A hotbed of scientific discovery
In its attempt to fight dementia the government has set out a strategy of educating people aged 40 and over. This change to the previous approach of mainly targeting over 65s through education and screening is an indication that more needs to be done to ensure early detection of the disease. It may also be a reaction to the fact that the number of dementia sufferers (currently totalling 676,000 in England according to NHS data) will rise significantly in the future. In terms of government investment in dementia research, over £60m per year was spent between 2012-2015 and a state-of-the-art Dementia Research Institute is due to be operational by 2020 which it is intended will become a hotbed of scientific discovery of international repute.
Such grand designs and ambitions represent a sign of hope for developing a better dementia strategy on a national scale but, locally, evidence of a ‘postcode lottery’ determining the quality of patient care remains a cause for concern. In September 2015 NHS Digital mapped this variation in care using their Dementia Atlas, comparing areas across England by category which included prevention, diagnosis and support in addition to as ‘living well’ and ‘dying well’. Metrics used included the proportion of people aged 65 and over registered with a GP practice with a formal and recorded diagnosis of dementia. With the map divided into various shades of blue it is easy to judge, for example, where prevention levels are highest and where they are lowest.
Case finding; assessment of cognitive function; communication of the diagnosis; early intervention (drug/non-drug); provision of support and information; supporting carers’ future care planning, management of behavioural problems and end of life care are all significant areas that GPs can address according to international research (Iliffe et al., 2010 and Robinson et al., 2010) which has shown that clinical work involving GPs remains central to supporting patients with dementia and to potentially transforming current practice.
Rising to the challenge
While such evidence is worrying, those on the frontline continue to work towards better-educating their patients and spreading the message to both clinical and non-clinical staff that a new way of thinking about dementia is possible.
The work of Dr Nicola Decker, GP at the Oakley and Overton Partnership in Basingstoke, can certainly be characterised as embracing a ‘new way of thinking’ for primary care. During a meeting of local CCG dementia leads in 2013 – headed by Alistair Burns, NHS England’s national clinical director for dementia – the focus of discussion centred on the successful dementia strategies employed by hospitals and public services. “I asked, ‘Why are we not talking about general practice?’ Hospitals are already dementia-friendly but we are not making practices dementia-friendly,” Nicola says. Alistair then challenged Nicola to make her practice the first to earn the dementia-friendly practice title. “I accepted the challenge and put together a toolkit that could be replicated by others,” she continues. “Alistair came and opened our new dementia-friendly practice – the first of its kind, as far as I am aware – in April 2014. Before then there was no standardised strategy for dementia care in GP practices.”
Dementia-friendly practices are distinguished from those without the title primarily because of their adherence to the principles of the ‘SPACE’ acronym which was first used in secondary care and which refers to: staff who are skilled and have time to care; partnership working with carers; assessment and early identification; care that is individualised and environments that are dementia-friendly. Nicola further defines the approach used at her practice. “I used the same acronym and added an ‘i’ to make the new acronym iSPACE. Basically, it’s about a whole team approach with everyone being proactive about dementia training and ensuring that dementia patients receive extra time from both clinical and non-clinical staff in ways that are more meaningful to them.”
Statistics from the Alzheimer’s Society’s April 2016 Fix Dementia Care: NHS and Care Homes report reveals that GP charges to care homes exceeds £26m per year in England. The charity found that one in five care homes surveyed are wrongly being charged by GPs for, ‘services that should be free on the NHS.’
Care in the community
The response from the local community to the change has been positive and, at times, overwhelming. “I have a whole host of local people volunteering to visit dementia patients,” Nicola explains. “I have 15-20 healthy volunteers currently visiting isolated dementia patients. It’s all down to the success of the project. It’s been a fantastic story to see local patients be so engaged.”
In terms of receiving adequate funding for the project and publicising the issue of dementia Nicola says that working with the Wessex Academic Health Science Network has been particularly helpful; the organisation provided a grant of £4,000 to initially fund the project. However, Nicola is clear that primary care is not simply reliant on more money to better-manage patients with dementia. “I don’t believe this is about money; this is about a change of mindset. In primary care there’s probably a feeling that we are swamped with too much work – which is absolutely true – but I think that, somehow, we need to raise expectations when it comes to dementia care. We need to be thinking, ‘Would this be good enough for my dad or granny?’ – that’s really important.”
Nicola’s iSPACE acronym explained:
Identify a dementia champion
Staff who are skilled and have time to care
Partnership working with carers, family and friends
Assessment and early identification of dementia
Care plans which are person-centred
Environments that are dementia-friendly