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Brian LeBlanc says that his favorite music helps to lift the fog of Alzheimer’s.

Immersed in fog. That’s how Brian LeBlanc describes his bouts of confusion from Alzheimer’s.

“Imagine you’re driving down a road on a beautiful fall day,” he says. “The sun is shining, the trees are orange and purple. You come to a bend in the road and, all of a sudden, you hit a fog bank. Your natural reaction is to slow down, creep along. I can be doing anything, and all of a sudden this fog comes in and takes over my brain. I can still see, but I can’t make sense of it all.”

Diagnosed five years ago at 54, Brian says these episodes can happen without warning, five or ten times a day, for long or short periods. But he’s found a powerful antidote: his favorite music. Listening to his personalized playlist, he says, “My fog has diminished by 75 percent. It’s euphoric.”

Sharing a Love of Music

Music has always played a huge role in Brian’s life, since his childhood growing up in New Orleans. His mother would play her favorite Broadway show tunes every Saturday while she cleaned. His father loved to blast Tchaikovsky’s 1812 Overture. “He knew exactly where to place the needle on the record where the cannons go off, “ recalls Brian. “Always at 7:30 on Saturday morning, with the volume way up. It would make my older brothers mad, but he thought it was so funny.”

Singing for churches since he was a teen, playing guitar, and now singing with the group Dr. Breeze for senior care community residents, Brian loves to see how familiar songs bring listeners to life: “After about two or three songs, you’ll see a foot start to tap on the floor, then a hand tap on the arm of a chair. Then the head comes up, eyes open, and they start singing. It’s the most beautiful, wonderful thing I’ve ever seen.”

But it never occurred to Brian to create his own personalized playlist until he heard Music & Memory’s Deborah Ferris, Southeast Regional Director, present at an Alzheimer’s symposium in Pensacola, Fla., where he now lives. His epiphany is summed up by a framed quote on his wall, attributed to trumpeter Al Hirt: “ Music—it’s not what I do, it’s who I am.”

Gaining Clarity of Mind from Musical Favorites

Once Brian started creating a playlist of favorites, he couldn’t stop. His eclectic list of about 500 songs includes Fleetwood Mac, Kenny Rogers, Queen, Herb Alpert and the Tijuana Brass, and Broadway musicals, as well as Pete Fountain, Al Hirt, the Neville Brothers and other New Orleans jazz greats. And, of course, the 1812 Overture. “Listening to my mom’s and dad’s music brings me back to my childhood. Such wonderful, wonderful memories. I can sit here for hours and get lost in the music,” he says.

It’s difficult for Brian to recall lyrics. But as soon as he hears the recording, he can sing along easily: “The lyrics appear in my head like a scrolling text. I’ll be singing with songs I haven’t listened to in twenty years, and the words are as clear as day.”

Since he never knows when the fog will cloud his mind, Brian uses voice-activated devices and timers to play a certain song at a particular time during the day. When he hears the music, the fog clears. A more difficult challenge is remembering to start his playlist if the fog descends. Although he lives alone, Brian maintains a close friendship with his ex-wife, Shannon, who helps him to keep track of appointments and will check up on him if he’s not active online by 9:00 a.m. “Shannon helps me make decisions to be sure I’m doing the right thing,” he says. “She doesn’t let anyone take advantage of me.”

Using Alzheimer’s Experience to Help Others

Listening to his favorite music also helps Brian to stay positive. He well knows how Alzheimer’s can progress. The disease runs in his family, going back to his great-great grandmother. “Back then, they called it hardening of the arteries,” he says. Brian’s grandfather, whose house backed up to his parents’ home in New Orleans, had Alzheimer’s, as well. As the disease progressed, his grandfather would rise at 3:00 a.m., kiss his wife goodbye and say he was going to work. Since she was a paraplegic, her solution was to call young Brian and say, “He’s gone again.” Brian would get in his car and search before waking his parents, if his grandfather couldn’t be found. “We became very good friends with the police,” he adds.

Brian’s mother, too, developed Alzheimer’s in her late ‘70s. “My sister would ask her to help set the table, because she always wanted to help,” he recalls. “She would get a pot out and set it on the table, or a can opener. She didn’t know what a napkin was, but needed to put something in its place.” Brian’s mother died at 85, just 2 ½ months after he was diagnosed—although he never told her. His father also died of dementia-related disease.

That family history would be enough to devastate many people. But Brian’s response is to speak at conferences, large and small, about what it’s like to live with Alzheimer’s. A former public relations and marketing professional, he has always enjoyed personal interactions and “being in the public eye.” Even with that experience, however, he used to wonder why he would get standing ovations after his presentations: “Are they standing up for me because they feel sorry for me? Or because there’s a guy with Alzheimer’s and he can still make sense? Or can they really appreciate and understand my message? It took me a long time to accept that fact.”

