Deep Project

Over the next few days I will be working through a paper, to see where we can go in the North East Of England somewhere like Newcastle upon Tyne, to get this project off the ground in the new year.

This will be the start of a new project which we all hope will get dementia projects off the ground, and will start us working with other DEEP groups around the UK, something special for those with dementia when they are in the early  to mid stages of the illness

This will no doubt mean lots of e-mails and telephone calls, but it will be well worth it.

Dementia Engagement and Empowerment Project

Innovations in Dementia are part of a project run by the Mental Health Foundation called DEEP, (Dementia Engagement and Empowerment Project).

Over the course of the year we investigated

The ways in which groups of people with dementia across the UK were actively involved trying to influence policies and services and:-

Whether these groups of people with dementia were interested in networking with each other.

Some findings from DEEP

There are only a small number of groups led by, or actively involving people with dementia, that are influencing services and policies

Influencing work includes national lobbying and meeting with government officials, local lobbying services, media work, training and education, participating in advisory groups, awareness raising, and speaking at events

Most groups undertook influencing work alongside peer support and social activities, and were local and relatively informal.

The report sets some challenges

For groups involving people with dementia that want to participate in a network

For governments who need to listen to people with dementia

For organisations working with people with dementia who want to support people with dementia to influence policy and practice

And for dementia action alliances the media, event organisers, trainers and researchers, who can all change how they work to make sure that people with dementia are heard

In February and March 2012 the project held two networking events for people with dementia, One in London and one in Stockport. These were to:-

Celebrate the achievements of people with dementia in influencing policy and practice.

Provide an opportunity for people with dementia to meet other people with dementia from across the country to exchange experiences and ideas

Enable people with dementia to discuss the next steps in developing a UK wide network for people with dementia

There would also be an opportunity to hear about and discuss the main results from DEEP questionnaires

You can watch a short film about DEEP where people with dementia talk about the activities they are involved with

Go to the Mental Health Foundation website: -

Read the reports from the phrase

You can also get more information form the Mental Health Foundation website.


So what else can we do as people with this illness:-

My proudest moment now would be seeing a Local DEEP project getting off the ground in the North East, as it’s something that has been needed for quite a few years.

I remember the Ist UK Convention of People with Dementia when it was in Newcastle, it inspired many people including myself to keep active and to get up and help others as well as myself, so much so that I was asked to Chair the 2nd UK Convention for people with Dementia.

I am not saying that I would want to chair this group, but if we can get something started up here, we have achieved something very positive, so that others know that as long as you are diagnosed early enough, then there really is life after the diagnosis, and as Prof Ian Mckeith once said,” You either use it or lose it”

But we must remain as active as possible, and that means we keep the brain working

Join in local groups if there are any, or try to find some close by, something we don’t seem to have in our area apart from singing groups, but that’s not everyone’s cup of tea as many would prefer to sit and chat

Join up with groups on the internet where possible although I confess that not everyone can use the internet or a computer

Go out and speak at events if asked, and explain what it’s like to live with dementia

Although I am not in local, DEEP Groups, I was in at the start when this was started in London

I keep involved by writing my blog and keep track of what happens elsewhere around the UK.

Some of us write Blogs on the internet, although I confess my own was done as an online diary, and never expected anyone to read it let alone send an answer back.

Campaigning to the local MPs about dementia projects is a good way to keep going, although many of the MPs  are not interested in this illness

Years before the DEEP Project got going, I was proud to be asked to speak to a group of MPs in the House of Commons at was, the  Launch of the Cross Party Group on  dementia

That group is now a lot bigger than it was at that launch, so it proves that from small acorns grow large trees

Let us go out and grow a new tree in the North East and name it the DEEP Project



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