I believe we must change the way we see Alzheimer’s disease and other forms of dementia and the way we interact with people who live with dementia. Why? Because a change in perspective is essential if we are to provide better, more efficient, more effective and most important, more compassionate care that helps people to really live until they die.
I believe we need to look at people who live with dementia as people who still have potential, not as “shells” of their “former selves.” To change our perceptions we need to change our words, our language, our actions and our interactions. I advocate on all fronts.
I understand how many people feel Alzheimer’s disease robs them of their loved ones, and I get how they are devastated by the disease and by loss they experience. But feeling that way does nothing to help people who live with dementia to continue to engage with life and love and the world around them.
Posts and poetry that focus on loss, grief and gloom abound; here are two stanzas from a piece entitled An Alzheimer’s Request:
I’m confused beyond your concept,
I’m sad and sick and lost.
All I know is that I need you,
to be with me at all cost.
Just remember that I need you,
that the best of me is gone.
Please don’t fail to stand beside me,
love me ‘til my life is gone.
Words like these perpetuate the myths we have about Alzheimer’s disease and other dementias and result in people who live with dementia being treated in ways that demean, exclude and isolate them. The words become self-fulfilling prophecies. Everything becomes dark, tragic, and devastatingly sad. But life itself is multi-dimensional. Nothing is all good, or all bad.
In the spirit of balance, I offer a different view inspired by dementia care pioneer Teepa Snow’s GEMS(TM) model:
Here’s me reading the poem for your listening pleasure:
© Susan Macaulay 2016. I invite you to share the links widely, but please do not reprint or reblog or copy and paste my poems into other social media without my permission. Thank you.