Going the extra mile – or 350 miles – to find a cure

img_3447.jpgHow far would you go to end Alzheimer’s disease? Some climb over 14,000 feet. Others paint. Cindy Reagan likes to go the extra mile. This year, it’s 350 miles. To be precise: the Camino Portuguese pilgrimage from Porto, Portugal, to Santiago, Spain.

This Parker resident, who also has volunteered in the Colorado Chapter’s Memories in the Making (MIM) program for the past 10 years, walks in memory of her mother and in honor of the MIM artists who inspire and occasionally counsel her.

Her departure on July 9 will mark the third pilgrimage that Cindy has undertaken to raise funds for and awareness of Alzheimer’s disease. Her first, in 2012, followed a longer route through Spain that covered 500 miles. Then, in 2016, she discovered the “more relaxed” 350-mile route through Portugal that gives her more time to converse with fellow travelers from around the world, and to educate them about Alzheimer’s resources.

“I was surprised to meet people in 2016 who had no idea that there were resources so readily available to them in their own country and their own language,” Cindy said. “I was making a name for myself on the Camino as people heard me talking about Alzheimer’s.”

This year, Cindy has a $3,000 fundraising goal for her journey, and she is going armed with information about global Alzheimer’s resources with information for fellow pilgrims from the United Kingdom, Spain, Portugal, France, Germany, Sweden and other nations she expects to encounter.

Cindy met Ana from Sweden on her last trek. Ana had heard of Cindy from other pilgrims, and they shared a meal in a café.

“She told me that her father had (Alzheimer’s),” Cindy said. “We talked and she cried. It was a meaningful visit, and it made the remaining miles much easier.”

Later, another women approached Cindy and mentioned that she’d overheard her conversation with Ana.

“She left saying that today was the day she was walking for her mother,” she said. “Pretty emotional stuff.”

Motivated to undertake a pilgrimage

Cindy’s motivation for her long-distance travels comes from two sources. First, she saw her own mother diagnosed with Alzheimer’s at age 62. Both Cindy and her father took advantage of free classes and information from the Alzheimer’s Association to help them better understand what the disease was doing to their loved one.

“My dad did it right because of all the information he learned in those classes,” Cindy said.  “I think it made it easier for him because he was able to understand what was best for my mom. He is my great example of what those education and support classes can do for a caregiver.”

Cindy advises that caregivers take advantage of Alzheimer’s Association programs because they help people better anticipate the challenges the disease will pose.

“My advice to everyone going through this would be to take advantage of all these resources,” she said. “It can literally give them a longer life that is more accepting, more at peace and less guilt-ridden.”

The MIM connection

In 2008, Cindy reconnected with the Alzheimer’s Association as a volunteer with the Memories in the Making (MIM) art program that enables persons with dementia to express their unspoken or recessed memories through drawing. Today, she works weekly with three different classes at the Tech Center, Greenwood Village and Lowry.

“It’s hard to not get attached to a lot of the artists,” she said. “I tend to forget that it’s a terminal disease and their deaths are very difficult.”

Cindy mentioned one interaction with an artist that left a deep impression on her.

“I’ve learned that a lot of the wisdom of the MIM artists’ own life experiences can still be there,” she said. “I sat with a woman a few days before she died and she wanted to know more about me. I told her about a situation I was having with my son. She told me bluntly how to handle it, which was hard to take! I did though, and it’s worked ever since!”

How MIM helps the artists

Margie - MIM artistWith 10 years’ experience working with the MIM artists, Cindy has come to appreciate the benefits that the artists derive from the process of tapping their recessed memories to create art.

“I worked very closely with a woman who would come to the group somewhat down but would immediately start an incredible painting,” said Cindy. “Her pieces of inspiration would eventually take shape as a memory. One day she came in with a smile on her face and, as always, sat down and painted a picture of the mountains with a sunrise. After she was finished, she talked for an hour about how she could now paint a sun because a man’s load had been lifted off of her shoulders and she was now carrying just a woman’s load.”

Cindy was touched when the woman said she “was free.” Her family could see the change in the woman, but they didn’t know the details of the story.

“This is why MIM works,” Cindy said. “It can give an artist clarity of memories that may never have come to light if they weren’t painting. I can see it in their faces and hear it in their voices when their painting becomes a reality to them. Art is magical!”

