Summary:

This groundbreaking international film documents the positive impact of art and other creative activities on people with Alzheimer's disease. The film's intention is to change the way we look at the disease.  It does just that.  Brilliantly.

Narrated by the actress Olivia de Havilland, the film opens with a 96 year old woman reading classical music as she's playing at the piano. Her music becomes gentle background sound track for the first vignette, a group of people intently viewing and commenting on Seurat's canvas, "Sunday in the Park."  From their intense concentration and voiced observations, one would never believe this was a group of nursing facility residents on an outing to the Chicago Art Museum.

Throughout the film--at the circus, visiting museums, or in painting workshops conducted at day care centers, nursing homes and assisted-living facilities in Europe and the US-- the hopeless, fatalistic, nobody's there stereotypes of Alzheimer's sufferers is unequivocally denied.  We continually witness people with serious memory problems being brought back into active communication and a rich quality of life.  This is more than busywork arts and crafts: trained professionals knowledgeable about both art and Alzheimer's are providing essential treatment "just as effective if not more so than the drugs."  The benefits of the non-pharmacological along with the pharmacological not only extend life, but create a life worthwhile, where people find meaning and connection.
 
In direct interview, voice-overs and interacting with "patients" and their family members, eminent experts from multiple medical fields - neurology, gerontology, psychiatry- punctuate the film reviewing the latest technologies and concurring that the essence of the person lives on. The latest brain research provides evidence that the parts of the brain related to emotions and creativity are largely spared by the disease and that our technologies for assessing dementia --dealing with sequencing things, dates in order, and what one did this morning--rely on short term memory which is totally irrelevant when enjoying a masterpiece or listening to a symphony.  The documentary also includes comments from art therapists, occupational therapists, directors of specialized care facilities, but the film is anything but talking heads.  The cutaways and extensive footage of the care giving staff and specialists interacting emotionally and physically, visibly bonding with the residents and family members is sincere, loving and inspiring professionalism.

The inspiration for the film and project is filmmaker Berna Huebner's mother, Hilda Gorenstein, once an accomplished painter known as Hilgos.  In one of Huebner's visits to the nursing home, she asks "Mom, would you like to paint again?"  Quite unexpected came the reply, "Yes, I remember better when I paint."  Learning this, the staff psychiatrist who had been prescribing small doses of a tranquilizer for her apathy, anxiety and agitation suggested Huebner enlist art students from the Chicago Museum school to help her mother to begin painting again.  We are not spared the slow and sometimes discouraging process as Mrs. Gorenstein comes alive regaining mobility and communication skills and interacting--bonding-- with the art students.  The film is replete with her colorful paintings created in the next few years until her death at age 93.

"The creative arts are a doorway.  Once that doorway is opened ... things are tapped ... that are genuine and active and alive that don't get tapped in our normal day social interactions when we sit at a table and make conversations over a meal or we read a newspaper article and then talk about the headlines of the day.... The creative arts bypass the [cognitive] limitations and simply go to the strengths. People still have imagination in tact all the way to the end of their disease."

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This DVD, a documentary of a medical student retreat to a museum, illustrates an approach to cultivating empathic understanding in medical students and residents by using the visual arts.  Florence Gelo, D.Min, created the arts program and the video. She is Behavioral Science Coordinator, Family Medicine Residency, Drexyl University College of Medicine. Students observe closely four paintings and are encouraged to experience their feelings about what they are seeing, and to express those feelings. The paintings are Prometheus Bound (Peter Paul Rubens 1618), Massacre of the Innocents (Pacecco de Rosa 1640), Rachel Weeping (Charles Wilson Peale 1618), and The Agnew Clinic (Thomas Eakins 1889; see annotation in this database).

Prometheus Bound is a disturbing scene of an eagle ripping the liver out of Prometheus. Students comment on the nakedness. the vulnerable position and the helpless expression on the face of this strong man, and on the eye contact between the eagle and Prometheus. In Massacre of the Innocents Dr. Gelo calls our attention to the faces of the mothers, helpless to save their children from the swords. In Rachel Weeping Gelo asks the students if they noticed the vials of medicine before the days of allopathic medicine.  Did they notice the one tear dropping from Rachel's face? (Peale added the medicine vials and his wife weeping to the original portrait of his infant daughter Margaret who died of smallpox.)

