A Doctor’s Guide to Dealing with Alzheimer’s Disease

Lesage_Suzanne_0648Alzheimer’s is a confounding disease, even for doctors. Salida (Colorado) neurologist Dr. Suzanne Lesage ought to know. Through her role with the Heart of the Rockies Regional Medical Center, she sees new patients who may be concerned about memory loss. Dr. Lesage also counsels others living with the diagnosis on how to best cope with a disease for which there is currently only treatment of symptoms but no cure.

In a recent informational session conducted for 50-plus community members by the Alzheimer’s Association of Colorado, Dr. Lesage joined fellow neurologist Dr. Yvonne Rollins and Ann Carter, regional director of the Southern Colorado Region of the Alzheimer’s Association, to discuss the basics of memory loss and dementia and answer questions regarding the challenges the disease poses for individuals, caregivers and doctors alike.

“Dementia is slow in developing,” said Dr. Lesage. “We can offer a diagnosis based on symptoms, but even under the broad umbrella of dementia, there are multiple types, including Alzheimer’s, vascular, Lewy body, frontotemporal and others, and some patients may be living with more than one.”

Doctor’s advice

Even with the uncertainty surrounding dementia, and specifically Alzheimer’s, Dr. Lesage counsels her patients and their families that there are specific steps they should take to ensure the best care for loved ones who are either dealing with a dementia diagnosis or have concerns about the disease:

  • Be proactive – “At the primary care level, people must be proactive with their doctors,” said Dr. Lesage. “There is a huge spectrum among doctors regarding their comfort level with dementia. Some feel – because there’s currently no cure – that there’s not much they can do.”

Because some doctors may be reluctant to issue a dementia diagnosis, there is a risk that they will not provide the guidance that families need to take appropriate steps.

“A diagnosis gives hope and clarity to the patient,” Dr. Lesage said. “At least they know what they’re dealing with.”

  • Free 24/7 Helpline – A referral to a neurologist can lead to a proper diagnosis, she said. The Alzheimer’s Association’s free 24/7 Helpline (800-272-3900) is another resource for direction.
  • Rapid Referral – Dr. Lesage is a strong advocate for the Alzheimer’s Association Rapid Referral program, which enables doctors to put the individual and their caregivers in touch with a full range of services – all at no charge – that physicians are not in a position to provide.

If there is concern about or discussion of dementia, or Alzheimer’s in particular, Dr. Lesage said there are specific subjects that she raises with her families that should be addressed with the primary care physician, including:

    • Medications that may provide some benefits
    • Counseling for the individual and family
    • Driving considerations and potential restrictions
    • Medical power of attorney and when it should be transferred
    • Types of in-home and residential care that families can consider
    • Opportunities for financial assistance
    • Referrals to support groups, like those provided by the Alzheimer’s Association of Colorado
  • Get support – Caregivers need to understand that they do not have to face this situation alone. In addition to support groups, families can reach out to their regional Alzheimer’s Association of Colorado office or call the free 24/7 Helpline to schedule a Care Consultation. In addition, there is a broad range of resources available in terms of educational information, message boards, classes, clinical trials and newsletters from the Alzheimer’s Association, all provided to the public at no charge.

In addition, Dr. Lesage said that individuals should rely on their primary care physician for medical information and guidance.

  • Continue living – Dr. Lesage emphasizes that an Alzheimer’s diagnosis doesn’t mean the person’s life is over. She stresses that there can be significant quality of life, even later in the disease’s progression. She notes that she has helped devise travel plans for families where a loved one has advanced Alzheimer’s. “Even if they don’t remember the trip, they can enjoy the day,” she said, adding that new memories are created for loved ones.

“The goal I set is for my patients with dementia to stay in the home until it’s time for them to move into hospice care,” said Dr. Lesage. “It’s not appropriate for all, since caregiving capacity is very individual but, for many, there is still good quality of life close to its end.”

 

Latina Alzheimer’s Caregiver Has Three Strikes, But Won’t Stop Swinging

There’s days when I cry, days when I’m mad, and days when I’m going to do something about it

Cindee Sanchez Gierhart is breaking stereotypes and defying expectations, not because she wants to, but because it needs to be done.

Cindee is a Greeley-born and Pierce-raised Latina (“we call ourselves ‘native’”) who is living with an unenviable legacy: her family on both sides is prone to developing Alzheimer’s disease. Her father is living with it and his father and grandmother died from it. Her mother and her mCindee Gierhart & mom in Greeley 7-2017other’s 95-year-old mother are both living with the disease, and her great-grandmother died from Alzheimer’s.

And Cindee is on the caregiving team for both parents and her grandmother.

Anyone who cares for a loved one with dementia knows what a drain the experience can be. Caring for three is above and beyond the call of duty, defying expectations.

As for stereotypes, Cindee is defying a cultural tradition: Latinos care for family members at home, even with a disease as debilitating as Alzheimer’s. And they don’t talk about it.

“Our community hides it, especially from children,” observed Cindee. When Cindee and her sister attended a recent Alzheimer’s Association of Colorado event specifically aimed at the Latino community, the sisters looked at one another when the ‘secrecy’ topic was broached and said to one another: “that’s our family.”

Even though Latinos are 50 percent more likely than whites to be diagnosed with Alzheimer’s, there is still a stigma surrounding the disease. It doesn’t get discussed publicly, and the situation is handled inside the home.

“It’s great for the facts to be said out loud,” Cindee said about the higher risks Latinos face from Alzheimer’s, “but those who put family members in care facilities are still ostracized.”

