Younger Onset Alzheimer's Disease

When Alzheimer's is diagnosed before the age of 65, it's considered 'younger onset' Alzheimer's and about 250,000 people in the US live with it. Too Soon to Forget: The Journey of Younger Onset Alzheimer's Disease is a documentary that shows what it is like living with this disease. This documentary shows the stories of nine families affected by the disease. It is narrated by B. Smith a former supermodel, chef and entrepreneur who was diagnosed at age 62, along with her husband Dan Gasby. Find airing dates and more information here.


Glen Campbell Says Farewell in Documentary

When Glen Campbell, 78, received the news about his Alzheimer’s disease in 2011, he was told to “hang up his guitar and prepare for the inevitable.” The singer/songwriter instead decided to embark on a “Goodbye Tour” that was to last 5 weeks. Instead, the tour lasted a year and a half, and Glen Campbell played to sold-out audiences in 151 performances around the country.

That tour, along with the chronicle of Mr. Campbell’s advancing disease, has been captured by the documentary, Glen Campbell . . . I’ll Be Me, which opened this past week across the U.S. Documentarian James Keach captures not only the amazing performances, but also the struggles with his advancing Alzheimer’s disease. However, not only do we see the anger, frustration, and moments of lucidity that are the hallmarks of memory loss disease, we also get to see the triumph of Mr. Campbell’s spirit on stage. Of his film’s subject, Keach has said, “It became not so much the story of Glen Campbell, but the story of the gift that is being taken away from him. And us."

Even if he sometimes forgot the words, the music is so ingrained in this man’s mind, body, and soul, that he could still do this:

For those too young to remember, Glen Campbell is a 6-time Grammy winner, including an Album of the Year in 1967 and is a recipient of a Lifetime Achievement Award (2012). He was a session guitarist with the Beach Boys and Elvis Presley and in 1975, his hit “Rhinestone Cowboy” was No. 1 on Billboard’s Hot 100 list. He is back on the list at No. 90 with the film’s "I'm Not Gonna Miss You." It’s his first chart appearance since Sept. 5, 1981—marking a 33-year hiatus.

Since the tour ended, Mr. Campbell’s family, including his wife, Kim Woolen and the couple’s daughter Ashley, 27, were caring for the singer at home until this past April. It was then that the 24-hour care Campbell needed became too much for the family to provide themselves. They decided to place Mr. Campbell in a memory care facility near their home in Nashville, TN. Ms. Woolen told People magazine about the decision. "No one was getting any sleep and we were just struggling every second to keep him safe – we felt like it wasn't safe anymore."

An estimated 5.2 million Americans have Alzheimer’s disease in 2014. Most of us know someone or love someone with some form of dementia. We know how difficult it is to watch that person slowly slip away. It used to be that we wouldn’t acknowledge memory loss disease. What was referred to as “old-timer’s disease” was rarely spoken of and it’s sufferers stigmatized. It takes a lot of courage for someone like Glen Campbell, along with his family, to open their lives and share publicly what so many families are experiencing privately.

Alive Inside: Music Triggers Memories

Every year, I look forward to fall movie season—comedies, crazy horror movies (looking at you, Tusk,) big blockbusters, and sweet, small romantic dramas—I don’t have a favorite genre. As long as its well written and well acted, I’m in.

I’m also a nut for music, and the two are combined with great effect in the documentary, Alive Inside. Great documentaries not only entertain, but by their very nature, teach us something we didn’t know before or gives us a deeper understanding of a subject. Documentary filmmakers are rarely in it for the money, so you know that telling their story is a labor of love.

Filmmaker Michael Rossato-Bennett follows social worker Dan Cohen, founder of the organization Music & Memory, a nonprofit that uses music to trigger memory and emotion to those suffering from Alzheimer’s disease and memory loss. Winner of the Audience Award for U.S. Documentary at the 2014 Sundance Film Festival, the film showed music’s capability of reawakening the mind and soul of the listener, restoring an individual’s sense of self, especially when that person is battling memory loss.