Two physician speakers, Horace DeLisser, and Rhonda Soricelli provide additional commentary about how engagement with a painting is similar to engaging with a patient, and how learning technology-focusing on the scientific and the medical- detracts students from learning to look at the big picture and the humanistic side of medicine.  Traditional medical education does not teach doctors to be present to patients, to sit by their sides, to listen and invite dialogue of suffering and to not deny those aspects of what it means to be ill.  Dr. DeLisser further acknowledged his personal struggles with feelings of frustration, anger and grief when patients died in the ICU.  The importance of talking about the vulnerability of physicians, the concerns about what else they might have done, propelled him to develop Grieving Rounds.

A cancer survivor contrasts a "callous" physician's response to her care with  another physician who exemplified someone who has the expertise not only around the disease, but  has the ability to acknowledge the whole person and offer his companionship to be there to the very end: "...what we're going to do is....We'll take this step by step."

 

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This short documentary film was made by Angelo Volandes while he was a fourth year medical student at Yale, as part of his senior thesis. It describes the life of Ray, a 70 year old dermatology patient who has suffered from neurofibromatosis since he was a teenager. Severely disfigured by this condition, Ray has led a life of social ostracism, loneliness, physical discomfort, and stoic depression.

Angelo introduces the film, frankly describing his own "visceral reaction" when he first encountered Ray in clinic. Ray and his long-time physician, Dr. Braverman, alternately discuss how Ray’s condition has affected every aspect of his life. Although Ray has endured more than 30 operations to remove the tumors that become infected, itch, and plague him, it is social ostracism that has most powerfully altered his life.

The camera follows Ray as he shops in the supermarket while doctor and patient describe what an ordeal this can be. Worse than suffering the stares of fellow shoppers is being treated like a contagious carrier of the plague by the checkout clerk, who refused to handle Ray’s money. Ray tells how incidents like these have landed him in the Emergency Room numerous times, out of sheer emotional upset.

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Worlds Apart is a set of four documentary videos designed to stimulate thought and discussion about the effects of culture on communication and medical decision-making. Each video encapsulates the story of a real patient and his or her interactions with physicians and family.

The four videos are: (1) Kochi Story--an Afghan man, diagnosed with stomach cancer, decides about chemotherapy amidst miscommunication due to translation issues and religious convictions; (2) Chitsena Story--the mother of a four-year-old girl from Laos is caught between physicians who tell her that her daughter needs surgery to correct an atrial septal defect, and her mother who upholds the traditional Khmu beliefs that scars, including surgical scars, are injurious to a person in future lives; (3) Phillips Story--an African-American man on dialysis discusses the prejudices against black people in the health care system, particularly the decreased chances for receiving a renal transplant; (4) Mercado Story--a 60-year-old Puerto Rican woman who lives in Hell's Kitchen, New York City, explains the complex social situation which affects her ability to take care of her chronic health problems, such as diabetes and hypertension.

The films depict the patients and families in various settings--in doctors' offices, at other health care facilities, at home or work, during religious ceremonies. Phillips Story is different in that only the patient speaks during the film--in the other three stories we hear family members, translators, and physicians. The pitfalls of translation by a family member or friend are discussed, as well as the need for the physician to elicit information from patients about the social contexts that may affect their health and decisions.

For example, Mr. Kochi's religious beliefs contravene the use of continuous infusion chemotherapy, but not other regimens--this distinction is not elucidated for many months. Hence cultural competency in health care requires that the provider not assume reasons for patients' behaviors and decisions but rather emphasizes communication to understand the particulars of the situation.