Alzheimer’s & Brain Awareness Month: 10 Ways to Love Your Brain

There are two ways to look at June’s commemoration of Alzheimer’s & Brain Awareness Month. First, Alzheimer’s is the sixth-leading cause of death. Currently, 5.7 million people in the U.S., including 71,000 Coloradans, are living with the only major disease without a prevention, treatment or cure. On the other hand, Alzheimer’s Association researchers remind people that the steps they take to ensure a healthy heart and body are keys to maintaining a vibrant brain, and may provide some defense.

“Research on cognitive decline is still evolving,” said Amelia Schafer, interim executive director of the Alzheimer’s Association Colorado Chapter. “But there are proactive steps people can take to support the health of our brain. Certain healthy behaviors known to combat cancer, cardiovascular disease and diabetes are believed to also reduce the risk of cognitive decline. These include staying mentally active, engaging in regular physical activity, and eating a heart-healthy diet that benefits your body and brain.”

Coloradans are supporting the search for a cure

The search for a cure for Alzheimer’s is a global initiative that has roots in Colorado. Recently, the Colorado Chapter of the Alzheimer’s Association committed $1.1 million in locally raised dollars to fund seven promising young researchers on four continents in their effort to find a cure.

“This is a significant undertaking by the board of directors of the Colorado Chapter to commit more than $1 million to these very promising research projects,” said Heather M. Snyder, Ph.D., senior director of Medical and Scientific Operations for the Alzheimer’s Association. “Efforts like this support the Association’s commitment to research and extend funding to more qualified scientists and proposals.”

How lifestyle changes may reduce Alzheimer’s risk

Research published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, offers 10 tips on healthy lifestyle changes that may reduce the risk of cognitive decline:

1. Break a sweat. Engage in regular cardiovascular exercise that elevates your heart rate and increases blood flow to the brain and body. Several studies have found an association between physical activity and reduced risk of cognitive decline.

2. Hit the books. Formal education in any stage of life will help reduce your risk of cognitive decline and dementia. For example, take a class at a local college, community center or online.

3. Butt out. Evidence shows that smoking increases risk of cognitive decline. Quitting smoking can reduce that risk to levels comparable to those who have not smoked.

4. Follow your heart. Evidence shows that risk factors for cardiovascular disease and stroke – obesity, high blood pressure and diabetes – negatively impact your cognitive health. Take care of your heart, and your brain just might follow.

5. Heads up! Brain injury can raise your risk of cognitive decline and dementia. Wear a seat belt, use a helmet when playing contact sports or riding a bike, and take steps to prevent falls.

6. Fuel up right. Eat a healthy and balanced diet that is lower in fat and higher in vegetables and fruit to help reduce the risk of cognitive decline. Although research on diet and cognitive function is limited, certain diets, including Mediterranean and Mediterranean-DASH (Dietary Approaches to Stop Hypertension), may contribute to risk reduction.

7. Catch some Zzz’s. Not getting enough sleep due to conditions like insomnia or sleep apnea may result in problems with memory and thinking.

8. Take care of your mental health. Some studies link a history of depression with increased risk of cognitive decline, so seek medical treatment if you have symptoms of depression, anxiety or other mental health concerns. Also, try to manage stress.

9. Buddy up. Staying socially engaged may support brain health. Pursue social activities that are meaningful to you. Find ways to be part of your local community – if you love animals, consider volunteering at a local shelter. If you enjoy singing, join a local choir or help at an afterschool program. Or, just share activities with friends and family.

10. Stump yourself. Challenge and activate your mind. Build a piece of furniture. Complete a jigsaw puzzle. Do something artistic. Play games, such as bridge, that make you think strategically. Challenging your mind may have short and long-term benefits for your brain.

“While the adoption of all of these habits is important in influencing brain health, if it seems overwhelming, start with one or two changes and build on them,” Schafer said. “Some changes may be challenging, while others can be fun. Try to choose activities and foods you enjoy.”

For more information about memory loss and proactive steps that you can take to support brain health, call the Alzheimer’s Association of Colorado’s free 24-hour Helpline at 800-272-3900 or go to www.alz.org/co.

Volunteer Appreciation Month

April was volunteer recognition month, and we had two great celebrations to honor our volunteers!