Much as he wishes he didn’t have Alzheimer’s, Brian feels that speaking about his experience is now his mission in life: “This is why I was put on this earth, to do what I do. I tell them I’m living well as best I can, even as I still have my bad days. They give me hugs, thank me, tell me I helped them realize what their relative was going through but couldn’t express. They send me all these beautiful, wonderful messages. It’s life changing.”

Promoting the Power of Personal Music

One of Brian’s top favorites is from the first movie musical he ever saw, “Climb Every Mountain” from The Sound of Music. “It’s always been a favorite, and now it has a special meaning. Now every day I do climb a mountain to follow my dream,” he says. “My advice, not just for people with cognitive disabilities, but for anyone, is to make a playlist. Take the music you grew up with, the music you listen to now that gives you peace and calmness.

“When you’re sad or depressed, if you’ve lost your loved one, put on a song that was your favorite with that person. You’ll cry, but then your tears will turn to the joy you had with them. If you have cognitive issues, even if you listen for five, ten minutes, the music will give you that clarity—where all of a sudden, you’re in another world where there is no Alzheimer’s, no dementia. You’re in this space where all you have are beautiful, wonderful, funny memories.”

Founded in 2010, MUSIC & MEMORY® is a non-profit organization that brings personalized music into the lives of people with cognitive or physical conditions through digital music technology, vastly improving quality of life.

Images: Courtesy of Brian LeBlanc

The post “Climb Every Mountain”: How Brian LeBlanc’s Favorite Music Helps Him to Manage Alzheimer’s appeared first on Music and Memory.

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At the State Supported Living Center (SSLC) in Austin, Texas, the Music & Memory pilot program was gaining momentum—but some residents seemed unwilling to participate. One older man, in particular just wouldn’t respond, despite best efforts by staff to find music he liked. He did not speak, and although he could walk, he insisted on using a wheelchair. Any efforts to try to get him to take steps were met with aggressive resistance.

All that changed one afternoon in the activity center. The resident was sitting by the pool in his wheelchair, accompanied by his physical and occupational therapists. One of his aides received a call on her cellphone, triggering her reggae ringtone.

“He sat up in his wheelchair and started pumping his arms in the air and bobbing back and forth,” recalls Dr. Michael Gayle, DPT, who was director of rehabilitation therapy at the time. “The therapists were shocked. He ended up having a little dance party there for 10 or 15 minutes. He actually stood up and kind of shuffled and danced with one of our staff.” Mike immediately told music therapist Rosalyn Howard, who was the lead music detective for the pilot, to create a reggae playlist for the resident. “He loved it,” adds Mike.

That experience with Music & Memory was just one of many “beautiful moments” for residents with intellectual or development disabilities (IDD) living at the Austin SSLC, which began its pilot in March 2016. Based on that successful program, now all 13 SSLCs in Texas are MUSIC & MEMORY® Certified Care Organizations.

Recognize Subtle Mood Changes to Find the Right Music for Each Individual

Residents of the SSLCs have complex medical and behavioral issues. A significant number have lived in the state-run facilities for decades, since childhood. Cognitive conditions, medical complications and mental illness, as well as agitation, self-injurious behaviors and aggression toward others can be part of the mix. Some are non-verbal. Others are relatively independent, working in the community or at day habilitation programs.

In rolling out the program, Mike explains that his team was very focused on finding the right music for each individual—a significant challenge, given each resident’s particular limitations in receptive and expressive language abilities. Favorite music, however, significantly boosts baseline brain activation. “Listening to preferred music, participants have better expressive and receptive language, are able to do more activities and engage more with the world,” says Mike.

Given the communications restrictions, a positive response to a particular genre and specific song is typically not as obvious or dramatic as for the resident who loved reggae. Care professionals’ ability to recognize when the music is right requires an intimate knowledge of that individual and the meaning of subtle mood changes.

Direct Care Staff Key to Successful Program Rollout

In Wisconsin, as in Texas, direct care staff play a key role in this process. At the Southern Wisconsin Center (SWC), an intermediate care facility for people with intellectual disabilities in Union Grove, Quality Improvement Coordinator Tracee Burke says their direct care team provides essential feedback for their Music & Memory program.

“With some of our individuals, it can be very minute observations of changes in their affect or eye contact, very specific little things that indicate they’re enjoying the music,” she says. One resident, for example, would get bored unless her playlist had a lot of variety. “She couldn’t verbalize it,” says Tracee, “but when she was engaged in it and she enjoyed the music, her eyes would open and she would look around and smile sometimes. She was just a lot more interactive, whereas if the staff said she got bored, she was falling asleep with her playlist.”