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Filmed at Shands (teaching) Hospital in Florida, this documentary validates the importance of the arts and expressive therapies in all aspects of health care, including medical education. Pediatric oncologist John Graham-Pole and poetry therapist John Fox -often as a team- work with patients of all ages in groups and at the bedside.   Other physicians including a neuroscientist provide rational explanations of the release of endorphins and brain changes resulting from creative activities.  Though the healing process initiated by the reflective act of writing poetry is ostensibly the focus of the film, the documentary is permeated with the transforming effects of dance and art therapies in their ability to lessen physical and emotional pain; the importance of healing environments, not just paintings in lobbies, but in patient created ceiling tiles and wall installations; and especially the warmth, intimacy and humanity generated by exemplary physician communication skills.

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This documentary film explores the interdisciplinary quest to understand the mind--its relationship to the brain, to the soul, to consciousness and sentience, and to the societal implications of free will. The film begins with the crisscrossing flow of people in a train station and an overvoice expressing the existential questions of "who are we?" and, ultimately, "who am I?"

This compelling image, filmed in black and white, serves as a representation of people as humanity and as individuals, as well as a metaphor for flow, such as of time or of impulses along a neural network. Hence, already in the introduction, the viewer is aware that this film will address some of the deep philosophical questions of all time complemented by visual imagery which enhances and enlarges on the dialogue.

The film is then divided into twelve sections: The Soul, The Body, Mental Disorder, Mind to Molecule, Bit to Brain, Consciousness, Free Will, Citizenship, The Moral Brain, The Brain on Trial, The Medical Mind, and Who Am I? Experts from multiple fields such as theology, neuroscience, psychiatry, law and justice, philosophy, sociology, history of medicine, physics, computer science, and filmmaking offer insights and questions either directly to the camera, or as voice-over for other imagery.

For example, to name just a few of the numerous eminent persons in the film, there are statements by mathematical physicist Roger Penrose (Shadows of the Mind: A Search for the Missing Science of Consciousness, and The Emperor’s New Mind: Concerning Computers, Minds and the Laws of Physics), philosopher Daniel Dennett (Darwin’s Dangerous Idea: Evolution and the Meanings of Life, and Brainchildren: Essays on Designing Minds), philosopher John R. Searle (Mind, Language and Society: Philosophy in the Real World) and neurologist Antonio Damasio (Descartes’ Error: Emotion, Reason and the Human Brain). The multiple experts all address the basic question posed by the film: "What will a science of the brain add to the human story?" but the approaches to the question, and what aspects of the question are most important, vary considerably in this far ranging journey through religion, history, ethics, medicine and science.

A few of the many interesting segments of the film include sections on cognitive neuroscientist Nancy Kanwisher who studies specialization by parts of the brain, such as a face-recognition center; developmental neuroanatomist Miguel Marin-Padilla, who has studied the motor cortex for over 25 years, which he demonstrates by dissection to be smaller than the tip of his finger; and Dennett’s one-armed robot, Cog, which is "learning" in developmental stages as an infant would. Eloquent commentary is also provided by computer scientist Jaron Lanier, sociologist Howard Kaye, psychologist Nicholas Humphrey, and filmmaker Ken Burns, among others.

Much of the film deals with psychopathology and implications for morality, behavior, and responsibility for behavior (free will and crime). Segments include an interview with a patient with manic-depressive disorder, a historical note on Phineas Gage (whose dramatic wound of his frontal lobe so altered his behavior), and a lawyer, psychiatrist and judge discussing free will, diminished capacity, and the legal system.

The film concludes with some concerns about reductionism to the biologic model of the mind, the growing haziness of borders between human and artificial intelligence, and the role of psychoactive medications. Although full mapping of the brain may not lead to complete understanding of the mind, still, the film concludes, the quest is fun.

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When diagnosed with Amyotrophic Lateral Sclerosis (ALS) at age 36, filmmaker Ben Byer began recording a video diary.  Episodes from his diary create the engaging, coherent narrative of "Indestructible," a documentary that intimately, but unsentimentally invites viewers to witness Byer's and his family's responses to his diagnosis.  Their first impulse is to search for a cure for this degenerative disease, "the grim reaper of neurological diseases," a physician tells him.  They also find themselves seeking ways to understand living with loss, most centrally losing the illusion of control over their lives. 

