To help us understand dementia, experts have come up with ways of describing different phases of the disease:
1) The Alzheimer’s Scale (3 stages): mild, moderate, late.
2) Four-Stage Model (4 stages): early, middle, late, end-of-life.
3) Global deterioration (7 stages): no impairment, very mild decline, mild decline, moderate decline, moderately severe decline, severe decline, and very severe decline. (Keep those sorted one from the other if you can!)
These scales and descriptors focus almost exclusively on decline and loss rather than on the richness of the human experience.
At best, they set us up to see the glass half empty rather than half full; at worst they foster the belief that people with dementia are on a journey that is nothing more than a long slow, tortuous train through hell – a journey in which they are robbed of their very selves as they disappear into a black hole of oblivion.
This overwhelmingly negative perspective is an injustice to people who live with dementia, and is problematic in all kinds of other ways. Among them:
- It goes hand-in-hand with the traditional biomedical model of the disease, which in itself creates a multitude of care issues.
- It results in people treating people with dementia in demeaning and unhelpful ways.
- It causes family, friends, and caregivers to suffer more loss, pain and grief than they need to.
No wonder we are all so terrified of this “horrible” disease!
But it doesn’t have to be like this. I know because I have discovered treasures amidst what many see as tragedy. One simple way to transform the way we see the disease and the people who live with it is to use a positive approach centered on people’s humanity and on what they can do rather than on what they can’t.
Dementia care expert Teepa Snow suggests a wonderful model that does exactly that.
Adapted from Claudia Allen’s Cognitive Disability Theory, Teepa’s GEMS™ revolve around remaining abilities rather than capacity losses.
It’s a much more hopeful and helpful lens through which to see the disease and those who live with it and it provides a framework in which we can support and encourage people with dementia to live enriching lives until the end.
The GEMS™ model uses sapphires, diamonds, emeralds, amber, rubies, and pearls to help us better understand people with dementia, their behaviour and how we might choose to respond.
I find the analogy of a pearl in an oyster shell to describe the last phase of life with dementia to be especially beautiful and fitting.
If what you think you see is an ugly shell, remember to look deeper: “the most important thing is what’s inside.”
Teepa Snow explains her GEMS(TM) model here: