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Caregivers Take Note – Music as Therapy

Feb 242012

When Glen Campbell took the stage at the Grammy Awards and accepted his Lifetime Achievement Award, he did so as one of the more than 5 million Americans diagnosed with Alzheimer’s disease. What is inspiring about the 75-year-old Campbell’s Grammy night appearance is that he has not retired from his love of making music despite his recent diagnosis. In fact, he is starting his Farewell Tour and is cutting a new album.

Is music one of the keys to a longer, happier life – despite your health issues?

The news about Campbell got me thinking about studies and articles I have read about music therapy. Although music has been with us since the dawn of time, in the last few decades studies have found that music as a therapeutic tool can increase cognitive function in Alzheimer’s patients, help premature infants gain weight, encourage autistic children to communicate, lead stroke patients to regain speech and mobility, control pain for dental, surgical and orthopedic patients, and manage anxiety and depression for psychiatric patients.

Dr. Oliver Sacks, a renowned neurologist and psychologist at Columbia University Medical Center best known for his 1973 book Awakenings, which became an Academy Award-nominated film starring Robin Williams and Robert De Niro, and who also wrote Musicophilia: Tales of Music and the Brain, testified at the Hearing before the Senate Special Committee on Aging entitled, “Forever Young: Music and Aging,” and issued this statement:

“The power of music is very remarkable… One sees Parkinsonian patients unable to walk, but able to dance perfectly well or patients almost unable to talk, who are able to sing perfectly well… I think that music therapy and music therapists are crucial and indispensable in institutions for elderly people and among neurologically disabled patients.”

The Magic Brain Workout Is Music

Since music is associated with one of the five senses — hearing — which is controlled by the brain it makes sense that we should exercise our brains with music listening to spur cognitive function in the same way we use physical therapy to exercise our limbs, muscles and joints to regain mobility and physical function.

When it comes to Alzheimer’s patients, studies have shown that music reduces agitation or improves behavioral issues such as violent outbursts. In one pilot program, 45 patients with mid- to late-stage dementia had one hour of personalized music therapy, three times a week, for 10 months, and improved their scores on a cognitive-function test by 50 percent on average. One patient in the study recognized his wife for the first time in months. Another music therapy study showed that stroke victims can learn to walk and use their hands again.

And, music therapy is not just used with older patients. When it comes to those children diagnosed on the autism spectrum, music therapy allows these children to develop identification and appropriate expression of their emotions — music becomes the universal language. Many people with diagnoses on the autism spectrum have innate musical talents so music therapy can give these kids a sense of accomplishment and success.

When I spoke to Holly Robinson Peete, the successful actress, talk show host and singer, about her son R.J. who was diagnosed at age 4 with autism, she said he loves music and he has even recorded a song. In fact, Holly finds music a great way for her entire family to connect with R.J. and to enter his world.

She told me, “I think music makes him more comfortable — it is a way for R.J. to communicate without being judged.”

Music — Cure for Caregiver Complaints, Too

Music as therapy is not just for your loved one. We know that caregivers encounter increased stress over caring for a loved one. Since studies show that listening to music can lead to increased secretion levels of melatonin, a hormone associated with mood regulation, lower aggression, reduced depression and enhanced sleep. Using music to cope with these common caregiver complaints can be a welcome relief to caregiver burn-out.

How to Use Music in Your Caregiving Plan

Although the 2008 documentary Young @ Heart, showcased a chorus of 80-year-olds singing Beatles, Rolling Stones and Sonic Youth cover songs, most experts agree that with an older loved one it is best to choose music that reminds them of an earlier, happier time in their lives.

Discover the “happy times tunes”: Talking to your loved one about happy times in their life and understanding the music associations with that time are essential. Whether it is big band, gospel, rock ‘n’ roll, country, opera or blues, find out what made your loved one happiest. Most older loved ones, especially Alzheimer’s patients who retain long-term memory as opposed to short-term memory, find tunes from their youth the most joyful but be careful. Music can also evoke sad memories. One Holocaust survivor in a pilot program reportedly became very upset upon hearing a Wagner opera which reminded him of that era of his life.
Engage younger generations: You can help create emotional intimacy when spouses and families share creative music experiences. Whether it is downloading songs from iTunes, creating a Pandora play list or using the latest technical creation for digital music files, engage your kids in interacting with their grandparent or sibling with special needs to choose their favorite music.
Pick the right setting: It may not be as simple as turning on a radio. The radio can be distracting with constant advertising that breaks the peace of music. Instead, try internet radio like Pandora channels, or use an iPod or CD player. And, be careful with headphones — some may take comfort in the privacy of headphones while others will become irritated or uncomfortable. Also, consider live music situations carefully. For author Gail Sheehy, being able to take her husband, who was suffering from cancer, to a last jazz night out on the town was a gift she will always treasure. But, for special needs children and some older adults — the unsettling activity of a live concert or band can be frightening.
Let your music play: As a caregiver music is your therapy as well. Whether it is creating your own playlist to lift your mood when you have a “down day” or just taking pleasure in watching your loved one become engaged, music can make your heart soar. Celia Pomerantz, author of A Mother’s Daughter’s Journey, found that her mother, who grew up in Puerto Rico, loved a certain era of salsa music such as Tito Puente. She created song lists of her mom’s favorite tunes while her mother was in the nursing home. Celia became enchanted as her mother blossomed into the woman residents called “the dancing queen.” The joy of music and watching her mother dance lifted Celia’s spirits about her mother’s Alzheimer’s diagnosis.
Find a professional music therapist: The American Music Therapy Association (AMTA), a non-profit organization that represents over 5,000 music therapists, corporate members and related associations worldwide offers information about music therapy studies and a listing of credentialed music therapists that offer services in institutional, residential and private home settings.

