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"It's possible to live well with dementia": a crucial message in @DementiaFriends

“Dementia Friends” is an initiative from the Alzheimer’s Society and Public Health England. In this series of blogpost, I take an independent look at each of the five core messages of “Dementia Friends” and I try to explain why they are extremely important for raising public awareness of the dementias.

 

This is the plucky group of persons living with dementia at the Alzheimer’s Disease International meeting in Puerto Rico in 2014.

That’s right. They’re not there as representatives of any organisation, but there on their own as individuals as members of the “Dementia Action Alliance”.

They happen to have received a diagnosis of dementia.

So why is this “it’s possible to live well with dementia” even a statement in “Dementia Friends“, a Public Health England initiative delivered by the Alzheimer’s Society. It should be obvious shouldn’t it?

The answer comes in the ‘icebreaker’ exercise at the beginning of the Dementia Friends session. Attendees are asked to think of the first word that springs to mind when they think of dementia.

“Suffering”

“Horrible”

“Terrible”

And indeed it would be wrong to ignore how distressing a diagnosis of dementia can be for certain individuals with dementia. Take for example people with diffuse Lewy Body disease, typically individuals in the younger age bracket in their 50s, who have complete insight into the condition, realise that memory might be going, and are exasperated at the ‘night terrors’.

‘Living well with dementia’, conversely, is supposed to counteract the negative word associations may people have about dementia. It’s felt that such negative connotations contribute to the stigma individuals with dementia can experience after their diagnosis. This can ultimately lead to discrimination, hence the need for communities which are welcoming to such individuals.

It also happens to be the name of the English dementia strategy, which was introduced by the last Government in 2009. Dementia as a policy plank now in England has full cross party support, and the current ‘Prime Minister’s Dementia Challenge’ is due to come to an end next March 2015.

In the panel session above, somebody asks whether a dementia diagnosis should ever be withheld from a person with dementia. Kate Swaffer, living with dementia herself, believes firmly ‘no’, saying that one would never dream of withholding a diagnosis of cancer.

Policy in this jurisdiction and others has given due attention to whether the person receiving the diagnosis of dementia actually benefits – put simply is it ‘disabling’ rather than ‘enabling’.

Does it shut more doors than it opens?

But even if one takes the view that dementia is a disability which one is perfectly entitled to do on reading the case law surrounding the Equality Act (2010), the issue of making reasonable adjustments around this particular disability then becomes not a trivial one.

Richard Taylor elegantly advances this argument. Big Pharma have been impressively unimpressive in the offerings for dementia, although some report some substantial short-term symptomatic benefit for symptoms.

The National Institute for Clinical Excellence (NICE) have stated clearly that such medications do not slow the progression of the condition.

But they did offer very recently some enormously useful guidance on supporting people to live well with dementia.

And this issue is a push-pull one. Given the relative inefficacy of the medical interventions, one is possibly attracted to the things one might do to promote living well with dementia.

In a world of ‘whole person care’, where there might be care coordinators helping to break down the silos of service provision for people living with dementia, we might arrive at a destination where people with dementia do receive some help.

This might include assistive technologies, other innovations, or access to advocacy services.

And for a person who has received a diagnosis of dementia, Richard Taylor argues that trust is pivotal. This is somewhat related to Kate Swaffer’s views that ‘support groups’ (for carers) might inadvertently encourage division.

Whilst members of the support and care network clearly have substantial ‘needs’, not least in behavioural and psychological considerations, promoting quality of life for people living with dementia is clearly going to be a vital policy plank for the future.

Some inroads have already been made, as I recently discussed here, but there is a lot yet further still to do I feel.

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