SWC’s Music & Memory program has been running successfully since the pilot in 2015. About a third of the 118 long-term residents participate, and direct care staff are a key source of referrals. “Our staff are fantastic at knowing what individuals enjoy,” says Tracee. “We have one person who loves Oh, Holy Night. At first we just mixed it into his playlist. He can verbalize and kept asking for it, so we eventually made a playlist of just that song, with different versions.”

Start with a Well Planned Pilot to Test What Works

At both SWC and Austin SSLC, Music & Memory was introduced to a select group of residents, at first. A small team, including a music therapist, was responsible for carrying out the program at both sites, but buy-in from direct care staff was essential. “We got direct care staff involved in doing observations and making sure we had a good playlist for each individual,” says Tracee. “They had a lot of ownership. We chose leads among the direct care staff who were more interested and encouraged them to help train other staff.”

Mike says starting small was also essential to getting the program right at the Austin SSLC. “We rolled it out to one home, part of the nursing home unit, for a combination of medically fragile, behaviorally complex women. Thirteen participated in the pilot. We wanted to see how we did with that population and how it fit into their daily activities, what they wanted to do, and the flow of the home and when they would be able to implement the program.” From that first group, they expanded Music & Memory to several other homes on the campus, and then the entire facility.

Positive Results Last for Hours

Measuring outcomes was also key at both locations. “We created a cognitive engagement scale,” says Mike. “We wanted to know, when the residents listened to their music, would they interact more, have more eye contact, more positive engagement with staff around them, more participation in activities. After 12 weeks, we saw a 52 percent increase in cognitive engagement when listening to personalized playlists for 15 to 30 minutes daily.”

Most dramatic were early successes with two residents who had lived at the SSLC for 50 and 60 years, respectively, says Therese Palombi, QMP Music & Memory Project Manager for Texas Health and Human Services. “Upon listening to their personalized playlists, they began to speak, when no one, prior to those moments, had ever heard them speak before,” she says. “This brought immense support from direct care staff and within management.”

Even up to six hours after listening sessions, Mike adds, “nurses reported increased compliance with med passes, residents consumed more at meals, they were more compliant and involved in their check and change procedures, and were less resistant to transitions in activities and moving from place to place.”

Tracee reports similar outcomes at SWC. After pilot participants listened to their music, observed negative moods were cut in half, and positive moods increased eight-fold. Participants were nearly twice as socially engaged after hearing their personalized playlists, and a third were much calmer.

“Music & Memory Is a High Reward, Low Cost, Low Risk Program”

No wonder that staff at both locations became Music & Memory’s greatest boosters. “The program made it easier for staff to get residents from place to place, easier to communicate.” says Mike. “We saw fewer negative behaviors and more positive interactions. When an individual was communicating more by pointing or facial expressions, the staff loved it, because they could understand what the individual wanted.”

He cites the example of a woman who needed a modified barium swallow test to determine the right diet texture to keep her safe when eating. “We tried the procedure twice and she wouldn’t comply,” he says. So he had the test rescheduled and made sure the music therapist and the woman’s personalized playlist were included. “The third time she complied completely while listening to her music and had a good test. She could be very resistant, but everyone was amazed that she cooperated fully just by using Music & Memory.”

“We had a lot more buy-in than I expected,” says Tracee. “People thought it was really cool. The overwhelming majority of participating residents have enjoyed it and benefited from it, so much so that the staff want to continue with Music & Memory and see that the residents get their music when they want it.”

“Music & Memory is a low risk, low cost, high reward program,” adds Mike. “If you pilot it the right way, you can see the effects on cognitive engagement, receptive and expressive language, and participation in activities of daily living. You’ll see the rewards go well beyond listening time, for hours. And you will have these wonderful moments when you can connect with that individual and that individual connects with you in a deeper way. It’s very powerful.”

Therese Palombi agrees: “Music & Memory gives a simple formula that can be used to change the lives of the people we serve, regardless of the challenges they face. I encourage state leaders to think outside the box and offer the program to all service recipients. We’ve seen tremendous positive responses.”

Founded in 2010, MUSIC & MEMORY® is a non-profit organization that brings personalized music into the lives of people with cognitive or physical conditions through digital music technology, vastly improving quality of life.

Image: Jiroe

The post “Beautiful Moments”: How Personal Music Improves Quality of Life for People with IDD appeared first on Music and Memory.

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Maybe it’s a hip fracture or pneumonia that sends your aging parent to the hospital. Or perhaps it’s a stroke or heart disease. Whatever the presenting medical condition and associated complications of recovery, there is one major risk of hospitalization for all older adults, regardless of diagnosis: delirium.

According to a recent publication by Harvard Medical School, delirium is “the most common complication of hospitalization among people ages 65 and older: 20% of those admitted to hospitals, up to 60% of those who have certain surgeries, and almost 80% of those treated in ICUs develop delirium.”

