Listening

The Doobie Brothers gave good advice when they sang, Listen to the Music, written by Tom Johnston:

Wo, we got to let the music play 
What the people need
Is a way to make 'em smile
It ain't so hard to do if you know how
Gotta get a message
Get it on through
Oh now mama's goin' to after awhile
Wo, oh, oh, listen to the music
Wo, oh, oh, listen to the music
Wo, oh, oh, listen to the music
All the time 

Like executing advance health care directives, those who can listen to music should document our favorite music while we still have capacity.  

At San Francisco’s Opera Plaza Cinema, filmmaker Michael Rossato-Bennett showed Alive Inside, a documentary about the transformative power of “personally meaningful” music to “re-awaken” memories of persons with dementia. (Screen shows nursing home resident Henry becoming animated while listening to his favorite music, in photo above.)  It follows New York social worker Dan Cohen dispensing iPods first at a nursing home and seeing the benefits (regain self-expression, memory recall, physical movement) as residents listen to their favorite music, then he brings iPods to a private residence in the community with similar effect.  Neurologist Oliver Sacks, author of Musicophilia:Tales of Music and the Brain, reminds us that Kant called music the “quickening art” because of its ability to bring listeners immediately to life.  For persons with dementia, this is possible because musical memories activate more parts of the brain last touched by Alzheimer’s, the most common form of dementia.  Alive Inside provides these facts:

5 million Americans have dementia

10 million care for them

1 million in nursing homes lose their connection to life

In Alive Inside, Dr. Bill Thomas discussed how music creates spontaneity in contrast to the regimented world of nursing homes (total institutions), where residents lose independence, dignity and control over meds that sedate them; as they struggle to adapt, they end up withdrawing inside as "living dead" people.  However, he notes that a $1,000 anti-depressant is “real business” (reimburseable under health insurance system), while a $40 music system does not count as a medical intervention; Western medicine views the body as a machine, while music touches the heart and soul of the patient. 

Twenty years ago, Dr. Thomas published The Eden Alternative: Nature, Hope and Nursing Homes, critiquing the prevailing nursing homes modeled after hospitals. Based on this medical model of treatment focused on disease, disability and decline (body system failures), residents are overtreated with psychotropic drugs, unnecessarily restrictive diets that take pleasure out of eating, endless activities programs to meet needs of regulators (rather than true needs of residents), and a therapeutic mentality that remakes ordinary life activities (e.g., pleasure of animal companionship, enjoyment of children, music, art, movement and touch) into treatments rendered by certified therapists.

In its place, Dr. Thomas proposed his holistic Eden Alternative model of personalized care that promotes growth in an enlivened human habitat so residents have “close and continuing contact” with a harmonized diversity of plants, animals and children to combat the “three neglected plagues of nursing homes”—loneliness, helplessness and boredom (social system failures that can be addressed by providing companionship, usefulness and variety).  Instead of scheduled visits for pet therapy, pets would live with residents.  Dr. Thomas acknowledged the role of music when he stated “few human hearts are immune to the uplifting effect of a bird’s song” and suggested parakeets—though imprisoned in bird cages, while dogs and cats roam freely. 

I had many questions, but I was reluctant to ask during the 15-minute Q&A with both filmmaker Michael and social worker Dan after the screening because the audience seemed so enamored with the idea of bringing iPods to nursing home residents with dementia.  During this Q&A, Dan mentioned that a resident listening to just one hour of music in the morning is “good for the day.”  He also reminded us that long-term memory is retained longer and hearing is the last sense to go when one dies.  I wondered if this suggested that one-hour of personalized music alone for the hearing was sufficient to combat loneliness, helplessness and boredom—without adding Eden Alternative elements like plants, animals and children?

My critical mind wondered why the woman living at home in the community was deprived of music until social worker Dan got her an iPod playing her favorite music? Did she stop listening to her favorite oldies music when her 8-track became obsolete, and did not transition to cassette tape or compact disc? Is the takeaway message for us to avoid music (nature) deficit disorder so we should “listen to the music all the time” and be alive to experience every moment of life as a gift, prayer or sacrament like e.e. cummings' the gladdest thing?

Why select so many happy-dance songs? For example, the film featured Bobby McFerrin of Don’t Worry, Be Happy (1989 Grammy Award Song of the Year):

In every life, we have some trouble

When you worry, you make it double

Don’t worry, be happy . . .

The landlord say your rent is late

He may have to litigate

Don’t worry, be happy

In light of the increasing rates of evictions when renters can lose their home within three weeks for failure to pay rent and the fact that 90% of tenants in eviction cases go without legal representation, listening to this song is creepy . . . though last month San Francisco approved funding $1 million for eviction legal defense services.

How about listening to songs that arouse other emotions like anger (Pat Benatar’s Hell is for Children), sadness (Rolling Stones’ Angie), grief (Tracy Chapman’s Behind the Wall), pensiveness (Beatles’ Revolution), etc. to fully express the range of emotions instead of simply joy? How about songs about social justice (Shane Philips’ Rise Up) to inspire change? All honest emotions that flow through (unstuck) can engage us with life.