Over the course of three years Byer and family travel to six countries, including Greece, China, Tibet, and Israel.  During his journey, Byer, an irrepressible extrovert, also seeks the companionship and insights of other ALS patients and families, wishing to create a world-wide bond among people who struggle daily.   A montage of clips from family videos prefaces the film, revealing Byer in the decades before his diagnosis.  The images show a luminous child, who grows into a playful, photogenically handsome teen ager and young man, husband, father, son, and brother.  His exceptional force of personality, incandescent smile, and spontaneous sense of humor fill the screen.  These robust images contrast touchingly with the thinner, clumsier Byer who later struggles to remove a t-shirt.  But they also reveal continuities between Byer's capacity to enjoy his life during seemingly carefree days and his strength of spirit as he becomes increasingly more disabled, disappointed, and introspective.  Although even such strength can't alter his condition, it nonetheless sees him through to the next day and fresh adventure.

The family in the montage and the film emerge as Byer's source of support as well as conflict.  One of the most devastating conflicts arises from his father Steve's restless determination to find treatments to reverse or retard ALS.  After searching the Internet for remedies, Steve turns his garage into an ad hoc distribution center for an herbal concoction he encourages his son to drink.  To advance his son's place on the waiting list of a Chinese neurosurgeon who performs olfactory cell transplantation, he recruits other ALS patients for the procedure.  The results are dubious, in some cases perhaps fatal.  After these strategies fail to reverse Byer's physical decline, and place others at risk, the camera rolls during a family showdown that exposes their fears and desperation as it acknowledges their love.  This memorable scene does so in a way that's consistent with the rest of the film: by letting the camera show, not tell. 

Even the many moments when Byer's family help him with daily activities and his most reflective moments at the end of his film resist sentimentality and easy didacticism.  Byer's equally irrepressible young son John raises a fork wound thick with pasta to his father's mouth and loops his belt through his pants, setting off giggles all around.  The ordinariness and extraordinariness of these acts, the learning of selflessness, the uneasy acceptance of dependency, the inevitability of loss are told through such images or captured in fragments lifted from daily conversations.  Bathing Byer, his brother Josh matter-of-factly says, "You don't have all the time in the world":  a searing acknowledgment of Byer's decline that reminds us of all human fragility.  The closing scenes of the film unobtrusively place Byer's solitary experience in the long history of the search for meaning in human struggle.  They record his wobbly, yet victorious ascent of Masada, supported by Josh, right after we hear a rabbi recount Camus's version of the myth of Sisyphus. 

 

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"Every year I bury a couple hundred of my townspeople. Another two or three dozen I take to the crematory to be burned.... I sell caskets, burial vaults, and urns for the ashes.... I am the only undertaker in this town." The speaker is Thomas Lynch, a poet, writer and funeral director in Milford, a small town in central Michigan, where he and his family have cared for the dead and the living for three generations. The words are the introduction to a documentary film which was written, produced and directed by Miri Navansky and Karen O'Connor for PBS Frontline and which is a visual, aural and dramatic companion to Lynch's award-winning collection of essays, The Undertaking: Life Studies from the Dismal Trade (see this database).

Although Lynch's poetic sentiments and philosophical observations about our own cultural estrangement from death ("We're among the first generations for whom the presence of the dead at their own funeral has become optional....") and about the crucial importance of our accompanying the dead ("In getting them where they need to be, we get where we need to be....") are a significant feature of the film, he himself is not the focus of the film. Rather, he serves as both guide and chorus through the stories of four individuals and families: Robert Kelly, eighty-five, who is planning his own funeral in meticulous detail; Anne Beardsley whose beloved Aunt Mary, eighty-four, is now facing death as boldly as she lived life; David King who is skeptical about the meaningfulness of bearing witness at his father's cremation; Nevada and Anthony Verrino who are the parents of a two-year old son born with and dying from a rare genetic condition.