Some experience hallucinations, agitation, even belligerence, or so-called hyperactive delirium; others become withdrawn, lethargic and have difficulty waking, a condition known as hypoactive delirium. All struggle with confusion, a sense of disorientation and a disconnect with reality. Although those symptoms of delirium have been recognized by medical practitioners since the days of Hippocrates, the causes are still unknown. But the impact of acute delirium on an elder’s long-term health is sobering.

Acute Delirium Significantly Alters an Older Patient’s Health Prognosis

Dr. Mark Hammond, MD, a gerontologist who has worked with Memphis, Tenn., nursing homes for three decades, says that about a third of those who become delirious during a hospital stay are unable to get clear of the confusion and related symptoms—placing them at greater risk of additional health complications, both in the hospital and after discharge. “It causes a cascade of problems,” he says. “Their risk of death over the next 12 months doubles.”

Preventing delirium, says Hammond, can significantly alter the patient’s health trajectory. Studies of centers of excellence have shown that a combination of “common sense” treatment modalities can reduce the risk of delirium during hospitalization by 40 percent: oversight by a qualified gerontologist; ensuring the patient is well hydrated; early involvement of physical, occupational and speech therapists; prompting the patient to stay oriented to surroundings and current events; working on maintaining independence with activities of daily living—all help. So does music.

Hammond considers therapeutic use of music to be an essential part of the delirium-prevention mix. “Any music that is meaningful to the patient, the playlist of the person’s life, connections to childhood or adolescences—bridging neurological pathways can bring the patient back to reality,” he says.

Preferred Music Reduces Anxiety in Hospital Stays

In Scottsdale, Arizona, Dr. Kari Johnson, PhD, RN, ACNS-BC with HonorHealth, has been examining the connection between listening to favorite music and delirium prevention. For her doctoral thesis as a Hartford Scholar at Arizona Statue University, Johnson focused her research on how preferred music affected older patients in trauma centers.

A critical care nurse for much of her career, Johnson wondered what could ease a patient’s anxiety—a significant precursor of delirium—during hospital stays. “You have a person in a bed where you have all this unfamiliar stimuli,” she says. “They have IVs, they have alarms, people coming in and out. There is no sleep, no rest. You can see they’re anxious. They’re sick, and we need to have all this monitoring. What can we do to help ease their discomfort? I started to look at music. Everyone can relate to that.”

Johnson’s research led her to Dan Cohen and the work of Music & Memory. While the logistics of personal playlists was beyond the scope of her study, she adapted the idea of offering favorite music to patients using five different music genre playlists (synthesizer, heart, piano, orchestra and jazz). The playlists were based on other published research regarding how a musical selection’s tempo, low pitch and repetitive rhythm could lower a patient’s heart rate and blood pressure, easing anxiety.

Focusing on patients in her hospital’s trauma Intensive Care Unit and trauma orthopedic unit, Johnson conducted a randomized, controlled study of patients 55 and older. Twenty patients were given a choice of what kind of playlist they preferred, and 20 in the control group received standard care. For the playlist group, over a course of three days, Johnson offered the music for 60 minutes, twice a day, at 2:00 and 8:00 p.m. If the patients were discharged from the trauma unit after two days, that ended their involvement in the study.

Study participants were screened for delirium at the outset; all were clear of symptoms. Johnson administered assessments for confusion and delirium throughout the course of the three days, and recorded vital signs every four hours during that period.

The results? In the music intervention group, there was a statistically significant reduction in heart rate and systolic blood pressure, versus no change for the control group, indicating that the intervention had helped to reduce patient anxiety. None of the patients in either group developed symptoms of delirium over the three days; if she were to repeat the study, Johnson says she would use a more sensitive assessment tool to discern if patients were experiencing hypoactive delirium, which is more difficult to detect.

“Can’t I Just Keep the Music Here?”

In addition to the encouraging measured results, Johnson says the patients who received the music intervention were enthusiastic: “Patients asked me, ‘Can’t I just keep the music here, so I know when I become anxious I can put it back on? It helps me to sleep.’”

Nurses, too, loved the music. “They caught on and said it was awesome,” says Johnson. Trauma nurses caring for younger adults who didn’t qualify for the study followed Johnson’s lead and asked pateints’ family what music their family member preferred. Usually the answer was hard rock, quite different from the anxiety-reducing music on Johnson’s playlists. But, she says, “they calmed right down. It was quite amazing.”

Johnson adds that another patient who had suffered a stroke, who was refusing to sit up, eat or talk, and who threw things at the staff, was also soothed by her favorite music. “The nurses called me over for advice,” she says. “One of them called the patient’s sister to find the music she loved, Big Band songs. The nurse pulled it up on her phone, and after the fifth song, the patient was sitting up in her chair, cooperating, talking and eating.”

Johnson would like to see a personal music assessment become part of the standard hospital admission process, with patients having access to preferred music during their hospital stay.

