Alzheimer Annie – My Alzheimer's Story

Alzheimer Annie is a fictional character I created to help people understand what being in a long-term care facility (LTCF) might feel like. Annie is a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease; she resides in a fictional LTCF somewhere in Canada. Her experiences are based on real-life scenarios, which I either witnessed first-hand or have personal knowledge of. The vignettes in which I have placed Annie mirror the twenty-nine items on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia.

My goal in creating and sharing these vignettes is to show how behaviour that is attributed to Alzheimer’s disease and other dementias, and for which people who live with dementia are treated with antipsychotic drugs, is in most cases normal human behaviour which can be understood and addressed in safer, more effective non-pharmacological ways if we listen and pay attention to what people who live with dementia are trying to communicate.

Here are the twenty-nine “problem behaviours” on the NHBPS, each with a corresponding vignette that describes the behaviour from Alzheimer Annie’s point of view (some are “still in the works”):

#1 Resists care: rise and shine
#2 Upsets easily: unbearably crazy
#3 Enters others’ rooms inappropriately: places to go, people to see
#4 Awakens during the night: nighttime nightmare
#5 Talks mutters or mumbles: look who’s talking now
#6 Tries to hurt herself: (in the works)
#7 Refuses care: rub a dub dub
#8 Fights or is physically aggressive; hits, slaps, kicks, bites, spits, pushes: rub a dub dub
#9 Fidgets, is unable to sit still, restless: please remain seated for the rest of your life
#10 Has difficulty falling asleep: (in the works)
#11 Goes to the bathroom in inappropriate places (not incontinence): what a shame
#12 Says things that do not make sense lost in translation
#13 Damages or destroys things on purpose (in the works)
#14 Screams, yells, or moans loudly: unbearably crazy
#15 Argues, threatens, or curses: unbearably crazy
#16 Tries to get in or out of wheelchair, bed or chair unsafely: death by recliner
#17 Asks or complains about health, even though unjustified: it’s not a cornflake
#18 Has inappropriate sexual behaviour: (in the works)
#19 Sees or hears things that are not there: (in the works)
#20 Disturbs others at night: nighttime nightmare
#21 Wanders, tries to escape or go to off-limits places: mile after mile
#22 Accuses others of things that are not true: (in the works)
#23 Asks for attention or help, even though it is not needed: save our souls
#24 Is uncooperative: rub a dub dub
#25: Paces: walks or moves in wheelchair aimlessly back and forth: mile after mile
#26 Tries to escape physical restraints: death by recliner
#27 Complains or whines: (in the works)
#28 Does something over and over that doesn’t make sense: (in the works)
#29 Tries to do things that are dangerous: (in the works)

I created a model to help myself and others handle these kinds of situations more effectively. It’s called “BANGS.” I share the BANGS techniques in a one-hour webinar here. It’s free. All I ask is you tell me how it works for you if you try it. Here’s what one caregiver said:

“I am a daughter/caregiver who has been with my father for two years since he had two strokes which left his right side paralyzed. He had been diagnosed with dementia before the strokes, and he also has severe aphasia as well as other issues. We both dreaded every day. In desperation a few weeks ago I discovered your site. I found your BANGS technique and it worked beautifully. Thank you.”

Besides using the BANGS model, you can take this three-minute survey to see how you might behave under similar circumstances here. Many people experience the survey as a real “eye-opener.”

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Tag: Alzheimer Annie

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