I’ve been talking to people lately about models of support and care for people affected by dementia.
Living with dementia and providing unpaid care.
What do we usually have? The medical model.
Diagnosis. Medication. Risk assessment (!). Six monthly reviews. Crisis management.
What do we usually not have? The social model.
Living as well as we choose after diagnosis.
Making choices that give us pleasure, healthy or not.
What do we all have a right to?
A family life, a happy life that we choose, self-determination.
So why do people living with and providing unpaid care for dementia rarely get these?
Dementia is the result of brain disease. We all know this.
It is painless (usually, depending on your definition of pain).
It is invisible, incurable.
You can ignore it without a guilty conscience.
You can pretend it doesn’t matter.
You can say we can’t do anything about it.
You can say it’s not worth getting a diagnosis (as a nearby GP does).
Because…well, you can’t see it, can you.
After all, we stay at home. We don’t walk beside you in shops and sit beside you on trains. We withdraw.
We are the living dead. The unknown. The hidden relative.
Better still, not a relative, just someone you don’t need to see. Or talk to.
I suggest we hold a referendum. Let’s just get over this. Make a decision.
We know that dementia/brain disease exists. But wouldn’t it be so much easier if it didn’t?
And if you don’t have a word for it it doesn’t exist. You cannot have a thought, or a conversation, about something which you cannot name.
So, let’s just ask the people of they would like to abolish dementia.
It’s really very easy. Just remove the word.
Of course, then we could go back to lunatic, or mad, or disturbed. Of unsound mind.
But we could get rid of all this horrid arguing over support and care.
We could just simply get on with our lives. Get on with researching cures for cancer and arthritis and all the rest of the visible, painful diseases.
The government should quite simply build facilities for supported living, so that people who (don’t) live with a debilitating condition (that is not dementia), can be housed away from the public eye.
Let’s face it, this would be a wonderfully refreshing change for everyone. We could release all the voluntary energy currently wasted on dementia friendly communities, and re-direct it to more worthwhile causes. Like keeping roads litter free, and running libraries.
We could also find similar accommodation for those who use food banks because they have failed to work long enough hours to feed and feed and heat their families. Provide them with the relief they so crave.
Now, that’s true compassion.
So, CCGs and Councils, please make some radical decisions.
I know this does not come easily to you. You breathe not oxygen but procrastination.
You thrive on uncertainty, equivocation, delay.
But instead of worrying about making decisions about funding…well, just delete dementia, and hunger and poverty.