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Living with dementia: drawing people out with music

Editor’s note: This story is part of an ongoing series by Jalen Knuteson looking at Wisconsin’s long-term health care crisis. To see other articles in this series, click here.

The pain of seeing residents with dementia deteriorate has led to facilities using alternative measures to improve their quality of life. Methods have come a long way.

The key to helping people with dementia is to try to create moments of joy (Creating Moments of Joy by Jolene Brackey is a book highly recommended by St. Croix Aging and Disability Resource Center dementia specialist Nancy Abrahamson for people regardless of their level of experience as a caregiver).

A Milwaukee-based initiative called TimeSlips helps people with dementia socialize and tell stories based on a photograph that is being passed around a group of people.

A more recent phenomenon in the last three years, thanks in large part to the award-winning documentary Alive Inside, is offering music to people with dementia to socialize in ways that they hadn't before.

The initiative "Music & Memory" was developed, motivated by the results that are displayed in the documentary.

Comforts of Home Senior Living in River Falls uses "Music & Memory" for their residents.

"One of the residents did not get out of bed very often," River Falls Comforts of Homes administrator Kim Szymanski said. "She usually had a blank stare in her face. Her husband was telling us that she loved hymn music.

"The first time she listened to it, her eyes lit up and she smiled. Within a week she started singing the songs."

Szymanski said the resident began to enjoy leaving her room to watch activities, which was a rewarding moment for residents and staff alike.

The activities director in Plum City collaborates with families to help set up residents with music that brings joy to their lives. When family members organize playlists with music that residents may have grown up with and enjoyed earlier in life, the residents light up with energy.

"Music is one of those things that people never forget," Szymanski said. "You never forget the words to your favorite songs."

It's strategies like "Music & Memory" that Abrahamson thinks should be the focus of caregivers.

Arts and crafts

Another avenue is crafts.

"It's not rocket science," Abrahamson said. "We did not have much money for crafts. We used modeling clay and string art."

Seeing the pride on the faces of residents as they show off their art helps family members realize that their loved ones have more to give than they are often given credit for.

In long-term rehab facilities, similar approaches are based on the needs of individuals.

When people with memory care needs come to the Spring Valley Health and Rehab facility for rehab, a plan is developed to match an individual's needs with both treatment and memory care. Notes are kept to keep track of how patients react at different times of the day and how to most effectively communicate with patients.

"It takes a higher level for individualization for the person with the needs," said administrator Kevin Larson. "It takes extra time to investigate to understand why a person is experiencing the issues that they are and then developing approaches based on that to help that unique individual."

It is crucial to tailor care specifically to individuals based on the form of dementia.

Some nurses are not cut out to work with residents who have dementia, and Larson said he thinks some nurses are "wired to work in different healthcare fields."

Individual needs

Szymanski agreed memory care efforts must embrace the individual's needs.

"Each patient can be very different," she said. "Some patients like to sleep in later, some like to go to bed earlier. Each patient is different and we like to let them come here to continue to live their lives just like they lived at home."

Creating an environment where each individual is capable of doing that is essential in maintaining a high quality of life for a resident with dementia.

Whether at a facility or in a private family home, caregivers must enter the reality of the person with dementia.

"The first thing we tell caregivers is that you have to enter their reality," Abrahamson said. "You cannot bring them to yours. Just meet them where they're at and just go with it."

Former Wisconsin Gov. Marty Schreiber wrote a book titled My Two Elaines, about being a caregiver to his wife as she lived with Alzheimer's. His major message: the disease cannot be fought by caregivers or anyone interacting with a person living with the disease.

Schreiber urges people to understand that the disease is taking over the brains of loved ones and they cannot control their memories.

"For family and friends with dementia to understand how the disease works," Schreiber said. "It's important to realize that you can't argue with dementia or Alzheimer's."