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Re-defining the Dementia Pathway

Written by Jonathan Hanbury, Clinical Director & CEO of The Ness Care Group, for the UK Dementia & Palliative Care Conference.

I feel I should very quickly justify why I am standing before you arguing for a fresh perspective on treating this condition. I have worked in the NHS with those living with dementia for decades but 8 years ago I took the decision to step away from a senior position in the NHS and dedicate my life to working with families living with this disease.  In the last 8 years I have spent pretty much every waking moment thinking about the condition.  I built The Ness from a wild idea into one of only a handful of dedicated specialist dementia organisations in Devon.  The Ness has run volunteer led Memory Café’s across Torbay, I have built specialist memory Hubs that help families, that teach health professionals and we run small group based therapy every single day for the last 7 years, I personally run groups every week and today we support families across much of Devon.

I want to present a fresh way of viewing the treatment of dementia.  I hope I get people thinking.  Let’s start with 3 facts that we all know!

Alzheimer’s and the other types of dementia are NOT a natural part of ageing! In fact the vast majority of individuals in their 80’s and 90’s will not experience the affect of the abnormal tau & beta-amyloid protein.

All dementia’s are palliative illnesses that have no cure BUT each individual progresses at a different rate depending on a multitude of external factors.Dementia is incredibly expensive.  Costing the UK economy a Whopping £25 Billion in 2021.  The majority of this cost occurs in the final stages of the disease pathway!

‘Ok’

Let’s flip those facts on their head and ask the obvious questions:

  1. If dementia is NOT a natural part of ageing but a condition that is more prevalent as you age should we talk about it in similar terms to other chronic illnesses that affect our population in their later years like heart disease or diabetes?
  2. If a dementia can progress at different speeds, should we look for correlating factors that delay disease progression and design treatment pathways that diagnose early and work to extend life & delay deterioration for as long as possible?
  3. If dementia is incredibly expensive and most of the cost occurs in the late stages.  Should we design systems and pathways that delay deterioration, that maintain an individual in their home and focus on good physical & mental health?
  4. YES! Yes, of course!  In my opinion a healthcare treatment pathway has to involve professionals & professional organisations, it needs expertise & measured outcomes and it should be funded (at least in part) by the NHS.  It cannot rely on volunteers, volunteer community services, or community activity clubs.  There is an incredibly valuable and much needed place for all those types of service particularly in frailty prevention & isolation but experts must lead on the treatment of chronic conditions and in a similar way I would not want my cancer or diabetes treated by those without in-depth training and agreed therapy targets and measures.

The first step when we look to similar chronic conditions is to create a treatment pathway that all diagnosed are placed on and has outcome measures and targets which specialist organisations, NHS & local authority are held accountable against.  For good examples we can again look to other chronic health conditions.

The NICE Guidelines on Dementia states……  – and The Royal College of Psychiatry attempts to go further in breaking down what defines those words.

However, in my opinion there is a distinct lack of recognition, lack of detail around what makes outstanding treatment!  What treatment can improve or maintain someone’s holistic physical or mental health?

In a mental health illness as complex as dementia we would be at best naïve if we thought medication was the only treatment plan for dementia.

There is a growing wealth of research coming out of neuroscience on how memories form, how neurons hold information and then transmit information.  Alongside this research we are learning how to protect our brains and even improve function in later life.

My wife is a clinical psychologist and much of the work I do is influenced by the work she does in mental health, trauma and the effects of trauma on children with neurodivergence.  I do not have the time in this brief presentation to go into some of the work she does and that resonates with those I work with, however, I believe (and have growing evidence) that we can maintain an individual’s physical and mental function when living with dementia through specialist therapeutic intervention.

I believe and teach that this involves 2 elements;

The first I call THE HOW & THE WHY! With a little what..

Some simple understanding of HOW our brains work, ideas on neuroplasticity, how memories form, the difference between semantic memory and episodic memory, how different types of aphasia affect us.  How the different types of dementia change and impact our brains. Not rocket science but some neuroscience.

Secondly constantly asking the ‘WHY’ question when running cognitive stimulation exercises.  ‘Why am I using creative art, which part of the brain is this changing?  Why am I using associative words, and simple speech & language exercises?  The action is not the focus but the WHY. Why am I doing this why does it work! Finally a little what; what changes am I seeing in their disease progression and what will I change in my plan/outcomes/session to help.

The second element to good treatment, is something we all know, humans are social beings.  Our brains develop and are maintained by good social interactions.  This doesn’t change once you have a diagnosis of dementia.  The more social moments and the greater variety of social connections we encounter the better protection against brain deterioration.  However, not all social encounters are beneficial for someone living with dementia.

An individual diagnosed with dementia finds it harder to process information and is more easily overwhelmed by external stimulation.  Placing someone living with dementia in a room with 10+ other people with cognitive decline is often confusing and doesn’t benefit their brain.  Placing them in a group of 4 other individuals in a calm space and allowing communication, encouraging conversation and the forming of relationships is hugely beneficial!

Right what have we learnt so far?  That medication cannot be the sole answer but we need to learn from our colleagues in mental health and utilise targeted brain exercises to stimulate each area of the brain (as well as more holistic elements of physical movement, eating well and management of emotional dis-regulation).  We need to prescribe post diagnosis small group based treatment to maintain their social brain but big groups can cause hyperarousal and not help.

Our treatment pathway is taking shape!

However, similar to any medical pathway proposed treatment must be driven by evidential data and best practice –  The Royal College of Psychiatry states ‘For most dementia treatment interventions, routine sessional assessment should be the normal’

An organisation can’t argue that they are maintaining an individual’s health without data to back the assertion.  Today The Ness use the Functional Independence Measurement (FIM & FAM) to measure the treatment we offer and after years of searching we feel this validated tool offers the best compromise in the community.  Alongside the FIM & FAM tool we created a tool that tries to measure the clinical cost savings per individual who attends a specialist organisation.  Our measuring system is far from perfect but we recognise the need to prove impact if we are arguing for treatment.

We want to work with colleagues in memory clinics and universities to prove the delay in admission into residential care through specialist support.  Anecdotally I am certain this would show that specialist cognitive therapy with good medication support will significantly delay an individual’s need for complex care & maintain their independent function.

To summarise we have to change the language we use when discussing dementia, stop seeing this as a social issue to be treated by A VALUED AND WELL MEANING COMMUNITY and begin to recognise and talk about this as a HEALTH condition.  This means thinking in similar terms to other health conditions – heart disease, diabetes, cancer and work with medical colleagues to create a treatment plan whose core outcome is to delay cognitive decline, maintain physical and mental health and reduce the emotional & financial cost on families!

The treatment plan cannot rely on medication but must invest and recognise mental health strategies both those that have been used for decades by our colleagues in adult mental health but also the latest research in to brain function & health.  These therapies must be measured, delivered by professionals and paid for by both Health & social care.  If we continue without changing, if we continue to place plasters over a failing system then the late stage, end of life costs will continue to soar and social care and families will collapse under the financial strain.

To offer outstanding, compassionate and FAIR treatment we must invest in the proactive treatment stages and stop reacting to an acute crisis.

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