holman, Jr.,
    Marsha Moss, Public Art Curator and Consultant to the
    University of Pennsylvania Health System.

    Tigist Hailu (L), PMC’s Coordinator for Diversity in
    Research and organizer of the exhibition, speaks with a
    guest and PMC’s Marianne Watson, R.N., at the reception
    for Raymond W. Holman, Jr.’s photographs.

    The photography exhbit will be on display through
    February 2014.

  11. Hello Raymond,

    I finally got to see your moving exhibit of caretakers of people with Alzheimers Disease. (I had attempted a couple of times before and been thwarted by weather!) It was very emotional for me. I really appreciate how you paired just a sentence or two with each portrait that expressed so much. I felt such a bond with each family member portrayed, and felt a little tearful. I am always amazed at the power of visual images to speak volumes and reach us on a gut level. Congratulations on such a meaningful and beautiful project!

    Sincerely,
    Susan Richards

  12. Stacey Burling Inquirer Staff Writer November 30, 2014 3:01 AM

    So far, the search for a treatment that will save our oldest generation from the scourge of Alzheimer’s disease has been a long, frustrating slog.

    Paul Aisen, an Alzheimer’s expert from the University of California, San Diego, explained why.

    For decades, researchers were dealing with a deadly disease that had no apparent symptoms for the first 15 years or so. When the symptoms started, they were not specific to Alzheimer’s. By the time they got bad, the brain was already severely damaged. There was no way to be sure people had Alzheimer’s until they died and a pathologist could search their brains for the hallmark clumps of amyloid and tangles of tau that characterize the disease.

    “So we failed over and over again,” said Aisen, a co-organizer of the International Conference on Clinical Trials for Alzheimer’s Disease, which met Nov. 22 in the Loews Philadelphia Hotel.
    More coverage
    # Scientists Inch Closer to Alzheimer’s Origins
    # Studies Link Cold Sore Virus to Alzheimer’s Risk
    # Alzheimer’s Cases Expected to Double by 2050, Researchers Say

    Aisen said he was now “truly optimistic” about where things were headed. “Everything has changed.”

    Scientists now have imaging techniques that allow them to watch changes in amyloid and tau while people are alive, even well before they have symptoms. There are other “biomarkers” as well.

    Researchers also have created tests that can show changes in memory and thinking ability even before most people are aware that they’re declining. For the first time, this is making it possible to test drugs and other treatments – one trial that uses exercise is on the way – before Alzheimer’s has destroyed crucial parts of the brain.

    “The biggest single reason why I think we’ve failed over the last decade is we are trying to slow down a disease process that has already been damaging the brain for 15 years,” Aisen said. “We’ve been treating much too late.”

    Aisen said the meeting, which drew close to 700 people to Center City, was important because it focused only on clinical trials. Thousands of other researchers are doing bench science or studying the impact of the disease in other ways. This was a chance for scientists to talk about topics that probably wouldn’t turn most of us on, but may speed discovery, including things like trial design, data sharing, collaboration, and statistical approaches.

    One of the group’s big initiatives, for example, the Collaboration for Alzheimer’s Prevention (CAP), has worked to share some study-design elements among multiple early trials. That should make results easier to compare and build upon.

    Speakers who described the prevention trials talked about the challenges of working in many countries with different regulations. It’s complicated to figure out what constitutes risk, when to intervene, and what aspect of disease progression to target.

    Rachelle Doody, a Baylor College of Medicine researcher, said the field was still wrestling with how to categorize patients and exactly how to use biomarkers, which don’t always agree with one another. Good science needs well-matched comparison groups, and that’s tricky with this population. Patients don’t progress at the same rate, a factor that may need to be considered. Some things that may affect prognosis are previous treatments, IQ, and the presence of Parkinsonism and psychosis.

    Aisen said there was nothing in the works that would make a big cognitive difference in the next year for someone with Alzheimer’s, but he was hopeful there would be “effective disease-slowing agents” within 10 years.

    “It’s not just one shot on goal,” he said. “We’ve now launched a number of trials, and many more are coming soon, and we really think we’re getting somewhere.”

    sburling@phillynews.com

    215-854-4944

    @StaceyABurling

    http://www.inquirer.com/

    health_science

  13. More than 35 million people worldwide have Alzheimer’s disease. You may even know someone who has it and are worried that you could get it too. If you have noticed changes in your memory over the last year and are wondering if it is a normal part of aging or if it is something more serious, you may be interested in a clinical research study called the APECS Study.

    Physicians are evaluating an oral investigational medication that may help slow down the progression of what could be very early Alzheimer’s disease.

  14. About Prodromal Alzheimer’s Disease

    What is prodromal, or very early, Alzheimer’s disease?
    Prodromal Alzheimer’s disease is the very early stage of the disease when minor symptoms first appear. A person in this early stage may have more memory problems than normal for their age, but are still able to carry out most daily activities.

    Could I have prodromal Alzheimer’s disease?
    A diagnosis can only be confirmed through medical testing. However, early signs include having a hard time recalling recent, small events such as where you put your keys or having trouble remembering conversations, important dates or phone numbers. Everyone forgets things now and then, but if it happens more than usual it could be a sign of something more and you should talk to your doctor about it. Family members and close friends often notice these memory or thinking changes sooner than the person experiencing them. That is why having a reliable study partner is necessary.

    Why is clinical research important for Alzheimer’s disease?
    There is currently no cure for Alzheimer’s disease and there are no treatments to slow or stop its progression. The disease may develop gradually before symptoms are noticeable. If an early, accurate diagnosis is identified, there is a potential to treat it earlier and significantly impact the course of Alzheimer’s disease. Researchers in this clinical study, called the APECS Study, are trying to find out if a once-daily oral pill may be able to slow disease progression in people with prodromal Alzheimer’s disease.

    Results of clinical research studies may lead to new prevention and treatment options that could help improve the lives of people with Alzheimer’s disease, their families, and future generations.

    See if You Qualify

    call (844) 382-7327 or click to Take Our Quiz >

  15. (TIME.com) — Alzheimer’s disease is more common among African Americans but the genetic contributors to the disorder haven’t been identified until now.
    In the largest study of genetic risk factors for Alzheimer’s in the African American population, researchers reporting in the Journal of the American Medical Association found that two genes associated with higher risk of the neurodegenerative disorder among whites also contributed to higher rates of the disease among African Americans.
    Changes in these genes, however, conferred a higher risk of disease among African Americans than among whites.
    In the study involving nearly 6,000 African American participants aged 60 or older, about 2,000 of whom had Alzheimer’s and 4,000 who did not, variants in the genes ABCA7 and ApoE increased risk of developing Alzheimer’s by 80% and more than two fold, respectively. By comparison, ABCA7 is likely responsible for a 10% to 20% increased risk for the memory-robbing disorder within white populations, and about 40% of whites with certain forms of ApoE are diagnosed with Alzheimer’s.
    TIME.com: Two studies find promising new ways to detect Alzheimer’s earlier
    ABCA7′s role in the Alzheimer’s doesn’t come as a complete surprise; it is involved in producing cholesterol and lipids, and some research suggests that Alzheimer’s disease may involve aberrations in fat metabolism that are similar to those behind heart disease. The more prominent contribution that ABCA7 seems to play in Alzheimer’s risk among African Americans, however, does suggest that such lipid-based pathways may be more important in this population than among whites. ABCA7 also regulates transport of proteins, including those responsible for the production of amyloid, a hallmark of Alzheimer’s when it builds up in sticky plaques in the brain.
    TIME.com: Study shows Alzheimer’s protein may not spread like a virus
    More studies are needed to confirm the role that these genetic variants play in contributing to Alzheimer’s in the African American population, but if the associations are confirmed, they could lead to more refined ways of diagnosing and treating the disease in this group.
    Focusing on lowering cholesterol production or regulating lipid movement into the brain might be more effective, for example, than among whites, whose disease might rely on a different molecular pathway. And even if these interventions don’t prevent the disease, they may help in slowing the onset of symptoms.
    This story was originally published on TIME.com.
    First genes linked to higher risk of Alzheimer’s disease among African Americans

  16. African American Recruitment for University of Washington Alzheimer’s Disease Research Center; minority recruitment for Alzheimer’s studies

    OF NOTE
    HEART Study for African Americans with Prediabetes
    While it is clear that Alzheimer’s disease can affect people of all races or ethnicities, certain groups, such as African Americans, may be at a greater risk of developing dementia. Despite this, the vast majority of Alzheimer’s disease research participants are of Caucasian descent. This fact means that non-Caucasian groups are significantly underrepresented in research studies and that the results of those studies may not be applicable to non-Caucasian individuals. For these reasons, it is essential that future research studies include a diversity of research participants from all races and ethnic groups in order to fully understand all people affected by Alzheimer’s disease. At the UW ADRC, we actively welcome everyone to participate in our research program, and we have chosen to specifically focus our outreach and recruitment efforts on the African American community in the Pacific Northwest.

    We know that Alzheimer’s affects the African American community uniquely—from its causes to the effects that it has on families and caregivers. The extent of our understanding of Alzheimer’s in the African American community is dependent upon the participation of African American research volunteers. The UW ADRC’s goals are to provide Alzheimer’s education to the African American community, to improve access to culturally competent care for patients and caregivers through partnerships with community resources (such as the Alzheimer’s Association), and to increase research participation by African Americans in the community. We hope that our efforts will create a greater understanding of Alzheimer’s in the African American community and lead to critical advances in culturally specific Alzheimer’s care.

    UW ADRC African American Advisory Board

    The outreach of the ADRC in the African American community is being led by the ADRC African American Advisory Board. The board is comprised of African American community leaders and advocates, health professionals, social workers, ministry leaders, and caregivers. Their generous input directly informs the ADRC’s outreach efforts, from our recruitment materials to the community groups with whom we partner. The goal of the board is to recognize the concerns of African Americans, to offer sincere answers, and to give key direction to the ADRC in providing culturally sensitive care, assistance to resources, and research opportunities.