In Denver:

30813818_10156539564943729_5613453565604093202_o.jpgDenver staff and volunteers gathered at the Butterfly Pavilion in Westminster to recognize 10 volunteers for their notable service during the year past.

“We have so many outstanding volunteers that it is challenging to single out just a few,” said Amelia Schafer, interim executive director of the Colorado Chapter. “But it is important to let these amazing people know how important they are to our mission, and how much we value their contributions.”

Volunteers recognized at the Denver event include:

  • Misty Hart, of Denver, and Katie Kerns, of Denver (“Fantastic Facilitator” Award)
  • Georgina Morrissey, of Boulder (“Boulder Office SPARK” Award)
  • Monica Londoño, of Loveland (“Volunteer with the Most Hats” Award)
  • Mikki MacKenzie, of Louisville (“Multifaceted Mikki” Award)
  • Ian McClintock of Colorado Springs (“Logistics Wizard” Award)
  • Mike Isele of Divide (“Bob the Builder” Award)
  • Stacie Naslund, of Pine (“I Can Do That” Award)
  • Sharon Kelly, of Denver (“Won’t Back Down” Award)
  • Kate Robbins, of Greenwood Village, (“Data Diva” Award)
  • Robin Korn, of Morrison (10 years of volunteering)

Photos of this event can be found on our Facebook page.

In Pueblo:

SoCo Walk Committee for Vol Appreciation storyThe Pueblo staff awarded the 2018 Southern Colorado Alzheimer’s Association Volunteer of the Year to the 2017 Walk to End Alzheimer’s Planning Committee. Felicia Duff, development coordinator, recognized their “tireless efforts to ensure the success of the Walk to End Alzheimer’s and for their commitment to the fight for Alzheimer’s first survivor!  They are our strongest voices, and the faces in the community who are making a difference!” Members of this committee are:

  • Andrea Divelbiss (chair) -Pueblo
  • Denise Phelps – Colorado Springs
  • Cat Robbe – Pueblo
  • EdwinaLea Rogers – Pueblo West
  • Brandi Johnson – Pueblo
  • Shari Johnson – Cañon City
  • Ray Sanchez – Pueblo
  • Barbara Duff – Pueblo
  • Linda Lambert – Pueblo
  • Lynne Lambert Mraovich – Pueblo
  • Monica Drummond – Pueblo
  • Ashley Marshall – Pueblo
  • Rami Stoner – Cañon City

Volunteers from the Southern Colorado Region were recognized for their tenure with the Association:

  • Dawn McDermott of Cañon City (25 years)
  • Judy Noel of Pueblo (5 years)
  • Anne Duran and Jennifer Jurasic of Pueblo (10 years)

2018 Volunteer Assessment

A survey on volunteer motivation was researched, conducted, and analyzed by Mary Dumm, Denver Programs intern, who will graduate with her Master of Social Work degree in June 2018. The survey was conducted in the spring of 2018, and current Colorado Chapter volunteers were asked about their reasons for volunteering, satisfaction with their staff supervisor, and roles they hold as volunteers. Highlights of the results are below:

Sample Size: 95
Gender: 77 females, 18 males
Age: 60-69 was the average age group
Programs: Most common role of volunteers – support group facilitators: 33 individuals
Involved in more than one role: 33 individuals, 35%
Average Length of Time Volunteering: 7 years, 5 months

The Findings:

Reasons For Volunteering:
The top three motivators for individuals, according to the survey, were:

  • I can do something for a cause that is important to me
  • I am genuinely concerned about the particular group I am serving
  • I feel it is important to help others

(This survey was taken out of a study called, Understanding and Assessing the motivations for volunteers: A functional approach [Clary & Snyder, 1998], which sought to explore the motivational foundations of prosocial behavior. This study conducted six investigations to explore motivation on various levels. For the purpose of this study, we chose to only look at the Reasons for Volunteering section.)

Perceived Leadership Satisfaction:

This section measured perceived satisfaction with the volunteers’ staff partner. The research suggested that volunteers are more likely to be satisfied with their organization if they are satisfied with their staff supervisor. There was nothing statistically significant about the findings in this section other than the outpouring of appreciation for the Colorado Chapter’s staff. This survey was taken from a study called, The Perceived Leadership Communication Questionnaire: Development and Validation (Schnieder, Maier, Lovrekovie, & Retzbach 2015), studying employees and their satisfaction with their supervisor. For the purpose of this study, some of the questions were eliminated as they did not apply to Association volunteers.

