The Culture Cure: Turning to the arts when dementia has no cure.

Here in Washington State, Alzheimer’s is the 3rd leading cause of death. In fact, that gives us the 4th highest Alzheimer’s death rate in America. While over 5 million Americans are living with Alzheimer’s disease and other dementias, it doesn’t just impact those individuals with the brain disease, but the entire family. The financial, mental, and physical demands on Washington families providing dementia care are abundant. Dementia is the 6th leading cause of death in the United States and the only one that cannot be cured or even slowed. While we don’t have control over the progression of this disease, we do have control over how we respond to it, the care we receive, and the places and people we surround ourselves with during our challenges along the way. How do we accompany our loved ones well? How do we find ways to keep them connected to their identity? How do we foster dignity and connection amidst the difficulty? This disease demands our creativity.

In the absence of a cure to the varieties of dementias, more and more families are turning to the arts and culture to help answer these very questions. Music, film, art, storytelling, and literature have all come to play a role in the way we approach dementia care and cope as caregivers.  

Alive Inside

Music connects us to our lives and who we have been. A song can instantly transport us back to a moment in time. For those suffering from dementia, memories can be trapped in the brain as its synapses suffer and deteriorate. The documentary, Alive Inside, which won the Audience Award at the 2014 Sundance Film Festival, left many audiences spellbound by the simplicity and beauty of what music could offer many individuals trapped in an interior world. In story after story you witness individuals, some non-verbal, some unable to recognize their children, suddenly spill with language and stories after listening to a customized playlist filled with music that deeply resonated with them.

What seems like part magic and miracle is an extraordinary function of the brain. Our brain helps us problem solve, houses our words, regulates our emotions and motor control, and provides judgment. While brain diseases ravage the areas of the brain that control these functions, music still can engage parts of the brain that are usually untouched by the disease that preserve something referred to as “automatic language”. This preserved language can arise as one of the difficult behaviors associated with the symptoms of dementia including swearing, slurs, unfiltered comments, etc. The positive side of this phenomenon is that music can play to the advantage of this preserved automatic language which can also include song lyrics, particularly from an important era of their life, hymns, patriotic music, etc. Because of this impact, music can be an important tool for the caregiver for redirecting a person with dementia when they are exhibiting other difficult behaviors such as wandering, depression, repeated questions, refusing care, etc. Music can also help change the tone of a difficult task such as a shower, meal, doctor appointment, transition, etc. With some individuals with dementia, it can even be helpful to sing directions and instructions rather than speaking them. While the individual may suffer from brain loss in the sections of their brain that handle word processing and meaning making, caregivers can focus on the parts of the brain that they do still have. For more details about the film and its Music and Memory initiative visit:  http://www.aliveinside.us/#land

Local Arts and Dementia Engagement 

Locally, the Frye Art Museum has been making the connection between art and dementia care in a couple of art engagement initiatives. In a private showing at the museum, caregivers, family, and those in a variety of stages of brain disease are invited to enjoy the nonverbal communication of color, form, and emotion. They are also given opportunities to share what they observe and have their perspective acknowledged and seen. In the safety of those leading this “HERE: NOW” program at the Frye, they are validated and allowed to have the experience they have.

In the same spirit of reaching out to those living with and caring for those with dementia, there is a new endeavor at the Frye Art called, “Meet Me at the Movies”. It is a unique film experience. Short clips from classic films are shown, followed by audience discussion and reminiscing guided by a moderator. While dementia does not have a cure or treatment, cultural activities and engagement in the arts has had many positive outcomes in addressing the symptoms and difficult behaviors associated with the disease. The cinema and the music scores we grew up listening to often have the power to connect us with our deep-rooted emotional memories. This group is designed for people with dementia as well as their care partners and can be enjoyed by all adults for FREE. 

"Meet Me at the Movies" was pioneered by ARTZ: Artists for Alzheimer’s, which is an initiative of the I’m Still Here Foundation. Their purpose is to enhance the cultural and creative life of people living with Alzheimer’s disease. Their mission includes enabling individuals with dementia to express their inner-selves, and lessen the stigma that often accompanies a diagnosis. ARTZ has developed Alzheimer’s-specific cultural access programs with some of the worlds most renowned and respected cultural institutions, including the Louvre in Paris, the Museum of Modern Art in New Your City, the National Gallery of Australia and now the FRYE Art Museum.

Meet Me at the Movies

Saturday, February 14, 2015

11:30am-1pm

Saturday, May 2, 2015
11:30am-1pm

Saturday, August 1,2015
11:30am-1pm

FREE | Located in the Frye Auditorium |For further details and to register online visit: http://fryemuseum.org/calendar/event/5600/

An Expanding Genre:

We are seeing a big increase in the amount of books that wrestle with the various themes of this demanding disease. Whether it is a caregiver lamenting their gradual grief, or the individual facing their own reality, writing has become an important vessel for the experiences of millions of Americans going through a difficult journey. Author Barbara Brown Taylor says, “If you have ever tried to tell a doctor how the pain you are feeling feels, then you know the limits of language…metaphors are all you have since there are no words to describe pain directly.” Literature and poetry have offered new metaphors for describing the reality and pain of dementia. While self-expression for the caregiver or individual is extremely therapeutic, the increase of published books on the topic assumes that our experience isn’t just our own. Hearing another person capture a moment as if it were your own can offer an insight and comforting connection between two people carrying the same burdens.

Some great examples of this expanding genre include:

Still Alice
by: Lisa Genova.
The author holds a Ph.D. in neuroscience from Harvard University and has written a compelling novel about a professor’s diagnosis with early onset Alzheimer’s disease. The book will be made into a film starring Julianne Moore set to be released in January of 2015.   

Beyond Forgetting: Poetry and Prose about Alzheimer’s Disease
edited by: Holly J. Hughes
This literary collection compiles poetry and short prose about Alzheimer’s disease from 100 contemporary writers, doctors, hospice workers, social workers, and family whose lives have been touched by the disease.

The Stolen From: Poems About Memory and Alzheimer’s
by: Anna M. Evans
In this book, Anna Evans writes poems that are portraits of individuals going through the disease as well as those that are providing support and care. It is a poignant reflection on the nature of memory and how the disease impacts our sense of identity.

Her Beautiful Brain: A Memoir
by: Ann Hedreen
Ann Hedreen shares her story of what it was like to become a mom just as her beautiful, brainy mother, who was a Seattle schoolteacher, began to lose her mind to the unforgiving disease of Alzheimer’s.

Keeper: A Book about Memory, Identity, Isolation, Wordsworth and Cake
by: Andrea Gillies
Are memory and identity mutually dependent? The writer Andrea Gillies shares her experience of taking care of her mother-in-law Nancy in Scotland who was in the middle stages of Alzheimer’s disease. 

 

Additional Resources:

For more book titles on dementia, caregiving, and aging well visit our Pinterest Board, “GOOD READS.” http://www.pinterest.com/soundoptions/good-reads/

For more information on memory care options in the home within the Puget Sound region click here

Published on November 5, 2014.