    African Americans and Alzheimer’s Disease Facts:
    Close relatives of African Americans with Alzheimer’s disease have a higher risk of dementia than close relatives of Caucasian Americans with AD. Thus, there is a greater family risk for dementia for African Americans than Caucasian Americans.1
    Findings from different studies vary, but the available research indicates that in the United States, older African Americans are approximately two times more likely than older Caucasian Americans to have Alzheimer’s and other dementias.2
    The presence of the APOE-4 allele is a genetic risk factor for Alzheimer’s in non-Hispanic Caucasian Americans, but African Americans and Hispanic Americans have an increased frequency of Alzheimer’s regardless of their APOE genotype. These results suggest that other genes or risk factors may contribute to the increased risk of Alzheimer’s in African Americans and Hispanic Americans.3
    Compared to the general public, African Americans have a higher risk of diabetes, higher blood pressure, and higher rates of cholesterol and other cardiovascular complications, all of which could lead to a higher risk for dementia and Alzheimer’s disease.4

    Resource & Outreach Materials:
    Concerned About Research?
    The Importance of Research
    Stress Relief for the African American Caregiver
    Additional resources can be found here.
    Online Resources:
    The Alzheimer’s Association: African Americans & Alzheimer’s
    African American Alzheimer’s and Wellness Association
    Ethnic Elders Care Network
    Washington State Commission on African American Affairs
    Seattle Mayor’s Council on African American Elders
    Central Area Senior Center
    Minority Nurse
    Journey to Wellness newsletter
    Relevant Reports:
    Alzheimer’s Association Special Report: Race, Ethnicity and Alzheimer’s Disease (Begins Section 6, p. 48)
    African Americans and Alzheimer’s Disease: The Silent Epidemic
    Serving African American Families: Home & Community Services for People with Dementia & Their Caregivers
    Caregiver Education and Service Utilization in African American Families Dealing with Dementia
    The Neuropathology of Alzheimer’s Disease in African American and Caucasian Individuals
    Association between Apoliprotein E Genotype and Alzheimer’s Disease in African American Subjects
    Risk of Dementia Among Caucasian and African American Relatives of Patients With Alzheimer Disease
    Impediments to Timely Diagnosis of Alzheimer’s Disease in African Americans

    Citations:

    1Green, Cupples et al. Risk of Dementia Among White and African American Relatives of
    Patients With Alzheimer Disease. JAMA 287:329-336, 2002.

    2Alzheimer’s Association Special Report: Race, Ethnicity and Alzheimer’s Disease.
    http://www.alz.org/documents_custom/report_alzfactsfigures2010.pdf, 2010.

    3http://jama.ama-assn.org/search?author1=Ming-Xin+Tang&sortspec=date&submit=Submit Tang,Stern, et al. The APOE-?4 Allele and the Risk of Alzheimer Disease Among African Americans, Whites, and Hispanics. JAMA 279(10):751-755, 1998.

    4Stroke risk factors may signal faster cognitive decline in elderly.
    http://www.physorg.com/news122898161.html. American Heart Association, 2008.

  17. World Alzheimer Report 2013: An analysis of long-term care for dementia
    Listen
    The World Alzheimer Report 2013 ‘Journey of Caring: An analysis of long-term care for dementia’, reveals that, as the world population ages, the traditional system of “informal” care by family, friends, and community will require much greater support. Globally, 13% of people aged 60 or over require long-term care. Between 2010 and 2050, the total number of older people with care needs will nearly treble from 101 to 277 million.

    Long-term care is mainly about care for people with dementia; around half of all older people who need personal care have dementia, and 80% of older people in nursing homes are living with dementia. The worldwide cost of dementia care is currently over US$600 billion, or around 1% of global GDP.

    The report which was researched and authored by Prof Martin Prince, Dr Matthew Prina and Dr Maëlenn Guerchet on behalf of the Global Observatory for Ageing and Dementia Care which is hosted at the Health Service and Population Research Department, King’s College London.

    Recommendations

    Governments around the world should make dementia a priority by implementing national plans, and by initiating urgent national debates on future arrangements for long-term care
    Systems should to be in place to monitor the quality of dementia care in all settings – whether in care homes or in the community
    Autonomy and choice should be promoted at all stages of the dementia journey, prioritising the voices of people with dementia and their caregivers
    Health and social care systems should be better integrated and coordinated to meet people’s needs
    Front-line caregivers must be adequately trained and systems will need to be in place to ensure paid and unpaid carers receive appropriate financial reward in order to sustain the informal care system and improve recruitment and retention of paid carers
    Care in care homes is a preferred option for a significant minority – quality of life at home can be as good, and costs are comparable if the unpaid work of family caregivers is properly valued
    The quality of care in care homes should be monitored through the quality of life and satisfaction of their residents, in addition to routine inspections, as care homes will remain an important component of long-term care.
    Read the report

    World Alzheimer Report 2013 – Summary Sheet (PDF 2 pages)
    World Alzheimer Report 2013 – Executive Summary (PDF 36 pages)
    World Alzheimer Report 2013 (PDF 92 pages)
    Traditional Chinese – Executive Summary (PDF 36 pages)
    This Executive Summary provides a synopsis of the findings of detailed evidence-based reviews
    presented in the full report. The full report contains tabulated data and references, as well as a more detailed exposition and discussion of results.

  18. The Alzheimer University is a series of workshops for national Alzheimer association staff and volunteers to help them strengthen their associations. The aim of the Alzheimer University is to give participants the tools to identify their association’s aims, provide information, raise money and awareness, effectively govern their association and influence public policy.

    An annual programme for emerging associations sees representatives from new and developing associations meeting to learn and discuss the best ways to establish their association. Sessions include running support groups, recruiting volunteers, setting up a governance structure and raising profile and awareness. These workshops are often led by representatives of developed Alzheimer associations.

    Various Alzheimer University programmes also take place each year for member associations of various sizes and stages of development. These programmes deal with more advanced organisational issues and have a particular focus on one area, for example fundraising or advocacy.

    Participants are asked to set objectives at the end of the programme and the associations are followed up on their progress after six and twelve months.

    ADI financially supports invited participants to attend the Alzheimer University programmes and provides ongoing support after the course. Up until 2014, representatives from Alzheimer associations in over 100 countries had taken part in an Alzheimer University programme.

    “It made me realise that there is nothing more motivating than having clearly stated direction and measurable goals.” Nilanjana Maulik, India

    “If you have a chance to attend the Alzheimer University, don’t hesitate!” Birgitta Martensson, Switzerland

    “This training course was an eye opening experience to me and I will start my first steps in establishing the JAA with confidence and on solid bases.” Eman al-Khateeb, Jordan

    “It was heartening that the tips and advice that we gave were taken on board, with a real commitment to implement change.” Andrew Oldham, Alzheimer University trainer, UK

  19. On 12 March 2012, the Swiss Council of States (upper house of the federal Parliament) approved a series of proposals which effectively call upon the government to prepare a national dementia plan.

    The next step will be to establish priorities and assign action items to regional authorities and associations. The Swiss Alzheimer Association is an active supporter for a national dementia plan and has proposed that the following be included:

    funding for professional training to improve diagnosis
    support for family caregivers, including funding for day/night care centres
    campaigns to raise awareness and reduce the stigma associated with dementia
    There are currently more than 100,000 people with dementia in Switzerland. This will increase to 150,000 in ten years and to some 300,000 people by 2040.

  20. 30 October 2013: CEAFA and Sanitas present a policy proposal to the Spanish Parliament

    On 30 October, Spain’s CEAFA and the Sanitas Foundation presented a proposal for a national dementia policy to the Committee on Health and Social Services of the Spanish House of Representatives.

    Both organisations share the goal of Alzheimer’s disease and other forms of dementia becoming a public health priority at the national and international levels.

    Mr Koldo Aulestia, President of CEAFA, said: “Alzheimer’s is more than just a disease; the figures show that it has become a real social and health problem that affects all strata of society, extending its effects not only on individuals but also on family caregivers.”

    His sentiment were echoed by Mr David Pérez de Ciriza, Director of Sustainability and Institutional Relations of Sanitas, who added: “The focus of state policy and the creation of a National Dementia Plan ensures that health and social systems are adequately structured and equipped to ensure high quality care that allows people live well with dementia today and in the future.”

  21. Launch of the Action Plan for Dementia

    In 2010, the four-year Action Plan for Dementia was launched and EUR 4 million was allocated to implement the plan. This figure is significantly lower than the amounts allocated for other disease action plans in Denmark. According to the Danish Alzheimer Society, the plan will not be sufficient to meet the challenge of a growing number of people with dementia in the next 10-30 years.

  22. 3 June 2013: Scotland launches new National Dementia Strategy

    Mr Alex Neil, Cabinet Secretary for Health and Wellbeing, launched Scotland’s new National Dementia Strategy at Alzheimer Scotland’s Dementia Connections Conference on 3 June.

    A key aim of the new three-year strategy will be to improve standards of hospital care for people with dementia. It will see all general hospitals implement an action plan to prevent people with dementia going into hospital unnecessarily, ensure they get better care when in hospital and are helped to get home as quickly as possible once they are ready to leave.

    The strategy will also build upon the achievements of the first strategy, including 300+ Dementia Champions, Alzheimer Scotland Dementia Nurses in health boards across Scotland, the Promoting Excellence knowledge and skills framework for all health and social care staff and the Standards of Care for Dementia in Scotland.

    Secretary Neil said: “I am delighted to launch our second three year National Dementia Strategy, which will further improve diagnosis rates, transform the quality of post-diagnostic support and take forward a national action plan on improving care for people with dementia in hospitals.