Statement from the researcher:

The Association would not be able to reach the amount of people it does without dedicated volunteers. Thank you again for participating in this study. Not only was it helpful in completing my program, but it was also helpful in showing the staff of the Alzheimer’s Association how they can continue to be the support you all need!

Report author:

Mary Dumm is an intern at the Colorado Chapter of the Alzheimer’s Association, pursuing her Masters of Social Work at the University of Denver with a summer 2018 graduation date. As a part of her program, Dumm chose to conduct a research project on volunteer satisfaction and retention of the Colorado Chapter. In order to measure this, she looked at an individual’s personal motivation and satisfaction with their staff partner, as these two factors were consistent throughout the research to help predict volunteer satisfaction and intention to stay.

Colorado Volunteer Spotlight: Dennis Fitzpatrick

Name:  Dennis Fitzpatrick

Volunteer role(s):  Data Entry

Years active with the Alzheimer’s Association:  16

Professional background:  Retired, telecommunications company

Dennis photo

Why I volunteer:  I am blessed to be retired and in excellent health.  I bicycle frequently for exercise and to enjoy the outdoors.  My wife and I enjoy travelling.  We especially enjoy spending time with our three young grandsons.  But bicycling, travelling, and spending time with family still leaves me with free time during the week.  In looking for productive use for my time, I found the Alzheimer’s Association where I very much support the work of the organization and where I think highly of the staff and other volunteers.

My favorite moment/experience as an Alzheimer’s volunteer:  I am struck by the artistic talent which the Memories in the Making program unlocks in the minds of people with dementia.

How what I do makes a difference:  The data entry work I do is needed to provide detailed information for a grant, which provides significant funding to the Alzheimer’s Association.

Wheat Ridge Police Division Chief Honored as First Alzheimer’s Hero

Amelia and Lorentz - HA pioneer in the training of Colorado police officers to respond with appropriate skill and understanding during contacts with persons with Alzheimer’s disease and other forms of dementia, Wheat Ridge Police Division Chief Jim Lorentz has been honored with the inaugural “Alzheimer’s Hero Award.”

A 37-year veteran of the Wheat Ridge police department, Lorentz has volunteered with the Colorado Chapter of the Alzheimer’s Association for more than 10 years. He has trained thousands of law enforcement personnel and other first responders to deal more effectively with challenging situations where the individual involved may not be able to react rationally to officers’ questions.

“As police officers, we are seeing more and more of these situations,” said Lorentz, who has provided training to 1,400 Denver Police officers as well as Douglas, Jefferson, Adams, Eagle and Arapahoe County sheriff’s officers and officers from the police departments in Wheat Ridge, Englewood, Lakewood, Avon, Eagle, Vail and Gypsum. “How do we deal with people with afflictions like Alzheimer’s? How do we prevent confrontations? Often, there are better and more effective ways to handle these situations.”

Lorentz also was a driving force behind the Colorado Life Track program, a wandering/safety device system designed for persons living with memory issues to help ensure their safety. The program is offered free of charge for Wheat Ridge residents.
“When I think of heroes and role models for our community, Jim Lorentz is the first person who comes to mind,” said Amelia Schafer, interim executive director of the Colorado Chapter of the Alzheimer’s Association. “We have been blessed to have Jim as a volunteer and partner for so many years. He brings passion, dedication and compassion to his volunteer work with us.”

“It is truly an honor to be recognized by the Alzheimer’s Association with the very first ‘Hero Award,’ said Lorentz. “I think people living with dementia, caregivers, family members, researchers and folks from the Alzheimer’s Association, as well as the cops on the street, are the real heroes. I am proud to be able to provide some tools to law enforcement so that they can help our communities adapt and overcome adversity to find solutions for positive outcomes.”

Alzheimer’s disease and other forms of dementia pose a growing challenge for police and other first responders, as well as healthcare workers and others who may encounter persons living with this disease in daily life.

“Bank tellers. Retail clerks. Coffee shop baristas. There are any number of people who may interact with a person with Alzheimer’s during a typical day,” said Schafer. “Sometimes those encounters can create confusion and fear. That makes Jim Lorentz’s work that much more important to help avoid potential problems.” There are 5.7 million people in the United States living with Alzheimer’s and other forms of dementia,
with 71,000 of them in Colorado.

