Archive for the ‘Alzheimer’s Disease’ Category

Non-Verbal Communication: Breaking Through The Alzheimer Silence

Posted on February 18th, 2015 by karen
Non Verbal Communication

Printable Communication Board

by Karen Keller Capuciati

“I want her to tell me what she’s thinking and feeling, what she dreams about that makes her yell at night.”

But for Kari, who posted this concern on the In Care of Dad Facebook page, it’s not possible for her mom to tell her. She has dementia and has lost the ability to form words. “I can’t understand Mom any more,” Kari wrote. “I haven’t been able to in over a year.”

Her mom understands what others say to her — she can answer “yes” and “no” — but Kari feels that her mother has more she wants to say and it’s breaking her heart.

So I reached out to a group of geriatric-care professionals, with whom I meet once a month, to get some suggestions for Kari. Without knowing all the specifics of Kari’s situation, the group had some creative ideas for building a meaningful connection with a loved one when verbal communication has become severely limited.

Mary Underwood, Vice President of Memory Care at Maplewood Senior Living in Fairfield County, CT, believes that all her mom may need is a genuine connection. “Trying to have someone answer questions that they are not able to can be frustrating, not only for the caregiver but also for the person with the disease,” Mary said. “It is important to provide reassurance that they are okay. It can also be helpful to acknowledge the frustration that the person is experiencing. To say, ‘I know it must be hard to not be able to get the words out’ or ‘Even though you can’t tell me what you’re feeling, I want you to know that I am here to make sure you’re okay’ are comforting statements for your loved one. Understanding and connecting with the emotion they are experiencing is often more important than the fact of what is happening.”

Kathryn Freda, a gerontologist and eldercare manager, has had positive experience with elders using art to express themselves. “If it seems like an activity that they might be willing to participate in, I would ask my loved one to draw with pastels or larger crayons, or paint with a wide brush or fingerpaints, or mold clay into shapes. Art transcends normal thought,” Kathryn explained, “and I have often seen clients convey emotion through form and color.”

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The Still Moving Story Of “Still Alice”

Posted on February 11th, 2015 by karen

Still Alice Movie Poster

by Kim Keller

I was so excited to go to the movies last Saturday to see Still Alice, the acclaimed adaptation of Lisa Genova’s wonderful debut novel of the same name from 2007, one of my all-time favorite books. And I wasn’t remotely disappointed.

Still Alice is an eye-opening and heartbreaking story about Alice Howland, movingly portrayed by Julianne Moore. Alice is a world-renowned linguistics professor, teaching at an Ivy League university and lecturing all around the world. She is in a seemingly happy marriage, with an attentive husband (played by Alec Baldwin) and three grown children. In other words, Alice is in the prime of her life, until small uncharacteristic memory lapses start to happen.

It begins with brief little moments, like forgetting what she’s about to say or overlooking an appointment. Then one day it escalates. Alice suddenly becomes disoriented while she’s jogging and can’t find her way back home. After the episode has passed, Alice realizes that she had been “lost” right smack in the center of the college campus where she has taught for years. The experience leaves her so shaken and scared that she knows she needs medical intervention. But nothing prepares her for the diagnosis she receives: early-onset Alzheimer’s disease.

I know it may seem hard to imagine loving a movie about someone who is, in effect, losing her mind. It is painful to watch Alice despair as she falls deeper into the grasp of Alzheimer’s indignities. We watch her struggle to fight off the advances of the disease, and her attempt to maintain as much of her life and identity as she possibly can. She uses her cell phone alarms to help her manage her day, and she becomes consumed with memory games. One night as Alice is cooking dinner, we watch her write three words on a little chalkboard in her kitchen. After she writes down the words, she covers them up, sets the timer for five minutes, and walks away to continue making dinner. When the timer goes off, she walks back over to the chalkboard trying to recount those three words, challenging her memory as she uncovers the board. Then she erases the words and quickly writes down three more. Back and forth, back and forth, she goes.

But even with all the heartache, Still Alice is equal parts intrigue, inspiration and fascination. I recognize that fascination might seem like an odd word to use here, but both the film and book allow the viewer and reader the unusual perspective of experiencing the disease from Alice’s point of view. Usually Alzheimer’s is described by medical professionals or by caregivers, but this is Alice’s story, and she gives us a uniquely intimate seat.

I believe the movie strikes a chord because so many people fear what every little memory lapses might mean as they age. I found myself playing the memory games right along with Alice, and I was actually relieved when I got the answers right.

Although Alice needs to relinquish her university position, she nonetheless teaches us all a few valuable lessons about life. She shows us the importance of living in the moment — even after most of her memories and her identity have slipped away, we can see the joy she feels holding her newborn grandchild.