While more research needs to be done, Mark Hammond believes that personal music, among other advantages, has the potential to reduce reliance on medications to reduce pain and confusion during hospital stays—given that many of these medications are a “double-edged sword” that can provoke onset of delirium.

“If we could prevent delirium, we could change lives,” he says. “We’d reduce the patient’s chances of dying after hospitalization, being moved to a nursing home, dependent on others for activities of daily living. We’d reduce fall rates and fractures. Prevention is so much more effective than treatment.”

Founded in 2010, MUSIC & MEMORY® is a non-profit organization that brings personalized music into the lives of people with cognitive or physical conditions through digital music technology, vastly improving quality of life.

Image: Bruno Nascimento

The post Favorite Music May Hold the Key to Preventing Acute Delirium During Hospitalizations appeared first on Music and Memory.

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Forrest with sons Greg (L) and Steve (R)

As the afternoons grew longer, Forrest would become agitated. He’d tell his son, Steve, in no uncertain terms, to bring him his car—despite the fact that Forrest had Alzheimer’s and could no longer drive. But listening to Elvis and other personal music favorites would enable him to calm down.

“The music would just mellow him out,” recalls Steve of his father’s experience with Music & Memory at Morning Pointe Assisted Living in Columbia, Tenn. “They could use music instead of his anti-anxiety medications. It all depended on the timing. He would sundown about the same time every day. If they put music on around 4:30 or 5:00, he’d calm down, tap his foot and sing.”

The same was true for Ed, a resident at Louisiana’s Morgan City Health Care Center, who would relax and cease being combative when he listened to his musical favorites. “He didn’t like to be surprised. I think that was the main thing,” says his wife of 56 years, Madelyn. “If the aides would walk in and go to change him, he would grab their arms and hold them real tight. Someone would have to pry his fingers off. He was a gentle giant all his life, but he would do it to me, too. It was the sickness.”

A big man, Ed suffered from dementia brought on by Parkinson’s. But listening to Cajun or Country Western tunes would make all the difference in his moods. “If they would put his earphones on, he’d quiet down and go along with almost anything they wanted,” recalls Madelyn. She adds that, as a result, Ed’s personal music playlist helped his aides to stay safer, too.

Research Supports Non-drug Approaches to Dementia Patients’ Common Symptoms

Forrest and Ed’s experiences with Music & Memory’s personal music program underscore the potential for non-drug interventions to ease dementia-related agitation and aggression. Indeed, in 2015, researchers from the University of Michigan Medical School and Johns Hopkins University concluded, after reviewing two decades’ worth of studies about overuse of psychotropic medications for people with dementia, that “non-drug approaches should be the first choice for treating dementia patients’ common symptoms, such as irritability, agitation, depression, anxiety, sleep problems, aggression, apathy and delusions.”

Study co-author Dr. Helen Kales described overuse of antipsychotics this way: “For many behaviors, it’s kind of like killing a fly with a cannon.”

“The Program Works”

Steve initially doubted the effectiveness of Music & Memory’s personal music program. After watching Alive Inside: The Story of Music & Memory, he was cynical. “I thought they just cut out all the bad stuff so it would be good for marketing. No way the music’s impact could be that instantaneous,” he says. “Until I did it with Dad. The program works.”

The head of a local insurance agency for many years, Forrest was the kind of man who “never met a stranger.” Steve adds, “Even with dementia, he’d try to sell you insurance. He’d be going into the hospital and say when we get done here we’re going to talk about insurance.” Watching his father change from such an outgoing individual who loved people to become angry and agitated when he sundowned was difficult, to say the least.

With his music—Forrest’s all-time favorite was Achy Breaky Heart—he would be more like his old self. “He’d smile more, he was happy,” says Steve. “He was always jovial. You could tell when he was having a bad day. The music would just lighten him up.” Diagnosed with aggressive liver cancer in August of 2017, Forrest died the following February. “Even in his last few weeks, when he wasn’t eating much, he still had the music playing,” says Steve. “He wasn’t as responsive, but I could tell he was loving it because he wasn’t as restless.”

“I Just Want Others to Benefit, as We Did”

Ed’s wife, Madelyn, remembers him as a “gentle giant.”

For Madelyn, her husband’s personal playlist markedly improved his quality of life after he had become a flight risk at Morgan City. When first admitted last December, Ed would sit in his wheelchair by the doorway and wait until someone opened the door wide enough to wheel through. “The last time, they found him in the middle of the street, with traffic stopped on both sides,” she says. As a safety precaution, staff placed a brace around Ed’s leg to keep him from rolling his chair, as well as an alarm that would trigger if he came near the door. In turn, Ed became more withdrawn—and combative.