    “We’ve already seen huge progress since we made dementia a national priority in 2007. Currently 64% of Scots are getting a diagnosis, significantly better than other parts of the UK. Everyone diagnosed from 1 April this year is entitled to a named support worker to help them and their families understand the illness, manage its symptoms and plan for future care, described as a ‘world leading’ commitment by Alzheimer Scotland.”

  23. Welcome
    Policy in Practice
    National Dementia Plans
    United Kingdom (Northern Ireland)
    United Kingdom (Northern Ireland)

    National Dementia Plans

    Introduction
    February 2012 – Interview with Edwin Poots
    February 2012 – Interview with Elizabeth B. McCullough

    The consultation period for Northern Ireland’s first dementia strategy ended in September 2010. The Alzheimer’s Society participated in the consultation. In November 2010 a summary of responses to the consultation were published by the Department of Health Social Services and Public Safety entitled “Improving Dementia Services”.

    A strategy document was published in November 2011 by Health Minister Edwin Poots, under the title “Improving Dementia Services in Northern Ireland, A Regional Strategy”.

    The strategy makes recommendations aimed at improving the services and support arrangements currently available for people with dementia, their families and their carers. There are currently some 19,000 people living with dementia in Northern Ireland. This is expected to rise to some 23,000 by 2017 and 60,000 by 2051.

    The dementia strategy also aims to reduce the risk or delay the onset of dementia in the population; it is estimated that delaying the onset of dementia by five years could halve its prevalence.

    Finally, new legislation is being developed to deal with mental capacity and mental health. This will include powers and protections relating to substitute decision making for those who are unable to make their own decisions, including people with dementia.

  24. Welcome
    Policy in Practice
    National Dementia Plans
    United Kingdom (England)
    United Kingdom (England)

    National Dementia Plans

    Introduction
    May 2009: interview with Alan Johnson and Phil Hope
    May 2010: interview with Neil Hunt
    March 2011: interview with Alistair Burns
    March 2012: PM’s challenge on dementia
    June 2014: APPG calls for new long-term UK strategy

    National strategy launched in February 2009

    In February 2009 the “National Dementia Strategy for England: Living well with dementia” was launched. The five-year plan was supported by an investment of GBP 150 million to support local services to deliver the strategy.

    A revised implementation programme was published in 2010, when the new coalition government pledged to continue to implement the strategy. The Dementia Action Alliance (DAA) was also formed in 2010. The DAA, consisting of 50+ organisations, aims to ensure that the strategy is implemented.

  25. Welcome
    Policy in Practice
    National Dementia Plans
    Luxembourg
    Luxembourg

    National Dementia Plans

    On 14 May 2013, Luxembourg’s Health and Family Ministries presented the country’s first national dementia plan during a press conference.

    The two Ministries will work in concert to carry out the plan. The Ministry of Health will be responsible for the areas of prevention, diagnostic standards, medical reimbursement and education. Meanwhile, the Family Ministry will develop a dedicated website and conduct an awareness campaign that includes a psycho-geriatric training course for health workers.

    At the beginning of the conference, both Ministers made the personal comment that one of their parents was afflicted with Alzheimer’s disease. Family Minister Marc Spautz likened awareness of dementia today to that of AIDS 20 years ago: the general public had little or no knowledge about it, so the disease was feared and its sufferers were stigmatised. Mr Spautz is confident that the campaign and the training course will help to eliminate these issues in Luxembourg.

    There are an estimated 6,500 people living with dementia in Luxembourg – of which 60% with Alzheimer’s disease – and this is expected to reach 8,500 by 2025.

  26. France – National Plans for Alzheimer and related diseases

    National Dementia Plans

    Introduction
    June 2008 – Interview with Florence Lustman
    June 2008 – Launch of the third French plan
    June 2013: Evaluation of the French Alzheimer Plan completed

    The first national dementia plan in Europe

    In 2001, France became the first European country to launch a national dementia plan. At the time, there were some 600,000 French people with dementia, of which half were diagnosed and one third were receiving treatment. 75% of people with Alzheimer’s disease were living at home and 50% of all nursing home residents lived with some form of dementia. A day’s care cost EUR 60 while full-time residency in a nursing home ranged between EUR 3,000-4,600.

    The first French Alzheimer Plan ran from 2001-2005 with six objectives:

    – Identify the early symptoms of dementia and refer people to specialists.

    – Create a network of “memory centres” to enable earlier diagnosis.

    – Produce ethical guidelines for families and care homes.

    – Provide financial support for people with dementia, establish day care centres and create local dementia information centres.

    – Build new residential care homes and improve existing homes.

    – Provide support for research and clinical studies.

    By 2004 there were nearly 800,000 French people with dementia, including a growing proportion of women and 18% of all people over 75. More than 165,000 new cases of dementia were diagnosed annually, with an associated life expectancy of eight years. Alzheimer’s disease was now recognised as a chronic disease by the French social security system and the need for continuing support was clear.

    Expanding the objectives: the second Alzheimer plan

    The second Alzheimer plan lasted until 2007 and added four objectives to the original set:

    – Seek eligibility of dementia for 100% insurance coverage.

    – Identify and support the needs of younger people with dementia.

    – Provide training and support to professional and volunteer workers.

    – Develop emergency housing resources.

    Public investment and European involvement: the third plan

    The third Alzheimer plan was launched on 1 February 2008 by President Sarkozy, who pledged EUR 1.6 billion to the five-year programme. The original objectives were updated and integrated into four main activity groups:

    – Improve diagnosis

    – Provide better treatment and support

    – Provide help more effectively

    – Speed up research.

    The following table shows a description of the objectives, including the initial budget allocation. There is also a new objective, aiming to make Alzheimer’s disease a European priority.

    Objective
    Description
    Budget (€ mill.)
    1
    Increase support for carers
    206
    2
    Strengthen coordination between players
    141.4
    3
    Enable support at home
    173
    4
    Improve access to diagnostic and care pathways
    106
    5
    Improve residential care
    831
    6
    Develop training for health professionals
    10
    7
    Support new research efforts
    191
    8
    Organise epidemiological surveillance
    2.3
    9
    Provide information to the general public
    6
    10
    Promote ethical considerations
    2.5
    11
    Make Alzheimer’s disease a European priority
    0.3
    In February 2011, a three-year review of the plan took place with the President, government ministers and experts taking part. The reviewers agreed that the third plan should be followed by another, which should be just as ambitious, in order to maintain momentum and capitalise on advances made. The third French Alzheimer plan expired at the end of 2012.

    During his 2012 presidential campaign, President Hollande stated that he would support the launch of a fourth French Alzheimer Plan.

    On 26 June 2013, Marisol Touraine, Health and Social Affairs Minister, Geneviève Fioraso, High Education and Research Minister, and Michèle Delaunay, Minister for Older Persons and Autonomy, received the evaluation report of the third French Alzheimer Plan.

    The evaluation was made by Prof Joël Ankri and Prof Christine Van Broeckhoven. It highlights the major achievements of the plan in research, diagnosis, support of people with dementia and support to their families. The report also lists 56 recommendations for future action.

    The authors noted the significant progress in patient care pathways. In addition, French research teams are now better recognised at international level. This is due to major achievements in understanding dementia, notably in the field of genetics. Efforts to develop innovative biomarkers must continue, to allow early diagnosis of Alzheimer’s disease.

    The report also recommends better national integration and collaboration between care structures and service providers, including entry points, adapted care and specialised Alzheimer teams in healthcare centres all over the country. Finally, the report calls for an extension of the Alzheimer Plan, including other neurodegenerative diseases that may involve common resources.

    The three Ministers stated their intention to continue supporting people with dementia and their carers. They will work to integrate the recommendations into a new plan, which will be presented on the occasion of World Alzheimer Day on 21 September 2013.

    Downloads

    Evaluation of the French Alzheimer Plan – June 2013
    Francois Hollande letter 27 Feb 2012
    3rd French Alzheimer Plan 2008-2012
    3rd French Alzheimer Plan 2008-2012 (English)
    Nicolas Sarkozy speech 1 Feb 2008
    2nd French Alzheimer Plan 2004-2007
    1st French Alzheimer Plan 2001-2005

  27. Welcome
    Policy in Practice
    National Dementia Plans
    Malta
    Malta

    National Dementia Plans

    Launch of the Working Group
    Interview with Chair of the Strategy Group
    Feb 2014: Malta releases consultation paper for dementia strategy
    Dementia Strategy Working Group Launched

    There is a draft National Dementia Strategy in Malta. It is hoped that implementation will start in 2012 and continue to 2020. This draft is based on previous work done by the Dementia Strategy Group (DSG) which was launched in May 2009 by the Parliamentary Secretary for the Elderly and Community Care. It is a comprehensive strategy, which provides direction in the various areas of dementia care from increasing awareness, to improving early diagnosis, to increasing support to dementia patients and their families and providing end of life and palliative care.

    http://www.activeageing.gov.mt/en/Pages/National-Dementia-Strategy.aspx

  28. Welcome
    Research
    European Collaboration on Dementia
    Cost of dementia
    Prognosis to 2030
    Cost of illness and burden of dementia in Europe – Prognosis to 2030

    Cost of dementia

    by Anders Wimo, MD, PhD, Professor, Karolinska Institutet, Linus Jönsson, PhD, I3 Innovus and Anders Gustavsson, Senior Analyst, I3 Innovus

    Prognosis to 2030

    This prognosis of costs is only based on a prevalence prognosis, based on UN´s demographic forecast combined with Eurocode´s new prevalence figures for Europe (figure 1).

    Figure 1. Prognosis for the number of demented in Europe until 2030.

    As seen in figure 1, the number of demented will increase considerably from about 10 million today to about 14 million demented persons in 2030.

    The cost prognosis is seen in Figure 2. The costs are rather similar in Northern, Western and Southern Europe while costs are considerably lower in Estern Europe (where most people with dementia live). The demographic forecast of costs will result in an increase in the whole Europe by about 43% between 2008 and 2030 to over 250 billions €.

