For some reason, the terms ‘person experience’, ‘patient experience’ and ‘customer experience’ have become conflated to a rather unhelpful degree.
I would like to be careful how I say this, though, because we do know that bad customer experience does exist for people living with dementia and care partners, and guidance or standards can help.
Corporate marketing can give high street brands a helping hand with adding competitive advantage, by making them more ‘dementia friendly’, and in return these high street brands can give a bit of marketing for the charity in return.
This is, of course, not the time for cynicism. ‘Dementia friendly communities’ have also in a more recent configuration which emphasises a rights-based approach.
I’ve often felt that the rights-based approach gets confused with party A taking party B to court over matter C, but they are much more of a question of a rights consciousness. The PANEL principles were originally proposed to articulate this rights-based approach, and are summarised here.
PANEL stands for Participation, Accountability, Non-Discrimination and Equality, Empowerment and Legality.
I have seen with my own eyes the subtle, and indeed not-so subtle, discrimination of society towards people with dementia. This is disappointing as the Prime Minister Dementia Challenge was fist introduced five years ago.
I might be standing in a room with my mother, known to have a diagnosis of mixed Alzheimer’s and vascular dementia, and a third person can often completely ignore her because of her diagnosis.
For all the millions of ‘Dementia Friends’ which have been created, the question remains whether a genuine cultural shift in attitudes has existed. Various unknowns exist, including how bad things would have been if there had been no public awareness campaign for dementia.
A significant problem which pervades all the work looking at whether there is merit in the dementia friendly communities approach is knowing how much time to give the dementia friendly communities to ‘take effect’.
Participation is something which can be looked at directly. Democratic inclusion is a matter of principle, and it would be interesting to know how many people with dementia, including in care homes, are actively supported to vote. This might involve making reasonable adjustments for participating in the voting process.
Many of these aspects can be looked at also by looking at how many persons with dementia, now patients of the NHS, are able to secure a GP appointment in the festival of ringing up at 8 am when the GP opens. Many barriers might exist, such as being oriented to the time, remembering the GP number, recalling the purpose of the appointment, and so on.
The scale of ambition is also worth looking at. We could look at how many providers are providing NHS information in an accessible manner, but this is venturing into the area of competitive advantage, especially where providers in dementia services exist in a private market.
But what is interesting, with the problems in legal aid and access to justice aggravated from 2012 especially, is how many persons with dementia on receiving a diagnosis are able to secure a lasting power of attorney.
Again, we would expect a significant difference right now between communities which are ‘dementia friendly’ and those which are not.
So, in summary, I feel that the focus on customer experience in high street shops is a bit of a canard, and wider issues of access to health, access to justice, access to health or participation in the democratic process should have been tangible benefits of ‘dementia friendly communities’ by now.