But when he listened to the Cajun music he grew up with, performed by artists like Iry Le Jeune, and Country Western hits by George Jones, Ed’s distress eased. A former welding inspector who ran crews on oilrigs off Louisiana’s Gulf Coast, he had been a man who made friends easily. Madelyn describes him as “always so compliant,” agreeable, willing to accept his limitations as his disease progressed—until he felt confined at the nursing home. Toward the end of his life, the music would also help her to feed him, whereas when agitated, he would turn his back.

Ed died in September. At the wake, Madelyn told her sister that his mouth didn’t look quite right. “That’s because he’s always smiling and laughing,” her sister said. Madelyn laughed and agreed. “He loved people, loved to talk, would walk up to you and introduce himself,” she says. “Music & Memory is a marvelous program. It helped my husband a lot, and me, too. I just want others to benefit, as we did.”

The post The Soothing Power of Music for People with Dementia—and Their Families, Too appeared first on Music and Memory.

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Personal music may ease swallowing issues for people with advanced dementia, according to a 2018 study published in Dementia: The International Journal of Social Research and Practice. Promising results reported in the pilot study, conducted at Columbia Health Care Center in Wyocena, Wisc., in collaboration with Music & Memory and researchers at Stony Brook University, indicate that personal music has the potential to improve food intake, nutrition and hydration at a critical point in the disease process.

Five years ago, Columbia Health Care Center was one of the first nursing homes in Wisconsin to become a MUSIC & MEMORY® Certified Care Organization. In 2015, staff recommended using the personal music program as a Quality Assurance (QA) initiative, to explore how it could best benefit residents and the care environment. Since progressive dementia can make swallowing more difficult (dysphagia), causing reduced ability to eat and resultant weight loss, the QA team decided to explore whether listening to personal music could possibly ease dysphagia and related eating problems.

Over three months, an interdisciplinary clinical team tracked resident food intake following use of personalized playlists a half-hour prior to dinner. The study focused on five residents with the greatest difficulty swallowing or feeding themselves. (One was eventually eliminated from the study due to overstimulation from listening to the playlist.)

Personal Music Linked to Increased Food Intake and Reduced Choking Episodes

Results were encouraging. Average food intake for the four subjects without the Music & Memory intervention was 41.4 percent; when personalized playlists preceded supper, the average food intake increased to 71.4 percent, a statistically significant change. Among the team’s observations, swallowing and nutritional status improved, while choking incidents during mealtime declined. In addition, the subjects’ weight stabilized and they had less need for speech interventions or thickened liquids. Overall quality of life was enhanced.

While the sample size was small, the results are encouraging, says lead researcher Stephen Post, PhD, Director of the Center for Medical Humanities, Compassionate Care and Bioethics at Stony Brook University School of Medicine. “Personal music is more than just a matter of bringing people a little bit closer to who they are for a period of time,” he says. “The pilot study actually suggests there can be a real, functional, physiological outcome.”

Although a decline in eating and ability to eat is a natural part of advanced dementia, using personal music to facilitate swallowing before the disease reaches a terminal phase could potentially enable the individual to enjoy eating and maintain weight for a longer period of time.

Help with Swallowing Enhances Quality of Life for the Individual, Family and Caregivers

Using personal music a half-hour before dinner to help the individual to relax and have an easier time swallowing, self-feed, if possible, and avoid choking has other benefits, as well. Music & Memory’s Robin Lombardo, Northeast Regional Director and a study co-author, says that for a person in an assisted living memory care unit, for example, choking episodes may tip the scales toward a move to a more enhanced care environment, such as a nursing home. That can be a traumatic experience for the resident, triggering anxiety and other complications.

Weight loss and choking issues are, understandably, red flags for any care organization. “Being able to prevent that from happening, or postpone the inevitable, enhances the individual’s quality of life and time spent with family,” she says.

“People do panic when someone they love is not taking much in,” agrees Post. For both caregivers who assist with oral feedings and family members, an intervention that helps ease the stress of mealtimes can be a huge boost.

Improving Efficacy of Assisted Oral Feeding Could Reduce Reliance on PEG Tubes

All too often, he notes, the alternative to dysphagia in people with advanced dementia is a feeding tube—or Percutaneous Endoscopic Gastrostomy (PEG) tube—which is inserted into the abdominal wall to pass nutrition, fluids and medication directly into the stomach. While this may be medically necessary for certain individuals, there are significant downsides, including risk of infection and aspirational pneumonia. Individuals with dementia who have PEG tubes may be put in restraints to keep them from pulling out the tube, which presents a source of confusion. In addition, the feeding tube reduces the stimulation of eating and interpersonal relationships so integral to assisted oral feeding.

The pilot study’s encouraging results are attracting attention of nursing departments in other MUSIC & MEMORY ® Certified Care Organizations that want to see if they can replicate the Columbia findings, according to Robin Lombardo. A large scale controlled research study is “logistically complex,” says Post, but would be the logical next step to clarify outcomes and define best practices.

