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In 'dementia friendly communities', it's how we relate to one another which really matters

I actually don’t know what ‘a better shopping experience’ is, although I’ve had plenty of awful shopping experiences down Oxford Street in the run up to Christmas. Joking aside, despite the developments in anti-discrimination legislation in England for people with physical disability, there’ve been concerns that there’s still room for improvement.

Anecdotally, people living with dementia tell me that there’s been a huge ‘sea change’ in their shopping experience on the high street. Some of this might be due to the Prime Minister’s Dementia Challenge, or initiatives such as from the Alzheimer’s Society regarding ‘dementia friendly’ banks or businesses.

A major aim of the policy of ‘dementia friendly communities’ was originally to enable independent living, by having transport and housing which was ‘fit for purpose’. With the current problems in social housing nationally, and with cutbacks to certain transport infrastructure projects, it is utterly reasonable to think about how ‘friendly’ policy is, let alone ‘dementia friendly’.

Try listening to George Osborne’s budget this week through the prism of dementia friendly communities. Listen especially to the political rhetoric about ring fencing NHS spend (but probably not in reality at a pace in keeping with increased demand). And listen to the deafening silence about the continued cuts in social care.

One aspect of a community is the relation of members of that community with statutory services or other providers. If one takes a ‘supply side’ approach, you are meant to have better choice if there are more providers. Then you get into the language of the consumer and the market, and we end up going down a certain ally. ‘Dementia friendly businesses’ then exert competitive advantage by ‘adding value’, in other words by being civil to people with dementia.

But of course it should be more than that. People living with dementia in fact have civil rights – some of this comes from the law, some of these rights are moral rights. But whether your religion is the Human Rights Act, the UN Declaration of Human Rights, or the UN Convention on Rights for People with Disabilities, these rights definitely exist. In theory, they can be exerted through bodies such as the Equalities and Human Rights Commission, but the reality is that any law is as good as its implementation – take the national minimum wage for example.

Whilst dementia friendly communities had (and still does) have a thrust in promoting independent living, it’s also been mooted that care homes form a ‘community hub’. A big proponent of this idea is Prof Martin Green, Care England’s CEO. There’s a huge swathe pointing in the direction of why many would like living in a care home to be reconcilable with independent living.

For a start, residents in care homes are still individuals who are entitled to the best standards of NHS care. It’s said moving into a good care home should mean that all you’re doing is ‘changing your address’. There have even been yet further pilots looking at the implementation of personal budgets in care homes – but we’re all too aware of the direction of travel of these pilots. The aim is, somehow, to see ‘care homes’ de-institutionalised, a form of ‘home’ where there’s ‘care’.

At first blush, the term ‘dementia friendly communities’ is awful as it implies a ‘them against us’, with people with dementia identifiable as a single homogeneous mass. But I think the strength of the word ‘community’ comes from if we’re all considered as citizens, with equal participatory rights, bounded in powerful relations to one another.

It matters enormously that we understand culture and diversity. This is NOT so we understand ‘BAME’, ‘LBGT’, ‘low/middle income countries’, ‘young onset dementia’ and ‘prior intellectual disabilities’, in isolation.

Each member of these groups is an unique individual. We cannot homogenous all Asian people, in the same way we can’t homogenise all people above the age of 65, or all males. But these groups matter overall in understanding how the relate to others. This is NOT a case of meticulously charting their similarities and differences, but learning from each other so that we understand our community as a whole.

While I’m on the subject, if you’re a citizen who’s just been given a diagnosis of dementia, vast inequalities do exist in the quality of the diagnosis and ‘post-diagnostic support’ (howeverso defined). It’s crucial we begin to understand these inequalities to improve health and social care as a whole.

As is often the case, the whole is much stronger than its individual components.

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