Music can both evoke and create memories that last forever. I close with this heartwarming story from the AMTA website:

When a couple danced together for the first time after five years of the husband’s deterioration from probable Alzheimer’s disease, the wife said: “Thank you for helping us dance. It’s the first time in three years that my husband held me in his arms.” Tearfully, she said that she had missed him just holding her and that music therapy had made that possible.

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About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

The Love Story of a Football Wife Who Tackled Dementia

Caregiving 44 Responses »

Feb 032012

As millions tune in to the Super Bowl this Sunday, I am cheering for one football wife who tackled her husband’s dementia with a game plan to keep their lives as normal as possible and in the process found her calling as a caregiving advocate. Her passionate plea to the NFL, one of the most powerful organizations in sports, resulted in the “88 Plan,” a break-through long-term care plan that gives security and support to former players and their families when it comes to brain-related illness.

While this story is about caregiving, football and dementia, at its heart, this is a love story.

For Love of the Game . . . and the Man

When it comes to the gladiators of the gridiron, he was the Charlton Heston or Russell Crowe of his day. But, in the end, it would be his wife – on the sidelines of his entire career – who would become the warrior at the center of the action.

When John Mackey, No. 88, was inducted into the Pro Football Hall of Fame in 1992, he was only the second tight end to receive the honor. He was and still is considered one of the best tight ends to ever take the field. In fact, Mike Ditka, himself a Hall of Fame player and the first “pure” tight-end to be inducted into that rare club of exceptional players, stated that Mackey should have been first.
As a Baltimore Colt, where he played all but the last year of his career, John scored one of the most famous plays in NFL championship history. It was Super Bowl V played in 1971, that John caught the nail-biting pass from quarterback Johnny Unitas that first careened off the hands of the opposite team’s player, grazed the fingertips of his teammate and finally wound up safely in the arms of John who then ran it for a then- record 75-yard touchdown. It was this decisive play that helped the Colts beat the Dallas Cowboys and won John his coveted Super Bowl ring.

Twenty-one years later, as John took his place in football’s pantheon of great players for his Hall of Fame induction ceremony, right by his side was the woman who had been in that same spot since his college playing days, his wife, Sylvia. Theirs would prove to be a true love story, challenged only by a devastating medical diagnosis.
Little did either John or Sylvia know that day in 1992 that 14 years later, John’s toughest battles would be fought off the football field with his lovely wife serving as both tackler and blocker. At age 65 John Mackey was diagnosed with frontotemporal dementia (FTD), a degenerative disease caused by the rapid deterioration of the frontal and temporal lobes of the brain.

Tackling Dementia

What makes Sylvia’s story one of inspiration is that this diagnosis could have sacked her (in football parlance) but instead she did not let this devastating news knock her down. One incident that highlights the special challenges that dementia caregivers face was played out at the Baltimore/Washington International Airport.

“John and I were on our way to the Super Bowl – we never missed one and I was determined this was something we were going to continue to do – it always made John happier as we got ready for these annual trips,” said Sylvia.

But, this year was different. There was an incident with the TSA airport security that almost took them both down – literally. Her husband, proudly wearing his Super Bowl ring and trademark cowboy hat, refused to remove these items and place them on the conveyor belt to be scanned. In his mind, he did not understand that there had been a 9/11, he did not understand why they did not recognize him, and ultimately he thought they were trying to rob him of his precious possessions.

As John grew more frustrated with the TSA agents who, unaware of his diagnosis, thought he was just being a belligerent traveler, the agents grew increasingly irritated and finally tackled him but not after chasing the six-foot two-inch 220-pound former football player who dragged the agents several feet through the airport until several more agents joined in, handcuffed him and took him off to jail.

All the while, a tearful and frightened Sylvia was trying her best to explain to the agents and the curious onlookers that her husband was the NFL great and one of Baltimore’s favorite sons, John Mackey, that his illness meant he had no ability to understand what was happening, and ultimately she begged the officers to let her proud husband go. She collapsed while they dragged her confused husband away, and thought to herself, “I don’t know if I can do this anymore.”