The cultural challenge of Alzheimer’s

The youngest of five siblings who range from 44 to 49, Cindee wrestles with the expectations of her family members. Realizing the magnitude of dealing with multiple family members with dementia, she helped get her mother and grandmother placed in care facilities. Her father still resides at his home with Cindee’s stepmother. Cindee and her stepmom have already considered the changing aspects of her dad’s future with Alzheimer’s and have obtained a power of attorney and medical power of attorney.

But taking responsibility for ensuring the welfare of loved ones is not the same as meeting expectations.

“In my family dynamic, everyone has input on critical situations,” Cindee said. “At times, tensions ran high and not all of us were sure how care should be provided.” Ultimately, Cindee partnered with her oldest sister and stepmother to put the family wishes into action.

“I’ve got too many people to care for to worry about what other people think,” she said. “When dad and mom were getting their diagnoses, we were in emergency mode and only a few of us could help out. I quickly realized that my family is traveling the same path; we’re just not in the same place at the same time. We’re in different stages of grieving.”

Knowledge is power

When Cindee learned of her parents’ diagnosis and saw the pattern with older family members, she immersed herself in the topic of Alzheimer’s disease.

“I’m a scholarly person,” she said. “I want to investigate and research.” That led her to research the topic online, explore the Alzheimer’s Association website (www.alz.org/co) and even sign up for TrialMatch, the Alzheimer’s Association’s system for matching individuals with ongoing research trials.

It wasn’t until Cindee met Kelly Osthoff, director for the Alzheimer’s Association’s Northeast Colorado regional office, that she began to fully understand the breadth of services that would benefit her and her family.

“In the past few months, I’ve taken ‘Introduction to Dementia,’ ‘Living with Alzheimer’s: For Early Stage Caregivers’ and then ‘Effective Communication Strategies,’” she said. “The communication class is very beneficial, particularly in the early stages when your family members are still high-functioning. You can’t tell what they’re really thinking, and it’s so easy to get offended. My feelings get hurt so easily. The class helped me understand that the communication aspect of what my mom and dad are trying to tell me is not what I’m hearing.”

Even with that immersion, Cindee admits “I don’t feel like I’ve scratched the surface of the classes and groups” the Alzheimer’s Association offers. She has just begun to get engaged with a support group, and found the experience “a healing – and very emotional, but it’s hard to step out of your comfort zone and let others see you so emotional. It’s good to see there are other people trying to take care of their mother or grandmother, praying for the same things I’m going through.”

Seeing herself as ‘fortunate’

While no caregiver for a loved one with Alzheimer’s would see themselves as fortunate when faced with three family members living with the disease, Cindee does manage to describe herself that way. The fact that her husband is 100 percent supportive of her caregiving, and his job enables her to devote extensive time to caregiving without taking a job outside of the home, gives her the flexibility that many others do not have – even considering that Cindee also cares for three children of her own.

“If I had a job, I would have had to quit when my mom’s condition changed so quickly,” she says. “There’s days when I cry, days when I’m mad, and days when I’m going to do something about it.”

Cindee decided to do something about it recently. In observance of The Longest Day, the Alzheimer’s Association’s annual fundraiser that recognizes that every day of living with Alzheimer’s is ‘the longest day,’ Cindee went on a 13-mile hike. Also, her stepmom created a family team for the Alzheimer’s Association Walk to End Alzheimer’s.

“It’s immeasurable healing for my family to do this together,” she said. “I want The Longest Day and the Walk to End Alzheimer’s to be events that get my family, especially my siblings, into this fight with me a little more.

“My siblings and I were all so close, and then everything happened at once. It broke us,” Cindee added, with tears in her eyes. “I feel that right now, we’re all healing a little bit more, but our relationships can never be the same because our parents are going through this. This disease has stolen our parents, our grandparents and our great-grandparents, and our positions as daughters and son. We are now caregivers to our parents, and it feels like our place as children is null and void.”

Doing something about it

Cindee will not stop at being a caregiver. She has become an evangelist. She is passing out cards to family and friends with the phone number of the Alzheimer’s Association’s 24/7 bilingual Helpline (800-272-3900). She is constantly spreading awareness of Alzheimer’s in everyday conversations. And she’s looking forward to participating in more educational programs and support group sessions to both learn more about the disease and to learn to deal with a stress level that is “something I’ve never experienced before in my lifetime.”

Cindee is already looking ahead to the Greeley Walk to End Alzheimer’s, set for Sept. 30 at Bittersweet Park. Her family’s team is Sanchez Family. The 11 Walks to End Alzheimer’s around Colorado are the primary fundraising tool for the Chapter to continue offering educational programs and services at no charge to Colorado families.

In the meantime, Cindee and her husband, Dennis, are celebrating their 15th anniversary. And, wasting no time, she’s already picked out the title for the book of her life: “Juggling Absolute Craziness.”

Memories in the Making Class Excavates Stories

by Lynn S. Schwebach

As an artist, I thought a painting class with Alzheimer’s patients an appropriate way to apply my skills as a volunteer while spending time with my mom who suffers with dementia, but I quickly discovered that a Memories in the Making class entails much more than simply painting colorful pictures.

MIM painting
My mom participating in a Memories in the Making art class.

Unlike traditional art classes, the Alzheimer’s Association of Colorado Memories in the Making (MIM) class does not stress the finished product but the experience the artists have as they create, and the memories that their painted images unlock and bring to the surface.