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Communicating Without Words: The Blessing Of Touch

Posted on February 4th, 2015 by karen

Expression through touch

by Teresa Stecker

A friend of mine visited her childhood pastor, who suffers from progressive Parkinson’s disease. My friend shared how, as a child, she would draw pictures for the pastor and he would always hang them in his office. He always meant a lot to her and she felt a very special bond with him.

Now he’s in a nursing home, crumpled in a wheelchair, unable to even open his eyes due to his frailty. Recently she brought him a picture she had drawn as a child that she found in an old box in her basement. While describing every detail to him, she placed her hand between his. He didn’t verbally respond or open his eyes, but a tear came down his cheek.

Afterward, the pastor’s wife mentioned that people don’t visit him much anymore, because he doesn’t respond. But seeing that teardrop was an affirmation that he is still in there.

Touch is one of the basic needs of life. The craving for touch to communicate affection, comfort and reassurance is present in all of us from the day we are born. As we age, other senses may change and even fade away, but touch remains. And it has the power to reach through the fog, confusion and fear of dementia. A reassuring touch grounds those who are spatially disoriented. It brings people back to their bodies and increases their awareness of present time and space.

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Socializing Alzheimer’s: The Connection Cafe

Posted on January 21st, 2015 by karen

Alzheimer's Cafe

by Karen Keller Capuciati

Charlotte and Cati were the least likely of friends. Charlotte, a therapist for a rape crisis center, is straightforward and serious by nature. Cati, a former athlete who has worked as a prominent international tennis judge, is extremely upbeat and quick to laugh.

They met at a café five and a half years ago and, despite their disparate personalities, they quickly became close friends and great support for one another. They would get together a couple times a week for coffee or to walk their dogs. They got to know each so well that they would sometimes finish each other’s sentences.

There was this one thing they had in common — both had been diagnosed with Alzheimer’s disease.

They might never have met if it weren’t for the Alzheimer’s Café they started visiting along with their caregiving husbands.

What is an Alzheimer’s Café?

The Alzheimer’s Café is a regular get-together organized in many towns for those with dementia and their caregivers, as an opportunity for all of them to get out of the house and into a social setting. It is an opportunity to relax and socialize in an environment that is both supportive and non-judgmental. They take place at public venues that have donated their space during their closed hours. For example, it might be at a luncheonette from 4 to 6 pm on the first Monday of each month or at a children’s museum cafeteria from 5 to 7pm (when it’s closed to the public) one Wednesday a month.

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Making Someone’s Holiday With A Special Gift Idea

Posted on December 10th, 2014 by karen

Gifts for Loved Ones

by Karen Keller Capuciati

Slippers? A robe? An afghan? Certainly there are functional gifts for loved ones who are homebound or living in a skilled-nursing facility, but are the gifts special enough to bring that extra bit of joy that the holidays deserve?

There are many built-in limitations to consider: You may want to avoid expensive trinkets, as they’re likely to get lost; failing vision tends to rule out books as gifts, just as arthritic hands rule out previously adored needlepoint kits; and lovely scented candles are most likely prohibited in facilities due to the risk of fire. Yet there’s still a strong desire to find a gift that is not only suitable and meaningful, but one that also brings delight.

So I asked the group of geriatric-care professionals with whom I meet every month about inspired ways to bring holiday cheer, via gift or gesture, to someone who is homebound or living in a care facility. I asked if any of them had seen families do something unique to celebrate Christmas and Chanukah.

 

Kathryn Freda, Gerontologist & Eldercare Manager:

“I usually recommend that clients give a gift that can be shared in the form of an experience. The most common of these gifts would be to create a photo book of wonderful family memories. Make the photos very large, like only two per page, so the images really stand out. Or you can also create a slide presentation of old photos, set to your loved one’s favorite songs. The point of any of these gifts is that they can be easily shared any time a family member visits. The experience focuses on connection, reminiscing, learning and, hopefully, the joy that comes with shared recognition. In my work, I always search for ways to help people feel, rather than think, especially when there is memory impairment. Sit close, hold hands, or wrap your arms around your loved one while perusing the photo book or watching the video.”

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The Evening Ritual: A Daughter’s Journal

Posted on October 29th, 2014 by karen

 


by Beth Whitman

Mom started losing more and more of her words, but in a way she started becoming more verbal. And while some of the words didn’t fit and the sentences didn’t hold together, I could usually understand what she was trying to get across.

One of my favorite things was our evening ritual. I would lie down on the bed next to Mom, help her settle in for the evening, much like you might lie down next to your child until she falls asleep.  Mom would babble on for a while, until she finally lay back and shut her eyes.

