There’s a lot of talk about Peer Support at the moment.
The Q community is working on it.
There was a Peerfest” day in Wales the other day.
NESTA produced a report a few years ago analysing what works.
And there are lots of other resources for learning about it.
So what is Peer Support?
Wikipedia: “Peer support occurs when people provide knowledge, experience, emotional, social or practical help to each other.”
I like that.
Note the “or”. You don’t have to be a trained expert for peer support to work. Just need to have lived experience and a degree of emotional intelligence and self-awareness.
At the upcoming UK Dementia Congress in November in Doncaster, there are several sessions devoted to early stage dementia, young onset dementia, and what support people living with dementia want.
I am part of the DEEP network, which has over 80 peer support groups are ind the country. DEEP is Dementia Empowerment and Engagement Project. It’s fab.
And I have started two DEEP peer groups in Shropshire. ‘Cos there’s nothing else for early stage dementia.
What do we talk about?
If you’ve ever been to a group of people living with dementia you’ll know that conversations are chaotic but huge fun. We drift in and out of conversations. We start sentences we can’t finish. We are totally random at times.
And the great thing is? It doesn’t matter a damn.
We talk about holidays and visits. The Memory Service or taking pills. Cakes and favourite foods.
We grumble a little sometimes about our spouses or families, how they choose our drinks and meals, finish our sentences, speak for us.
And we just laugh at the absurdity of it all.
Oh and we always have a ritual of checking the date of the next meeting, because we often forget. One of my friends emailed me late last night apologising for forgetting the meeting yesterday. Which wasn’t yesterday, but next week.
Happens all the time.
We all need iPads or tablets and to use those calendars! And reminders.
We help each other with smart phone or tablet difficulties.
And when we leave, after cake, coffee or tea, we are uplifted. Ready for the next s**t coming our way.
“Peer support occurs when people provide knowledge, experience, emotional, social or practical help to each other.”
I’ve been at several meetings in recent months where I’ve promoted the idea that for early stage dementia peer support groups are the thing that really makes a difference. And that they’re cheap to run. And that basically unless there’s some nut like me willing to organise a group it takes a little facilitation time to get one going.
That’s cheap. It’s cost effective. It’s what we want.
Until you’ve joined one you don’t know how supportive a peer group can be. And you look around in Day Dementia cafes, diamond cafes, forget me not cafes…and think, oh god, not yet. I can’t stand those. I do not want to spend time with people with later Dementia, playing games and drawing.
Sorry. It just isn’t for us.
We want, no, we need to be out and about. Chatting, shopping, walking, drinking…whatever it is that makes us/you happy. That helps us get over the everyday little that happen.
The empty boiled kettle. The miserable feeling of loneliness. The lost screwdriver. The forgotten name. And the memory of what we once were and did but now cannot.
So let’s hear it for peer support. And if you do nothing else this year, lobby your commissioners to pay the small amount that a facilitator would cost for starting peer groups in your area.
Perhaps I’ll see you at the Congress. I’m chairing one of the sessions. Make sure you say hello.