Sometimes no words

The underlying reason for MIM, however, does parallel what drives most visual artists: self-expression. Those who suffer with dementia lose the ability to find and use words, so the painting process employed in MIM helps release emotions, frustrations and memories trapped within dementia patients.

By sitting down once a week with memory care or nursing home residents, those trained in MIM are able to help patients communicate with colors, lines and symbols. The class does not emphasize traditional drawing skills but emphasizes images — most abstract — as a means for telling others who they were and who they still are. Unlike arts and crafts activities, each MIM painting is unique — an expression of the individual artist.

“Even after people with dementia have lost the ability to use words, they are able to create paintings that reflect their thoughts, emotions and memories in a manner that is expressive and beautiful,” according to the Alzheimer’s Association. “Art can become their voice.”

Over the past 7 months, I have heard participants in MIM classes suddenly talk of their children when they were young, of countries of origin, of barns and tractors that they and family members drove, and the experience of marching in the army during World War II. Because my mom lives with these individuals and I observe them almost daily, I know that these communications are not the norm.

Artist-grade supplies

Also during my first months of volunteering, I noticed the impressive quality of the art supplies the MIM facilitator used. This included 140-pound acid-free, cold-press watercolor paper, artist’s watercolor brushes, pencils, markers and high-quality pan watercolors such as Pelikan, Talons and Lyra.

After going through training by the Alzheimer’s Association of Colorado I learned that MIM care communities only use quality watercolor products because these products give artists the best outcome — often a treasured painting that families or organizations want to save.

The trainer talked of a painting done in the early years (early 1990s) of MIM in Orange County, California, where an artist in a MIM group surprised everyone with a colorful painting in memory of her family’s journey west in a covered wagon when she was 3 years old. She drew her brother and herself under the wagon along with detailed directional signs and symbols. It was a painting they wanted to keep, yet because they used cheap newsprint and construction paper, the artwork faded and yellowed. From that point forward, MIM classes only use artist-quality materials.

MIM class
Me and my mom. Memories in the Making class.

Stories form identities

One of my favorite aspects of each class involves hearing stories like the covered wagon journey.  Hearing the stories reminds me why I’m an artist. Stories comprise each of us and our humanity. They inform each of my paintings.

Somewhere toward the middle or end of the painting, I begin asking the MIM artist to share with me what his or her painting means. Sometimes this takes some prodding and creative questions to get responses. It might start with a the simple question of “what should we name the painting?”

If the artist has a story to tell, we write it in pencil on the back of the painting in pencil. In addition, we write his or name, the date, facility where completed, the facilitator’s name and a directional arrow indicating the top of the painting.

But even if a specific memory isn’t brought to the surface by the painting, MIM initiates so many other benefits, including giving dementia patients an opportunity to socialize, and stimulation that improves mental alertness, visual memory, concentration and imagination.

Activities like MIM are central to addressing the symptoms of a disease that hasn’t a cure. The Alzheimer’s Association states that Alzheimer’s “is not a normal part of aging. Alzheimer’s is a progressive and fatal brain disease.”

In the U.S. alone, 5.5 million people live with its debilitating effects. According to the Association, someone develops Alzheimer’s every 66 seconds. It predicts that by 2050, up to 14 million Americans will have the disease.

Most of us will have a family member, friend or acquaintance suffer with Alzheimer’s. MIM does not teach but provides a tool for communication for families and professional caregivers to learn more about family members and patients, and how best to treat those suffering with this disease.

It is one of the most rewarding art classes I have taught. And like most volunteer positions, the experience has given me much more than I can possibly offer. It has provided me with education on this disease, which affects my family and which I knew so little about. It affirms my belief that creativity is important to everyone and that its benefits go well beyond completing the perfect piece of art. And it adds to my story, one where connection and listening go hand in hand with a meaningful existence.

I took the Memories in the Making training class sponsored by the Colorado Chapter of the Alzheimer’s Association. To learn more, call the Association at (303) 813-1669.

Lynn Schwebach’s blog is bravelycreative.

Memories in the Making Artist Tutored Aspiring Young Painter

While more than eight decades and the effects of Alzheimer’s disease separated them, Della Donna-Matthews and 7-year-old Aniyah Arenivaz shared one powerful bond: a love of art.

“Miss Della,” as she was affectionately known, led a colorful life. Born in Texas in 1925, she was a real-life version of Rosie the Riveter, working in a factory during World War II. She later was certified as a nurse. At age 50, she earned a bachelor’s degree in education that led to a new career as an elementary school teacher. For the past year, Miss Della lived in assisted living as her Alzheimer’s diagnosis progressed. She passed from the disease on April 29 at age 91.

It was Miss Della’s love of art that led her to cross paths earlier this year with Aniyah, who joined her grandmother, Juanita Davis, for a visit to the assisted living facility where Miss Della participated in the Alzheimer’s Association of Colorado Memories in the Making art program.

Miss Della’s daughter, Linda Donna, happened to tell Juanita Davis that a piece of Miss Della’s artwork had been selected for the 2017 Alzheimer’s Association Memories in the Making Art Auction. That inspired Juanita Davis to make the introduction.

“My granddaughter loves to draw,” said Davis. “We brought them together to see each other’s art and see if they could help one another. They sat together on Sundays to draw. Miss Della gave her pointers as Aniyah colored.”

The teacher in Miss Della came alive in those sessions. She would ask Aniyah, a second-grader at Arrowhead Elementary School in Aurora, why she chose a particular subject or why she selected a specific color; encouraging her young pupil to think about and express her decisions.

