Change that leads to better lives

Dementia and Isolation

Why is it that, despite what people tell us they want, most services continue to insist on separating people’s lives into groups that are defined by the diagnostic, disability or age label we have given them?

Rob web1

The other week I spent a day with some people living with dementia and their family carers. NDTi has been working with them for the last year or so, using concepts like circles of support to explore effective ways of enabling them to continue to have a good life after dementia has been diagnosed. We’ve been learning that two of the most important things to try to achieve with people are:

  • Maintaining and developing social connections and relationships
  • Retaining their life interests and activities

Yet people are also telling us that two different things tend to happen – networks are lost and people are often only offered dementia-defined services to occupy their time.

Existing friends and networks seem to be gradually lost for a variety of reasons. It may be that the person loses or leaves their job around the time of diagnosis – and work is a major source of human interaction and friendship. More importantly though, public understanding and perception of dementia – or should I write fear of dementia – causes people to withdraw and/or block people with dementia out from networks.

This really emphasises the importance of action and campaigns to change public attitudes around dementia. Like so many other conditions or disabilities, dementia is experienced in a range of different ways – but public understanding seems driven by the most extreme examples. As a result, people without direct experience feel they cannot handle interaction with someone with this label. Something like the Time to Change campaign is needed – but with a focus on dementia. Ideas such as dementia friendly communities and dementia action alliances are important – but on their own do they really challenge the fundamentals of discriminatory behaviour?

This loss of networks and relationships is compounded by how services – both statutory and voluntary – tend to operate. What people consistently tell us is that they are offered dementia groups to engage with – meeting with and doing things with other people, or other family carers, who are invited to come together because they share that label or diagnosis.

Now don’t get me wrong – being with people who are facing similar situations can be very important. It can be a source of support, an opportunity to socialise, share experiences and sometimes a place where people feel they are not being judged on the basis of their condition or illness.

However, if groups bringing people with similar conditions together are all that is on offer, then we end up defining people purely on the basis of their label, and denying their basic humanity and real personalities. One gentleman I was with valued the opportunity to be in local groups with others living with dementia, though as he pointed out – not everyone with dementia gets on with everyone else with dementia, so sometimes the dynamics were difficult. However, what he really enjoyed was his time singing in a local choir - where his dementia was irrelevant. Everyone came together because of their love of singing, so any interpersonal issues were largely irrelevant – as was his dementia. He also described an opportunity he and his family had found to work alongside a courier/driver for a year. The courier needed another pair of hands to help him and the person with dementia experienced respect, was doing something that felt valued and he had a range of positive relationships with people across the area.

Another family told us that one of the things they are really appreciating from our input is that we are identifying opportunities to pursue interests in their local area that the services they have been referred to are not. Why? We are based elsewhere and are just working there, looking at the internet, making calls, to try out this way of doing things differently. How come most time and attention of traditional services seems to be devoted to developing and offering label or diagnostic based group supports rather than knowing about and ‘negotiating’ access to other things? Services often have rules that create additional complications such as about who can come (supporters/carers) or what geographical boundaries people have to be within. Groups based on interests do not generally have such limitations.

However, what people with dementia and those supporting them often face are significant obstacles in terms of public attitudes and a willingness to be open and welcoming to people living with dementia – amongst interest groups and more widely in our communities. All of which leads me to think that there are two inter-connected sets of action that really have to be at the heart of the Prime Minister’s dementia challenge:

  • A positive and aggressive campaign that challenges stigma and prejudice, and
  • A major focus by dementia services on networking with and facilitating access to genuine community resources and activities.

I’m far from convinced that, at the moment, these are high on the agenda.


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