This is National Dementia Week and I am promoting it with this guest post written by Joanne Knowles, who is tirelessly crusading for sufferers to be helped with a clinically approved course which she feels passionately about. I can totally understand why Joanne (pic below) wants to do everything she can to help her mother who has dementia – they are pictured together here at Joanne’s 21st – and other sufferers.

This is her story:

In 2006 the National Institute for Clinical Excellence recommended that everybody in the mild-moderate stages of dementia had access to a course of Cognitive Stimulation Therapy (CST). This simple psychosocial therapy was developed by University College, London and works with small groups to actively stimulate and engage people in the early stages of this disease and help them function at their maximum capability.

That same year my mother was diagnosed with dementia aged 65 in The National Neurological Hospital, London. We had known there was something wrong for a few years, and in a way it was a relief to have a diagnosis and understand where we were. Mum asked to meet some people in a similar situation and whilst looking for a way to make this happen I came across CST. After a year of false starts with the local Alzheimer’s Society, I helped to set up a pilot with Age Concern in Horsham.

I had assumed that if the pilot was successful, statutory funders would take it on. I was shocked when a group, including the PCT commissioner, applauded its work in October 2008 – and then told us that they could not fund the scheme. Since the completion of the pilot, the weekly sessions have continued with piece-meal funding for existing members, but no new groups have been started.

Feeling increasingly frustrated at all the talk of pharmaceuticals and longer-term research, I decided to take a leave of absence from my politics studies at SOAS (and my senses) to try and generate some awareness and access to CST, which I have been doing with very limited success over the past few months. I have been staggered by the lack of foresight and commitment of PCTs and Mental Health Care Trusts to tackle the desperate isolation that people experience with the diagnosis, including the way in which their friends fall away, and their coping strategies of avoiding social and more complicated situations which leads to loneliness and often depression for the person with dementia and their carers.

Unfortunately, I have been unable to make a sufficiently compelling economic argument to see the successful pilot extend throughout the country, even though early intervention has been found makes sense both socially and fiscally. However, I am hopeful that some progress is being made. Boots and Alzheimer’s Society both publish fact sheets on dementia and are considering mentioning CST; BUPA have responded promptly and positively and will be mentioning CST on their website, Mind have just also agreed. I have contacted all the members of the Association of Directors of Adult Social Services as it is currently local authorities who pay the biggest increase in funded costs when someone moves from a mild to a moderate dementia and so they would seem to have the strongest reason for offering a cost effective (according to LSE) therapy that helps people stay well and live independently longer.

I am chipping away at the thick walls at Alzheimer’s Society, who are aware of CST and ‘will review this approach alongside other approaches and models of interventions when we are at that stage in our developing programme.’ Crossroads (a national carers support charity) is starting a course, and hopefully more will follow. A couple of medical publications are considering running articles, but have hit a brick wall with Age Concern England who, after a year of correspondence, have refused to send out information on CST to their mental health network ‘since we cannot be confident the promotion of CST, at least at this stage of its development, would be in the best interests of older people and their carers, we feel we must now withdraw the offer of its promotion to the Network’.

Yet this is a NICE recommended treatment and the programme is brilliantly straightforward to deliver by someone who has the experience of working with groups and with people with dementia. Sadly, there is still very little awareness or action.

Cynically, I can see that most people with dementia are no longer economically active and most of the costs of caring fall to families so possibly, despite all the rhetoric, actually the decision has been taken to offer as little support as possible.

According to Professor Steve Iliffe at UCL, ‘ innovation diffuses slowly unless it has powerful champions’, and sadly with a scraped pass at O level biology, it seems I have been a lowly and lonely campaigner and am yet to find a powerful champion. According to the Alzheimer’s Society, one person is diagnosed with dementia every three minutes, and 1 in 3 people over 65 are dying with dementia; so this really is everyone’s problem. Any suggestions or further information, please contact me at knowlesjoanne@hotmail.com