Della Donna Mathews & Aniyah 3-17

“It was good for Aniyah,” said Davis. “It helped her with her writing along with her drawing. I believe those art sessions gave something to both of them.”

Alzheimer’s Association Engagement

The Memories in the Making program, which is offered through nearly 100 assisted living facilities in Colorado by the Alzheimer’s Association of Colorado, helps people with dementia who have lost the ability to use words to express their thoughts and emotions and share memories through painting and watercolors.

Some of the artwork created in the Memories in the Making sessions is chosen for the Alzheimer’s Association’s annual art auction, where it is paired with artworks donated by professional artists. Proceeds from the auction help fund educational programs and support services that the Association provides at no charge to persons with Alzheimer’s and their families.

“Through this art experience, people with Alzheimer’s are often able to access familiar parts of themselves and paint a picture that reconnects them with a past memory,” said Lisa Steffen, Memories in the Making program coordinator. “These documented memories become powerful tools that reassure family and caregivers that the essence of the individual is still there. For example, one artist loves to paint airplanes that spark stories of his U.S. Air Force service in World War II, while another painted a pattern that reminded her of how her grandmother taught her to quilt – using small scraps to create something beautiful.”

“I needed to have the help of the Alzheimer’s Association to help me through these trying times,” said Linda Donna, reflecting on her mother’s dementia diagnosis.  “The Memories in the Making program caused her to create more and brought back her love of drawing.  And teaching Aniyah brought back her treasured memories of being a school teacher. The one-on-one contact made her feel special.”

The Alzheimer’s Association of Colorado’s Memories in the Making art auction will be held Saturday, June 10, at the Pat Bowlen Field House – UCHealth Training Center at Dove Valley in Centennial. Click here  for more information.

Not Your Typical Alzheimer’s Support Group: Latino Men

Larry Apodaca cared for his mother, Terry, for nearly nine years as she endured the challenges of Alzheimer’s disease. With the exception of occasional visits from a nurse, he tended to his mom on his own at home because “no one could care for her like I could.”

Larry wasn’t familiar with the services of the Alzheimer’s Association of Colorado when his mother passed away in 2013 but, since that time, he has become an outspoken advocate for the Association, taking the message to a largely untapped audience: Latino men caregivers.

“I wish I’d known about these services when I was caring for my mother,” said Larry. “The eye-opening piece for me is how little we know as caregivers. The education the Alzheimer’s Association provides is tremendous.”

As every caregiver knows, the act of serving as a primary source of care for a loved one is an intense experience. No one emerges unmoved or unchanged. That was certainly the case with Larry, who feels compelled to share some of his learnings with others, and he’s chosen to buck several stereotypes.

“First of all, men aren’t likely to talk about intimate details and don’t typically form the kind of relationships that women caregivers do,” he said. “We’re also less likely to ask for help – we think we should be the provider.”

In addition to the work conflicts that many caregivers face, Larry spoke to the challenge of the Latino culture.

“We tend to believe we should handle things within the family,” he said.

Those combined factors left single dad and only child Larry with the challenging solo task of caring for his mom as her condition deteriorated, leading up to her death at age 83. He eventually needed to quit his job as director of donor relations for a Denver-based organization so that he could care for her full-time in his home.

A one-man support group

Since Terry’s passing, Larry has made a commitment to share his experiences and lessons with other Latino men. Given the 50 percent higher likelihood that Latinos will be diagnosed with Alzheimer’s – and the fact that women account for two-thirds of all diagnoses – he knows there are more men like him out there.

To prepare himself with more than personal stories, Larry has immersed himself in the Alzheimer’s Association’s catalog of educational programs to help him guide men facing a loved one’s diagnosis.DSC_1460 (1)

“The course on effective communication strategies really opened my eyes,” he said. “My main thing now is to point other men in the direction of these resources so they don’t have to go it alone.”

The other value that Larry provides – perhaps most important of all – is an ear to listen and a shoulder to lean on.

In his support group, Larry provides a forum to address some tough questions in a safe, non-judgmental environment.

You don’t know if you’re doing the right things

“It’s almost a relief to be able to talk about the guilt you feel (as a caregiver),” he said. “You don’t know if you’re doing the right things. And when you talk with others in the same situation, you realize ‘it’s not me.’ And there’s value in learning from people who are living with different stages of the disease. It’s still intimidating, but the group helps you to anticipate what’s coming.”

While Larry’s experience – and his willingness to share it – is invaluable to his support group members, he’s getting something out if it too.

“It’s rather cathartic to talk about some of the issues that I hadn’t thought about in a while,” he said. “And it’s reassuring to know I did many things right.”

Perhaps the hardest part for Larry is knowing how the story ends. Until a cure is found, there are no survivors. But he knows that active caregivers instinctively want to look for a bright side.

“As a caregiver, you always want that glimmer of hope,” he said. “You want to think ‘we’re going to beat this,’ or perhaps that there will be a cure found before it’s too late.”

Larry understands the guilt that caregivers can feel after the passing of their loved one – the guilt of feeling relieved. And, after being a full-time caregiver, he realizes that he must find a new purpose for his life. For now, Larry is focusing on helping other men just like himself.

Larry Apodaca’s caregiver support group for Latino men meets at noon on the second Wednesday of each month at Christ the King Lutheran Church, 2300 S. Patton Ct., Denver. Call 303-813-1669 for more information.