Celebrating Mother’s Day when mom has Alzheimer’s

Linda Walker & Dottie - Helpline

On Sunday, May 13, 85 million mothers across the United States will be honored on their special day, Mother’s Day. But the day often takes on a different feel for the families of the 5.7 million people – nearly two-thirds of them women – living with Alzheimer’s disease.

“The reality is that this devastating form of dementia disproportionately affects women,” said Danelle Hubbard, director of Family Services for the Colorado Chapter of the Alzheimer’s Association. “Women, often mothers themselves, also account for approximately two-thirds of the more than 16 million volunteer caregivers who provide unpaid care for their loved ones living with Alzheimer’s and other forms of dementia.”

For Denver resident Linda Walker, understanding how her mother will react to situations is important to making the day successful.

“We don’t take my mom out to eat very much anymore,” Walker said. “She doesn’t remember what she likes and doesn’t enjoy it. On Mother’s Day, my husband and I will bring her flowers and a present and some muffins and spend about an hour and a half with her. I know that five minutes after we’re gone, she won’t remember that we were there, but I try to make the time together special.”

Understanding that the person living with Alzheimer’s likely won’t remember the occasion doesn’t mean that families shouldn’t enjoy a suitable celebration.

“I got married in October and I was so happy that my mother could be there,” Walker said. “She doesn’t remember being there, but I can show her pictures of us together. I’m creating memories for me.”

Tailor your own Mother’s Day celebration

How families choose to celebrate Mother’s Day when mom has the disease depends on the person living with Alzheimer’s and the family’s unique situation, but there are ways to tailor the celebration so that it is enjoyed by all, particularly for mom.

“It’s important to recognize that crowds, noise and new environments may cause agitation or anxiety for the person living with dementia,” said Hubbard. “It’s important to be sensitive to mom’s needs and aware of how they are responding to the festivities.”

The Alzheimer’s Association offers families the following tips for celebrating Mother’s Day when mom is living with Alzheimer’s disease:

  • Take a person-centered approach. Focus on what is enjoyable for the person with Alzheimer’s, such as looking at family pictures or enjoying the person’s favorite food. If they get overwhelmed in large groups, a small quiet gathering may be preferable.
  • Keep it simple. Consider a celebration over a lunch or brunch at home or where the person is most comfortable. Ask family or friends to bring dishes for a potluck meal or have food delivered by a local restaurant or grocery store.
  • Join in. If the person with Alzheimer’s lives in a care facility, consider joining in any facility-planned activities.
  • Don’t overdo it. Sticking to the person’s normal routine will help keep the day from becoming disruptive or confusing.Depending on the person’s stamina, plan time for breaks so the person can rest in a quiet area away from noise and crowds.
  • Adapt gift giving. Encourage safe and useful gifts for the person with Alzheimer’s. Diminishing capacity may make some gifts unusable or even dangerous to a person with dementia. If someone asks for gift ideas, suggest items the person with dementia needs or can easily enjoy. Ideas include: an identification bracelet, comfortable clothing, favorite foods and photo albums.
  • Educate yourself/find support. Learn more about Alzheimer’s in the Alzheimer’s and Dementia Caregiver Center at org/care. There you can also find more tips on supporting a family member with Alzheimer’s, join the ALZConnected online community, and find more information about Alzheimer’s Association Colorado Chapter services and programs. Or call the free 24/7 Alzheimer’s Association Helpline at 800-272-3900.

Alzheimer’s statistics: National

  • 7 million people in the U.S. are living with Alzheimer’s or another form of dementia
  • More than 16 million people in the U.S. provided 18.4 billion hours of unpaid care for loved ones in 2017
  • Alzheimer’s is the 6th-leading cause of death in the U.S.
  • Alzheimer’s is the only major disease without a prevention, treatment or cure
  • The total cost of caring for people living with Alzheimer’s will top $277 billion in 2018

Alzheimer’s statistics: Colorado

  • More than 71,000 Coloradans are living with Alzheimer’s or another form of dementia
  • Nearly a quarter of a million Coloradans are providing unpaid care for loved ones living with dementia
  • 1,612 Coloradans died from Alzheimer’s in 2015 (the last year measured)
  • Alzheimer’s deaths have increased 126% since 2000, while deaths from other major diseases have declined

Innovative Alzheimer’s Research Receives $1.1 million in Colorado Funding

Seven innovative Alzheimer’s disease research proposals from promising young researchers will now proceed thanks to $1.1 million in grants from the Alzheimer’s Association, Colorado Chapter.