    Figure 2. Prognosis for the future costs of dementia in Europe until 2030

    References

    Jönsson L, Wimo A. Economic burden of Alzheimer’s Disease in Europe. A review of evidence and methodological considerations . Pharmacoeconomics (in press)
    SBU. Dementia. A systematic review. Stockholm: Staten beredning för medicinsk utvärdering (SBU) (The Swedish Council on Technology Assessment in Health Care) 2008. Report No.: 172E/1-3.
    Wimo, A., L. Jönsson, et al. (2008). The cost of illness and burden of dementia in Europe. Dementia in Europe Yearbook 2008. A. Europe. Luxembourg, Alzheimer Europe: 67-71.
    Hofman A, Rocca WA, Brayne C, Breteler MM, Clarke M, Cooper B, et al. The prevalence of dementia in Europe: a collaborative study of 1980-1990 findings. Eurodem Prevalence Research Group. Int J Epidemiol. 1991 Sep;20(3):736-48.
    Ferri, C. P., M. Prince, et al. (2005). “Global prevalence of dementia: a Delphi consensus study.” Lancet 366(9503): 2112-7.
    SBU (2008). Dementia. A systematic review. Stockholm, Staten beredning för medicinsk utvärdering (SBU) (The Swedish Council on Technology Assessment in Health Care).
    Lobo, A., L. J. Launer, et al. (2000). “Prevalence of dementia and major subtypes in Europe: A collaborative study of population-based cohorts. Neurologic Diseases in the Elderly Research Group.” Neurology 54(11 Suppl 5): S4-9.
    UN. (1998). “World population prospects: The 1998 revision. World population 1950-2050.” 1998.
    Word Economic Outlook. (http://www.imf.org/external/pubs/ft/weo/2008/02/weodata/weorept.aspx?sy=2006&ey=2008&scsm=1&ssd=1&sort=country&ds=%2C&br=1&c=163%2C998&s=PPPPC&grp=1&a=1&pr.x=6&pr.y=6. )
    Eurostat.(http://epp.eurostat.ec.europa.eu/tgm/table.do?tab=table&language=en&pcode=cp060&tableSelection=1&footnotes=yes&labeling=labels&plugin=1).
    Word Economic Outlook. (http://www.imf.org/external/pubs/ft/weo/2008/02/weodata/weorept.aspx?sy=2005&ey=2008&scsm=1&ssd=1&sort=country&ds=%2C&br=1&c=914%2C962%2C913%2C921%2C963%2C960%2C922%2C942%2C926&s=PCPI&grp=0&a=&pr1.x=42&pr1.y=7)
    Kronborg Andersen C, Sogaard J, Hansen E, Kragh-Sorensen A, Hastrup L, Andersen J, et al. The cost of dementia in Denmark: the Odense Study. Dement Geriatr Cogn Disord. 1999;10(4):295-304.
    O’Shea E, O’Reilly S. The economic and social cost of dementia in Ireland. Int J Geriatr Psychiatry. 2000;15(3):208-18.
    Jonsson L, Eriksdotter Jonhagen M, Kilander L, Soininen H, Hallikainen M, Waldemar G, et al. Determinants of costs of care for patients with Alzheimer’s disease. Int J Geriatr Psychiatry. 2006 May;21(5):449-59.
    Wimo A, Johansson L, Jönsson L. Demenssjukdomarnas samhällskostnader och antalet dementa i Sverige 2005 (The societal costs of dementia and the number of demented in Sweden 2005) (in Swedish). Stockholm: Socialstyrelsen; 2007. Report No.: 2007-123-32 .
    Knapp M, Prince M. Dementia UK. London: Alzheimer’s Society; 2007 Contract No.: Document Number|.
    Scuvee-Moreau J, Kurz X, Dresse A. The economic impact of dementia in Belgium: results of the National Dementia Economic Study (NADES). Acta Neurol Belg. 2002 Sep;102(3):104-13..
    Rigaud AS, Fagnani F, Bayle C, Latour F, Traykov L, Forette F. Patients with Alzheimer’s disease living at home in France: costs and consequences of the disease. J Geriatr Psychiatry Neurol. 2003 Sep;16(3):140-5.
    Schulenberg J, Schulenberg I. Cost of treatment and cost of care for Alzheimer´s disease in Germany. In: Wimo A, Jonsson B, Karlsson G, Winblad B, editors. The Health Economics of dementia. London: John Wiley & Sons.; 1998. p. 217-30.
    Koopmanschap MA, Polder JJ, Meerding WJ, Bonneux L, van der Maas PJ. Costs of dementia in the Netherlands. In: Wimo A, Jonsson B, Karlsson G, Winblad B, editors. The Health Economics of dementia. London: John Wiley & Sons.; 1998. p. 207-16.
    Cavallo MC, Fattore G. The economic and social burden of Alzheimer disease on families in the Lombardy region of Italy. Alzheimer Dis Assoc Disord. 1997;11(4):184-90.
    Trabucchi M. An economic perspective on Alzheimer’s disease. J Geriatr Psychiatry Neurol. 1999;12(1):29-38.
    Boada M, Pena-Casanova J, Bermejo F, Guillen F, Hart WM, Espinosa C, et al. [Costs of health care resources of ambulatory-care patients diagnosed with Alzheimer’s disease in Spain]. Med Clin (Barc). 1999 Nov 27;113(18):690-5.
    Zencir M, Kuzu N, Beser NG, Ergin A, Catak B, Sahiner T. Cost of Alzheimer’s disease in a developing country setting. Int J Geriatr Psychiatry. 2005 Jul;20(7):616-22
    Gulacsi, L., K. Karpati, et al. (2008). Disease burden of dementia in Hungary, a 154 patient cross-sectional survey 2008 Budapest, Corvinus University.

    Last Updated: Tuesday 27 October 2009

    MORE ABOUT
    Cost of dementia
    The health economical context (Welfare theory)
    Health economic aspects of dementia
    The impact of informal care
    Cost of illness and burden of dementia
    Regional/National cost of illness estimates
    Prognosis to 2030
    Sensitivity analysis
    Other European cost of illness estimates
    Regional Patterns: The societal costs of dementia in Sweden
    Regional patterns: The economic environment of Alzheimer’s disease in France
    Regional patterns: Economic environment of Alzheimer’s disease in Mediterranean countries
    Regional patterns: Socio-economic impact of dementia and resourse utilisation in Hungary
    Conclusions and policy implications
    Acknowledgements

    Options

  29. Welcome
    News
    Alzheimer Europe
    Wednesday 05 November 2014 – Japan hosts third G7 Global Dementia Legacy event
    Japan hosts third G7 Global Dementia Legacy event

    Wednesday 05 November 2014

    From 5 to 7 November, Japan played host to the third in a series of four G7 Global Dementia Legacy events around the world. The first legacy event took place in the UK in December 2013, the second in Canada in September this year and the final instalment will take place in the US in February 2015.

    Dementia experts from around the world came together to talk about “New care and prevention models”. Several people living with dementia were in attendance, as well as three members from the Alzheimer’s Association of Japan’s Dementia Working Group, who were speakers at the event.

    Japanese Prime Minister Shinzō Abe highlighted the importance of dementia care provision and stressed the commitment of the Japanese government to take global action against dementia. His government’s Health, Labour and Welfare Minister, Yasuhisa Shiozaki announced the launch of a new Japanese dementia strategy – an update to the 2012 “Orange Plan”.

    The Organisation for Economic Co-operation and Development (OECD) launched a dementia care report during the event, stating that dementia is the fastest growing cause of disability in the world today and emphasising the need to develop and implement policies to improve care and to share knowledge across the international community.

    Jürgen Scheftlein of the European Commission’s Directorate General for Health (DGSANCO) presented results from the first European dementia action plan and was keen to emphasise the positive impact European collaboration has had on dementia care and research. A second plan will be prepared for 2015-2018.

    Sessions on prevention and risk reduction highlighted intervention studies COGNICISE from Japan and THISCE from Taiwan, both combining physical exercise and cognitive training as well as other interventions combined to try to delay the onset of dementia. Alzheimer Disease International (ADI)’s Professor Martin Prince presented the conclusions from this year’s “World Alzheimer Report” on dementia and risk reduction.

    The event also highlighted innovative care solutions using information and communications technology (ICT) to help support people with dementia and increase independence. The importance of person centred care was also emphasised by Professor Dawn Brooker from the University of Worcester and Profesor Graham Stokes from Bupa (UK), who showed the link between high standards of care and a decreased need for antipsychotics.

    In closing, Dr Saxena, Director of Mental Health, Neurological Disorders and Substance Abuse, speaking on behalf of the World Health Organisation (WHO), announced that the first WHO Ministerial Conference on Global Action Against Dementia would take place in Geneva, Switzerland in March of next year. Health Ministers from the 193 member states will be invited, along with various international organisations. The aim is to spread the work done by the G7 countries to the rest of the world.

    To mark the event, UN Independent Expert, Rosa Kornfield-Matte also delivered a message on the full enjoyment of human rights by older persons.

    Alzheimer Europe’s Executive Director, Jean Georges, attended the legacy event. Mr Georges reported that he was pleased to see there had been a shift, taking on board the calls for more focus on dementia care, rather than only talking about a possible cure. He noted, however, that it was apparent the G7 countries were still uncertain as to how to work together on this new area of focus and that there seemed to be more clarity around the cure element of discussions, in terms of how to move forward. Perhaps combining age-friendly projects – Such as the WHO initiative on age-friendly environments or the European Innovation Partnership on Active and Healthy Ageing – with dementia-friendly communities and projects could be a useful direction to take, Mr Georges commented.

  30. Alzheimer’s Disease Research Center
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    What is Alzheimer’s Disease?
    Alzheimer’s disease is a disorder occurring primarily in late life in which the patient’s memory, thinking and behavior are impaired because specific brain cells degenerate. With the passage of time, Alzheimer’s disease gets steadily worse. At the present time, there is no cure. The Alzheimer’s disease Association estimates that 4 million Americans have Alzheimer’s disease and 100,000 die of the disease each year.