To learn more about Support Groups and others services of the Alzheimer’s Association of Colorado, click here or call the Association’s 24-hour Helpline at 800-272-3900.

I didn’t officially promise to love, honor and cherish. But I do.

By Karen Susman, communications consultant and Alzheimer’s caregiver

Twenty-seven years ago, I went to a dinner party attended by singles and/or recently divorced folks. This handsome guy came through the door. He laughed at my jokes and that was that. That was Tom. I don’t usually talk about Tom. Not because I’m hiding him or the fact that we’ve been dating all this time and don’t even live together, but just because talking about our relationship is too personal.

But, now I will. Because Tom has Alzheimer’s and I am his…I don’t know what to call me. I’m his caregiver, his friend, his voice, his advocate. Tom has no family in Colorado and his two brothers are far away.

Tom and I have had a lot of fun over the years. We’ve traveled. Shared music and movies, bike rides and hikes, Aspen and CBS Sunday Morning and doggies. He’s been there for me and I’ve been there for him through numerous surgeries, crises and other events that can happen to a long-term couple who start a relationship in mid-life. My family loves him and he loves them. I’ve been to Catholic mass and he’s been to Rosh Hashanah services. We’ve spoken together to municipal groups since Tom was a mayor. He’s always been a civic leader. He lobbied in Washington, D.C., to bring the light rail to Colorado. He has a wall chock full of plaques recognizing his community service. He practiced law. He was a constant student with a curious mind.

But now Tom has Alzheimer’s. I didn’t know much about Alzheimer’s until recently. A lot of people don’t know much about Alzheimer’s. There is stigma and fear. Everyone asks me if Tom knows who I am. Yes. He does. Maybe he won’t know me in five years. Maybe he won’t know me tomorrow.

Alzheimer’s is called the long goodbye. The person in my position gets to grieve daily as the loved one slips away in teeny bits and pieces. And yet, this morning, I joined him for chair jazzercise at his new assisted living digs. He’s been there for 10 days and making a fairly good adjustment.

Tom had lived in the same apartment for decades. I had to move him. This has been exhausting physically, mentally and emotionally for both of us. I haven’t always been the sweetest.

In my caregiver support group, everyone else is married. They look at me quizzically, wondering why I’ve taken this on when Tom and I are not married. Believe me, I’ve asked myself, “Why am I doing this? Why so devoted when I don’t have to be?” Then I got the answer.

My neighbor’s husband died recently. He had Alzheimer’s and it took a great toll on her. At his memorial service, she spoke to the gathering about their good times during their 44 years of marriage. Then she recounted that on the night he died, she said to him, “We kept our promises.” I thanked her for saying that and gave her a hug. She said to me, “You will keep your promises, too.” And, I am.

Making New Memories: An Alzheimer’s Caregiver and Her Journey with Her Father

Paula McClain tries not to dwell on the fact that her dad, Wiley, has Alzheimer’s disease. She realizes that he’s losing his memories of the full life he’s led for the past 87 years. She would rather focus on creating new memories, both of him and with him.

“There’s nothing we can do about it,” Paula says of the disease that led her to move her dad into an assisted living facility two years ago so he could receive around-the-clock attention. “But I’m learning a lot along the journey.”

“Hello Baby,” says Wiley as he greets his daughter on one of her regular visits. He doesn’t remember that his wife and Paula’s mother, Princess, died 15 years ago, and sometimes worries that he did something wrong to cause her to leave him. “How come I didn’t know?” he asks when she tells him that his wife passed away.

While his recent memories are short-lived, Wiley remains physically active and enjoys feeling productive. After a 30-year career in maintenance at Denver Public Schools, he enjoys straightening up after events at his retirement home.

Wiley’s congenial personality shows in his obvious delight in spending the day with his daughter. They share time together, including their ‘Hamburger Tour’ as they search for Denver’s best burger.

“I may get more out of the experiences,” said Paula.  “It’s an honor to be able to care for my dad.”

An unexpected benefit

While no one is ever going to welcome Alzheimer’s into their life, Paula has found an unexpected benefit to her dad’s disease.

“I’m seeing a new side of my dad,” she said. “When I was growing up, he was the provider and more serious. Now I’m realizing that he’s got a funny personality. As a child looking at a parent, you don’t usually get to see that. I don’t remember laughing with my dad, but I do now.”

Caregivers must decide for themselves

Perhaps the biggest challenge that caregivers face is knowing when the time is right to make a change.

“I wanted to keep dad at home as long as I could and bring services to him, but I never had the confidence to know when the time was right (to make a change),” she said. “You don’t know how you’ll respond as a caregiver. We all hope and desire different things. It’s not a judgment, but every individual has their limits.”

DSC_1413Paula was able to expand her knowledge of Alzheimer’s and get insights from other caregivers by engaging in a wide range of programs and services offered at no charge by the Alzheimer’s Association of Colorado, including support groups and classes like “Know the 10 Signs” of Alzheimer’s and “Understanding and Responding to Dementia-Related Behavior.” To learn more about classes and workshops, click here or call the Association’s 24/7 Helpline at 800-272-3900.

“Until it (Alzheimer’s) comes home, you really don’t know where to start,” she said. “No one would ever think to come to the Alzheimer’s Association before they need it, but it has been a great resource that has enabled me to be prepared for each stage (of the disease).”

Since Wiley’s diagnosis four years ago, Paula has learned that she needs to pace herself in order to be present for her dad and give him her support.

