I read this this in the press this morning and confess it made me angry, simply because its something that has been said on many occasions, yet no one takes any notice of us.
I know from experience that People with dementia and carers are often asked as a way of ticking the correct box's as far as establishment is concerned, but generally they are not in the slightest interested in our views, and that goes for government groups as well, I as I found out to my horror.
These people are more interested in the Commissioners of these services and not our experiences, simply because they don't understand dementia, and think that because they have seen one person with it that we are all the same
At one large Government Clinical group, we were all ignored because the commissioners had to say what they wanted, and that left many disguised and a few in tears, wondering why they had even bothered to turn up.
So experience is never considered, as carers and people with dementia are totally ignored, and I don't think that this will ever change as its the bureaucrats would think they know everything, and perhaps that is why the country is in such a mess
Dementia care training is a competitive marketplace, populated mostly by people from academic and scientific backgrounds. They can tell you the statistics, what the latest research has discovered, and the widely recognised methods we should all be following when we provide care to a person with dementia.
What is often missed is the understanding about what dementia is really like – both for the individual and their family.
I'm not an academic. University wasn't an option for me; my dad needed me and there was nowhere else I was going to be other than by his side. He lived with vascular dementia for 19 years, going 10 years without a diagnosis and then spending nine years in three different care homes. Dad's dementia began when I was just 12 years old, and went on to dominate my teens and twenties. He passed away in 2012 aged 85.
Dad, and all the other people I've met who have been living with dementia, are my dementia education, and you could argue that 19 years is somewhat longer than your average degree course.
I consider being an expert by experience a huge privilege and now work as a freelance consultant, giving presentations and lectures on different aspects of dementia care. Many argue that you can't teach people what it's like to live with dementia, but I beg to differ. When I address audiences, I talk from the heart. I'm open and honest about what I've experienced with my dad and other people who are living with dementia. We need to humanise dementia in order to remove its stigma and improve care.
People who are living with dementia, their carers, families and friends are the great undiscovered knowledge bank in dementia care. Too often we belittle, dismiss or ignore personal experience, rather than encourage the sharing of it. Moreover, we often exclude family carers from opportunities for personal growth by not sharing professional knowledge of dementia, and not offering them training in areas of care provision that they are finding challenging.
There's room for many different types of training in dementia care. A good foundation knowledge of the brain and the physical changes that dementia causes is vital, as is best-practice training in areas of care provision like, for example, moving and handing, incontinence and dysphagia. Looking beyond that, however, there are the specialities of dementia. The behaviours that are so often labelled as challenging.
The decline that produces the sort of reduced functioning that highlights huge gaps in understanding. Even really simple things, like how to communicate with a person living with advanced dementia, can leave many professionals baffled.
Person-centred care is still not a widely embraced model. Too often professionals see dementia before they see the person living with it. Many people believe there is no hope of living well with dementia.
Often there is little creativity in care and nowhere near enough focus on therapeutic interventions tailored to the individual. It's time we stopped seeing people with dementia as a problem to be dealt with, and instead saw them as people whose needs it is our privilege to understand and meet.
That's how it was for me with my dad, and I believe that by working together we can hopefully make everyone's experiences more like his.