Aug 31, 2018

Understanding the Unequivocal Rights of People Living with Dementia: Express Yourself with Behavioural Expression (Part 1) 

“Dementia does not rob someone of their dignity, it’s our reaction to them that does.”

– Teepa Snow

‘Maybe – Poem about Dementia’

When I wander
don’t tell me to come and sit down.
Wander with me.
It may be because I am hungry, thirsty, need the toilet.
Or maybe I just need to stretch my legs.
When I call for my mother
(even though I’m ninety!)
Don’t tell me she has died.
Reassure me, cuddle me, ask me about her.
It may be that I am looking for the security
that my mother once gave me.
When I shout out
please don’t ask me to be quiet…or walk by.
I am trying to tell you something,
but have difficulty in telling you what.
Be patient. Try to find out.
I may be in pain.
When I become agitated or appear angry,
please don’t reach for the drugs first.
I am trying to tell you something.
It may be too hot, too bright, too noisy.
Or maybe it’s because I miss my loved ones.
Try to find out first.
When I don’t eat my dinner or drink my tea
it may be because I’ve forgotten how to.
Show me what to do, remind me.
It may be that I just need to hold my knife and fork
I may know what to do then.
When I push you away
while you’re trying to help me wash or get dressed,
maybe it’s because I have forgotten what you have said.
Keep telling me what you are doing over and over and over.
Maybe others will think
you’re the one that needs the help!
With all my thoughts and maybes,
perhaps it will be you
who reaches my thoughts,
understands my fears,
and will make me feel safe.
Maybe it will be you
who I need to thank.
If only I knew how.


Please note: I do not agree with the term “wanderer’ but left it within this poem, given it was written by a person living with dementia. I would not disrespect that person by changing the terminology. 

“Dear Dementia, I’m only called a wanderer because there’s nothing to do. If there was, I’d be called a gardener or painter.”

Due to the growing prevalence of people living with dementia within our community, it is necessary for us to open our minds to the process of this condition, how it impacts on the person, and what we must endeavour to do, to enable them to continue living fulfilling and uplifting lifestyles as they see fit. 

Behaviour management is considered a major area of discussion by people, when caring for people living with dementia. 

Unfortunately, the stigma and misperceptions about dementia as a condition, and the people who live with dementia, get in the way of effective listening on our part. 

Perceptions of behavioural expression is often based on archaic, ageist, and negative stereotypes. 

Many people in the community, and even medical professionals, judge people who live with dementia, based on unfair cognitive viewpoints, and thus label them unfairly. 

The one-sided suggestions that a person living with dementia is ‘misbehaving’, ‘inappropriate’, ‘problematic’, ‘attention seeking’, or being ‘disruptive’ is incorrect. 

This is basically a very prejudicial assumption made by people who are cognitively aware. 

Inappropriate to whom may I ask? 

Us, in our rigid little worlds? 

Do we not need to plan behaviour?

To ‘misbehave’ requires intent, as does ‘attention seeking’ behaviour. 

Methinks that we are judging others on the fact that WE behave this way when we aren’t satisfied about something, as it is we who ‘plan’ to act these feelings out, when we want to make a point. 

The number of steps involved in planning behaviour of this nature is unlikely to be something a person living with dementia even considers or can manage. 

People who live with dementia are completely honest in their reactions to life, and how it affects them. 

This should be viewed as a positive, not a negative. 

But then it is often always about us. 

It’s time we reassessed our attitudes and deepened our understanding of dementia to create approaches based on empathy and compassion, so instead of hampering lives, we enhance them. 

This type of labelling is undesirable and harmful, not only to how we perceive people living with dementia, but to how they perceive themselves. 

We do not have the right to make these statements about people who have a progressive condition that affects their brain. They are still, and always will be, ‘human beings’ and, just because their world may change or differ from ours, does not mean they deserve less recognition nor understanding in relation to consideration and care. 

Instead, it is our responsibility as care partners, to understand how confusing, sometimes overwhelming and often frightening, the world/environment can become to someone who has cognitive changes. 

We should consider that this behaviour is instead, most often an expression of the unmet needs essential to that person’s life, and it is we who are not delivering. 

Please see Appendix 1: Medicated and Motivated – NOT! Questioning the Abusive Practice of Chemical Restraint

Part 2 to follow.

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