Looking at Dementia Through a New Lens

By Nancy Hendley,
Dementia Care Trainer

In April, CaringKind, in collaboration with NYU Langone’s Family Support Program, had the good fortune to host a screening of the recently released documentary, “The Rest I Make Up”, directed and produced by Michelle Memran. This film asks us to view dementia through a new lens, one that is perhaps less judgmental, one that embraces life, one that gives us a unique and compelling way to convey the complexities of Alzheimer’s disease to family members and professional caregivers.

The filmmaker has worked as a journalist, a reporter, researcher, and an editor in New York City. She’s written for numerous publications, including Newsweek, The New York Times, and Vanity Fair. “The Rest I Make Up” is Michelle’s first film, for which she has received funding from the New York State Council on the Arts, numerous foundations and more than 600 individual donors. This award-winning film premiered at MoMA and has been shown in film festivals across the country – and most recently in London and Havana – to rave reviews.

“The Rest I Make Up” chronicles Michelle’s decade-long friendship with Maria Irene Fornes, a prolific and celebrated Cuban-American playwright and educator. The film follows Fornes, who, despite the onset of dementia, continues to create a vital, dignified and inspiring life for herself and those fortunate enough to know her.
Great documentaries like this one open our eyes, foster empathy and test long held beliefs.

It is unfortunate that Alzheimer’s disease has been described as a loss of self. This categorization seems dismissive and frightening. But, we know that with training and education, we can uncover the “enduring self”, the self that remains with a person who has a dementia diagnosis. We know that we can “find” the person and connect with them… even if only briefly.

CaringKind has been offering opportunities for precisely this kind of training and education, free of charge, for over 35 years. Our 10-hour Family Caregiver Workshops, monthly Monday Evening Education Lectures, and our Dementia Care Training for Professional Caregivers, present ample opportunities for all individuals and families affected by a diagnosis of Alzheimer’s or a related dementia to become more knowledgeable.

The 10-hour Family Caregiver Workshops, offered in English, Spanish, and Chinese, are based on the person-centered care approach are conducted in a supportive, non-judgmental environment. These interactive sessions include understanding the illness, enhancing communication, addressing distress, and caring for the caregiver with the intention to improve the quality of life of both person with the illness and for family members.

The nationally recognized Dementia Care Training for Professional Caregivers empowers direct care workers to provide the highest quality of care for people with dementia. The program is tailored to give insight into the illness, to educate about the disease process, to give practical tips and tools of communication, to fully explore person centered care, to address ways to ameliorate distress, and finally to allow care workers to see dementia from the person with the disease’s point of view. Currently offered on an ongoing basis in Chinese, Spanish, and English, the training remains a source of pride for the organization.

Monthly education meetings hosted by CaringKind and presented by expert professionals in the field give caregivers focused information on pressing current issues in the field of dementia care.

We believe it is possible to see the person with dementia as portrayed by filmmaker Michelle Memran in “The Rest I Make Up.” When we do so, we see new possibilities in the relationship with a person with dementia. We find hope among the challenges of the illness. It takes an effort to change our habitual ways of seeing and acting. At CaringKind, we believe it is an effort worth making.

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