Hemingway wrote that courage is grace under fire. When Sylvia caught up with her husband at the police station, John was back to his typical, jovial, social self – signing autographs for many of the police officers who finally recognized the NFL great. It was at this moment as her husband basked in the bright light of his fame, that she realized she could not give up on her husband or herself. That is when her courage took flight.

Instead of deciding that attending future Super Bowls or other travel would be out of the question, Sylvia got to work contacting the head of TSA at Baltimore/Washington International. She explained her situation and asked for his help to allow her husband to travel – especially to the sporting events and autograph signings that he truly lived for and were important to maintaining some type of normalcy in their lives.

The TSA executive designed a plan with Sylvia to have John brought through a private area where they could scan him without incident and without his having to remove items precious to him. In addition, the TSA executive also would contact the TSA executive at the arrival airport to explain how similar treatment of John upon his return flight out of their airport would be helpful to avoid any similar, dramatic incidents that neither party wanted.

And, these special plans are not just for those with famous last names. One lesson all caregivers can take from Sylvia’s travel strategy is to plan ahead and ask a lot of questions. Most airports will work with caregivers on the special travel needs of their loved ones.

The Final Play

Sadly, John Mackey lost his battle with dementia and passed away in 2011. A few years before losing her husband, Sylvia had written a passionate letter to then NFL Commissioner Paul Tagliabue asking for more support for retired players when it comes to their long-term-care (LTC). In his decade-long career, Mackey made about $500,000 – a salary that many back-up players make in one season today. The LTC plan was championed by current Commissioner Roger Goodell and was adopted by the NFL in 2007. The “88 Plan,” was named to honor Mackey’s jersey number and provides retired players suffering from Alzheimer’s disease, dementia, ALS or Parkinson’s disease with $88,000 annually for long-term care or adult day care or $50,000 to secure care at home.

Today, Sylvia is a board member of the Association of Frontotemporal Degeneration (AFTD) and speaks to caregivers across the country about the impact of dementia on families.

As the Giants and Patriots prepare to square off in Indianapolis in Super Bowl XLVI, Sylvia’s message to all caregivers on this game day – and every day – is to “Prepare. Prepare. Prepare.”

This is an excerpt on Sylvia Mackey’s story from Sherri Snelling’s book on celebrity caregivers and the lessons of love and caring that will be published in November, 2012.
©2012 Sherri Snelling

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Caring for Alzheimer’s

About Blog Author Sherri Snelling

Depression, APOE e4 and the Risk of Dementia in Older Koreans

Women & Minorities Comments Off

Apr 212011

Dear Readers,

In a recent post this month, I focused on a study from Korea that examined whether the cardiovascular risk factors had similar effects on dementia risk in the Korean population as compared to Western populations. In this blog post, I discuss the latest data from Korea that examines the association of APOE e4 and depression to incident (development of ) dementia in elderly Koreans.

This study used data from the 10/66 International Dementia Research Program in Developing Countries. All persons aged 65 or older from two geographic areas in Gwangiu, South Korea, were asked to participate in this study with follow-up examinations occurring two years later.

Participants completed a variety of questionnaires that included: (1) 30 questions from Korean Geriatric Depression scale ( including supplemental items from the Geriatric Depression Scale, Beck Depression Inventory, and the Center for Epidemiologic Studies Depression Scale; (2) a review of alcohol history, physical activity, disability, vascular risk factors and measured obesity (BMI>25 kg/m2); (3) cognitive assessment testing (Mini-mental state examination, the Clinical dementia rating (CDR) scale, Instrument Activities of Daily living scale); and (4) APOE e4 genotyping.

A diagnosis of dementia was determined using standard criteria for dementia, Alzheimer’s Disease (AD) and vascular dementia (VaD) by committee. The diagnosis of clinical depression was determined by utilizing validated cutoff scores (against psychiatric diagnoses specific for the Korean population).

Of the initial 732 participants, 518 (83 percent) completed all evaluations at follow-up with 45 participants developing dementia (34 with AD, seven with VaD and four with “other dementia”) over a two-year period. APOE e4 and baseline depression were significantly associated with the incident dementia. When other factors were added to the models, the association between APOE 4 and dementia were unchanged, whereas the association of depression and dementia was no longer significant. Persons with a +APOE e4 genotype / + depression had a nine- fold increased risk of developing dementia compared to those with -APOE e4 genotype/- depression. When other factors were added to this model, the associations were weakened but still remained significant. Gender differences were noted, in that, men had approximately a four times higher risk of developing dementia if they were classified as +APOE e4 /+depression compared to + APOE e4/+ depression women.

This study adds to the few population based studies from Asia that have examined the association of depression and APOE e4 to the development of dementia. The gender differences noted for risk of dementia are interesting, yet it is unclear as to the possible biological mechanisms underlying these findings. Nevertheless, this study supports findings from Western studies regarding the role of depression and APOEe4 to increased risk of dementia, and suggests that perhaps treating a potentially modifiable risk factor such as depression could modify this relationship and delay the development of dementia.

Here are three articles you can refer to, if you wish to learn about this particular study or the latest research on APOE4, depression and dementia in the Korean population: