Connectedness, continuity and community: going beyond ‘friendliness’

I do not have any ideological objection to ‘dementia friendly communities’. It is hard to object being friendly however it is defined, so long as it does not foster a sense of belittling or victimhood for me.

However, it does concern me how superficial this construct is, potentially.

If you wish to extend the notion to providing reasonable adjustments, or ‘cognitive ramps’ as Al Power refers to them, it makes sense to me to know exactly what sort of residual cognitive abilities exist in the diversity of people living with dementia. That way you can seek to change the environment to make life easier (e.g. appropriate signage around buildings).

That is more meaningful than being ‘friendly’.

Kate Swaffer is the person who has coined the term ‘living beyond a diagnosis of dementia‘. I think her phrasing of it is very powerful one. It for me conveys the added dimension of life after the diagnosis has been made. It also begs the question of how a person makes a connection between his or her future, with his or her own past.

This is a different approach to the idea of an abrupt change of a ‘person with dementia’ compared to a ‘person without dementia’. The phrase combats directly the loss of continuity.

It’s reassuringly said, quite often, “But you’re the same person as you were before you officially had the diagnosis”. And this is of course true.

But the moment this diagnosis is disclosed means that changes occur; for example, in his or her ‘connectedness’ with the rest of the world, including perhaps employers, friends and family. And clinicians can treat you very differently.

A major aim of policy should be trying to combat the loneliness and isolation which can accompany the disclosure of a diagnosis of dementia. But it is hard to deny that this is fundamentally how a person’s social network changes after a diagnosis.

Tom Kitwood was way ahead of his time to think about this connectedness. Whenever mental stress is imposed on somebody, physical health is affected. Any abrupt change of environment or friends can be hugely unsettling. Of course, this is precisely what happens if a person with dementia enters a residential setting.

The dynamic changes in social network for a person beyond a diagnosis of dementia can be extensive, and yet we talk about dementia friendly communities as if they are always static phenomena. In other words, once they are built in a certain cost-neutral way they will remain so forever. They will remain just as they have been, prior to anyone person receiving a diagnosis of dementia, and for evermore.

I have often asked people with dementia how they feel about many close friends leaving them at the time of their diagnosis. Some of them have remarked that of those old previous friends who have remained as friends the friendship has become much less superficial.

Of course people have different experiences.

Maybe then the social network of a person living with dementia can be just as cohesive, even if consisting of different people. Therefore, the only continuity will be in society’s attitudes at large towards people with dementia.

And of course the person without dementia can become the person with dementia at any time. In an ideal world, the community should be worth living in whether you have dementia or not. What was wrong with the old approach of wanting to be as inclusive to everyone as much as possible?

I think overall the biggest failing of the ‘dementia friendly communities’ is that implies we all are in rigid groups of with dementia or without dementia, and we are defined by our label. This does not take any account of the changing relationships between us all at any given time.

But it might possibly be better than nothing?

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