When my mother was diagnosed with dementia at the age of 65, she asked to meet people in a similar situation. It was while looking for a way to make this happen that I came across Cognitive Stimulation Therapy (CST), a psychosocial therapy programme, recommended by NICE (1) for all people with mild-moderate dementia since 2006. I ordered the guidebook and contacted the local Alzheimers Society. I offered to find funding and a venue if they would deliver a course.
A year later and after a few false starts, I teamed up with Age Concern Horsham, with support from Awards for All, to set up a one-year pilot which offered ongoing CST combined with a carers’ information course.
CST is a series of fun activity sessions for small groups of 6-8 people, based on person-centred principles, designed to improve well-being and allow participants to function at their maximum capability.
The sessions cover topics including food, current affairs, using money and word games. Each is run to encourage implicit learning rather than explicit teaching, people are asked their opinions rather than for factual answers, and multi-sensory stimulation is used to stimulate all the senses thus assisting with concentration. By creating continuity and consistency between sessions it helps to reduce confusion and helps to aid retrieval. It is a simple and effective evidence-based therapy. It is adaptable to group capabilities, can be used in care homes, sheltered accommodation, day services and the community. But without the might of a pharmaceutical company, it remains little known and rarely offered.
In the Sussex pilot we offered CST on an ongoing basis (there are still weekly sessions 16 months on), extending the session time from 45 minutes to 90 minutes. This included social time in the Age Concern Cafe. We offered a weekly carers’ course alongside the initial period. This became a monthly peer support meeting where carers could either share experiences or invite a speaker. We asked for a donation of £3.50 a session to help meet costs.
Because of the very low diagnosis of dementia in West Sussex (using prescribing rates of anti-dementia drugs as a proxy for diagnosis, West Sussex has one of the lowest rates in the country (2)) we opened the groups to people with cognitive impairment or dementia and accepted self as well as agency referral.
The ongoing contact allows for help signposting and accessing further support as required, so reducing the need for crisis care. Being based in a non-medical setting also helped normalise the situation for participants and carers. It also helped reduce stigma within the Age Concern lunch club members who were able to people with dementia having fun. It also helped improve the Age Concern staff dementia awareness.
I had assumed that if it was successful the local statutory funders would take over, or Alzheimers Society would pick it up. I have been amazed and frustrated by the negative response.
When we presented details of the pilot to the local statutory funders they applauded the scheme, and were delighted to find something that met so many of the needs of people in the early stages of dementia. But, possibly overwhelmed with end-of-life care costs, refused help with funding and have no plans to support CST in Sussex.
Alzheimers Society is a group of local charities with a central national body. They have ignored CST since it was introduced and despite many emails and calls it still claims that the evidence is inconclusive. This is despite RCTs (3) which show CST is as effective as anti-dementia drugs and led to significant improvements in quality of life. I have asked what their concerns are. But I have yet to receive a reply.
Why, despite all the rhetoric, are services generally so poor? There are good intentions in the National Dementia Strategy(NDS). But the funding is a shambles. The PCT budgets were allocated in the normal way for 2009. Then, in February, the NDS was launched and PCTs were told that between them they had been allocated £150m within the 2009 budgets. It was up to the PCTs to decide how much they had been allocated and how they wanted to support dementia services. No new cash, no formula for distribution and no ring-fenced budget. Is the acceptance of poor service provision due to the classification of people with dementia as ‘economically inactive’? They are old in a society that values youth and fears mental health problems – have they become today’s ‘untouchables’?
Much of the costs of caring for someone with dementia falls to the family – and so perhaps the decision has been taken to maintain this cruel status quo. I don’t subscribe to the ‘love dementia’ approach that seems to have been adopted by many organisations, but I wish we could show more love and support for people with dementia, helping them enjoy and make the most of opportunities in the earlier stages of the disease instead of sending them home with an information pack on incontinence and choking, to become invisible, isolated and depressed.
I am struggling to see the merits of improving diagnosis rates for people with dementia when they are so often treated in this way.
How does the academically developed and proven therapy of CST make it into practice? University College London has produced a user-friendly guide which is available at £13.50. They have published results, offer training, and the cost effectiveness of the programme has been positively evaluated by the London School of Economics (4). Plus, they have secured a NICE recommendation. But there would seem to be very little awareness. Neither CST, nor any psychosocial therapy, was mentioned in the National Dementia Strategy. It feels as though this useful therapy is being overlooked in the search for new pharmaceutical interventions and routes for research, when surely we need to support people now with what we have whilst looking for better and bigger treatments.
As Dr Steve Iliffe at University College London said “innovation diffuses slowly unless it has powerful champions”. Can we only offer help through a prescription pad? Who should be championing CST?
PCTs all over the country are busy formulating plans and doing mapping exercises – reinventing wheels in all shapes and sizes, spending their budgets on management meetings and experts whilst continuing to ignore a therapy that is cost effective, simple to provide and available. Obviously resources are finite but we are judged by how we look after the most vulnerable and it seems to me that people with dementia, and their often elderly carers, are being failed every day, in their thousands.
* Joanne Knowles is an adviser with the Citizens Advice Bureau and a carer.
(1) The NICE guidelines on dementia from November 2006 state that: “People with mild / moderate dementia of all types should be given the opportunity to participate in a structured group cognitive stimulation programme. This should be commissioned and provided by a range of health and social care workers with training and supervision. This should be delivered irrespective of any anti-dementia drug received by the person with dementia”.
(2) Pathways through care for people with dementia in West Sussex: Final report Edana Minghella Deborah Klee June 2008. Commissioned by West Sussex PCT
(3) Spector A, Thorgrimsen L, Woods B, Royan L, Davies S, Butterworth M and Orrell M (2003). Efficacy of an evidence-based cognitive stimulation therapy programme for people with dementia: Randomised Controlled Trial. British Journal of Psychiatry, 183: 248-254.
(4) Knapp M, Thorgrimsen L, Patel A, Spector A, Hallam A, Woods B and Orrell M (2005). Cognitive Stimulation Therapy for people with dementia: Cost Effectiveness Analysis. British Journal of Psychiatry: 574 – 580.