Do we have any?

A few weeks ago I wrote about what I hate about organised activity groups. And I got a lot of responses from people who agreed. We really don’t like being organised to do things we don’t individually choose.

But, and there’s always a but, everyone enjoys different things, so while I might not enjoy singing songs I’ve not heard of with people I’ve never met before, around a small table, at least one person at that group did.

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And I talked this week to a couple of PLWDs at our Market Drayton DEEP group who really enjoy “singing for the brain”sessions. They’ve both sung in church all their lives and they love being in a lively, cheerful choir. And of course they know just what they are choosing to do when they go.

This comes back to dementia friendly activities and groups and communities. The best things that keep people engaged in their communities, and going out and engaging, are what people have always enjoyed doing. Not usually activities organised for people living with dementia by someone who doesn’t have dementia. They think they’re doing the right thing of course, but…

So I returned to the local group I went mad over last month and had a really nice couple of hours. There were two of us living with dementia, one partner, and one younger guy who had heard of the group and wanted to talk about symptoms that a relative might be showing. As soon as we got onto talking about living with dementia it became really interesting snd personal. We were no longer trying to be pleasant and think of things to talk about with strangers. We had common ground, common cause.

It became what I would call a good support group, allowing us to share our thoughts, our feelings and our difficulties. How do you meet people when you’ve recently moved to a new area? What do you do if you think a relative might be showing signs of dementia? What’s it like feeling isolated?

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And at the Market Drayton group we talked about how difficult it is to meet people who don’t know you when you know you can’t keep a conversation going as they expect. That’s one of the big reasons for social isolation. I feel it too. When you can’t keep up with a conversation, and you get stuck finding a word or thought, there’s a long pause…a lot of long pauses…and others can start to wonder what’s going on. And get embarrassed. You can’t have the casual easy conversations of the past, beyond the predictable, well remembered phrases.

It takes time, and hard thought, to talk to people you don’t know well. And to listen to more than one person speaking at the same time. So we opt out.

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I can do focused meetings, when I have prepared, I know the background, the terminology, and it’s on my terms. I can’t do the others. So parties and most restaurant meals are out. One of my strategies is to sit at the end of a table so I can be quiet, observe, and not feel embarrassed and lost.

We talked about driving. Two of us are going through the DVLA renewal process at the moment. I’ve had to complete about ten forms, with more coming in by post as they wade through my various diseases, many of which might…might…have an impact.

When do you decide to stop? Probably before they decide for you.

It’s when you have one near miss too many. When you can’t trust yourself to remember to take extra care, have that extra check. When you look in the mirror and see a car up your exhaust and you wonder where it came from. But it’s a huge step away from engagement and independence to stop driving. It’s what we all fear.

This coming week I’m going to the first meeting of a new group called PALZ, in Shrewsbury. PALZ stands for professionals with Alzheimers, and is the name of a number of groups in Australia. A local solicitor (for the elderly) has started this group here, and is aimed at providing more formal meetings for those people with Dementia who may have been used to formalities in their working lives. I have had several debates about what “professionals” covers, but basically it doesn’t matter. It’s just another, different style, group. It’ll suit some not others.

One commissioner here thinks it’s exclusive and cliquey. I don’t agree. I think that every group or activity suits different people. And the more groups we have the more people living with dementia will find something that’s they enjoy. What’s more, no one will be turned away! Everyone welcome. (It’s Tuesday 20th, 10.00 at the conference centre at Royal Shrewsbury Hospital.)

So my conclusion?

We need more and more peer groups. By stage not age.

I don’t care whether they are for ex-miners, or servicemen, or lawyers, or accountants, or housewives…labels are irrelevant.

Just please start up more groups.

It doesn’t have to take much or any money. Just time and commitment and willingness.

It’s what social prescribing should be all about. Keeping us all engaged in our communities. Avoiding loneliness and despair.

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And it’s what social and health commissioners should be commissioning. Cheap but hugely beneficial. Cost effective. Reducing GP visits, A&E attendance and admissions, drug use, and additional co-morbidities.

I understand that Alzheimers Society is withdrawing from organising groups like singing for the brain and support groups. They’re also withdrawing their staff support for Dementia Action Alliances. They may have good organisational reasons for this. But who is going to facilitate them in the future?

There are always people in communities who want to run groups and to take local action, but these are not enough. There is a time bomb of frail elderly ill health that social models of care can do much to alleviate. But we continue to spend on traditional health care models in acute hospitals. We need to radically redesign out of hospital care to provide the preventive social care and activity that keeps people independent for longer.

Leadership? Innovation? Change agents? Balls?

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Do we have any out there?

2 thoughts on “Do we have any?

  1. Totally agree George.I have a number of groups,which are really simple social groups,no activities or structure,those who come decide what is needed,and that is usually simple social inter action.There are too many ideas around “forcing” sometimes,people into things they are not really interested in,mainly owing to the ready made audience logic.

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  2. I couldn’t agree with you more George. It’s eight years since I was diagnosed and I have never joined a group for personal support until recently. I’ve seen so many carer run groups as part of my campaigning and they are certainly not what I want , and I sense for some, probably not all, of those diagnosed with Dementia they are there for their carers not themselves. Like you what I like best is just talking with other people at my stage. The group that I have joined does not allow carers. They organise and pay for taxis for everyone which makes it so much easier for people living alone to come We sit, drink coffee, eat cake, share anything we want to share. If we have questions that the facilitators can’t answer, or if a topic comes up that we want to explore they arrange someone appropriate to come and answer our questions. We had two people at the memory clinic to unpack the probability of a wrong diagnosis that some found very helpful. Sometimes people come to ask our help – someone from the public transport section of the local authority. He really listened to what we said and went away with things to implement at once and also longer term projects when funding allows.
    The other thing that means a lot to me is my local U3A group. They know I have Dementia, but I feel really included and know I more than hold my own. I gave up my car ages ago, perhaps too soon, but I came to traffic lights at a busy junction and had no idea what they meant. Never drove again. but now that my husband’s health really restricts his driving we are both becoming more isolated.
    But it hasn’t beaten me yet.
    Go well.

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