    Many individuals show early symptoms of the disease when they are in their 60s or early 70s. Some people fear that occasional forgetfulness, like misplacing keys or not remembering a name, is a sign of Alzheimer’s disease. However, this kind of ordinary memory loss does not mean that a person has Alzheimer’s disease.

    Initially, memory impairments in Alzheimer’s disease are mild but eventually they begin to impact on the life of affected individuals, diminishing their ability to work or function normally. They forget easily and often repeat the same questions even after hearing the answer. They lose objects, or forget where they are, how they got there and how to get home. They begin having trouble with language, judgment, problem solving and calculating numbers. Their mood may change suddenly, swinging from calm to rage and back again within minutes, without apparent reason. Dealing with these individuals may be very difficult for family members or caregivers.

    These changes occur slowly and may at first be mistaken for simple forgetfulness. However, in Alzheimer’s disease, patients grow progressively worse. Medications can only improve some of the symptoms.

    What are the risk factors for developing Alzheimer’s disease?
    Age is the prime risk factor. Older individuals are the most likely to develop Alzheimer’s disease. About 7% of all people over 65 and perhaps 35-40% of persons over 80 develop Alzheimer’s disease.

    In rare cases, people younger than 60 develop the disease. This occurs particularly in individuals who have a family tendency for the disorder. There are at least 3 genes which, when mutated, cause Alzheimer’s disease:

    APP gene (chromosome 21)
    Presenilin 1 gene (chromosome 14)
    Presenilin 2 gene (chromosome 19)
    One other gene is a risk factor; the ApoE4 gene. This gene does not cause the disease, but the presence of copies of certain forms of its gene products predisposes the elderly to Alzheimer’s disease.

    These genetic factors interact in complex ways, which are best studied in animal model systems.

    How is Alzheimer’s disease diagnosed?
    Alzheimer’s disease is just one of a variety of forms of dementia, the term used to describe a decline in mental ability. Doctors rule out other causes of dementia, particularly those that are treatable. These other diseases can often mimic Alzheimer’s disease. Clinical history, neuropsychological testing, laboratory studies and imaging technologies are used to enhance the diagnosis, but unfortunately, other than by examining brain tissue, there is no way to test for Alzheimer’s disease in living persons. With time, particularly following several examinations, the diagnosis of Alzheimer’s disease becomes more certain.

    To diagnose Alzheimer’s disease, physicians:

    Review the patients’ medical history;
    Perform physical, neurological and psychiatric evaluations;
    Perform neuropsychological testing;
    Order laboratory exams.
    Sometimes computerized tomography (CT), magnetic resonance imaging (MRI) or positron emission tomography (PET) are performed on the patient to rule out other, treatable conditions. In specialty centers like the Johns Hopkins Alzheimer’s Disease Research Center, this combination of approaches is about 90% accurate in confirming Alzheimer’s disease. However, absolute proof for a diagnosis can only be confirmed by examining the brain tissue (in a biopsy during life or a brain autopsy after death).

    How is Alzheimer’s disease treated?
    There are five medications approved by the FDA for symptomatic treatment of Alzheimer’s disease. These medications (listed below) improve cognition somewhat but do not change the rate of decline of the disease. The major goal of Alzheimer’s disease research is to find improved treatments for patients.

    DRUG ACTIVITY PROPOSED MECHANISM OF ACTION
    Cognex Acetylcholinesterase Inhibitor Increased levels of Acetylcholine
    Aricept Acetylcholinesterase Inhibitor Increased levels of Acetylcholine
    Exelon Acetylcholinesterase Inhibitor> Increased levels of Acetylcholine
    Reminyl Acetylcholinesterase Inhibitor Increased levels of Acetylcholine
    Memantine NMDA Receptor Antagonist Reduced levels of N-methyl-D-aspartate (NMDA)
    Patients with Alzheimer’s disease are also given medications to reduce behavioral problems, when they occur. These problems include: depression, agitation, sleep disorders, hallucinations and delusions.

    For more information on caring for Alzheimer’s patients, read: The 36-Hour Day

    A Family Guide to Caring for Persons with Alzheimer disease, Related Dementing Illnesses, and Memory Loss in Later Life. Co-authored by Peter Rabins, MD, MPH, the co-director of the Geriatric Psychiatry Program at Johns Hopkins

  31. IN THE UNITED STATES…

    5.4 million Americans have Alzheimer’s—double the number since 1980.One million are African Americans
    In 2012, direct costs of care for Alzheimer’s patient is estimated to be $200 billion. African Americans bear at least 30 percent of these costs despite being less than 14 percent of the U.S. population
    16 million are expected to have Alzheimer’s by 2050
    1 in 7 Alzheimer’s patients live alone, increasing risk for accidents, malnutrition and other problems
    Sixth leading cause of death among all adults. It’s the 4th leading cause of death for older African Americans
    Research Pipeline: 312 therapies for Alzheimer’s disease are in clinical trials
    Deaths due to Alzheimer’s are increasing, while mortality rates for cancer and heart disease are decreasing
    REF: AfricanAmericaUS Against Alzheimer’s website 2014

  32. SNIFF: Study of Nasal Insulin to Fight Forgetfulness

    What do Participants Do?
    Read and sign a consent form.
    Give family and Medical History.
    Answer questions that test your memory, thinking, mood, and concentration.
    Complete a brief neurological examination.
    Give permission to review the medical records of the individual with memory and thinking problems.
    Provide a blood, urine and lumbar fluid sample.
    Receive a free ECG (a look at your heart)
    Have a study partner- someone who you see regularly who can answer questions about your health
    Monetary compensation may be available at certain sites
    Why is this Study Important?
    The purpose of the SNIFF study is to find out whether a type of insulin, when administered as a nasal spray, improves memory in adults with a mild memory impairment or Alzheimer’s disease. There is growing evidence that poor regulation of insulin may make it difficult for the brain to function optimally and may contribute to the development of Alzheimer’s. SNIFF will test a therapy aimed at using insulin to see if these deficiencies can be corrected.
    What are the study facts?
    Study participation is voluntary.
    Joining the study will not affect your healthcare or insurance.
    information is confidential.
    There is no cost to participate.
    A participant may withdraw from the study at any time.
    Travel to the research center is required for testing and follow-up.
    Participants will receive periodic updates from the Project Director
    Who can join the Study?
    You may be eligible to join the SNIFF study if you:

    Have a diagnosis of a mild cognitive impairment or possibly mild Alzheimer’s Disease
    Fluent in English or Spanish
    Have a partner available to attend all clinic appointments and available to supervise drug administration twice a day
    Stable medical condition for three months prior to screening visit
    Stable medications for four weeks prior to screening visit
    Do NOT take drugs for diabetes (type I or II)
    Willing and able to undergo clinic assessments (for example — blood and urine lab tests, MRI, lumbar puncture, ECG, neuropsychological tests)
    Enroll in the Study Today!
    List of study locations at bottom (need to have ability to link to each location with the name of the chief researcher.[SNIFF ADRC Page includes list of sites with numbers. Need to add a person’s name and email.
    Who is sponsoring this Study?
    This study is being conducted by the Alzheimer’s disease Cooperative Study (ADCS) through a grant from the National Institute on Aging (NIA), one of the National Institutes of Health (NIH).
    There are many other research studies available in throughout the United States. To learn more about these studies go to: [provide link to I’m in or the Clinical Trials Engagement Network]

    TERMS | PRIVACY | CONTACT US

    ^ Back to Top
    State City Site Phone
    AZ Phoenix Banner Alzheimer’s Institute (602)839-6853
    AZ Sun City Banner Sun Health Research Institute (623)832.8790
    CA Irvine University of California, Irvine (949)824-8726
    CA La Jolla University of California, San Diego (858)246-1303
    CT New Haven Yale University School of Medicine (203)764-8106
    DC Washington Georgetown University (202)687-0413
    DC Washington Howard University (202)865-3776
    FL Jacksonville Mayo Clinic, Jacksonville (904)953-7989
    FL Tampa University of South Florida – Health Byrd Alzheimer Institute (813)974-4904
    IL Chicago Rush University Medical Center (312)563-4111
    IL Chicago Northwestern University (312)503-2486
    IN Indianapolis Indiana University (317)963-7418
    KS Kansas City University of Kansas (913)945-7676
    KY Lexington University of Kentucky (859)323-3145
    MA Boston Brigham and Women’s Hospital (617)732-8085
    MD Baltimore Johns Hopkins University (410)550-9053
    MN Rochester Mayo Clinic, Rochester (507)293-4726
    MO St. Louis Washington University, St. Louis (314)286-2683
    NC Winston-Salem Wake Forest University Health Sciences (336)713-8847
    NY New York Mount Sinai School of Medicine (212)659-8885
    NY New York New York University Medical Center
    NY Rochester University of Rochester Medical Center (585)760-6562
    OH Cleveland Case Western Reserve University (216)464-6474
    OR Portland Oregon Health & Science University (503)494-9399
    RI Providence Rhode Island Hospital (401)444-2484
    TX Dallas University of Texas, Southwestern MC at Dallas (214)648-9331
    TX Houston Baylor College of Medicine (713)798-4734
    WA Seattle University of Washington (206)764-2339
    REF: AfricanAmericaUSAgainstAlzheimer’s Website 2014

  33. The A4 Study

    What do Participants Do?
    Read and sign a consent form.
    Give family and medical History.
    Answer questions that test your memory, thinking, mood, and concentration.
    Complete a brief neurological examination.
    Provide a blood, urine and lumbar fluid sample.
    Receive a free once a month IV of the treatment or placebo for 39 months
    Receive a free ECG (a look at your heart)
    Receive a free PET scan and MRI (pictures of your brain)
    Have a study partner- someone who you see regularly who can answer questions about your health and memory function
    Why is this Study Important?
    Alzheimer’s-related brain changes take place years, even decades before symptoms appear. Scientists are hopeful that if they can intervene at the earliest possible stage, they may be able to stop or slow the progression of the disease. The A4 Study is an important clinical trial in several respects. First, it will see if they can prevent memory loss from progressing into Alzheimer’s disease by treating older individuals who may be at slightly higher risk. Secondly, they have an ambitious goal of screening at least 1000 African Americans for the study to get the 100 who are the perfect fit. This is absolutely essential if we are to find out why African Americans are twice as likely to get Alzheimer’s disease. Less than 5 percent of those who participate in clinical trials are African Americans despite the fact that we make up over 13 percent of the U.S. population. To ensure that Alzheimer’s treatments are both safe and effective for all, including African Americans, we must significantly increase the number of minority research volunteers.
    What are the study facts?
    Study participation is voluntary.
    All information is confidential.
    There is no cost to the family.
    A participant may withdraw from the study at any time.
    The A4 study lasts for three and one half years and participants will be required to visit the research site once a month.
    Monetary compensation is offered at many sites as well as reimbursement of transportation costs
    Who can join the Study?
    You may be eligible to join the A4 Study if you:

    Are 65 to 85 years old
    Have normal thinking and memory abilities for your age
    Have a study partner (someone who has weekly contact with you and is willing to answer questions once a year).
    Enroll in the Study Today!

