Welcome to Memory Care Support’s 
January 2023 Newsletter!

The Stereotypes of Dementia

I was talking with a fellow nurse practitioner recently who specializes in geriatrics. She mentioned how pleased she was when she could make a difference in the quality of life of her older clients. Curious, I asked her about her clients living with dementia and how she could improve their lives.  I was dismayed to hear her say, “There isn’t really anything I can do for them, I just try to be sure they are safe and clean.” Wow, I made a note not to recommend her to any of my clients living with dementia!

I’ve heard many professionals use labels such as: helpless, demented, behavior problem, victim, wanderer, combative, non-compliant, feeder, or difficult to describe people living with dementia. Most of these terms are really describing how these actions affect us, as the professional, rather than describing the person with dementia. If we say, “she’s combative,” or “she resists care,” we’re describing how the actions of that person affect us, rather than give any information about what that person is trying to communicate. We are making it about ourselves, rather than the person we should be trying to understand and support.

It is also common to use terms such as Stage 1, 2, 3 and 4 to categorize people living with dementia. I don’t subscribe to classifying people into dementia “stages” as each individual can retain unique characteristics and not fit into a specific neatly-packaged stage of dementia. Like all of us, each person living with dementia is an individual and will be better at some things than others, and will retain some skills and talents for years, not necessarily fitting into a defined category of abilities and characteristics. When someone tells me about a person who is Stage 3 dementia, I ask them to describe that person’s current interests and abilities, rather than just describe their losses and inabilities.

When 86 year old Bob transferred from the hospital to the nursing home I was working at, his discharge information included post-pneumonia, Stage 4 dementia, and receiving hospice services. He appeared frail and barely responsive when he arrived at the nursing home. His daughter was distraught and described a much more vibrant man prior to his recent hospitalization. He lived in his own home with various family members piecing together a support network for him, occasionally augmented by paid care staff. He was forgetful but still moved around his house and garden and could be cued to assist with household tasks.

His daughter said he had been sick for a couple weeks before he became seriously ill with pneumonia and was finally hospitalized. During his 10-day stay in the hospital for IV antibiotics, he had acquired a urinary infection, stopped eating and had to be sedated for agitation. His hospitalist felt he was unlikely to ever regain his strength and vigor and he arrived at the nursing home on hospice care.

Long story short, within 30 days, Bob was able to feed himself again, enjoyed family visits and observing various activities around the nursing home. His long list of medications, including lorazepam, Seroquel, and other sedating medications, were decreased, and finally discontinued within a couple months. Bob’s vigor returned, as demonstrated by his great sense of humor, his weight gain, and obvious enjoyment in participating in music and gardening events. His daughter had her dad back!

So a hospital-based physician, probably accustomed to saving lives of younger, more vigorous, adults, saw Bob, who had experienced serious infections, weeks of debilitating bed rest, significant weight loss, and prescriptions for multiple psychoactive medications, as hopeless and unable to recover any quality of life. His diagnosis of dementia also added to the futility of hoping for recovery. Like the nurse practitioner I had spoken with, the sentiment was “there isn’t really anything I can do for them.”

When I share with people that I am a nurse practitioner specializing in support for people living with dementia, I often receive a very off-putting reaction. In fact my dentist’s response when I told him what type of work I did was memorable, “Oh wow! Well I just couldn’t do that work. I need to feel like I am able to make a difference.”

Not only did I feel devalued by his comment, but he certainly devalued all the people living with dementia that I work with. Supporting them wasn’t worthwhile or made a difference? I have since changed dentists…

But I think all of us need to ask ourselves, what are our mental images of people living with dementia? The media has done a good job of portraying them as victims, unable to have relationships or meaning in their day. When you tell someone that you work in a nursing home or assisted living, do they bring up an image of an unresponsive, bed-bound person?

Are we all guilty of perpetuating the stereotype of someone incoherent and unable to interact when we neglect to tell the stories about people with dementia who still write poetry or share their favorite cookie recipe or the joy they experience at happy hour on the patio or walking their dog or their smile when they see you visit? There is still life to live with dementia and our job as professionals is to enable that meaningful life, whatever that means for each individual.

Have a great day!

If you work in Assisted Living or Nursing Homes and want to make your dementia care program even better email or call me for a free consultation.

Anne Ellett, N.P., M.S.N.
AANC Certified Gerontological Nurse
Founder, Executive Director - Memory Care Support
www.MemoryCareSupport.com
AEllett@MemoryCareSupport.com
Ph. 949 933-6201