Graham Stokes, director of dementia and specialist service innovation at HC-One, writes about the real need in dementia care.
A quick search for “dementia” across our nation’s newspapers and you are likely to find an abundance of articles promising another “breakthrough” medicine. For the families of those living with the condition, any indication of new treatment options for their loved ones or even preventative measures for future generations can be promising, but I fear that these triumphant articles are too often providing false hope and distracting us from addressing the real need in dementia care.
In the years to come, the pursuit of what may become a Holy Grail to dementia treatment could be regarded as having hindered the development of more appropriate and specialist dementia care models at a time when the population of people living with dementia is expected to dramatically increase. It is difficult to see medicines becoming a viable alternative to care in the near future and our continued focus on them alone could become a growing issue.
A long wait for an unproductive roll-out
Unfortunately, the expected impact of these medications is unlikely to be revolutionary, slowing progression of the condition by relatively marginal amounts. Add to this the lengthy R&D process alongside the regulatory and infrastructure challenges to prescribe said medications, and it is clear that reliance on their effectiveness could be detrimental.
We also know that many people are currently diagnosed far too late for disease-modifying medications to work, often requiring lengthy and invasive diagnostic tests as a benchmark for prescription. Factor into this as well the current under-resourcing of memory clinics and mental health teams across the country and we can quickly start to identify that our nationwide health apparatus is simply ill-equipped to manage any effective roll-out.
This clearly paints a picture of an emerging healthcare challenge that will require many logistical and diagnostic barriers to be overcome, all in an effort to stave off for a few months the onset of the most debilitating symptoms of dementia.
The case for better care
Rather than placing all our hope and resources into innovative medicines that play on the margin of disease progression we must also invest in a better standard of care for every stage of the dementia journey.
The sheer number of people who will require even the most basic of dementia care services is set to monumentally increase by 2040 with 1,351,000 people expected to be living with dementia in England alone up from 651,000 in 2015. But as has already been highlighted, our inadequate diagnostic infrastructure will mean around a third of these people will be undiagnosed and hence will remain unknown to services.
It is hardly an overstatement to say that the way the country has approached dementia care to this point has been disappointing, with attitudes and standards requiring change and more specialist dementia care services needed to adequately address the issue of dementia. As a society, we have perceived people with dementia as a shell of their former selves with unhelpful language that removes their humanity, perpetuating the myth that dementia is a terrible condition, destroying the person but leaving the body behind.
But the truth is, people living with dementia have needs, fears, loves and likes, words that historically have been omitted from the vernacular of dementia care.
It is clear a new approach to dementia care is needed, one that is person-centred seeks to understand what triggers distress and tailors a person’s care accordingly, and one that also promotes quality of life in the face of Britain’s growing dementia care need.
A new model of care
When we consider a person-centred approach to dementia care, we start by understanding that people with dementia are not lost, they remain as people, they are who they have always been, albeit now hidden behind a progressively severe intellectual disability that results in them acting in ways they have never done before, but their ways of behaving cannot be taken as evidence that the person has disappeared.
Historically, dementia care sought to sedate residents in an effort to make them more compliant and their concerning behaviours more manageable, a situation that was not ideal for those providing care and certainly not the best outcome for the individual living with dementia.
A new model which champions the principles of person-centred, solution-focused and evidence-based care currently exists at HC-One’s Darnley Court Care Home in Glasgow and Meadow Bank Care Home in Preston.
Known as a Specialist Dementia Care Community (SDCC), this unique approach seeks to understand why individuals become distressed and display the complex behaviours that prevent them from receiving care in more traditional settings. It is the only model that utilises the expertise of assistant psychologists directly in the home, whose job is to understand the individual, and work with them to address their behaviour concerns, culminating in a proactive personal care plan.
Everything within the home is designed to meet the complex needs of the residents, from the low-arousal environments that work to calm residents to the work of our therapeutic well-being practitioners who design quality-of-life programmes in which it’s not what a person does that is important, but how they feel about what they do.
As a result, we have seen a significant drop in the number of distress incidents from both an individual and community level.
Excellent care throughout the UK
The impact of this model is already materialising. One resident has displayed such an improvement in their primary behaviour concern that they have stepped down from the specialist community in Glasgow and have been able to re-enter a regular dementia care setting.
Our model is still in its relative infancy, but there have been notable positive outcomes for residents, and we have ambitions to extend the model across the country.
The proliferation of this care model relies on our commissioners and local authorities focusing on the right model of care for a person’s condition, quality of life and improved resident outcomes, rather than on cost.
The adult social care system has often prioritised cost-efficiency over suitability when placing individuals in care settings, which can prove to be a false economy. In many cases, people with dementia end up needing expensive one-to-one care, and placement breakdowns frequently lead to prolonged hospital stays while a new care home is found – a process still largely driven by cost considerations.
While it is easier said than done, particularly with local authorities facing such financial constraints, we do know that a care placement in an SDCC costs local authorities less than if that same resident were to spend the equivalent length of time in hospital.
Not every care environment needs to be identical to the work of our SDCCs but by following the core principles of person-centred, solution-focused and evidence-based approaches, we can ensure that current and future generations receive the kind care that they deserve, most appropriate to their acuity, rather than rely on the prospect of major breakthroughs in dementia treatments.