It’s been chronicled that those with Alzheimer’s and dementia feel emotion long after memory has faded. Alive Inside shows nursing home patients respond to the music they enjoyed in their youth.

Just as “Radar Love” takes me back to cruising the streets of Chicago in my first car (a 1970 Nova), Henry reacts to the big band music played through an iPod and headphones. The 94-year-old man suffers from dementia and initially seems cut off from the outside world. We watch as he listens. The transformation is immediate and profound. Henry sits up, sways to the music, and starts raving about how much he loves Cab Calloway. He responds to questions and suddenly he is full of energy and life.

The movie is full of those kind of examples. Mr. Rossato-Bennett spent three years watching and recording the effects of music therapy. At its best, the movie let’s us see the transformation of memory loss patients from isolated to reconnected—all through the power of music.

The documentary also contains interviews with experts including renowned neurologist Dr. Oliver Sacks, who discusses links between music and emotion and the strength of musical memories. Musician Bobby McFerrin (Don’t Worry, Be Happy) also weighs in on the power of music as a trigger of emotional memory.


Caregiverlist supports the family and professional caregiver and understands the challenges of caring for seniors with memory loss. We think music therapy is a great technique for connecting with those with Alzheimer's disease.

And if you are looking for a a little escapist fun in theaters this fall, Irma la Douce and Captain von Trapp (Shirley MacLaine and Christopher Plummer) are living it up in Elsa & Fred, an American remake of a 2005 Spanish-Argentine film of the same name.

Do you have an issue you'd like to see tackled on this blog? Connect with Renata on Google+

"The Genius of Marian" Shows Love Beyond Alzheimer's

Here are some startling latest Alzheimer's Disease Facts and Figures from the Alzheimer's Association:

  • More than 5 million Americans are living with Alzheimer’s disease.
  • Alzheimer's disease is the 6th leading cause of death in the United States.
  • In 2013, 15.5 million caregivers provided an estimated 17.7 billion hours of unpaid care valued at more than $220 billion
  • Almost two-thirds of Americans with Alzheimer's are women.

Pam White is one of those women. Her own mother, the renowned painter Marian Williams Steele, herself died of Alzheimer’s in 2001 at the age of 89. Ms. White was in the midst of writing a biography of her mother, entitled “The Genius of Marian” when she began exhibiting the signs of early-onset dementia. Because she was struggling with typing and other tasks, her filmmaker son, Banker White, began to videotape conversations with his mother with the hope of helping her continue her project.

What came out of those conversations is a film that captures big events and small, as Ms. White details and recalls the events of her life. It also catches the struggle of a loving family as they deal with the complex emotions of losing a loved one to the disease.

It was an audience favorite at the Tribeca Film festival and, by all accounts, is a remarkable film—both for its subject matter and the intimacy and love with which it’s displayed.

In December of 2012, Banker White wrote a guest blogpost for Maria Shriver’s Inspirational Stories for Architects of Change, describing the powerful process of filmmaking this incredibly personal project.

“I believe the story is deeply important and powerfully told and I trust it will resonate not only for those directly affected by Alzheimer’s disease, but for with anyone who has had to reconcile complicated emotions around aging and loss.”



“It’s a remarkable film, not only for the obvious affection with which it was made, but as art.” – John Anderson, INDIEWIRE

David Shenk, award-winning, national-bestselling author of six books, including what is commonly known as the “the definitive work on Alzheimer’s,” The Forgetting (2001), served as consultant on the film. His short video below, provides an engaging and informative introduction to Alzheimer's disease.


The film will air nationally for the first time on PBS’s POV on Sept. 8 and film screenings are available for communal viewing. I’m inking the television debut on my calendar and hoping that Caregiverlist will be able to host a viewing in the Chicago area soon.

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