psychological impact of Alzheimer's disease for their
significant others, given their preillness patterns in
living, working, playing, and interacting with others.
The flashback scenes of the latter aspects serve to
emphasize the person behind the illness.
The third positive feature of the videotape is the
accounts of how the spouses/adult children go
about interacting with the patients, either at home
and/or in the nursing home. This section reminded
this reviewer of the role of music for helping these
people, as well as the skills that professionals could
develop to enhance "personhood well-being" for
people suffering dementia and their families (see
LeNavenec & Vonhof, 1996, One day at a time: How
families manage the experience of dementia. Westport, CT: Greenwood).
The fourth and least important feature from this
reviewer's perspective is the accounts of medical
specialists/professionals regarding the major biopsychosocial changes in Alzheimer's disease (which
this researcher summarizes using the acronym
JOCAM: Judgement, Orientation, Communication and
Comprehension, Affect, Agnosia, Aproxia, Attention
span, Memory, Movement disorders-tremors as well
as seizure disorders) and the drug research that is
currently underway so that the symptoms of Alzheimer's disease, like other chronic illnesses (e.g.,
Parkinson's disease) might be better controlled. One
criticism that I have of this section of the video is the
"linear" interviewing style of the professional when
assessing the patient's mental status.
In summary, this video would be of great interest
to a wide range of professionals in health care (e.g.,
nurses, social workers, psychologists), as well as educators in the area of sociology and psychology of
the family/chronic illness and a range of therapists
(e.g., recreational, music, and occupational therapists).
I think it is a significant resource for both professionals and family support groups, and it would be
useful for graduate and undergraduate students who
wish to develop a more caring approach to service
provision for these clients. In this context, the video
provides insights about the possible components for
a more caring curriculum for education sessions and
degree or diploma programs.
For those interested in a firsthand account of
the stressors associated with being diagnosed with
Alzheimer's disease, My Challenge With Alzheimer's
is the video to purchase. The patient, an ex-teacher
in her 50s, describes (a) the stressors she experienced at the time of diagnosis (feelings of embarrassment, frustration, tears, self-pity, and the role
changes that others accord you); (b) support received from family; (c) reactions of friends/neighbors,
and their eventual discontinuation of contact; (d) instances of affirmative, affective, and informational/
direct service aid. The implications for discussing the
diagnosis are outlined, particularly about how physicians might be more supportive at the time of diagnosis. Another implicit theme of the video is the
role that music (the video includes Louis Armstrong
singing "It's a Wonderful World") and prayer plays
in the patient's acceptance of the disease. The pa-
tient's words of advice for other sufferers: "Do not
be concerned about having to change" because
"remaining yourself is the best thing to do. I would
recommend this video for both students and professionals in the health care field in order to enhance
skills in empathy and related supportive measures.
Carole-Lynn LeNavenec, RN, PhD
Associate Professor, Faculty of Nursing
University of Calgary
2500 University Drive, NW
Calgary, Alberta, T2N 1N4
Canada
398
Forget Me Never, Video/1996/15 min. Produced by
Chris Whipple, ABC News/Prime Time Live. Distributed by Filmmakers Inc., 124 East 40th Street,
New York, NY 10016. 212-808-4980, E-mail: info@
filmakers.com, Web: http://www.filmakers.com.
Rental (video) $50, Purchase (video) $225.
Early Onset Memory Loss: A Conversation With
Letty Tennis, Video/1992/22 min. Produced by
Claioorne M. Clark and by the Joseph and Kathleen Bryan Alzheimer's Disease Research Center.
Distributed by Terra Nova Films, 9848 S. Winchester Avenue, Chicago, IL 60643. 773-881-8491, 800779-8491, E-mail: [email protected]. Rental (video)
$45, Purchase (video) $145.
The strength of these two videos is in the personal,
lived stories they tell. Using an interview format, the
videos introduce the viewer to Diane McGowin and
Letty Tennis. Each video tells the story of a middle
class, middle-aged, married, successful woman who
was diagnosed in her mid-50s with early onset Alzheimer's disease. Yet the videos are distinct because
they are able to highlight the unique characters and
context of the persons involved. Forget Me Never
was produced for network television; Early Onset
Memory Loss: A Conversation With Letty Tennis was
produced as an educational video. Both are engaging
and informative and will stimulate discussion and questions by viewers.
Each of the women relates her adaptation to the
disease and the future she faces. "There is less of me
each day than there was the day before. . . . I'm
being literal here. Each day I wake up there is
less of me than there was the day before. Diane
McGowin, featured in Forget Me Never, was diagnosed four years ago at age 52 with early onset
Alzheimer's. In this interview with Sylvia Chase on
ABC's Prime Time Live, McGowin tells her story of
coping with the day-to-day challenges presented by
a brain that will not let her remember what she
did yesterday. Her story is a story of adapting, of
hope, and of courage. She is an energetic, intense
woman determined to maintain her sense of self as
long as possible and not be conquered by her illness. When she was first diagnosed with Alzheimer's,
McGowin wrote a book, entitled Living in the LabyThe Gerontologist
rinth, describing her early experiences with the
disease. In the video, the interviewer, Sylvia Chase,
describes the book as "the only account of Alzheimer's ever written from the inside out" and cites
it as an example of McCowin's courage and determination.
