A daughter’s journey through her father’s dementia

By Marta Burton

I wonder how my mom does this, how she doesn’t lose her mind completely, too. I wonder if she ever thinks, “I didn’t sign up for this.” I’m sure she knew that someday she would lose my dad, that he, being so much older, would probably die before she did. But this is something you don’t prepare for: the plaque and tangle, the ever-advancing cell by cell degeneration of your beloved’s brain. The slow, seeping loss. The anger. The grief.

Marta Burton & father LouI cry a lot when I go to yoga classes. When I start to move and breathe deeply, when I close my eyes and feel, when I move through the postures, suddenly I am overwhelmed with emotion. I’m standing in Warrior position and crumple to the floor, curl myself into child’s pose and convulse with the hot tears of a girl. My father. My dad. My hero.

I don’t know if my emotion is sorrow or gratitude. I’ve always adored my tall, stoic father: Major Lou L. Burton, Jr., professor, poet, lover, husband, father.

Fifteen years ago, an aneurism began to erupt in his brain. One life flight, three months, and seven brain surgeries later, he was released from the hospital and sent to a skilled nursing facility where we kept 24-hour watch. He was a skinny as hell and dramatic scars sliced across both sides of his shaved head. His brain was badly injured. He had no idea where he was or what had happened. He was shaking all the time and didn’t know what that nasty thing up his nose was…the feeding tube. I remember half sleeping in the little bed with him, holding his hands so he wouldn’t pull it out or try to walk. When he slept calmly, I would do yoga while keeping watch. Mom and I and several of their friends took turns staying with him. Once, while mom was taking a shift with him, I went to her place to rest. It was 3 a.m. and I spilled an entire glass of red wine on her white carpet. I took it as a sign that I should stop drinking.

I got used to taking him to the bathroom and eventually got up the nerve to tell him he needed to take a hold of himself and aim. The day he yanked the feeding tube out of his nose and threw it in the toilet, we knew it was time to get him out of there.

We took him home and fattened him up and watched that gorgeous thick hair grow back. And his mind came back, too, a good part of it. For a long while he only remembered his distant past and sometimes saw people who weren’t there…his sister Barbara in the back seat, his first wife. But he always knew us. Eventually, as his brain healed he learned to read and write and even drive again. It was pretty good for a long while, though he never recovered his short-term memory completely nor his ability to direct his own life. He has been dependent upon my mother to create and direct his days. His cognitive abilities improved for a few years, evened out for several more and then began the slow decline. He began to lose his vision, gave up driving after a small incident, gave up reading and within a couple of years he was completely blind.

And then the real descent began. At first, I thought it was the sensory deprivation…not seeing, short term memory loss, not hearing well…no wonder he didn’t know what was going on. But it was more than that.

He gets lost. When all is quiet and no one is talking with him, he drifts from place to place, time to time, in and out of memories and dreams and when he wakes, he is lost. He often asks, “Where are we?” Once he has the answer, “You’re here in the condo, dad, with Matt and Lou and Tascha.” He rejoins the party…”Oh, how wonderful…” and hangs on to the present for as long as he can. He no longer reads. He no longer writes. He no longer looks in wonder at the mountains or counts the antelope on the prairie. He needs to be reminded that he’s holding a cup.

It seems that he sleeps most of time, but I think he’s having fantastical adventures traveling through parallel universes where various life experiences come together in marvelous dream-like ways. He’ll tell you all about them if you let him. Whenever he is in a mood to talk about what he’s been up to, I encourage him.

Sitting on the porch in mom’s Capitol Hill condo last Autumn, he invited me on his journey saying, “What Italian village is this, Marta?” I answered, “Florence, isn’t it wonderful? Buonasera, papa. Shall we order a cappuccino?” (Of course, this is what we’ve always done…me and dad. We drink coffee in cafes and talk about our latest project… the play he’s writing, the show I’m producing.) I order our drinks, go to mom’s kitchen and make them for us. It is a beautiful, noisy day on the corner of 12th and Humboldt St. in Denver, Colorado, but what a stroke of luck to be drinking cappuccinos at a sidewalk cafe in Firenze. Sipping his coffee with a quivering hand he asks me, “What shall we have for dinner tonight?” I’m not sure what to order, so I go inside and find my mom’s “Florence” cook book and start reading recipes out loud to him as if it were the menu. We make our selections. I’ll have pizza and he will have bistecca all fiorentina.  It doesn’t matter that our orders never arrive. Within a few minutes he’s forgotten where we were.

Alzheimer's photo of Marta and LouIt is now the summer of 2017 and my dad has what I can certainly describe as “dementia.” I see him often, always telling him, “This is Marta, dad.” And he almost always says something like this: “Oh, my darling. Oh, my beautiful daughter. I love you, Marta.” I ask him about his day and he tells stories of wild adventures…directing the troops, giving a lecture, riding a train with a group of dancers. Mostly, now I like to sit quietly cuddled against him, just being. I used to feel guilty that I wasn’t engaging him in conversation, but have decided that he knows that this is the best I can offer. Once in a while, he forgets who I am, thinks I’m his wife and gets a little fresh with me. I say, “Daddy, it’s Marta.” He immediately corrects course and says, “Oh, Marta. You’re a good girl.”