    Who is sponsoring the study?
    The A4 study is a landmark public-private partnership, funded by the National Institute on Aging, Eli Lilly and Company, and several philanthropic organizations. The A4 study is coordinated by the Alzheimer’s Disease Cooperative Study, located at the University of California, San Diego.
    State City Site Contact Telephone Email
    AL Birmingham University of Alabama, Birmingham Denise Ledlow (205)934-6223 pdledlow@uab.edu
    AZ Phoenix Banner Alzheimer’s Institute Candy Monarrez (602)839-6939 candy.monarrez@bannerhealth.com
    AZ Sun City Banner Sun Health Research Institute Zoran Obradov (623)832-6526 zoran.obradov@bannerhealth.com
    CA Irvine University of California, Irvine Catherine M McAdams-Ortiz (949)824-8726 cmcadams@uci.edu
    CA Irvine University of California, Irvine – Brain Imaging Center Andrea Sabrina Weideman (714)456-5697 andrea.weideman@uci.edu
    CA Irvine UC Irvine – Institute for Memory Impairments & Neurological Disorders Beatriz Yanez (949)824-3250 byanez@uci.edu
    CA La Jolla University of California, San Diego Helen Vanderswag (858)246-1245 hvanderswag@ucsd.edu
    CA Los Angeles University of Southern California Mauricio Becerra (323)442-7594 mjbecerr@usc.edu
    CA Los Angeles University of California, Los Angeles Celine Ossinalde (310)794-6191 cossinalde@mednet.ucla.edu
    CA Palo Alto Stanford University School of Medicine Emily Gere (650)852-3287 emilyg@stanford.edu
    CA Sacramento University of California, Davis Katharine Vieira (925)372-2485 kevieira@ucdavis.edu
    CA San Francisco University of California, San Francisco Emmeline L. Chuu (415)476-0671 echuu@memory.ucsf.edu
    CT New Haven Yale University School of Medicine Barbaralynn Moseman (203)764-8100 barbaralynn.moseman@yale.edu
    DC Washington Georgetown University Erica Christian (202)687-8800 ec912@georgetown.edu
    DC Washington Howard University Oludolapo O. Ogunlana (202)865-3776 oogunlana@howard.edu
    FL Jacksonville Mayo Clinic, Jacksonville Dana Lynn Haley (904)953-9680 haley.dana@mayo.edu
    FL Miami Beach Wien Center for Clinical Research Maria T Greig-Custo (305)674-2121 Ext. 54480 Maria.Greig-Custo@msmc.com
    FL Palm Beach Premiere Research Institute Teresa Villena (561)845-0500 ext 124 tvillena@aol.com
    FL Tampa University of South Florida – Health Byrd Alzheimer Institute Jill aka Ardila Smith (813)974-4355 jsmith10@health.usf.edu
    GA Atlanta Emory University Gail Schwartz (404)728-6395 gschwar@emory.edu
    IA Iowa City University of Iowa Karen Ekstam Smith (319)353-5158 karen-ekstam@uiowa.edu
    IL Chicago Northwestern University Kristine Lynn Lipowski (312)503-2486 k-lipowski@northwestern.edu
    IL Chicago Rush University Medical Center Lindsay M Pluff (312)563-4111 Lindsay_M_Pluff@rush.edu
    IN Indianapolis Indiana University Nancy McClaskey (317)963-7429 nmcclask@iupui.edu
    KS Kansas City University of Kansas Becky Rebecca Jo Bothwell (913)945-5033 rbothwell@kumc.edu
    KY Lexington University of Kentucky Heather D Nichols (859)323-3145 hdnich2@email.uky.edu
    MA Boston Brigham and Women’s Hospital Alison Pietras (617)278-0376 apietras@partners.org
    MA Boston Boston University Jane Mwicigi (617)638-5670 jmwicigi@bu.edu
    MD Baltimore Johns Hopkins University Julia J Pedroso (410)550-9054 jpedroso@jhmi.edu
    MI Ann Arbor University of Michigan, Ann Arbor Joanne L Lord (734)647-7760 jllord@umich.edu
    MN Rochester Mayo Clinic, Rochester Sara S. Mason (507)293-4711 Mason.Sara@mayo.edu
    MO St. Louis Washington University, St. Louis Pamela Millsap (314)286-2363 millsapp@abraxas.wustl.edu
    NC Winston-Salem Wake Forest University Health Sciences Erin caulder (336)713-8847 ecaulder@wakehealth.edu
    NE Omaha University of Nebraska Medical Center Barbara Bayer (402)552-6005 blbayer@unmc.edu
    NV Las Vegas Cleveland Clinic Lou Ruvo Center for Brain Health Michelle B Sholar (702)483-6026 sholarm@ccf.org
    NY Amherst Dent Neurologic Institute Caroline R Kumm (716)819-4117 ckumm@dentinstitute.com
    NY Amherst Dent Neurologic Institute Michelle Rainka (716)250-2038 mrainka@dentinstitute.com
    NY New York Weill Cornell Memory Disorders Program Erin Hibbard (212)746-6580 erh2009@med.cornell.edu
    NY New York Mount Sinai School of Medicine Michael T Kinsella (212)659-8883 michael.kinsella@mssm.edu
    NY New York Columbia University Ruth Tejeda (212)305-7661 rbt41@columbia.edu
    NY New York New York University Medical Center Christina Michel (212)263-0771 Christina.michel@nyumc.org
    NY Orangeburg Nathan Kline Institute for Psychiatric Research Vita Pomara (845)398-5582 vpomara@nki.rfmh.org
    NY Rochester University of Rochester Medical Center Susan Salem-Spencer (585)760-6562 susan_salem-spencer@urmc.rochester.edu
    OH Cleveland Case Western Reserve University Maria Gross (216)464-6454 Maria.Gross@uhhospitals.org
    OK Tulsa Tulsa Clinical Research Rita Smith (918)743-2349 rita.smith@tulsaclinicalresearch.com
    OR Portland Oregon Health & Science University Elisabeth Loree (503)494-7615 loree@ohsu.edu
    PA Philadelphia University of Pennsylvania Jessica Nunez-Lopez (215)662-4379 Jessica.Nunez@uphs.upenn.edu
    PA Philadelphia Drexel University College of Medicine Kate Joan Bowen (215)762-1776 kbowen@drexelmed.edu
    PA Pittsburgh University of Pittsburgh Katy Marie Zorich (412)692-2730 orchowskik3@upmc.edu
    RI Providence Rhode Island Hospital Michele Astphan (401)444-2484 mastphan@lifespan.org
    RI Providence Butler Hospital Memory and Aging Program Diane Monast (401)455-6403 dmonast@butler.org
    TX Dallas University of Texas, Southwestern MC at Dallas Kathleen Koch (214)648-9343 kathleen.koch@utsouthwestern.edu
    TX Houston Baylor College of Medicine Kimberley D Brown (713)798-5385 kdbrown@bcm.edu
    UT Salt Lake City University of Utah Josh Amaro (801)581-3986 Josh.Amaro@hsc.utah.edu
    WA Seattle University of Washington Anita Ranta (206)764-2339 rantaa@uw.edu
    WI Madison University of Wisconsin Zachary Zugin (608)256-1901 Ext. 1640 zcz@medicine.wisc.edu
    Canada Clinical Study Research Sites Participating in the A4 Study:

    Site City State Contact Telephone Email
    University of British Columbia, Clinic for AD & Related Vancouver British Columbia Benita Mudge (604)822-7990 benita.mudge@vch.ca
    Parkwood Hospital London Ontario Patricia Sargeant (519)685-4292 Ext. 42896 Patriciarsargeant@sjhc.london.on.ca
    Sunnybrook Health Sciences Centre Toronto Ontario Joanne Lawrence (416) 480-6108 joanne.lawrence@sunnybrook.ca
    Toronto Memory Program Toronto Ontario Atif Shaikh (416)386-9761 ashaikh@memorydisorders.ca
    Australia Clinical Study Research Sites Participating in the A4 Study:

    Site City State Contact Telephone Email
    University of Melbourne Melbourne Victoria Maree Mastwyk +61 3 9389 2943 maree.mastwk@florey.edu.au

