A 'novel-la' way to educate families about dementia

Dr. Eleanor Barbera
Dr. Eleanor Barbera

As I've mentioned in past columns, delivering high quality care for residents and their families means accepting our role not only as care providers but also as educators throughout the process.

This often involves teaching family members about illnesses so that they can become strong members of the treatment team, rather than bringing sweets to someone with diabetes or inadvertently agitating a resident with dementia.

As anyone who's visited a doctor knows, however, it's easy to become overwhelmed and to have the information presented by the medical professional blur so that it sounds like a Charlie Brown cartoon teacher declaring, “Wa wa wa wa, wa wa wa wa wa wa.”

I recently learned of a promising program to teach families — particularly Hispanic families — about dementia in a manner that makes the information easier to hear: an audio-visual novella called “Forgotten Memories” (“Recuerdos Olvidados”), which is available on YouTube in English and in Spanish.

The novella, by the University of Southern California School of Pharmacy in association with USC Good Neighbors Campaign, USC Dornsife College of Letters, Arts and Sciences, and USC Alzheimer Disease Research Center, tells the story of a man whose forgetfulness begins to impact his daily life and to affect three generations of his family.

The user-friendly approach of a 16-minute novella allows audiences to connect with the characters — the man with dementia, his wife, son, daughter-in-law and grandchildren — and get information about symptoms and management of dementia.

The novella was evaluated by researchers Timothy J. Grigsby et al. and found to significantly improve positive attitudes toward people with dementia and to significantly increase their knowledge about dementia. (The research article is available for free online through the month of February.)

The program could be used as a jumping-off point for a question-and-answer session for residents newly diagnosed with dementia or for families of rehab residents who might also be concerned about memory loss. Families looking for additional information could be offered pamphlets about Alzheimer's and other dementias and be referred to local branches of dementia care organizations.

The educational program also could be open to the larger community, giving the organization a reputation as eldercare experts willing to share their expertise. Additionally, an ongoing community education series allows the facility to become a familiar venue to those likely to seek care for loved ones in the future.

The novella might also be helpful in educating new staff members about the symptoms of dementia, particularly because it shows the irritability and suspiciousness of the main character as being a symptom of the disease rather than a longstanding personality trait. Viewing irritability as a symptom makes it more likely a staff member will be able to handle it with good humor.

These free YouTube videos offer a novel way to impart information and to meet the needs of the residents in our care. Why reinvent the wheel?

Eleanor Feldman Barbera, Ph.D., author of The Savvy Resident's Guide, is an Award of Excellence winner in the Blog Content category of the APEX Awards for Publication Excellence program. She also is a Gold Medal blogger in the American Society of Business Publication Editors Midwest Regional competition. A speaker and consultant with more than 20 years of experience as a psychologist in long-term care, she maintains her own award-winning website at MyBetterNursingHome.com.


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