“It’s a hard disease,” she said. “I need to take it in doses. I don’t want to get overwhelmed.”

But Paula won’t, because she doesn’t want to miss any of this final trip she’ll get to take with her dad.

“I’m trying to be present,” she said. “I’m not sure what’s down the road, but I’m trying to make the most of what’s here.”

How to Better Communicate with Someone with Alzheimer’s

Ann CarterBy Ann Carter, regional director, Alzheimer’s Association of Colorado Southern Region

Communicating with a loved one in the various stages of Alzheimer’s disease or other types of dementia can be challenging and frustrating for both sides.  I can’t take credit for many of the following suggestions.  Rather this is information I have gleaned from industry experts, colleagues from the Alzheimer’s Association, and watching my own mother struggle with the caregiving of my grandmother who we realize only now had Alzheimer’s disease.  Regardless though, I hope this summary can provide some tips that might help make days a little better for those traveling this journey.

Don’t correct or try to teach

In the early stages of Alzheimer’s, people may “lose” the correct words for something and use strange words you don’t understand. The loved one knows what he or she is trying to convey and can’t understand why you don’t get it. On the other end, the caregiver may be hearing strange words or requests that seem nonsensical.

For example, one woman kept asking for a “new pert,” and became increasingly agitated that her caregiver didn’t understand her.

When you can’t understand, ask questions. Ask what a pert does or where you can find one. A series of questions about a strange word may help you decipher what the person is trying to say. And once you figure out that a “new pert” is actually a clean shirt, don’t correct or try to teach the word when that part of the language may be gone.

Communicate with care

As dementia evolves, communications can become even more challenging. The approach I see as most effective is communicating with the person from the front and at their level. Sit across from them if they are sitting and stand across from them if they are standing. Peripheral vision will decline, so facing the person straight on is important.

Other important strategies including calling the person by the name they prefer and making eye contact. Similarly, pay attention to your tone of voice. Persons with Alzheimer’s quickly pick up on your frustration, and it adds to theirs.

Take your time and don’t speak in complex sentences.  For example, if I say ‘I’m making your lunch now and I’ll be back after work to fix dinner at five o’clock,’ that’s more than they can comprehend. Just say ‘I’m making lunch.’

Choices can also be frustrating and confusing. Instead of asking whether your mom wants to wear her red sweater or the brown coat with the scarf, just get the red sweater.

When visiting someone with Alzheimer’s, always introduce yourself, even if the person is your spouse or parent.   Don’t try to make them guess or “test” their memory.

That same person may recognize you now and 10 minutes later not know who you are.  If it is apparent that you are recognized, say whatever it is you have to say immediately because the “connection” may not last.

Don’t try to reason

Another element of Alzheimer’s is that the individual may make outrageous claims; e.g., people are stealing from them, or that their spouse is having an affair. There is nothing to be gained by attempting to reason with this person.  A better approach is to apologize and validate their feelings, reassure by promising not to do whatever it is again, and then re-direct to another conversation or an activity they like.  You might be able to distract them with something as simple as a mention of the weather or an offer of a cup of tea.

“Therapeutic or compassionate fibbing” can often come in handy.   If your loved one with Alzheimer’s asks about a baby that has long since grown or keeps wanting to see a deceased spouse or parent, it’s best to just tell them the kindest thing you can think of.  Say that the person is working or they’re on vacation, and that they’ll return later.  Again, if the fib is kinder than the truth, use the fib; this is not a ‘teaching moment.’

The person with Alzheimer’s may also ask to go “home” when they already are home. The confusion arises because the person may be thinking of home, not so much as a building, but as a place where they felt safe or a time when the world made more sense. At that point, the best the caregiver can do is reassure the person that you will keep them safe and take them “home soon.”

Be kind to yourself

Caring for a loved one with Alzheimer’s can be extremely stressful, and leave the caregiver feeling very unappreciated.  Therefore, one of the most important things you can do is to be kind to yourself – giving yourself credit every day for the good work you are doing.

Here is an approach that was shared with me that some might find helpful. Each night and before you go to sleep, write down three things that upset you that day, and then toss them in the trash. Then write down three things for which you are thankful, and keep those close.

Every day is a redo.

The Alzheimer’s Association offers a broad range of programs and services for caregivers, all at no charge to the families. To learn about educational classes, click here.  To learn about support groups, click here. Or to contact the Alzheimer’s Association of Colorado’s confidential 24/7 Helpline, call 800-272-3900.

Denver Police Preparing for Skyrocketing Alzheimer’s Contacts

Police officers responding to a call of a person approaching a Walmart store with a 10-inch carving knife likely would arrive at the scene prepared for a violent confrontation. They could have similar concerns about a domestic disturbance call or reports of a driver speeding through red lights.

Imagine those same situations when the alleged perpetrator is a person with Alzheimer’s disease.

The Denver Police Department is looking at the skyrocketing diagnosis rates for Alzheimer’s – projected to jump more than 37 percent to 92,000 cases in Colorado by 2025 – and adapting its officer training programs to equip its personnel to deal more effectively with situations like these where the individual involved may not be able to respond rationally to officers’ questions.

The one-hour Alzheimer’s class is part of a comprehensive 40-hour Crisis Intervention Training (CIT)* program that the Denver Police Department (DPD) is undertaking with its 1,400 officers to help prepare them for a broader range of on-the-job challenges. The DPD has 98 percent of its officers trained in the 40-hour course. The DPD also offers an extended eight-hour class on Alzheimer’s that is optional.

