People like to make mental shortcuts.
Known as ‘heuristics’, they are convenient tools to save time and energy. For example, when you’re buying a new tablet, you might be really biased towards one which can show photographs in very high resolution.
The word “dementia” itself is a shortcut for people to summarise the fundamental way in which a particular type might share particular characteristics.
This is like an ‘asthmatic’ who gets very short of breath around certain types of tree pollen.
The word “dementia” would not be a problem, if it were not a label, and implied certain negative connotations, made by popular through the media. We all know what these connotations might be: like “time bomb”, “horrific”, “horrible”, “robbing you of your mind”.
But even if you don’t conflate such emotive terms, it’s all too easy to implant as “them” against “us” view. “What’s it like to live with dementia?” However well meant, it sounds patronising.
Well you tell me – “What’s it like to live in Luton?” Living well in Luton might depend on whereabouts in Luton you are, what type of residence in, what your expectation of living in Luton was like. You get the gist.
Increasing the diagnosis rates of dementia implies you confidently can diagnose dementia. But this is not certain – to make a diagnosis of dementia reliably you might have to follow somebody with time to see if there is any decline. As such it might be convenient to “blame” the doctor, such as a GP for “missing it”, but people’s presentation of conditions change all the time.
It not only places faith in our medics, but it places faith in our diagnostic criteria.
For dementia, this faith is misplaced.
Firstly, this endless mixing up of dementia with memory problems. You can be profoundly depressed, with no dementia, with substantial memory problems.
Do you wish an army of ageing people with memory problems to get worried they have missed out on a diagnosis of dementia, given that Jeremy Hunt reminds us nationally we are missing our targets?
It is Hunt who is both missing the target and missing the point.
Quite a lot of dementia is difficult to diagnosis. Somebody may have a specific but identifiable language problem for years, with no problems in memory. This might be a dementia called primary progressive non fluent aphasia, for example.
Somebody with logopenic aphasia dementia might have OK memory but have real problems with memory.
And what if you transplant on your definition of dementia that it has to cause a meaningful impairment (presumably to exclude people with minor cognitive problems).
People who demand a functional impairment for a dementia and encourage people to live well with dementia, such as through memory aids, perception aids, planning aids, and so on, are in a sense having their cake and eating it.
Say you can get in and out of a bath without any problem? Is this something you should wish to emphasise to a disability tribunal whose award might ultimately affect your award for mobility around London using the bus?
Whether we’ve moved on or not will be guided by how frequently I hear the words, “What it’s like to live with dementia?’, as if a person living with dementia is an oddity.
People with younger onset dementia tend to find it hard to grips with the stigma of the world around them knowing they have a dementia at an early age.
But they also tend to be worried that an employer might sack him or her, rather than making reasonable adjustments for this cognitive form of disability. This is in fact what you would DEMAND in employment and equality law.
Dementia friendly communities lets scrupulous employers off the hook too easily, and if anything gives them an opportunity to distinguish themselves in the market for being ‘dementia friendly’. Never mind that that employer would have no qualms in sacking you in your 50s if you developed dementia, saying it was some necessary reconfiguration mumbo jumbo?
Talk is cheap. Embrace my reality. It is not a nice one, but gives a clue as to where we need to go from here.
