Beth Britton
is a former carer turned award-winning writer and social care consultant who
specialises in ageing. In this blog she explores her personal experiences of
her father’s dementia and how it progressed over nineteen years.
When people living with dementia were granted access to the Blue Badge
car parking scheme in August 2019, many activists viewed this as a small step towards
dementia being seen as a disability. The link between disability and dementia
is something that many of us with personal experience of dementia have always
advocated, but in the wider world dementia is still primarily seen as ‘memory
problems’ and a normal part of ageing, which of course it isn’t.
My experiences with my dad
I know how
disabling dementia can be for a person having watched my father live with
vascular dementia for nineteen years. To begin with he had tiny strokes known
as TIA’s (Transient Ischemic
Attacks) that disabled small parts
of his brain. As that process accelerated, he also had a larger stroke and
began to experience physical disabilities too.
Over the last nine years of his life my dad’s
condition deteriorated. He went from a man who was walking, talking and able to
independently eat and use the toilet, to a man who was immobile. He had
virtually no speech, needed support with eating, drinking and all aspects of
his personal care, and was doubly incontinent.
Taking dad out in his wheelchair and supporting him
in cafes to eat and drink often elicited stares and sometimes even hushed
comments. I imagine this is something many disabled people experience and
something I also discussed in my G8 Dementia Summit film. I think most reactions
were borne out of sympathy, but there was also an element of discomfort -
perhaps even disgust - to see a grown man requiring such support.
Dementia as a disability
In the end, my dad was hugely disabled by his
dementia, but for people in the much earlier stages of their dementia it is
largely a hidden disability. If a person can still walk, talk and look after
themselves, most people assume that they are coping as well as anyone else in
society. Strangers don’t see the daily struggle to remember how to do the
simplest tasks, the exhaustion that such remembering often causes. Not to
mention, the time it may take the person to do something that previously would
have been accomplished quickly and all of the emotions that go with that.
The fear for the future, the feeling of failure,
the wondering “Why me?” or “Why us?”.
All of these experiences mean that dementia is very
much a disability, even from the early stages. For these reasons advocates and
activists whose passion is dementia, and who in many instances are living with
dementia themselves, won’t give up the fight to have greater recognition of
dementia as a disability.
Many of us are hugely inspired by the life-long
work of numerous disabled people in championing their needs and rights.
Therefore, it seems appropriate to pose a simple question to Scope’s supporters,
how can we move forward?
To keep up with Beth’s work you can
check out her website and portfolio.
How do we ensure dementia is seen as a disability? Do
you have any experiences to share? Let us know in the comments below!