“I’d like to get to a point where no feeding PEGS are used on people with dementia,” he says. “It’s important to think about the quality of life for a person with dementia. When you put a bolus of food into their stomach, the stimulus of eating is lost as well as a relationship at a deep, ritualistic level. If you have oral feeding available, the person will probably do pretty well for a while before fading away. If Music & Memory can make this alternative more plausible and easier to manage, that’s a big advantage.”

Founded in 2010, MUSIC & MEMORY® is a non-profit organization that brings personalized music into the lives of people with cognitive or physical conditions through digital music technology, vastly improving quality of life.

Image Credit: Glen Carrie

The post Wisconsin Pilot Study: Personal Music May Reduce Complications of Dysphagia for People with Advanced Dementia appeared first on Music and Memory.

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“I always want an element of my work to be philanthropic,” says musician Paul Johnson.

For Nashville musician Paul Johnson, MUSIC & MEMORY® is more than a non-profit organization that deserves his financial support. It’s a reminder of a conscious choice to make music his life’s work. “Here’s why we’re making music,” says Paul. “When it becomes an important part of someone’s life, that’s a powerful and beautiful thing.”

Music has been part of Paul’s life for as long as he can remember. Growing up in Fargo, N.D., he was surrounded by singing and harmonizing. His parents met in a college folk trio, and guitars were always within easy reach at home. Paul was also surrounded by a close-knit family. His paternal grandfather, Bob, and extended family lived just across the Red River in Minnesota.

When Paul was a teen, Bob developed Alzheimer’s. His father would often visit and help with Bob’s care. Their relationship made a huge impression on Paul, as he watched first-hand how his grandfather’s health and mental ability deteriorated over the last years of his life.

“What was equally as impactful, if not more so,” he says, “was to see the effect on my Dad, slowly losing his parent, but also, in that loss, finding places to celebrate. Those moments of presence and light were all the more important.”

A Reminder of Music’s Personal Impact

So when Paul, now a full-time professional musician, happened across the Music & Memory documentary Alive Inside while surfing Netflix several years ago, he was deeply moved: “I remembered how a good day could be such a breath of fresh air, a day when you saw a little of the person that you knew. I wished we’d had this information sooner, to try it with my grandfather.”

Music & Memory’s mission to spread the power of personal music also struck a chord with Paul: “How music can be a soundtrack for important moments in people’s lives, how it benefits both individuals and their caretakers. As a musician, I was really affected by the way the music could be impactful.”

Paul’s musical career has evolved over the past decade, beginning when he came to Nashville as an 18-year-old to study the business of music at Belmont University. That lasted a year. Paul’s real passion was playing music and song-writing, so he began working part-time as a session player for other musicians, and in the process, learned to produce his own compositions.

For the past three years, he has worked full-time writing songs, producing them, and performing under the name Canyon City Building an online audience via Spotify, Apple Music and YouTube videos, he describes his style as “indie folk.”

Philanthropy as a Business Cornerstone

Paul with his sister, Emily, and grandfather Bob Johnson

Recalling his grandfather—known as Big Red because of his tall stature and red hair—Paul is wistful.

“He was a humble guy, not one to brag about his experiences,” he says of the man who was first in his family to go to college with a basketball scholarship, earned a doctorate in physical education, helped found Southwest Minnesota State University, started his own business and served in the 82nd Airborne.

“He didn’t recommend jumping out of planes!” says Paul. “He was always hardworking. Family was really integral to him.”

As Bob’s life drew to a close, Paul says, “I felt like I was getting to know him as he was going. You hear all these stories, windows into the seasons of life. It was like meeting and losing a person at the same time. My hope, as I get older, as my family and friends get older, is that there will be treatments available that will allow us to have those moments of presence more often than not.”

Supporting Music & Memory was a natural step toward realizing that hope. “I always want an element of my work to be philanthropic,” says Paul. “It helps me to have that commitment, to help the world as I move through it. As Canyon City grows, I want to build in ways to be generous and doing good. Music & Memory was an obvious choice to support. It’s about more than the music. It’s a consistent reminder to me why this is good work.”

To learn more about how you can support Music & Memory, please contact Michele Mosko, mmosko@musicandmemory.org.

Founded in 2010, MUSIC & MEMORY® is a non-profit organization that brings personalized music into the lives of people with cognitive or physical conditions through digital music technology, vastly improving quality of life.

Image Credits: Paul Johnson and Canyon City

The post For Musician Paul Johnson, Supporting MUSIC & MEMORY® Strikes a Chord appeared first on Music and Memory.

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It was one of those challenging days at a nursing home near Indianapolis. A resident with late stage dementia was agitated, trying to get up from his seat and walk, although he was at risk of falling. Tending to him, nursing staff were unable to spend time with other residents and complete work that had to be done. Everyone was stressed.