    TERMS | PRIVACY | CONTACT US
    REF: AFRICANAMERICANSUSAGAINSTALZHEIHER’ Website 2014

  34. NCA&T

    What do Participants Do?
    Read and sign a consent form.
    Give family and Medical History.
    Answer questions that test your memory, thinking, mood, and concentration.
    Complete a brief neurological examination.
    Give permission to review the medical records of the individual with memory and thinking problems.
    Provide a blood sample.
    Receive monetary compensation
    Why is this Study Important?
    Alzheimer’s disease occurs more often in African Americans than in Caucasians. By studying many people with Alzheimer’s disease, researchers at North Carolina A&T State University and the John P. Hussman Institute for Human Genomics hope to find genes (inherited material) that may cause Alzheimer’s disease in African-Americans. The goals of this research study are to find the genetic causes of Alzheimer’s disease and to improve Alzheimer’s tests and treatments for African-Americans.
    What are the study facts?
    Study participation is voluntary.
    Joining the study will not affect your healthcare or insurance.
    All information is confidential.
    There is no cost to the family.
    A participant may withdraw from the study at any time.
    Travel to the research center is not required to participate in the study.
    Research progress will be sent to study participants in periodic newsletters.
    Monetary Compensation will be provided
    Who can join the Study?
    African American men and women age 60 years and over, are needed to partake in this study. Both men and women with severe memory loss and thinking problems, dementia, or Alzheimer’s disease are needed to participate. The study seeks 2000 individuals’ to partake in the study. In addition, based on the family tree, selected family members may also be asked to participate in the study.
    For more information or to enroll your family in the African American Alzheimer’s disease research study at North Carolina A&T State University please contact:

    Takiyah D. Starks, MS, Clinical Research Study Coordinator
    North Carolina A&T State University
    Department of Biology
    Yanceyville Center
    1601 East Market Street
    Greensboro, NC 27411
    Phone: 1.888.248.2808
    Email: tdstarks@ncat.edu
    Dr. Goldie S. Byrd leads the African American Alzheimer’s disease research study. She is a professor in the Department of Biology and Dean of the College of Arts & Sciences at North Carolina A&T State University.
    REF: AFRICANAMERICANSUSAGAINSTALZHEIMER’S website 2014

  35. EXERT Study

    National Exercise Trial in Adults with Mild Cognitive Impairment

    What do Participants Do?
    Read and sign a consent form.
    Describe your family and medical history to a member of the study team.
    Answer questions that test your memory, thinking, mood, and concentration.
    Participate in a supervised exercise program at a community facility (like the YMCA) 4 times per week for 12 months, and then continue exercising on your own for an additional 6 months.
    Visit the clinic for appointments at least 8 times over the course of 18 months.
    Receive a free ECG (more commonly known as EKG) which is a painless look at your heart, a free MRI scan (a painless way to take a picture of your brain), and a lumbar puncture (a small needle inserted into your lower back to remove a small amount of spinal fluid that will help us better understand the impact of exercise on the brain).
    Provide urine and blood for specific tests to assess the health of the body and brain.
    Why Is This Study Important?
    Exercise is highly recommended to maintain physical function and reduce risk of a number of age-related medical conditions like cardiovascular disease and diabetes. We do not yet know if exercise also has positive effects on the brain. This study will examine whether exercise can improve measures of brain health in adults with mild memory impairments who are at increased risk of cognitive decline and therefore, dementia. The trial will recruit older volunteers who have a mild memory problem and who do not routinely exercise. Volunteers will participate in an 18-month program in which one group will complete high-intensity aerobic activities and the other group will complete a lower intensity program involving stretching and balance activities. Cognitive testing and other assessments of brain health will provide important information about whether physical exercise can improve brain function and slow progression to dementia.
    What Are the Study Facts?
    Study participation is voluntary.
    Joining the study will not affect your healthcare or insurance.
    All information is confidential.
    There is no cost to the family.
    A membership to an exercise facility in your community will be provided to you at no charge.
    Participants may withdraw from the study at any time.
    Who Can Join the Study?
    You may be eligible to join EXERT if you:

    are 60-85 years old
    have concerns about your memory
    are not taking medications for diabetes
    do not currently exercise
    can commit to the 18-month program and are willing to complete EITHER the low-intensity OR the high-intensity exercise program
    have a partner who knows you well who can attend all clinic appointments
    are not planning on leaving your local area for more than 2 weeks at a time for the next 18 months
    have had a stable medical condition for at least 3 months
    have not had any changes to your medications over the last 4 weeks
    are willing and able to come to the clinic for all assessments (for example – physical exam, blood and urine collection, cognitive testing, brain imaging, and lumbar puncture)
    are fluent in English or Spanish
    Who Is Funding the Study?
    EXERT is funded by the National Institute on Aging and the Brain Research Foundation. It will be coordinated by the Alzheimer’s Disease Cooperative Study, located at the University of California – San Diego, and with the assistance of Wake Forest University in Winston-Salem, NC.
    *Enrollment will start in the fall of 2014, so keep checking this website to see if there is a participating clinic site in your area*

    TERMS | PRIVACY | CONTACT US
    REF:AFRICANAMERICANSUSAGAINSTALZHEIMER’S website 2014

  36. Understanding Alzheimer’s

    What is Alzheimer’s disease?
    Alzheimer’s disease is the most common form, accounting for as much as 70 percent, of “dementia.” The disease destroys parts of the brain that control memory, thinking, language and judgment. Alzheimer’s symptoms appear gradually and get worse over time. Symptoms usually start with difficulty remembering new information. In advanced stages, symptoms include confusion, mood and behavior changes. In advanced Alzheimer’s, the person is unable to perform basic life tasks and care can place great demands of time and cost on families and caregivers. There is no cure for Alzheimer’s, but recent advances in research have provided treatments that can temporarily slow the worsening of symptoms and improve quality of life.

    Other forms of dementia include:

    Vascular dementia

    Vascular dementia, considered the second most common form of dementia after Alzheimer’s disease, results from injuries to the vessels supplying blood to the brain, often after a stroke or series of strokes. Vascular dementia and vascular cognitive impairment arise as a result of risk factors that similarly increase the risk for stroke) including atrial fibrillation, hypertension, diabetes, and high cholesterol. The symptoms of vascular dementia can be similar to those of Alzheimer’s, and both conditions can occur at the same time. Symptoms of vascular dementia can begin suddenly and worsen or improve during one’s lifetime.

    Lewy body dementia

    Lewy body dementia (LBD) is another common brain disorder in older people. LBD is caused by abnormal deposits of a protein called alpha-synuclein in the brain. These deposits, called Lewy bodies, can lead to problems with thinking, movement, behavior, and mood. For example, symptoms may include changes in alertness and attention, hallucinations, tremor, muscle stiffness, sleep problems, and memory loss.

    Front temporal Dementia

    Frontotemporal dementia (FTD) is a rare disorder that affects the front (frontal lobes) and the sides (temporal lobes) of the brain. Because these regions often, but not always, shrink, brain imaging can be useful in diagnosis. There is no specific abnormality associated with all cases of FTD. In one type called Pick’s disease, there are abnormal microscopic deposits called Pick bodies, but these are not always present.

    How does Alzheimer’s impact African Americans?
    Alzheimer’s is a serious disease. It is the only disease in the top 10 causes of death with no effective treatment or cure. African Americans are twice as likely to develop Alzheimer’s as non-Hispanic white Americans. Alzheimer’s is the 6th leading cause of death for all Americans- bypassing cancer and diabetes- and the 4th leading cause of death for older African Americans- and the numbers are growing! Often people think of memory loss and senility as natural and normal aspects of aging. It is not. Unfortunately, as a result, African-Americans who are more likely to get Alzheimer’s are often not diagnosed and do not receive the treatment and care they need.

    By working together, standing up, and speaking out, we and the researchers we work with believe we can find a treatment and possible cure for Alzheimer’s disease. This means not only seeking additional fund for research but also raising our hands to be part of the research solution by volunteering for clinical trials.
    REF: AFRICANAMERICANSUSAGAINSTALZHEIMER’S website 2014

  37. The race for next-generation Alzheimer’s drugs
    Bertha Coombs | @BerthaCoombs
    Thursday, 5 Sep 2013 | 2:30 PM ET
    CNBC.com
    106
    SHARES

    COMMENTSStart the Discussion

    Christian Rummel | E+ | Getty Images
    An Alzheimer’s patient
    Dick Purdy was in his mid-70s when he was diagnosed with Alzheimer’s disease. Now 82, the former surgeon has steadily declined, but at times his insights still seem sharp.

    “It just never occurred to me someday I would be a patient,” he said, sitting in his living room in Connecticut.

    For Purdy’s wife, Gloria, the goal now is to keep him living at home as normally as possible and to get him enrolled in a clinical drug trial. Even if the treatment doesn’t help his memory, she says, taking part in a study gives them both a sense of purpose.

    “We’ve been part of the medical community all our adult lives,” the 74-year-old retired nurse said. “We are not going to be part of the cure, clearly—at least we can participate in the work that’s being done.”

    (Read more: Aging baby boomers may find long-term care elusive)

    After more than two decades of research, a treatment that slows or actually reverses the progression of Alzheimer’s has proved elusive, in part because researchers still have not pinpointed its cause.

    “The scientific community really doesn’t understand the disease completely,” said Morningstar pharmaceutical analyst Damien Conover. “It’s an area where the science still needs to evolve.”

    Big need, big opportunity, big risk
    The need for an effective treatment is massive and growing. Dementia affects 5 million-plus people in the U.S. and over 35 million worldwide, according to Alzheimer’s Disease International. With the global population aging, those numbers are expected to triple by 2050.

    The handful of Alzheimer’s drugs on the market, approved more than a decade ago, treat the symptoms of cognitive decline. They include Aricept from Pfizer, Namenda from Forest Laboratories and Exelon from Novartis. Their combined sales last year just topped $6 billion, according to BCC Research.

    Analysts estimate that a treatment for the disease itself could generate sales of $20 billion or more. And getting there is a risky and costly venture.

