Connecting in the Land of Dementia. Deborah Shouse

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Connecting in the Land of Dementia - Deborah Shouse

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as she slumps onto our sofa and says, “I wish I could die.”

      Mollie has been wishing this for some months, but despite her ninety-seven years of life and difficulty in seeing and hearing, despite the maddening encroachment of forgetfulness and confusion, despite increased frailty and physical decline, Mollie lives on.

      I sit beside Mollie, holding her one-year-old great-granddaughter Annabelle. At the sight of Annabelle’s rosy cheeks and winning smile, Mollie says, “What a pretty baby. How old is she now?”

      “One year,” I tell her.

      My life partner Ron, Mollie’s son, brings Mollie a tissue and a glass of water. A knock on the door and Emily, the music therapist, comes in. She sets down her guitar case and reintroduces herself to Mollie. “We met a couple of weeks ago,” she says. “I sang you songs, and we talked about your travels.”

      “Whatever,” Mollie says, shrugging.

      “Shall I sing more songs today?” Emily asks.

      “If you want to,” Mollie says, closing her eyes.

      For the last two months, we’ve added a hospice team to the assisted living staff who care for Mollie. Emily is part of their arts program, and Ron and I want to experience this session with Mollie, thinking it will be something meaningful to share.

      Emily has brought an array of bells and rattles. As Emily plays “Down by the Old Mill Stream,” Annabelle eagerly takes two strings of bells and shakes them. Mollie’s eyes are still closed, but Annabelle looks right at Emily.

      “Mollie, would you like to hear ‘Just the Way You Look Tonight’ or ‘Fly Me to the Moon’?” Emily asks.

      Mollie doesn’t respond, and I figure she’s fallen asleep. I am about to request, “Just the Way You Look Tonight,” when Mollie pipes up, her eyes still shut.

      “‘Fly Me to the Moon,’” she says.

      Emily’s voice is sweet and melodic; Ron and I can’t resist singing along, humming around the lyrics we’ve forgotten and skirting the high notes. Annabelle moves on to mini-rain sticks, adding in a soothing percussion.

      You’ve flown a lot of places, haven’t you Mollie?” Emily asks, when the song is over.

      “I have.” Mollie opens her eyes. “I’ve been around.”

      “You’ve been to France and England, is that right?”

      “And India and Russia,” Mollie says.

      “Mom’s also traveled to China, years ago, when few Americans were going there,” Ron tells us.

      “You’ve led an adventurous life,” Emily says.

      “I really have.”

      “What shall I play next? Would you like to hear ‘I Left My Heart in San Francisco’ or ‘Oh What a Beautiful Mornin’’?”

      “‘San Francisco.’” Mollie sits up; she and Annabelle both look at Emily as she sings the nostalgic tune.

      “That’s a city I’d like to visit some day,” Emily says, resting her guitar across her lap. “Have you been there?”

      “Many times,” Mollie says.

      Song by song, story by story, the hour unfolds. Emily quietly offers a choice of old standards, and the soothing familiar tunes lead into a pleasant reminiscence.

      At the end of the session, Annabelle is mellowed into sprawling slumber and Mollie is sitting straight and alert. For Annabelle, the music was a lullaby and for Mollie, it was an affirming wake-up call.

      “Music is what feelings sound like.” —Author Unknown

      Concetta Tomaino hugged her guitar close as she walked the grim corridors of the nursing home’s advanced-stage dementia unit. It was 1978 and Concetta, a graduate student in music therapy at New York University, tried not to stare at the residents, many of whom were slumped on tattered sofas or tied into wheelchairs. Some were screaming; others were calling out for help.

      Concetta walked into the dayroom, where many residents were gathered in a circle. She had no idea how she could connect with these people but she sat down, calmed herself, and began playing “Let Me Call You Sweetheart” on her guitar. As she sang, something fascinating happened: The people who were agitated calmed down. Those who seemed catatonic woke up and began singing along. Concetta wondered, How can people with such severe cognitive brain damage respond so quickly to music?

      The Power of Music

      Early on, Concetta met Oliver Sacks, the neurologist and author who’d observed an amazing awakening triggered by music with his Parkinson’s patients. She asked herself, How about people living with dementia? Why do they respond to music? Can we use music to maintain or even retrieve brain function?

      These questions fueled her research and inspired her pioneering work in music therapy and the use of familiar songs with people living with end-stage dementia. She earned a doctorate in music therapy and was a founder of the Institute for Music and Neurologic Function (IMNF). This internationally recognized nonprofit offers music therapy programs to restore, maintain, and improve people’s physical, emotional, and neurological function.

      “We believe music has unique powers to heal, rehabilitate, and inspire.”

      Concetta and other researchers discovered a strong link between music, emotions, and memory. The human brain’s auditory cortex is connected to the limbic system, which processes emotions and controls various aspects of memory. Areas of the brain associated with long-term memory and emotions connect quickly with sound.

      “We believe music has unique powers to heal, rehabilitate, and inspire,” Concetta says. “We’re trying to understand how the melodies reach areas of the brain so we can create programs that draw out the fullest function, even when there is complex neurologic damage.”

      Why Music Matters

      According to Concetta, music is an art form people associate with major life moments. We link songs to historical and personal events. The associated memories and feelings are preserved and evoked when we hear those tunes again.

      “We may forget facts, but we never lose feelings and associations,” she explains. “Shared music can forge a sense of connection between people. Care partners can experiment to see which songs mean the most to their partners and why.”

      Even when people are nonverbal, the right tunes can lead to deep moments of bonding and can create a sense of belonging.

      Using a Big Band to Move Forward

      Here is how one care partner used favorite songs to connect with and soothe his beloved wife:

      “Besides reducing agitation, research shows that music improves memory. I have yet to meet someone who isn’t responsive to the right music.”

      David

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