The Early Career Investigator Grants research proposals are focused on three key areas of Alzheimer’s investigation:

  • Risk of developing the disease
  • Effective diagnosis
  • Therapies for treatment

“This is a very significant undertaking by the board of directors of the Colorado Chapter to commit more than $1 million to these very promising research projects,” said Heather M. Snyder, Ph.D., senior director of Medical and Scientific Operations for the Alzheimer’s Association. “Efforts like this support the Association’s commitment to research and help us extend funding to more qualified scientists and proposals.”

Snyder estimates that only one of every seven grant proposals submitted to the Association receives funding, so it is important that Alzheimer’s Association supporters – both individuals and corporate sponsors – step forward to help fund promising research opportunities.

The proposals approved by the board of the Colorado Chapter all come from Alzheimer’s researchers who are earlier in their careers and who are less likely to receive funding from the National Institutes of Health, which administers U.S. Government funding for research.

“We have a dual commitment,” said Donald Bechter, chair of the Colorado Chapter board. “While part of our focus is on providing information, programs and services to the 71,000 Coloradans living with Alzheimer’s, as well as their quarter of a million volunteer caregivers, we must continue searching for a cure to this horrible disease for the sake of future generations.”

Local donations funding international research

Bechter noted that the seven research grants – spanning four continents – are made possible through the generous donations of individual Coloradans as well as corporate sponsors. This is the Colorado Chapter’s largest financial commitment to research to date and among the largest single research commitments by any Alzheimer’s Association chapter, although Bechter noted there are plans to expand the initiative.

“We know there are other promising, innovative ideas that remain unfunded,” Bechter said. “Our goal is to fund as many of these exciting proposals as we can until a cure is found.”

The Alzheimer’s Association is the largest non-profit funder of Alzheimer’s research in the world, ranking behind only the governments of the United States and China in the total impact of research funding. Since 1982, the Alzheimer’s Association has funded more than 2,700 scientific investigations with $410 million. More than 400 of these research projects are currently active in 19 countries totaling more than $110 million.

Research details

Each of the Early Career Investigator Grants research projects funded by the Colorado Chapter of the Alzheimer’s Association are for between $150,000 and $175,000 over three years. The approved projects are:

  • “Characterization of Tau Astrogliopathy on Aging and Neurodegeneration” by Dr. Roberta Rodriguez of the University of Sao Paulo in Brazil. The project will focus on how age-related tau protein builds up, links with accumulation of a known immune cell (astrocyte) and increases an individual’s risk of cognitive decline.
  • “PET Imaging of Mitochondrial Dysfunction in Tauopathy” by Dr. Anna Barron of the Nanyang Technological University in Singapore. The project will examine a new tool to visualize early biological changes in Alzheimer’s disease.
  • “Noninvasive Biomarker of CSF Production” by Dr. Li Zhao of Beth Israel Deaconess Medical Center in Boston. The project will explore whether a noninvasive test can be used to investigate – or predict – if individuals with Alzheimer’s have lower CSF production than cognitively unimpaired individuals.
  • “Capillary Dysfunction in Alzheimer’s Disease: Pathophysiology and Treatment” by Dr. Eugenio Gutierrez Jimenez of University of Aarhus in Denmark. The project will attempt to determine if capillary dysfunction that results in low oxygen level in the brain is a characteristic of Alzheimer’s and, if so, can it be treated by an FDA-approved drug.
  • “Targeting Dopamine Neuronal Loss in a Model of Alzheimer’s Disease” by Dr. Marcello D’Amelio of the University of Rome. The project will test whether a cancer drug can block or slow down the degeneration of specific brain cell types.
  • “Drug Development of Pro-resolving ALZ/FPR2 Agonists for Alzheimer’s Disease” by Dr. Enza Lacivita of the University of Bari in Italy. The project will explore whether a new potential drug could resolve the associated inflammatory process and lead to increased clearance of beta-amyloid in persons with Alzheimer’s.
  • “Relationships Between Multiple Sensory Impairments and Cognitive Decline” by Dr. Willa Brenowitz at University of California/San Francisco. The project will examine the relationships between multiple sensory impairments and cognitive decline in older adults.

Alzheimer’s stigma a barrier to research & care

Stigma associated with Alzheimer’s disease is an obstacle for individuals seeking information about their risk of developing Alzheimer’s and wanting to participate in clinical studies, according to the results of a national survey about beliefs, attitudes and expectations most often associated with the disease.

Published in Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association, the study of 317 adults found over half of the respondents (55 percent) expect a person with mild cognitive impairment (MCI) or dementia due to Alzheimer’s to be discriminated against by employers and to be excluded from medical decision-making. Almost half expect the person’s health insurance would be limited due to data in the medical record (47 percent), a brain imaging result (46 percent) or genetic test result (45 percent).

Those numbers increased when survey participants were informed that the condition of a fictional person with Alzheimer’s would worsen over time – which is the case since Alzheimer’s is the only leading disease without a prevention, treatment or cure.

In addition, the study authors found that when told the fictional person’s prognosis would improve over time, 24 percent to 41 percent fewer respondents expected that the person would encounter discrimination or exclusion. This suggests to researchers that advances in therapies that improve the prognosis of Alzheimer’s likely would help reduce stigma.

“We found that concerns about discrimination and overly harsh judgments about the severity of symptoms were most prevalent,” said Shana Stites, Psy.D., from the Perelman School of Medicine, University of Pennsylvania. “By understanding what the biggest concerns are about the disease, we can help develop programs and policies to reduce the stigma about Alzheimer’s disease.”

The study participants were asked to react to a fictional description of a person with mild stage Alzheimer’s disease dementia. The study asked respondents to read a vignette and then complete the survey. Three different scenarios were presented: that the person’s condition would worsen, improve or remain unchanged.

The study findings suggest respondents continue to have concerns about documentation in the medical record or test results, despite the fact that there are some protections in place against gene-based health care insurance discrimination through the Genetic Information Nondiscrimination Act of 2008 (GINA).

“The unfortunate stigma associated with Alzheimer’s may prevent people from getting the diagnosis they need or the opportunity for early intervention that could improve their quality of life,” said Maria C. Carrillo, Ph.D., Chief Science Officer, Alzheimer’s Association. “We need to reduce the stigma to encourage persons with mild or even no symptoms of Alzheimer’s disease to enroll in prevention trials to find effective treatments.”

Dr. Carrillo stressed the importance of early diagnosis for people with Alzheimer’s disease and related dementias and their families to provide more time to plan for the future by participating in decisions about treatments, living options, financial and legal matters, as well as building a care team to making it easier to manage the disease.

The benefits of a diagnosis – and going public

DSC_0096For Colorado Springs resident Joanna Fix, the stigma of Alzheimer’s disease was not a factor in her decisions. In fact, public acknowledgement of her Alzheimer’s, starting with the official diagnosis, was a positive change in her life.

“When you don’t know what you’re dealing with, it’s like you’re sitting at a red light forever,” she said. “The worst thing that can happen (for a person living with Alzheimer’s) is not knowing. You have to keep going until you get an answer. Life is better when you know what you’re facing.”

Joanna’s diagnosis also helped address issues within her own family. Without an understanding of the underlying medical issues, family members questioned why the accomplished college professor and dean would miss appointments, forget information and lose enthusiasm for life.

“Various theories were put forth, ranging from depression to a brain tumor, a parasite or Multiple Sclerosis,” she said. The uncertainty played havoc with Joanna’s family relationships. Her diagnosis several years ago – after years of examinations starting at age 41 – has enabled the now-49-year-old to work with her husband, Forrest, and better plan their lives.

The benefits of going public

DSC_1733For Lafayette resident and business executive Rick Edmondson, the diagnosis came much quicker. At age 57, he was startled by what he saw as the first symptom of something serious – getting completely lost on his familiar drive home. Within mere months, Rick and his wife, Traci, received the dreaded news of his Alzheimer’s diagnosis.

It took several more months for the couple to come to terms with Rick’s diagnosis, but one day Rick had an epiphany.

“Traci,” he said, “this is our destiny.” And from that day forward, his approach to the disease and outlook on life changed.