That’s when speech language pathologist Natalie Scott pulled out a digital music device and began playing some of the man’s favorite music. “I was covering for another therapist, trying to work on verbal expression,” she recalls. “He was able to sit in his recliner and listen. When I turned off the music, within a minute or so, he said, ‘I was listening to that.’ The nurse told me she had never heard him speak before.”

As Natalie shared online images with the resident, she soon discovered that he was a retired fire chief. After viewing pictures of fire trucks and other equipment, he told her he wanted to get his fire hat. “It was a really great session,” says Natalie. “And the CNA’s and nurses were able to finish lunch with the other residents and distribute meds. It was pretty amazing.”

Applying MUSIC & MEMORY® to Physical Therapy, Occupational Therapy and Speech Language Pathology

That experience inspired Natalie and physical therapist Jan Bays to team up and promote Music & Memory’s personalized playlist program to support a range of therapeutic applications, including physical therapy (PT), occupational therapy (OT) and speech language pathology (SLP).

“Music & Memory helps set up the person to do the therapy task successfully,” says Jan, now Director of Program Development and Education for Jill’s House in Bloomington, Indiana. “It makes the garden fertile.”

For example, when someone with a hand problem sees an occupational therapist, they may experience a lot of frustration and pain, trying to get their hands to move once again or regain strength, coordination and range of motion, explains Jan. Listening to their favorite music can help to distract them from discomfort and stay motivated.

The same holds for physical therapy. “One of the first successes that we had involved a person who really needed to work on repetitive exercises on an exercise bike, to increase range of motion and aerobic capacity” she says. “The therapist just couldn’t get them to do it for even five minutes. We put on the personalized music and they did it for 15 or 20 minutes.”

For elders with dementia or other cognitive impairments, says Natalie, personalized playlists can be used to arouse attention and help with self-feeding: “As someone is more alert and able to self-feed, it also directly reduces the risk of swallowing difficulty, because they are better able to self-monitor.”

There are many more ways to enhance therapy with personalized playlists. For example, playing the individual’s favorite music 15 minutes before a therapeutic session, such as personal care training for Activities of Daily Living (ADLs), can be invigorating and increase alertness and attentiveness to the task. Jan adds that when the person is depressed and even less willing to participate in therapy, that special music can give them a “big dopamine dump,” which boosts their involvement.

Together, Jan and Natalie offer a two-day webinar through Music & Memory, specially designed for PT, OT and SLP therapy applications. Therapists who work in a MUSIC & MEMORY® Certified Care Organization are eligible for the training; once they have completed the webinars, they can introduce the program to other MUSIC & MEMORY® Certified Care Organizations where they consult. The webinars explain Music & Memory’s particular benefits for these therapies; specific applications for people with dementia, medical complexities and those in short term rehab; as well as the nuts and bolts of documentation, billing and program development.

Building Quality Relationships with Personalized Playlists

In addition to improving patients’ attention and willingness to perform tasks, personalized playlists can help therapists to build the quality personal relationships that are so essential to a successful outcome. Favorite music “helps to make that connection with skills that are old and already known,” says Jan. “It’s helping the person attend to the past. It’s helping the person to find the energy and attention to relate. You have to make that connection and create a relationship before you can effectively teach. Therapists are invading people’s personal spaces, and you have to have a relationship with someone to successfully invade their space. Personalized music is a great way to do that.”

Therapists and their patients aren’t the only ones to benefit. Family members do, too. “It’s very common when family visit someone with a cognitive impairment, they don’t know what to say or do,” says Natalie. Sharing a personalized playlist can help to bridge that gap: “I can come up with a functional communication task to help communicate with their family member, to facilitate automatic verbalizations, the ability to appropriately engage and communicate.”

For caregivers, personalized music is also an important tool. Therapy, explains Jan, has three major goals: to restore function, to teach compensatory strategies for functions that can’t be performed in their customary way, and to adapt the person’s environment for success. Educating caregivers how to use personalized playlists at home to enhance the patient’s follow-through with therapy can reap huge benefits for all involved. “Music & Memory is a big way to adapt the person’s environment,” she says.

“What we have to do, especially for people living with dementia, is to give them an environment in which they feel competent,” says Jan. “They know who they are and they know what to do. Music & Memory makes that connection to a time when the person was competent and they felt comfortable.”

For details about MUSIC & MEMORY® Therapy Applications Training, please click here.

Founded in 2010, MUSIC & MEMORY® is a non-profit organization that brings personalized music into the lives of people with cognitive or physical conditions through digital music technology, vastly improving quality of life.

Image Credit: Alexis Gregos

The post Fertilizing the Garden: How MUSIC & MEMORY® Enhances Therapy Tasks and Builds Relationships appeared first on Music and Memory.

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