The experiences of life with Dementia takes many forms.
Generally, the media portrays people living with Dementia in the Palliative stage using imagery such as the hunched over drooling aggressive person, wandering aimlessly with wrinkly hands.
Professionals viewpoints may come solely from the same Palliative stage and care partners and family who generally have negative experiences and whose experiences cloud their perceptions of their loved ones life with Dementia.
Then there are the people living with Dementia, sometimes described as the lived experience or experts by experience.
To start with, let’s call a spade a spade.
Dementia is a cruel, insidious, chronic terminal disease, that strips us of our personhood, abilities and humanity.
As we grow up, we may have seen family members living with Dementia, or through our working lives, not truly understanding what that person is understanding.
A couple of analogies that come to mind are childbirth and chronic pain, toothache and a Migraine..
If you are a woman reader you will have experienced the emotional, physical and mental experiences of childbirth.
If you are a man, do you really understand what your partner experienced, do you understand your partners behaviour during childbirth, did you feel guilt anger or confusion, did you truly understand what they were going through?
Chronic pain is experienced differently from person to person, they may have a lower pain threshold than you, they may become aggressive when you are close to them, or trying to calm them with words.
You may have toothache and wander aimlessly looking for somewhere to sit that might aleve your pain or be in town and wander aimlessly looking for somewhere quieter away from artificial light and noise.
Continually we are spoken for not asked to speak for ourselves.
Decisions are made for us, services are introduced without involving us or asking us what we need.
As we go through our lives with Dementia, gradually over time developing new challenges, changes to our abilities, insidiously removing the person we once were.
Stop speaking for us
Stop telling others how we feel
Stop telling others why we do something
Stop developing new services or research without involving us.
We don’t wander aimlessly or get lost
We walk with a purpose that we may not be able to express.
We have universal rights.
We don’t have behaviours or aggression.
We are Human beings, we have emotions and emotional responses just like anyone else.
Do everything with us