Tag Archives: alzheimers disease

Choir helps dementia patients form musical bonds

Milwaukee’s Amazing Grace Choir is special, and not just for its talent. The ensemble is made up of people who suffer from early Alzheimer’s disease and other forms of dementia, as well as their caregivers.

Family members in audiences are often moved beyond words. “They’re just in tears after seeing their loved one do a solo,” says Stephanie Houston, outreach specialist in the Milwaukee office of the Wisconsin Alzheimer’s Institute. “This is the same person who has difficulty just managing remembering what happened the day before.”

The choir is an outreach project of the Wisconsin Alzheimer’s Institute, a center within the School of Medicine and Public Health at UW-Madison, and supported by the Helen Daniels Bader Fund of Bader Philanthropies.

In 2013, Dr. Mary Mittelman approached the organization to see if it would be interested in replicating her work with a choir at New York University. Her pilot program studies whether singing can improve mood in people with memory issues and also in their caregivers. 

“We saw this as an opportunity that would really benefit the community,” recalls Houston. The Milwaukee choir was launched last August. So far it has around 15 members. It’s aimed primarily at people of color and underserved communities. African-Americans are at higher risk of suffering from Alzheimer’s disease.

“The three things that we really wanted to focus on,” says Houston, “were definitely to empower the community through outreach and education, to connect elders of color with Alzheimer’s disease or other dementia with supportive services, and to assist families making care decisions.” 

The Milwaukee choir is not a research program, though the experience does have clinical value. Research has shown that the part of the brain most associated with music is tied to emotion, she says. 

“That area is not as affected by the disease,” explains Houston. “So when it comes to people when they’re singing songs, the ability to recall the words is a lot easier. Not only that, one thing about music is it also stimulates movement. So we go from, not only are you using your language skills, and it’s uplifting your mood, but guess what? It gets those feet to tapping, those hands a-clapping, it gets you moving that body! They are fully engaged.” 

Another benefit is that the choir’s work helps reduce stigma. “It challenges the belief that persons with Alzheimer’s and other dementia are so limited that they cannot learn new songs or learn new things,” she says. “This project actually defies that understanding.”

When first joining the choir, participants may have difficulty just being verbal. “What we’ve been seeing is that there has been an improvement in language. It has actually helped individuals to improve verbally.”

The choir also provides a way for caregivers to support their loved ones.

“It’s an activity they can share together,” says Houston. “They are actually making new memories.”

The Amazing Grace Choir will perform on June 20 at “Addressing Dementia as a Family Affair” held from 10:30 a.m. to 1 p.m. at Lapham Park, 650 W. Reservoir Ave. The event is free but advance registration is required. For more information, call 414-289-5866. 

The ensemble’s next season starts in August. For more information, call 414-219-5127 or visit wai.wisc.edu.

‘Still Alice’ highlighting often hidden toll of Alzheimer’s

Her performance as a vibrant woman fading into the darkness of Alzheimer’s is doing more than earning awards for actress Julianne Moore. The movie “Still Alice” is raising awareness of a disease too often suffered in isolation, even if the Hollywood face is younger than the typical real-life patient.

Some things to know about Alzheimer’s:

ALZHEIMER’S IS INCREASING BUT THE EARLY-ONSET FORM ISN’T COMMON

The movie is about a linguistics professor stricken at the unusually young age of 50 with a form of Alzheimer’s that runs in her family. That type of Alzheimer’s accounts for a small fraction of the brain-destroying disease.

About 35 million people worldwide, and 5.2 million in the U.S., have Alzheimer’s or similar dementias. The vast majority are 65 or older. Barring medical breakthroughs, U.S. cases are expected to more than double by 2050, because of the aging population.

As many as 4 percent of cases worldwide are thought to be the early-onset form that strikes people before age 65, usually in their 40s or 50s, said the Alzheimer’s Association’s chief science officer, Maria Carrillo, who served as a scientific adviser for the movie. In the U.S., the association estimates that’s 200,000 people.

GENE TESTING ISN’T RECOMMENDED FOR MOST PEOPLE

Alice’s type is even more rare; she tells her three adult children in the movie: “It’s familial. It’s passed on genetically.”

With this autosomal dominant form of young Alzheimer’s, inheriting one of three genes with particular mutations leads to the disease. Children of an affected parent have a 50 percent chance of having inherited the family’s culprit mutation. As in other families, Alice’s children have to grapple with whether they want to be tested to find out.

But the vast majority of Alzheimer’s isn’t linked to a particular bad gene. There are various genes that can increase the risk, but people who never develop dementia symptoms can carry them, too. That’s why medical guidelines don’t recommend genetic testing for the average person.

MANY SYMPTOMS ARE UNIVERSAL REGARDLESS OF AGE OF ONSET

“I can see the words hanging in front of me and I can’t reach them, and I don’t know who I am or what I’m going to lose next,” Alice says.

To help with the movie’s first-person perspective, Carrillo’s group put actress Moore in touch with someone in the earlier stages of Alzheimer’s who could describe how disorienting symptoms felt — that frustrating inability to retrieve a word or the fear that comes with suddenly not recognizing a familiar place.

Forgetting a word now and then happens to lots of people. The Alzheimer’s Association lists warning signs that may distinguish between normal forgetfulness and something you should discuss with a doctor. On the worry list: memory loss that disrupts daily life, difficulty completing familiar tasks, withdrawing from social activities and personality changes.

PEOPLE MAY COMPENSATE FOR A WHILE

If it seemed like the movie’s Alice suddenly declined fast, consider a concept that neuroscientists call “cognitive reserve.” People who have had more years of education are thought to have some protection because the extra learning increased connections between their brain’s neurons. When Alzheimer’s begins blocking those connections, the brain at first can choose an alternate route to retrieve a memory.

“Your brain’s kept buffered up,” explained Carrillo. But eventually, the brain reaches a tipping point and can’t compensate any longer, so “the change seems more dramatic.”

WHAT’S IN THE PIPELINE

There is no cure for Alzheimer’s, and today’s treatments only temporarily ease some symptoms. Scientists aren’t even sure what causes the disease, although a sticky brain protein called amyloid is one suspect.

Nor is diagnosis simple. There is no one Alzheimer’s test, but a battery of evaluations. Sometimes, doctors use PET scans to measure amyloid buildup, but only in carefully selected cases because plenty of people without Alzheimer’s harbor the gunk, too.

The Obama administration has declared a goal of finding effective Alzheimer’s treatments by 2025. Research suggests Alzheimer’s begins silently ravaging the brain up to 20 years before symptoms begin. One approach under study now is testing to see whether curbing sticky amyloid during that window period might at least postpone symptoms a few more years, if not prevent them.

On the Web

Information on volunteering for research: http://bit.ly/1dRZCv5

The government’s clinical trial database: http://www.clinicaltrials.gov