When I moved into the care home at the age of 21, my view of this world changed forever. Suddenly, I was living amongst people living with dementia. People just like you and me, but with a diagnosis. Something that might seem like a minor detail, but is in fact the very reason why people are allowed to live there.
The longer I lived there – eventually for over 3,5 years – the more I learnt that our system offers no solution to people’s everyday lives. For instance, we speak in glowing terms about inclusion in our mission statements, but in reality, my place of residence was inclusive only within the context of the exclusion that had been created. Far removed from the community where my housemates and I have our roots, where we know people and where relationships are worth having.
As a young person in a system populated solely by older people, I felt that living in an 'intramural institution' could erode the sense of reciprocity with society. For example, we no longer need to go to the supermarket; it comes to us. We don’t need to visit friends; they come to visit us. And my gym membership is no longer necessary, because the physiotherapist comes within the walls to train with us: a walk round the secure ward.
Anyone who looks with love upon the people within our system, whilst remaining critical of the system itself, realises that our good intentions alone are not enough. If we want a good life as the outcome, but continue to view things through the lens of control and risk avoidance, can we really achieve our greater goal? A residential care home only functions properly if things can go wrong, if risks are allowed to be part of life.
That is why more is needed. After all, our system did not come into being during the Big Bang or by the hand of God, but is the ultimate result of our own culture. Not within the care sector, but within society. That is why it is so encouraging that society is becoming increasingly involved. For too long we have viewed dementia as a care problem, but at its core it is a societal issue.
And that is what I believe in! The future does not call for new forms of the same system, but for different ways of living and living together. So, not new dementia villages or nicely furnished care homes, but ways of life where a person’s need for care is not the only ticket in. Where people can live together, not because they have to, but because they want to.
Change, therefore, does not begin with new models or a bullet-point checklist, but with a different perspective. Once we see this, we realise that the change we so hunger for has been underway for years. It is up to all of us to make it bigger.
Because change is not the success of the individual, but the result of the collective.