Most documentary films about Alzheimer's disease focus on the burden that caregivers face when they have to manage the problematic, sometimes belligerent, behaviors of their loved ones — and for good reason.
The traditional thinking has always been that it is best for patients with Alzheimer's disease to stay in their own environment. But the likelihood of nursing home placement increases rapidly with time: one in five patients are admitted to nursing homes one year after the diagnosis; about half, after five years; and nearly all after 10 years. (By comparison, only about 10 percent of elderly patients without dementia go to nursing homes.) Indeed, with over 9 million people in the US alone caring for relatives with dementia, caregiver burnout is a major concern.
Two wonderful new films — now available on DVD and on streaming sites — specifically address this pressing and wholly uncomfortable issue. One, a documentary — “You're Looking at Me Like I Live Here and I Don't” (2012) — was directed by Scott Kirschenbaum, and was filmed entirely on an Alzheimer's care unit in Danville, CA. The other, a feature film, “Fred Won't Move Out” (2012), written and directed by Richard Ledes, is based on a personal memoir, and was shot in the house of the director's parents — providing the film with an authentic, documentary-like feel. Both films should be essential viewing for neurologists.
“You're Looking at Me Like I Live Here and I Don't,” which originally aired on PBS, takes a radical approach by providing a window into dementia from the perspective of the patient. We observe Lee Gorewitz, a nursing home resident in her 70s in close-up as she is shepherded from one activity to the next; the story is fully hers to tell. It becomes rapidly clear that Lee is different from the other residents. Acting as a “tour guide” of the nursing home, she hops around from place to place. She seems very comfortable. She is not agitated, sedated, or immobilized.
The film opens with photos of Lee in her youth before her diagnosis, and then moves quickly to her life on the unit. There is no back story or narration. The filmmaker asks her if she knows what Alzheimer's is. She answers: “Alzheimer is the family of ... uh... God, I have lost it. Alzheimer is the person that goes down and helps to help the person who does and gets to feel what it is once again. Alzheimer? That is kinda funny for me... weird... I guess I do not understand how you can have two together.”
She walks through the nursing home — pleasant, spry, and chuckling — but she has no insight. She loses her train of thought frequently. She reads her nametag outside her room but she can only spell her last name. When she meets one of the caregivers or nursing assistants, she asks: “Are you doing a simple thing that you do not have to do anymore?” When the caregiver responds, “What do you need?” she answers: “It all depends on how it goes along.” She dances solo in front of the camera, snapping her fingers like a lounge singer, with Frank Sinatra's “Somewhere Beyond the Sea” playing.
The other residents are in varied stages of dementia; some are engaged, others sit hunched over. When Lee comes across an older woman slumped over in a chair, she comments: “That one looks like it's dead.” She is very interested in doors that lead to the outside world. She tries to work the code of the exit door, but she does not become frustrated when it does not open after she randomly punches in numbers.
In a tender moment, Lee looks at family photos and comments, “Here it is, my family who are really doing nothing to help me,” with a chuckle. “... you always did it that way,” she adds. I can imagine such a statement must be quite confusing for her family.
One of my colleagues, a speech pathologist, described Lee's language as relatively devoid of specific content words (nouns and verbs), with pronouns (his, it, they) often used without her listener knowing who or what she is referring to; her content is tangential, convoluted, meandering, and disjointed. These attributes combine to suggest a degrading not only of language but, and more profoundly, also of the thinking that drives what we aim to express.
This remarkable minimalistic documentary shows that dementia, at least from the patient perspective, may not always be distressing. Lee seems to have a happy disposition — at least for some time. The filmmaker does not appear to make light of her funny presentation — the double-edged sword of any documentary in a less than aware person — but shows how touching and happy some patients can be in a protected environment.
DEMENTIA IN A COUPLE
“Fred Won't Move Out” is a devastatingly beautiful film that looks at dementia as it strikes an elderly couple — Fred (Elliott Gould) and Susan (Judith Roberts). Their children — Bob (Fred Melamed) and Carol (Stephanie Roth Haberle) — are trying to find a solution after an unclear medical event that portends that something serious could happen with their parents.
Susan is far more affected than Fred. Victoria (“Queen Victoria”), a caretaker from Ghana played by Mfoniso Udofia, tries to keep Fred and Susan mobile and in a “natural environment,” She tries to do the main errands but also wants to keep Fred as active and participatory as possible.
In one scene, Fred can barely come down the stairs alone and Susan is afraid to even sit down. “Good morning, Susan,” Fred says. “Whoop-de-doo” is Susan's answer.
The children feel something has to change rapidly. Bob tells Carol:
“The thing is, when he is up there by himself, we have no idea what medication he is taking or how much. We don't know if he is taking her medication...I agree it is totally nuts.” Bob tries to discuss his concerns with his parents and simply suggests they are going to live “like in a dorm.” That seems agreeable to Susan, but not to Fred, and he responds curmudgeonly, not seeing the point of going elsewhere.
In one scene, a piano player comes into the home to provide music therapy. All are singing Susan's favorite tunes. Susan, nearly catatonic, changes dramatically, smiles, and enthusiastically sings and laughs. Fred loves it: “It makes her happy; and when she's happy, it makes it much better for all of us.”
At the end of the film Susan inevitably leaves for a nursing home, but Fred stays with Victoria. The children are trying hard to get Fred to agree to move out and join Susan. When his children are there to pick him up, he does not want to go. Fred asks: “Who will be here when Susan comes back?”
In a key moment that may foreshadow the film's conclusion, Bob tells his daughter the story of the myth of the gods Zeus and Hermes who came back to earth to check out the hospitality among the Greeks. They quickly find out that nobody lets them in except for one older couple. Zeus and Hermes offer them one wish and the older couple ask them to make sure they die together. Zeus and Hermes turn them into two oak trees so they could live together for a long time.
The film's cut-away scenes show Fred and Susan's house with its fantastic foliage, flowerbeds, and a majestic lake view. The film ends abruptly. In the end, we do not know whether Fred moves out. As the credits come on, I could not help but wonder: Would it not have been better if Fred and Susan had turned into oak trees?
Dr. Wijdicks is professor of neurology at Mayo Clinic in Rochester, MN.