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Emergency Concierge Tool: The GreatCall Splash

Posted on September 24th, 2014 by karen

medical alert device

by Kim Keller

Karen and I just discovered a terrific emergency safety tool this last weekend while visiting our mom in The Villages, Florida. A couple of our mom’s gal pals, who are all part of a rather large and close-knit group of women friends sharing the challenges of widowhood and living alone, told us about the GreatCall Splash emergency alert button that a few of them are now happily wearing around their necks.

Naturally, Karen and I think it’s a smart idea for anyone living alone to have an emergency-alert button, but we were nonetheless a bit surprised to find that Mom’s friends, who are all active and full of life, had decided to take the leap of buying their very own alert buttons, which, for many people, carry the stigma of old age.

So we asked one friend, Carol, “What made you do it?”

“I always thought having an alert button was a good idea for someone living alone,” Carol explained, “but I didn’t want to think that it was time for me to have one just yet. And then Joyce [one of the other girlfriends] fell in the foyer of her house, and she laid there for a few hours with a broken femur before someone found her, and I thought, well, that could happen to me too, since I live alone. So, I decided it was just a good idea, and now that I have it, I feel safer. It gives me tremendous peace of mind.”

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Lewy Body Disease: Walking The Dementia Tightrope

Posted on September 17th, 2014 by karen

Lewy Body Dementia

by Paul Raia, PhD

Life itself is a question of balance. The equilibrium of our solar system, the ebb and flow of the tides, the fragile relationships between ecosystems, the intricacies of maintaining physiological and emotional wellness, all a question of balance.

Lewy Body Disease causes many systems in our body to spiral out of balance. Abnormal proteins called Lewy bodies are thought to be involved in, if not the cause of, two separate but related diseases — Parkinson’s disease and Dementia with Lewy bodies (DLB). Both conditions have these abnormal protein deposits named for the physician, Fredrick H. Lewy, MD, who first saw them under the microscope in the early 1900s in the parts of the brain that control thinking, memory and movement.

The presence of these Lewy bodies can cause degenerative Parkinson’s disease with no, or only slight, cognitive problems; a progressive and terminal dementia; or a combination of the two: full-blown dementia with significant degenerative motor problems.

Typically, the early symptoms of DLB include:

  • visual hallucinations;
  • problems with attention and carrying out multiple stepped tasks;
  • spontaneous symptoms of Parkinson’s disease that come and go;
  • significant sleep disorder;
  • frequent falls;
  • unpredictable loss of consciousness;
  • dramatic sensitivity to drugs, especially antipsychotic drugs that might control hallucinations;
  • problems with visual-spatial tracking of objects, depth perception and other visual deficits.
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Alzheimer’s Awakening: Tuning Into Music & Memory

Posted on August 20th, 2014 by karen

Alzheimer's, Music and Memory

 

We wanted to rerun this blog today because Alive Inside, the documentary about Dan Cohen’s non-profit group Music and Memory, is now playing in theaters around the country. I hope everyone takes the time to see this inspiring movie about the astonishing power of music for those struggling with dementia. The movie made me cry. And laugh. More than anything, it filled my heart with hope and joy. It’s unforgettable. The audience where I saw the movie, in cynical downtown New York City, applauded wildly at the end of the show. Actual cheering! And everyone walked out of the theater smiling. Which is exactly what happened at this year’s Sundance Film Festival where Alive Inside won the Audience Award. Please see it. The ideas presented in this film may change the way we strive to cure dementia.

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by Kim Keller

It all started with this simple idea:

Dan Cohen decided that if he ended up in a nursing home, he wanted to be hooked up with his favorite 60s tunes.

The problem, Dan soon discovered, was that nursing homes in America didn’t provide iPods for their residents.

Dan set out to change that. That was back in 2006.

So, as it turns out, Dan’s little idea is on the verge of becoming a very big idea.

Music, it seems, is magic.

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Getting Your Affairs In Order

Posted on July 27th, 2014 by karen

Caregivers Get Organized

by Kim Keller

You can peek beneath or behind nearly any object in my mother’s home, and you’ll find a little piece of masking tape with someone’s name written neatly across it.

“This is from my great aunt, Mary Priest, who was a Methodist missionary,” Mom explained, cutting a piece of tape for a little carved coconut that’s been fashioned into a decorative container. I’ve always loved this item, so I made sure my name was on the masking tape. “Mary brought it back from Japan in 1881!”

My mom loves organization. Keeping things orderly gives her a sense of peace and comfort. She also enjoys knowing that, when it’s her time to go, she is passing along the things she loves in an orderly fashion.

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