    The Alzheimer’s contenders

    Many of the next-generation drugs aim to block the production of so-called amyloid deposits, which are present in plaque buildup in the brain that’s associated with Alzheimer’s. It’s still unclear whether the deposits are a cause or by-product of dementia. What is increasingly clear is that success with these new drugs is hard to come by.

    In late-stage trials last year, a highly anticipated drug that was a joint effort of Pfizer, Johnson & Johnson and Elan did not stop development of amyloid deposits. J&J took a $700 million charge for the failure, while Elan wrote off more than $100 million for the value of its stake in the drug, called bapineuzumab.

    The failure also caused the three drugmakers to walk away from attempts to find an Alzheimer’s treatment. But others remain in hot pursuit.

    More than 80 treatments are in development—most of them early to mid-stage, according to the Pharmaceutical Research and Manufacturers of America.

    Analysts say Eli Lilly and Merck are the biggest contenders working on next-stage drugs that could make it to market by the end of the decade.

    Eli Lilly reported this summer that its stage-three trial of solanezumab, an anti-amyloid, did not slow dementia in Alzheimer’s patients with significant memory loss. But the company is continuing to pursue the drug because the data indicate that it slowed cognitive decline in early-stage patients by as much as 34 percent.

    (Read more: Lilly plans Alzheimer’s disease study after prior failures)

    “We have new data that suggests that some of these proteins that are changing the brain may start anywhere between 15 and 20 years before the clinical onset,” said Dean Hartley, the director of Science Initiatives at the Alzheimer’s Association.

    “We’ve started to realize that some of these treatments that have been used in clinical trials may actually be more effective if we use them earlier in the disease,” he said.

    Analysts are also watching an experimental drug from Merck, known as a BACE-inhibitor, that targets an enzyme leading to amyloid buildup. The question is whether Merck can build on research where others have failed.

    “BACE inhibitor theory has a history of some setbacks, because Bristol-Myers [Squibb] and Eli Lilly also had BACE inhibitors, and they have discontinued development,” said Conover at Morningstar.

    The fear is that if the next round of late-stage trials doesn’t go well, companies may scale back their investments in Alzheimer’s until signs point to another breakthrough.

    (Read more: Planning for long-term care can have a big payout)

    The government has also committed to expanding research. In 2012, the Obama administration pledged $100 million in additional funding. But with costs for a single drug running in the hundreds of millions, the private sector must drive discovery, said Hartley at the Alzheimer’s Association.

    “Companies are an important aspect of us finding the solution to this disease,” Hartley said.

    The new drugs may be too far in the future to make a difference to Dick Purdy’s memory. His wife Gloria, sitting by his side on their couch, says that for now, she tries to enjoy the good days they have together.

    “It simply is a day at a time, but it’s not an unpleasant day at a time,” she said. At which point Dick leaned in and whispered in her ear.

    “Dick says it’s because he’s charming,” she relayed with a smile.

    —By Bertha Coombs. Follow her on Twitter: @berthacoombs.

    Bertha Coombs
    CNBC Reporter

  38. Caring for a Person with Alzheimer’s Disease or Other Dementia

    Caregiver Support is a Phone Call Away
    Talk to caring people for practical caregiving information and help finding local resources/services.

    Contact your local Family Caregiver Support Program.

    If the person you care for asks questions repeatedly, has trouble performing simple tasks, or forgets recent events, he or she may have a form of dementia.

    There are several causes for dementia, so you should have the person diagnosed by a doctor.

    Some dementia may be caused by factors that can be treated, such as drug interactions, severe diabetes, vitamin deficiencies, or depression.

    The most common kind of dementia is Alzheimer’s Disease. It is not curable.

    There are many helpful resources for family caregivers coping with dementia, including:

    Websites and books on dementia
    Caring for a person with dementia
    Activity ideas and tips for people with dementia
    Caregiver support groups
    Electronic locator bracelets
    Services and programs that provide help with care
    Other Resources
    Learn More
    The website MedlinePlus includes easy to understand information and illustrations on the causes, risks, symptoms, tests, treatment, and additional references on different types of dementia and over 4000 other diseases.

    Websites and Books on Dementia

    Alzheimer’s Association Western & Central WA Chapter
    or call their 24-hour helpline to talk with someone who can help you get services and support.
    24-Hour Toll-free: 1-800-848-7097 or 206-363-5500
    Alzheimer’s Association Inland Northwest Chapter
    (counties east of the Columbia River)
    or call their 24-hour helpline to talk with someone who can help you get services and support.
    24-Hour Toll-free: 1-800-272-3900 or email at InlandNW@alz.org.
    Alzheimer’s Association (National)
    Alzheimers.gov
    An official U.S. government website managed by the US Department of Health and Human Services
    Alzheimer’s Disease Education and Referral Center (ADEAR) The Alzheimer’s Disease Education and Referral (ADEAR) Center Web site will help you find current, comprehensive Alzheimer’s disease (AD) information and resources from the National Institute on Aging (NIA).
    Helpquide.org is a website for the general public that includes detailed information on the signs, symptoms and treatment of a variety of different types of dementia and detailed caregiving information.
    Books

    Did You Know?
    Alzheimer’s Association, Safe Return Program
    The Alzheimer’s Association Safe Return® is a nationwide identification, support and enrollment program that provides assistance when a person with dementia wanders and becomes lost.

    If an enrollee is missing, one call immediately activates a community support network. Visit the website or call toll-free 1-888-572-8566.

    Taking Care of Aging Family Member: A Practical Guide. Wendy Lustbader and Nancy Hooyman. (paperback) New York: Free Press, Rev/Ex edition (1994).
    Counting on Kindness, Dilemmas of Dependency. Wendy Lustbader. (paperback) New York: Free Press (1991).
    The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life. Nancy L. Mace, and Peter V. Rabins. Mass Market Paperback (2001)
    The Forgetting. Alzheimer’s: Portrait of an Epidemic. David Shenk, New York: Doubleday (2001).
    Back to top

    Websites for Caring for a Person with Dementia

    Caring for a Person with Alzheimer’s Disease: Your Easy-to-Use Guide from the National Institute on Aging
    Helping Memory-Impaired Elders: A Guide for Caregivers, (PDF) by V.I. Schmall and M. Cleland. Discusses dementia in later life and ways to cope more effectively with the resulting changes. Provides general care and management guidelines and how to handle specific problems such as driving, wandering, money management, hallucinations, eating, incontinence, hiding of items, and communication.
    Partnering With Your Doctor: A Guide for Persons with Memory Problems and Their Caregivers from the Alzheimer’s Association.
    Caregiver’s Guide to Understanding Dementia Behaviors from the Family Caregiver’s Alliance
    Alzheimer�s Disease Caregiving: A Resource List This resource list gives an overview of some of the many books, brochures, videotapes, audiotapes, and newsletters about Alzheimer’s disease and other types of dementia that are available.
    Caregiver Stress Check from The Alzheimer’s Association. Includes a short quiz and then a list of personalized resources.
    Prepare to Care – A Planning Guide for Families – This guide from AARP is designed to help you and other family members discuss and create a caregiving plan for yourself or an aging parent, other relative, close friend, or neighbor.
    Lotsa Helping Hands – “What can I do to help?” Create a free web site to help organize family and friends who want to help.
    Back to top

    Activity Ideas and Tips for People with Dementia

    Activities: a guide for caregivers of people with dementia a booklet from Alzheimer’s Scotland explores the many ways to plan and provide appropriate activities.
    Recreationaltherapy.com : Activity ideas from recreational therapists.
    Zarcrom.com : Information about considerations in planning activities including suggestions for how to make activities meaningful and appropriate.
    Activity Ideas that Work: This article and others on this website lists activity ideas including suggested material lists. For those working in a care facility, the site also includes instructions for implementing activity programs and sample activity calendars.
    Activities at Home: Planning the Day for the Person with Dementia from the Alzheimer’s Association
    Back to top

    Caregiver Support Groups

    Surveys of caregivers report that one of the most stressful parts of caregiving is the feeling of isolation that caregiving often brings.

    Support groups can provide a sense of connection and:

    Offer an opportunity to share your thoughts, ideas, and suggestions.
    Compare notes and learn from others in a similar situation.
    A safe place to share feelings honestly, without having to be strong or put up a brave front for the family. No one understands as well as a fellow caregiver.
    Today, there are also internet support groups that make it easy to connect with others without having to leave home and can fit around your schedule.

    Electronic Locator Bracelets

    Alzheimer’s Association, Safe Return Program
    The Alzheimer’s Association Safe Return® is a nationwide identification, support and enrollment program that provides assistance when a person with dementia wanders and becomes lost. If an enrollee is missing, one call immediately activates a community support network. Visit the website or call toll-free 1-888-572-8566.
    The Alzheimer Society of Washington in Whatcom County operates a “Find Me Safe” network that uses electronic tracking bracelets for those who wander or get lost. Call 360-671-3316 for more information.
    Find a Support Group

    Caregiver Support is a Phone Call Away
    Talk to caring people for practical caregiving information and help finding local resources/services.

    Contact your local Family Caregiver Support Program.

    Staff with your local Family Caregiver Support Program can help you find a support group where you live. Find your local Family Caregiver Support Program. Learn more about other services offered by the Family Caregiver Support Program.

    The following sponsor support groups.

    Alzheimer’s Association in western and central WA or counties east of the Columbia River.
    Alzheimer Society of Washington for Whatcom County.
    Back to top

    Services and Programs that Provide Help with Care

    This website has several links to help. Learn more about:

    What you need to know to get started finding care services.
    Care that can be provided a person’s home.
    Other residential care housing if they can no longer live at home.
    Legal planning and advance directives.
    Finding other benefits the person may have.
    Back to top

    Other Resources

    The Alzheimer’s Association has a free on-line tool called CareFinder to help people with Alzheimer’s and their families identify the right care options for the individual. You enter information about a person’s needs, abilities, and preferences, and CareFinder generates a private, customized printout with recommendations and questions to ask when screening a residential care facility (or caregiver).


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