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This video is the film of the staged one-woman play written and acted by white South African Pamela Gien. The play begins in 1963, in a white suburb of Johannesburg, in the fenced yard of the Grace family and their black servants. Gien starts as six-year-old Lizzie Grace. Gien then fluidly shifts roles to enact twenty-eight different characters from newborn to age eighty-two, black and white, male and female--who talk, gesture, sing and dance in this tour-de-force performance.

The set contains only a large, plain swing; even the berry-bearing syringa tree to which the swing is attached is left to the imagination. Gien’s costume is similarly muted--she is barefoot and wears a beige jumper over a simple tee shirt. A sound system provides music of ethnically diverse origins at appropriate moments.

The play opens with Gien swinging and talking in a girlish voice and using exaggerated childlike gestures. Lizzie exclaims that she is "a very lucky fish": she proceeds to explain to the audience the meaning of her favorable white nailbed spots. Lizzie is, by self-definition, a "hyperactive," outspoken child with great imagination and energy. She is cared for by Salamina, a loving nanny and servant.

Lizzie’s father is Dr. Isaac Grace, who delivers Salamina’s baby in the home. The child, Moliseng, "has no papers" and is harbored illegally by the Grace family--a constant source of worry for all, including Lizzie. Isaac is a Jewish atheist, and Lizzie’s mother, Eugenie, is Catholic and of English descent. Their neighbors, however, are bigoted Afrikaners and create great tension for the Grace household. "Don’t ever make this place your home," advises Dr. Gien to his daughter after dealing with racist clients who do not want to be in the same examining room after a black patient.

Lizzie’s liberal, generous grandfather is brutally murdered by a Rhodesian freedom fighter shortly after the resolution of another crisis: Moliseng, suffering from malnutrition, is missing from the overcrowded hospital. The play then fast forwards through Lizzie’s college years, when Moliseng, at age fourteen, is murdered in youth riots. Lizzie leaves for America, land of the (she pounds her chest) "free and brave." She returns years later, with her infant son named for her grandfather, to visit her father, her demented mother, and, above all, her beloved Salamina.

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This film combines light-hearted scenarios of poor to absurd communications with patients on issues of death and dying, with measured advice from physicians expert in such communications. In addition, a scenario of a woman physician and her patient with advanced breast cancer models a positive example for doctor-patient communication on issues of planning for death and choosing life-sustaining options.

The film opens with a madcap grim reaper dancing and singing a message from Dr. Fletcher to a patient at home: you have six months to a year to live. These same actors morph through a series of roles sprinkled through the film: a physician using medical jargon with a non-comprehending patient, an ad for a phrase book to "speak like a patient," another doctor-patient scene with the physician now graphically describing cardiopulmonary resuscitation using wild gestures, and a waiter advising a patient/patron on item selection from the Terminal Cafée menu (no vegetables!).

The experts discussing death and dying are: Michael Clement, MD; Lisa Capaldini, MD; Doriane Miller, MD; Bernard Lo, MD and Kate Christensen, MD. They offer sage advice on communication, avoidance of medical terminology (even words like 'diagnosis' and 'procedure' can be misunderstood), pain management, informing patients of anticipated poor outcome with cardiopulmonary resuscitation, asking patients what is important to them, goals of treatment, who should make medical decisions, and the setting of such discussions. Cultural sensitivity is briefly discussed, with an emphasis on respecting the patient's individuality rather than assuming a fit within cultural expectations.

The exemplary scenario demonstrates positive qualities and key points: both physician and patient are seated and dressed; the physician asks the patient if she wants another person present for the ensuing discussion and also inquires as to the quality of discussions with the spouse, whom the patient designates as the one to potentially make medical decisions; the specific fears and desires of the patient are sought; and the physician recaps what the patient says and asks her if the summary is correct. In addition, resuscitation is explained in detail. The visit concludes with the doctor encouraging future discussions and allowing decision changes.

The film ends with the finale to the opening scene. The patient slams the door on the grim reaper, who, beset by dogs, returns to Dr. Fletcher and advises the doctor to talk to his patients himself.

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