“As police officers, we are seeing more and more of these situations,” said Jim Lorentz, Division Chief of the Wheat Ridge Police Department, who is providing Alzheimer’s-specific training to his Denver counterparts through the Alzheimer’s Association of Colorado.  “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.”

In his training, Lorentz shows cell phone video taken of an actual situation in Ohio involving an 85-year-old woman diagnosed with Alzheimer’s walking gingerly with a cane as she approaches a Walmart store, a 10-inch carving knife in her free hand.  Within seconds of police arriving at the scene, she is taken to the ground and left bloodied.

“How might this situation have been handled differently?” Lorentz asked the class of 40 officers in Denver’s District 1.  “We know a senior citizen is still capable of causing serious bodily injury or death, but could the officers in this situation have used critical thinking to keep the public away and safe while, perhaps, using a shopping cart as a buffer as they engaged in de-escalation techniques to allow more time to coordinate a nonviolent solution?”

Lorentz and the Alzheimer’s Association advocate the TALK approach to these situations:

  • Take it slow
  • Ask simple questions
  • Limit reality checks (for example, don’t expect the person to know what day it is)
  • Keep eye contact

The reality is that more than one in three persons over age 85 is going to be affected by some degree of dementia, and Lorentz noted that an officer responding to a situation with older seniors is likely to encounter at least one person with dementia and one caregiver.

The Risks of Alzheimer’s

Alzheimer’s poses unique challenges to both the families of those affected as well as to law enforcement.  For example, an estimated 70 percent of persons with Alzheimer’s wander, meaning that they will set out on foot or in a car or on mass transit, if it’s accessible.  The challenge is that they almost certainly do not know how to get where they are going, and will not be able to find their way back home.

“While people think they should wait 24 hours before reporting a person missing, we know that in the case of people with Alzheimer’s, if they are not found within 24 hours, there is a 50-50 chance the person will suffer a serious injury or death,” said Lorentz.

Other situations that police often encounter involving persons with Alzheimer’s include traffic violations, misdemeanor cases including shoplifting and indecent exposure (for stopping in a public place to relieve themselves), as well as cases of domestic violence.

“First of all, as police officers, we have to look at these situations critically,” said Lorentz.  “We understand that people with Alzheimer’s can act inappropriately, but we need to look at the law to determine if the offense requires a mandatory arrest, as in the case of domestic violence, or can we use critical thinking to find other options that address the specific issue and solve problems.  One of the worst places you can put a person with Alzheimer’s is jail.”

Safety Steps

As part of the training program, the officers learned about several technology tools that help locate missing persons with Alzheimer’s.  The MedicAlert® + Alzheimer’s Association Safe Return® program is a 24-hour nationwide emergency response service for individuals with Alzheimer’s or a related dementia who wander or have a medical emergency. When the MedicAlert system is activated, a community support network will be engaged, including local Alzheimer’s Association chapters and law enforcement agencies, to help reunite the person who wandered with the caregiver or a family member.

Another is Colorado Life Trak, a radio transmission system offered in a number of counties that is designed to assist law enforcement and rescue agencies in locating lost or missing persons who have been diagnosed with Alzheimer’s, autism, dementia or other disorders.  People in the program wear a transmitter, a small circular radio device on a wristband, approximately the size of a wristwatch. The transmitters and wristbands are worn 24 hours a day, 7 days a week and are difficult to remove without the appropriate tools. If the participant becomes lost or missing, emergency response services have specialized tracking equipment to help isolate the location of the transmitter the participant is wearing.

Denver Police Department’s Proactive Approach

“This Alzheimer’s training component is one part of our larger CIT program to give our officers the tools to be effective in their roles while better understanding the challenges our citizens may be facing,” said Denver Police CIT Training Coordinator Susan Gann.  “As society and our population change, we need to adapt so that we can live up to our motto of serving and protecting the people.  This CIT program is part of our effort to stay one step ahead.”

Training Paying Dividends

Denver police officers already have seen benefits from the training.  Gann cited several examples of how officers have been able to utilize the training:

  • Police officers were called to meet with an elderly woman who reported that her car, which had been involved in several accidents, had been stolen.  After talking with the woman and detecting signs they interpreted as memory lapses, they referred her case to the department’s crisis intervention response team officer.  While the woman, who lived alone, reported feeling well and said she was well-fed, the investigating officer discovered that she had no food in the house, had lost significant weight from lack of eating, and was dehydrated.  The officer was able to refer her to the department’s Adult Protective Services team for assistance.
  • An elderly woman was reported missing by her family after they conducted a search for her.  The responding officer recalled from the training that a person with Alzheimer’s may choose to hide from family members, whether out of fear or thinking of it as a game.  The officer found the woman hiding in a closet, avoiding a lengthy search in the community.
  • An elderly woman was found on I-25 near the Wyoming border, having driven her car – with a flat tire – until it ran out of gas.  Based on her responses to inquiries from Colorado State Patrol, they determined that she was suffering from memory lapses and had her transported back to Denver where Denver police engaged her with the Adult Protective Services team.  And several off-duty Denver officers who lived in her neighborhood drove up to repair and retrieve her car.

“The key,” said Lorentz, “is to recognize the situation and take action on it.  Many times, what might be a relatively minor situation can turn into a life-threatening situation if the officer does not take the time to analyze it.  We need officers to think critically and ask ‘how can we solve this problem.’  We believe this training will help them make those decisions.”