Rick tackles every day as a challenge. After reaching out to share his diagnosis with all of their family and friends, including Rick’s international network through the time he spent with the Up With People performing group, the couple has become active volunteers for the Alzheimer’s Association. Together, they serve as resources for a class titled “Dementia Conversations,” and Rick has served as a resource for classes, events and programs for people with a diagnosis.

In addition, Rick and Traci formed a team for the 2017 Boulder Walk to End Alzheimer’s, and emerged as the leading fundraising team for the year in Boulder, True Grit, engaging 35 of their friends and family members to raise a Walk-leading $9,520, which they aim to top in 2018.

What to do after the diagnosis

For many people, like Joanna Fix and Rick Edmondson, receiving an Alzheimer’s diagnosis is not the last step – it’s the first. One important step is participating in research to find a treatment or cure. The Alzheimer’s Association is the world’s largest nonprofit funder of Alzheimer’s disease research. Currently, the Association is investing more than $110 million in nearly 400 best-of-field active projects in 19 countries.

A challenge of supporting that many research projects is finding enough willing participants – in part because of the stigma that comes with the disease. The Alzheimer’s Association TrialMatch® program is a free, easy-to-use clinical studies matching service that connects individuals with Alzheimer’s, caregivers, healthy volunteers and physicians with current studies. People fitting all of those descriptions are needed to participate in any of more than 260 promising clinical studies being conducted at more than 700 trial sites across the country.

The study

The Alzheimer’s stigma study was supported by grants from the Alzheimer’s Association, the Penn Neurodegenerative Disease Ethics and Policy Program and the Healthy Brain Research Center; and supported in part by a grant from the National Institute on Aging, and cooperative agreements from the Centers for Disease Control and Prevention, Prevention Research Centers Program.

University of Denver Researcher Receives Alzheimer’s Association Grant

Aurelie_Microscope_DU research grant.jpgA researcher from the University of Denver has been awarded a grant of $150,000 over three years from the Alzheimer’s Association for an investigation of whether changes in protein levels from an individual’s blood can be measured to predict the onset of Alzheimer’s disease.

Aurélie Ledreux, Ph.D., a research assistant professor at the Knoebel Institute for Healthy Aging at University of Denver, received the Alzheimer’s Association grant to examine disease-related changes in levels of Alzheimer’s disease (AD) specific biological markers, or “biomarkers.”

“If successful, this research could form the basis of a safe and inexpensive blood test for diagnosing Alzheimer’s at its earliest stages,” said Dr. Ledreux. “By detecting Alzheimer’s early using blood tests, we may be able to better treat people with the disease. And with early detection, when new therapies become available, we will be in a better position to know who needs treatment at the earliest point in time.”

According to Dr. Ledreux, two biomarkers (tau and amyloid-beta) can be detected in small vesicles called exosomes that are produced by most cells and can be found in blood. For examples, in the brain, neurons produce exosomes (termed neuron-derived exosomes) that contain proteins and lipids that capture their cell of origin health or disease status. Recent studies have demonstrated that it is possible to isolate these neuron-derived exosomes from blood, and measure how much amyloid-beta and tau they contain.

“This has been found to correlate well with the degree of cognitive decline in AD, and thus would make the neuron-derived exosomes a good biomarker for AD,” she said. “However, we don’t know if these exosomes isolated from blood reflect what truly goes on in the brain. My research will determine if changes in the brains of patients with dementia are reflected in parallel changes in exosomes isolated from their blood.”

The Alzheimer’s Association is the largest non-profit funder of Alzheimer’s research in the world, ranking behind only the governments of the United States and China in the total impact of research funding. Since 1982, the Alzheimer’s Association has funded more than 2,700 scientific investigations with $410 million. More than 400 of these research projects are currently active in 19 countries totaling more than $110 million.

“There are three primary categories of Alzheimer’s research: assessing people’s risk of developing the disease, effective methods of diagnosis, and treatment of persons living with the disease,” said Amelia Schafer, acting executive director of the Colorado Chapter of the Alzheimer’s Association.

“Finding an effective, minimally invasive means of diagnosing the disease early in its progression would be invaluable for helping individuals with the diagnosis, as well as their caregivers, take full advantage of therapies and resources that can improve and maximize their quality of life,” said Schafer.