Like Dr. Thomas’ The Eden Alternative, a non-profit organization that offers culture change training to de-institutionalize long-term care environments and membership in Eden Registry for $3,300, Dan Cohen’s opportunistic Music & Memory is a non-profit that provides training and certification for $1,600. When Music & Memory asks, "Can an iPod change a life?" I wondered whether it has any financial interest in Apple company stock for marketing its products? Also, I wondered about potential hearing loss from use of headphones/earphones? 

In the audience, I spotted California Advocates for Nursing Home Reform (CANHR) Senior Attorney Prescott Cole, who was guest lecturer in my Ethical and Legal Issues in Aging and Social Services course.  He also wrote and composed Shady Manor, a 22-song musical about “a nursing home run by an ambitious and corrupt administrator trying to make Shady Manor show a profit so he can get promoted by his corporate higher-ups.  To make a profit he cuts corners on supplies and under-staffs, causing misery for the residents.”  Shady Manor was performed last year as a fundraiser for University Mound Ladies Home, a non-profit assisted living that was ultimately “saved” from closure when acquired by for-profit AgeSong this month. 

 

At the San Francisco Main Library, People With Disabilities Foundation hosted a seminar, Abuse Against People with Mental and/or Developmental Disabilities: Physical, Sexual and Verbal Abuse in Institutional or Community Settings, to address the potential causes, ramifications, and preventive measures related to the abuse of people with mental and/or developmental disabilities.  Dr. Clarissa Kripke (seated 2nd to left behind table, in photo above), UCSF Clinical Professor of Family and Community Medicine, provided 10 tips for improved communication between professionals and people with psychiatric and developmental disabilities:

1. Speak directly to patients.  Figure out how people communicate best and support it.
2. Presume competence.  Give access information and education as well as support for people to make their own decisions.
3. Give people the tools to communicate about mistreatment, boundaries and choices.
4. Teach people to set boundaries and protest to help people maximize their potential and to participate fully. Compliance training is a set up for abuse.
5. Train families and professionals how to listen and respond. Communication is a two‐way street. Put people with disabilities in charge of developing the curriculum.
6. Take all complaints about mistreatment seriously. Investigate them, and protect people from the accused during that process. 
7. Give people opportunities to try and fail when the stakes are low, so that people have experience with natural consequences when the stakes are higher.
8. Get a history of baseline function. In people with communication challenges, illness presents as a change in behavior or function. 
9. Respect personal boundaries. Offer assistance, but wait for a response and instructions before acting. Treat assistive devices such as wheelchairs and communication devices as personal space. 
10. Give people access to their chosen advocates and supporters. Many people need support to communicate and to make decisions, especially when they need it the most such as when they are in crisis or transition.

Dr. Kripke, who received the Chancellor Award for Disability Service and has a son with autism, noted Autistic Self Advocacy Network (ASAN) drafted model state legislation to enable Persons with Disabilities a trusted person to help communicate with doctors, understand health care information, make informed decisions about health care, and/or carry out daily health-related activities. This would be like a power of attorney for health care, except there would be no transfer of decision-making to another person. 

CANHR Staff Attorney Tony Chicotel said chemical restraints have been the primary treatment for behavioral expressions related to dementia, such as memory loss, confusion and loss of ability to communicate.  He asked, “what do you do with a crying baby? A. Give them drugs, or B. Tend to their needs and comfort them?”  Instead of drugs, the focus should be the least medicating approach recognizing behavior is communication, knowing care recipient, and meeting them where they are (versus correcting mistakes); and comfort-focused care involving culture change components (liberalized diet, personalized sleeping and showering schedule); active observation, notation and collaboration; and comfort as the goal of every experience.  Tony suggested we reframe the language: for example, viewing the person with dementia resisting care v. exercising self-protection; or wandering v. expressing underlying boredom or lack of physical activity. 

This reminded me of Dr. Thomas saying, “If only we could care for nursing home residents as we care for children. After all, we expect children to grow and we do everything we can to nurture that growth.”  I wondered how can we support growth when caring for persons with dementia (particularly in its progressive and degenerative form like Alzheimer's disease) who grow more dependent as they lose capacity for decision-making? 

I did a lot of listening and learning at Discover You: A Day of Connections, Information and Possibilities! an all-day seminar presented by National Federation of the Blind of California and LightHouse for the Blind.  The main message was set high expectations to do what you want, focus on your strengths, talk about your disability and figure out how to do things and ask for accommodation if needed.  GK Callahan’s The Beaded Quilt (2011, photo above) mural represents the colorfulness and diversity of the Bay Area blindness community who assembled it from almost 150,000 colored beads, and over a year in the making.

Architect Chris Downey, Attorney Shannon Dillon, and CEO Kevan Worley (also Executive Director of National Association of Blind Merchants) participated in breakout session, Discovering Employment Opportunities.  Chris related how soon after he lost his vision in mid-life, a social worker began talking to him about career alternatives.  As an architect, Chris said his work is about trying different points of view and problem-solving, so he ignored the social worker’s advice and found adaptations to continue working as architect while carving out a niche in designing for the blind!  Because architects are obsessed about the world around them, he rediscovered the world without the visual—paying more attention to space and sound—so it was like being a kid again. 

Deborah Kendrick, author of Jobs To Be Proud of and Jobs That Matter from AFB Press, is also columnist for Columbus Dispatch with her latest article, How much do you know about disabilities?