He is awfully frail, utterly blind and constantly in need of my mom. She feeds him each bit of the food that she cooks. She walks him to the bathroom more times a day than she can count. You’ve got to face him, help him stand up, put his hands on your waist or shoulders and walk backwards, holding him upright as he shuffles along.

Yesterday his right leg didn’t know what to do any more. He couldn’t command it to straighten and his tall skinny body kept falling to the side. I said, touching his right leg, “Dad, try to straighten this leg.” He couldn’t and asked me, “What’s happening?” It was the first time that I wasn’t sure I could get him safely across the room.

We got to the sofa and I curled up against my sweet, trembling father. His arms are wrapped around me and mine are wrapped around him, holding his hands still. I tuck my head against his bony shoulder. I wonder how many more moments like this I will have.

I wish this would be our last. I wish it could end soon, that he could be released, that mom could be free, that we could all be free. I don’t want to see it get any worse. I don’t want to see him lose any more of himself. I don’t know how much longer my mom can do this. Her strength amazes me. Her heart pierces mine. I witness the depth of her loss and the power of her love.

Khalil Gibran wrote: “Your joy is your sorrow unmasked. The deeper that sorrow carves into your being, the more joy you can contain.”

Mostly I feel exhausted, but when I melt into tears early in the morning or on my yoga mat, I feel the truth of these words: “When you are sorrowful, look again in your heart, and you shall see that in truth, you are weeping for that which has been your delight.”

(Marta’s father passed away in late 2017.)

Marta’s epilogue: During our difficult and beautiful journey alongside my father, my family benefited from the Alzheimer’s Association programs and services, especially those for caregivers. I’ve been inspired to volunteer for the Association through their SPARK! program, singing music that resonates and connects with caregivers and their loved ones. So many families have been transformed by Alzheimer’s disease or dementia and there are many stories. To learn more, go to www.alz.org/co or call the free 24/7 Helpline at 800-272-3900.

Marta Burton has starred in critically acclaimed concerts with the National Symphony Orchestra at the Kennedy Center as well as other prestigious U.S. and international venues. Since moving to Denver from New York several years ago, she has been creating meaningful programs that awaken memory, uplift the heart and honor history. Her shows have been brought to venues across the Front Range including the Ellie Caulkins Opera House, Swallow Hill, Chautauqua, St. John’s Cathedral, the Mizel Museum, Temple Emmanuel, the Lone Tree Arts Center, Lannie’s Clocktower Cabaret, the Boulder Theatre and dozens of others. She is resident advisor for Balfour Senior Living in Louisville, CO. Her father, Lou Burton, Jr.’s struggle with Alzheimer’s-related dementia has helped inspire her career as well as her leadership of Balfour’s team in the Sept. 15 Walk to End Alzheimer’s. To support the team, click here.

An unconventional Alzheimer’s champion

Serena Ake Calhoun_optSerena Calhoun doesn’t fit the stereotype of a passionate advocate for Alzheimer’s disease. First of all, she’s a Millennial. Alzheimer’s typically isn’t on the radar screen for most 20- or 30-somethings, unless they have had a personal experience with the disease – caring for a loved one affected by the malady.

A senior marketing manager for Charles Schwab in Lone Tree, Colorado, Serena also doesn’t have a family connection to the disease. Her passion is almost coincidental: the mother of her mentor in graduate school was living with Alzheimer’s. That led Serena to do research on the disease. The rest is history.“Alzheimer’s is not OK,” Serena said. “It’s not OK as a society that we let that happen to our old people.”

Recognizing that Charles Schwab has a relationship with countless Coloradans, many of whom may be at risk for dementia or may be caregivers for those with the disease, Serena has made it her mission to both train the 4,000 or so coworkers at her Lone Tree location on the implications of Alzheimer’s, and to engage them in fundraising to find a cure.

A trained Alzheimer’s Association volunteer and presenter, Serena led Schwab employees through four Alzheimer’s-related classes during June’s Alzheimer’s and Brain Awareness Month observance. She’s also recruiting Colorado employees for the Charles Schwab team that will participate in the Sept. 15 Denver Walk to End Alzheimer’s at City Park. She’s hopeful that this will spark a national involvement by Schwab employees to engage in their local Walks.

“I want my workplace to reflect my personal passion,” Serena said. “And, as a younger generation, we need to talk about Alzheimer’s if we’re going to find a cure. I have close friends who’ve lost parents to the disease.” In addition to her role as an Alzheimer’s volunteer and advocate, Serena is a chair of the board of the Young Professionals Alzheimer’s Association of Colorado, where she is actively recruiting her peers to join the fight against dementia. The group’s recent annual Blondes vs. Brunettes flag football game raised more than $144,000 toward Alzheimer’s Association programs, services and the search for a cure.

“Serena is a real go-getter and her involvement with the Alzheimer’s Association is truly exemplary,” said Kate Dochelli, development coordinator for the Colorado Chapter of the Alzheimer’s Association. “She is full mission in every way possible – serving as the chair of the YPAAC board, leading the way with the Charles Schwab team for the Walk to End Alzheimer’s, a former RivALZ Blondes vs. Brunettes player… the list goes on!”

To join or support Serena’s Walk to End Alzheimer’s team, click here. To learn more about YPAAC, call the Colorado Chapter of the Alzheimer’s Association at 303-813-1669, ext. 267 or go to www.alz.org/co.

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.