Her strength and determination are evident in
other ways, too. For example, she continues to drive
and to cook. When asked, "How is it you can still
drive?," McGowin reveals that she had to relearn
how to drive and to follow directions of left, right,
up, down, over, under. She describes how she
learned to use detailed hand-drawn maps to find
her way to places "she used to know by heart. In
several scenes McGowin reveals her sense of humor.
She says, "Alzheimer's can be fun—if you know how
to play it.
Not all days can be faced with determination,
courage, and humor. There are problems. She has
bad days, days she calls the "Black Maria" days when
"she cannot dress herself or get out of bed. At one
point early in her diagnosis, McGowin was so depressed she seriously considered suicide. Instead of
committing suicide, she started the "first self-help support group for people with early onset Alzheimer's.
One of the group's first members, Richard, was diagnosed with early onset Alzheimer's two years ago.
He is McGowin's closest companion and supporter.
Chase comments, "When they are together, they feel
almost normal. The social support McGowin receives from her friend, Richard, substitutes for what
she sees as her husband's lack of understanding and
support. In a poignant scene, Diane's husband tells
the interviewer that he has an obligation to take care
of her (McGowin) and that he will do that. McGowin
turns to him and asks him, "Why haven't you ever
told me that?" Later in response to the interviewer's
direct question, "Are you afraid he will leave you?"
Diane quietly says "un-huh. McGowin keeps a pillow on her bed embroidered with the words, "Alzheimer's is not for sissies. And she makes it obvious
that it isn't. This segment raised questions relating
to McGowin's fierce determination for independence: Is McGowin's determination to remain so
independent motivated by her fear that should she
get worse, her husband would not be there to take
care of her? If so, then what? Also, how much of
the first question was manipulated by the interview
process?
In the opening segment of Early Onset Memory
Loss: A Conversation With Letty Tennis, Letty describes
the onset of her illness as insidious, slowly stripping
away her competence and confidence. After months
of trying to cope with what she initially thought
was stress, she went to her physician and told him,
"There is something seriously wrong with my brain.
Her description of the experience highlights her
concern with preservation of dignity and self-esteem:
"He asked me the usual questions about what's a
president, what's a vice president, a senator—which
was very demeaning to me. I still have my intelligence. It just comes across in a different way.
Being treated with respect and dignity is an imVol. 38, No. 2, 1998
portant theme for Letty. Her husband recognizes this
and struggles to find a way to balance her sense of
self and ner safety. He describes the effort to remember that there are days when she is capable of
doing things as well as days when she cannot. It is
easier for him to understand the days when she cannot do things; it is harder to remember that she has
days when she can. Letty's world is limited. She does
not drive since she got lost one day. She does not
go far from the house even when walking. She
loves to cook, describing herself as a "good cook,"
but waits until her husband is home to help her. She
does not go out to parties. "I feel uncomfortable,
I feel claustrophobic. People talking past me to
somebody else or people talking about me to
another person while I am standing right there. She
describes an incident at church when a woman
spoke to her husband about her even though she
was standing next to him, ". . . as if I was not there.
She never spoke to me. I resented that. I could
have understood her and even if I couldn't, he
would have explained it to me.
Family time is very important to her. She and her
husbana do many things together and she spends
time with her grandchildren. "I can sit with the
grandbabies and read them an entire book but yet I
don't understand what it says, although the children
do. After a few paragraphs I've lost the meaning of
the book. Her family and friends remind her she has
always been a strong fighter and she can fight this.
She notes, "It makes me feel good that they are my
little cheerleaders and I do the best I can. But as far
as fighting it, that's out of my hands.
These two videos can be used individually or in
concert. Individually, each reveals the struggle associated with the onset of early Alzheimer's. More importantly each reminds the viewer that the person
with Alzheimer's is a person with abilities, experience,
strength, and wisdom who wants what most of us
want—respect. Together the films provide a vivid contrast and raise a number of questions. For example,
how could Diane teach herself how to drive again?
What can be done to help her husband have a
better understanding of the disease and its influence? How can Letty be helped to get out more,
to enjoy her friends and social engagements again?
How can they both be so articulate about their illness when they do not have any memory of what
they did yesterday or even this morning? The strength
presented by Letty and Diane, the struggles of
their husbands to accept and understand anof to be
supportive without taking away choice are important
messages for students and practitioners to consider.
Viewing either or both of these films will help
students and clinicians overlook of the ever-present
stereotypes associated with Alzheimer's disease.
399
Raelene Shippee-Rice
Professor, Department of Nursing
University of New Hampshire
Hewitt Hall
Durham, NH 03824