Others Adopting the CIT Training

The Denver Police Department is not alone in seeing the value of CIT training. Police departments throughout Jefferson County have partnered with the Alzheimer’s Association since the early 2000s. The county has taken the program a step further, adding several clinicians who can be called to the scene of a police call, follow up with the families, arrange contacts with the Alzheimer’s Association as appropriate, and provide support and resources to the family.

“It’s tough to take a snapshot of a crisis situation and know what is the right thing to do,” said Emily Richardson, CIT coordinator at the Jefferson Center for Mental Health. “First responders are not trained mental health professionals. We don’t want them to be diagnosticians. It’s kind of a balancing act to determine if a situation is a criminal matter or a mental health matter.”

One police officer who took CIT training told Theresa Grill, professional education coordinator for the Alzheimer’s Association of Colorado, “I wish we’d had this training earlier. We recently responded to a call that we would have handled completely differently if we better understood what we were facing.”

Families Play a Role as Well

“Families and caregivers also play an important role in ensuring the safety of their loved one with Alzheimer’s and the responding law enforcement professional,” noted Grill.

“Anyone calling for emergency services involving a person with Alzheimer’s or another dementia should always state to the dispatcher that the individual involved is someone with a progressive dementia,” she said. “They should also request medical transport, and provide those same directions to the responding officer. This can help first responders better interpret the behaviors they will see upon arrival.”

The Alzheimer’s Association of Colorado offers a free, interactive online class for first responders that was developed with input from first responders. To learn more, click here or contact Theresa Grill at 303-813-1669.

* Crisis Intervention Team (CIT) is an innovative first-responder model of police-based crisis intervention with community, health care, consumer and advocacy partnerships, like the Alzheimer’s Association. CIT provides law enforcement-based crisis intervention training for assisting those individuals with a mental illness, and improves the safety of patrol officers, consumers, family members and citizens within the community. CIT is a program that provides the foundation necessary to promote community and statewide solutions to assist individuals with a mental illness. The CIT Model reduces both stigma and the need for further involvement with the criminal justice system. CIT provides a forum for effective problem solving regarding the interaction between the criminal justice and mental health care system and creates the context for sustainable change.

Advocates Meet with Colorado Congressmen to Press Alzheimer’s Agenda

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April 7, 2017 – A record 1,300 Alzheimer’s advocates from around the country, including 13 representing Colorado, met last week with members of Congress in Washington, D.C., to impress upon them the importance of increased funding for a cure for Alzheimer’s as well as support for palliative and hospice care.

As they have for more than a decade, the Colorado advocates met with all nine members of the state’s congressional delegation to reinforce the message that Alzheimer’s medical research is a bipartisan issue, and they must support adequate funding for the National Institutes of Health (NIH) to advance Alzheimer’s research. This is more critical than ever in light of ongoing budget discussions in Washington, D.C., that include potential cuts in NIH funding.

“The bipartisan support for Alzheimer’s research is there, and the economic argument for the need to find a cure is crystal clear,” said Gene Sobczak, executive director of the Alzheimer’s Association of Colorado. “What we need now is the resolve to make the necessary funding available so that scientists and researchers can accelerate their work to find a cure.”

U.S. Government-funded Alzheimer’s research currently stands at $991 million per year. NIH scientists have projected that a minimum of $2 billion per year is needed for Alzheimer’s research to achieve breakthroughs in developing preventions and effective treatments by 2025. Our advocates requested that Congress increase funding by $414 million this year. Scientists and researchers at NIH already have a plan for how they can spend these funds, which will move us closer to our goal of a world without Alzheimer’s.

At the same time, the cost for caring for the 5.5 million Americans with Alzheimer’s and other dementias is expected to top $259 billion in 2017. Medicare and Medicaid alone spent $160 billion caring for people with Alzheimer’s and other dementias in 2016.

Palliative and hospice care

The second major “ask” of the delegates was support for the Palliative Care and Hospice Education and Training Act (PCHETA), which would increase the availability and quality of hospice and palliative care for persons in the later stages of dementia. Studies have shown that individuals with advanced dementia enrolled in hospice have better symptom management, lower rates of hospitalization and lower death rates when they are hospitalized.

And those nursing home residents with dementia who receive palliative care at the end of life are significantly less likely to require hospitalization, visit an emergency room or die in a hospital.

“There is currently a shortage of health care professionals trained to provide palliative and hospice care services, and the need for these services is growing as the baby boomers age,” said Coral Cosway, director of Public Policy and Advocacy for the Alzheimer’s Association of Colorado.

The importance of advocacy

The 1,300 Alzheimer’s advocates – the largest group we have brought to the Hill for a one-day advocacy initiative – received training on the advocacy process, including how to make an effective “ask” of their member of Congress. They also received an overview on the current political environment.

In addition to the in-person visits, other Colorado advocates sent supportive messages to each member of the Colorado’s congressional delegation in the week prior to the Forum to reinforce the importance of the upcoming visits.

“The Alzheimer’s Association utilizes the skills and talents of countless volunteers to help individuals and families affected by the disease,” said Cosway, “but our legislative volunteers have the unique opportunity to help all 5.5 million Americans with Alzheimer’s at once by advancing legislation that supports research and improves care.”

Each spring, the Alzheimer’s Association of Colorado meets with legislators in Colorado and Washington, D.C., to carry the Association’s message. Individuals who have an interest in engaging in this process, which helps generate support to change federal and state laws impacting the Alzheimer’s community, please sign up here to receive updates and opportunities to join this effort.