‘Oiling the Cogs of the Brain’

Last year the Care Act became law signifying the government’s intention to overhaul the care system. With an ageing population, our dementia care costs are a staggering £23 billion pounds per year. The Care Act aims to do things smarter and is underpinned by some driving political ideologies; society cohesion and the power of prevention. Both of these ideologies align with the trends that we are seeing in research and practice in dementia care. For example:  over the last few years, there has a shift from searching for a cure by researching dementia in the later stages to some focus on prevention over a ‘life course view’ , exploring risk factors to determine the nature, and cause of onset. The Care Act echoes this from crisis management to prevention, however in this context it is far more about preventative measures in the social environment; the powerful application of psychosocial therapies in dementia to maintain skills, manage symptoms and in some bolder aspects, to foster some level of cognitive rehabilitation. It is about the power of self-determination, person centred support and education.

There is much interest politically on how such interventions can reduce the economic burden by both delaying the admission to residential care and improving wellbeing. For me, COGS (a day service model based on CST) provides an almost perfect solution to the objectives of the Care Act in meeting the needs of people with dementia. One of the key themes from the Care Act is prevention. COGS may potentially delay the progression of the disease by stimulating the mind, by building cognitive reserve, whilst at the same time providing valuable respite care to family members (another key goal of the Care Act). So why, why why has this service not been taken up by the masses?? The answer to this continues to baffle me.  This may be because behind this ambitious vision is a single person, working alongside the good and the great to muster together just enough resources to get the initiative of the ground. The lack of take up may also be because it has not been supported by the powerhouse of the universities, who are able to bank roll research to ensure its evidence base, and worthiness of funding. However, there are many services operating out there, very successfully without such support. Despite the steady growth of the project, the slowly evolving nature of COGS has enabled the creator to protect its core values, fight for what is right which in turn has ensured good outcomes from the project. The core essence of a promising social enterprise can be lost, in the rush to turn the profit, when developing it to a national scale.

Many of my days are spent reading around different areas of research and practice in dementia care. Every once in a while I will come across something very interesting, that starts to fire off my brain cells in a sort of frenzy of excitement. Something that I call a ‘light bulb’ moment, where I start to draw the links between isolated research papers, the stories I have been told in training and the gaps I see and hear about daily in service provision. One of these moments was when I met and got to know Jackie Tuppen the creator of COGS. COGS is day service model that has been developed from Cognitive Stimulation Therapy (CST).

Jackie Tuppen is an Admiral Nurse who could see in her past practice that there were many people left abandoned, without hope following a diagnosis. Whilst there were patches of CST available in memory clinics these services are time limited, restricted by funding. Jackie herself is always cautious to make the point that CST has an evidence base, and is therapeutic whereas COGS has no such evidence base, is not therapy but instead stimulation. I beg to differ, her humble attitude has always made me value her even more for her amazing achievements. I am hoping that this blog makes its way to a potential PhD student to consider one day to take up her project to help build the evidence of its impact. I have always suggested to Jackie that she undertakes some level of cognitive testing prior to and after the clubs, however she has always insisted that the only measure of effectiveness she seeks is that of wellbeing and upon reflection she is right. The small scale qualitative work that she has completed on the project shows remarkable outcomes.

Members: “Happy”, “improved my concentration”, “more relaxed“, “company with other people equal to myself”, “keeps my mind active”, “I’m aware what is coming up”

COGS has its origins in Cognitive Stimulation Therapy, or CST which was developed by Aimee Spector and Martin Orrell and their team at UCL in 2003. A systematic review was carried out of the evidence for psycho-social treatments that worked and the identified interventions were utilised in the development of CST and thus, as an intervention it has its origin from  a broad framework. Some of the interventions incorporated include reality orientation, music therapy, validation and reminiscence. CST is not just about what is delivered but also how it is delivered with Person Centred Care being the central theme, evident in its principles. The ‘how’ and ‘what’ is delivered are inter- linked, and dependent on each other. In 2006 National Institute for Clinical Excellence in the UK – NICE, recommended that CST should be offered to all people in mild to moderate stages of the condition. In 2012 the World Alzheimer’s Report recognised and publically advocated the use of CST. The CST model is delivered over fourteen session delivered over two hours a week whereas COGS is designed to work over  a longer period of time: The day runs from 10am to 3pm, every week, for as long as a member can benefit from the stimulation. It provides the opportunity for them to recall or develop new skills in activities. It also provides the family/carer/significant other with five hours of valuable respite. The five hours respite, whilst their relative attends the Cogs Club, has been described as “a lifeline”.

Facilitators of the COGS groups receive training and on-going mentoring from Jackie herself. The approach used by the COGS club, is a skilled approach, fostering and nurturing a positive environment where everyone feels included. Having the right social environment is critical for the learning to take place. Individuals are welcomed by name and through an activity individuals are encouraged to consider the aims of the session. Fostering these intrinsic goals are central to wellbeing, much like instilling hope is. CST has a number of other ‘guiding principles’ that must be adhered to, which are whole heartedly adopted by the COGS clubs.  These principles draw on the vast range of different, evidenced based non-medical therapies noted above, but also includes what we know about memory, cognitive function, neuroplasticity and learning theory (explicit and implicit learning). The therapy surely should be congratulated for the breadth of its framework, drawing from very extensive research in a number of fields. As a practitioner, becoming trained and competent in CST and COGS ultimately leads to truly embracing the bio-psychosocial sphere of dementia care; understanding how also we can effect change on a physical level through the development of new neural pathways simply by the way we treat people, and the opportunities we give them. Some might argue that this is an over-simplistic view, however it is testament to the power of the social model of care, and our understanding of the interplay between both medical and social models, and that this may hold the key to the most effective treatments for dementia care available to us today

So I write this blog as an appeal to all of the commissioners out there. Get savvy, and use the COGS model to start to meet the demands of the Care Act for individuals living with dementia. The COGS model costs between £12 – £30 per person, which is a cost saving on similar projects. The costs vary, as is dependent on the variables such as venue. However I truly believe that with some joined up thinking and collaborative work these costs could be sustainable in a large scale project.

I am very excited to take this model with me to New Zealand in a couple of weeks. I am hoping that they might embrace the philosophy and spirit of the COGS brand.

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