" "

Why is early diagnosis of Dementia important?

Early diagnosis of dementia is essential!  Most are unaware that dementia is treatable, by ‘treatable’ I do not mean curable but we can with expert help maintain an individual’s brain function for an extended period.  However, the earlier we start that treatment the better.  

In the wake of Covid, dementia diagnosis has dropped significantly.  The NHS England target for diagnosis is 66.7% in 2024, however, in the South-West of England our current diagnosis rate is less than 60% of those living with dementia.  More than 40% of individuals living with memory loss are never diagnosed and therefore have no access to treatment and will likely need expensive complex care sooner.

There are 3 crucial reasons why families must seek early dementia diagnosis. 

  1. The treatments we offer today are more effective the earlier you start.
  2. If you diagnose early and actively seek help, dementia care and support will cost the individual & family less.
  3. The earlier you diagnose the more willing the individual is to understand the diagnosis and agree to the interventions/treatments.

 

Early treatment is more effective

Despite decades of research there continue to be only 2 commonly utilised treatment options for Alzheimer’s (the most common type of dementia).  Both of these treatments are more effective in the early stages of the illness.

Alongside medical treatment, there is growing evidence that non-pharmacological treatment has a strong holistic impact.  Improving an individual’s function, delaying dementia decline and greatly improving their quality of life.  Once again, the sooner you can diagnose even mild cognitive decline and start some brain gym exercises or access a cognitive stimulation therapy the more effective the treatment.

 

Early diagnosis reduces long-term costs

The dementia journey lasts around 10 years but most of the associated costs of dementia come in the final few years.  The costs are associated with professional carers coming in to help with activities of daily living and the eventual need for 24-hour care.

Research shows that if you diagnose early and begin pharmacological and non-pharmacological treatment the slower the dementia progresses and the longer an individual can continue to manage their activities of daily living.  

Research out of Holland suggests you can delay 24-hour care by a year or longer if you work with specialist dementia services (like The Ness) – saving, on average, around £30,000 per individual.

Finally, a diagnosis of dementia will make it easier to access some social care funding like attendance allowance and make accessing social support easier.  In the future, we believe a dementia diagnosis will allow VAT-exempt community care (but that battle is still being fought). 

 

Early diagnosis involves the person living with dementia and helps them to understand the diagnosis and agree to the interventions/treatments.

Dementia today still holds a stigma.  Many people are terrified of getting a dementia diagnosis and have seen their parents/family deteriorate with the illness.  

Unfortunately, today diagnosis remains low and takes time.  A diagnosis involves visits to a memory clinic, CT scans of the head and blood tests, this means that many people will get a diagnosis several years into their dementia illness.  By then their ability to understand the diagnosis, to accept the diagnosis and be a part of the treatment decisions is severely hampered.

The latest research suggests we are close to being able to diagnose Alzheimer’s with a simple blood test, this is incredibly exciting.  It could allow diagnosis and treatment to start years earlier which would allow the individual to work with specialist organisations, make plans, battle changes and most importantly take away the stigma associated with the D word.  It would significantly delay deterioration and potentially stop those with mild cognitive impairment from progressing to dementia.

We are not there yet but an early diagnosis does give control to the individual, allowing them to make their own choices and to understand the many ways we have in maintaining an individual’s function, memory and quality of life!

To conclude diagnosis is so important and I would urge all families and those worried about their memories to contact places like The Ness or their local memory clinics.  The more diagnosed individuals the greater the power to the individual and the greater the pressure on local government/NHS to help treat the illness. 

Jonathan’s Dementia Conference speech: Non-pharmacological Interventions

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.

Press Release

Rowcroft and The Ness Care Group unveil groundbreaking Dementia and Palliative Care Conference in the South West Rowcroft Hospice is thrilled to unveil its plans to host a Dementia and Palliative Care Conference, the first of its kind in the South West, to be held at Buckfast Abbey Conference Centre on 26 March 2024.

In partnership with The Ness Care Group, the event is part of a pioneering initiative where experts, caregivers and thought leaders will converge to share knowledge, spark dialogue and shape a future where every individual affected by dementia receives the dignity and support they deserve.

Acknowledging that dementia is the leading cause of death in the UK and recognising the profound impact of dementia within the local community, Rowcroft believes that fostering a collective conversation around best practices, innovative thinking and future strategies is imperative.

The key objectives of the conference are to delve into the latest advancements and innovations in dementia, prevention, care and treatment that highlight the latest research into dementia and shine a light on the vital role of palliative care in enhancing the quality of life for individuals living with dementia.

The conference will include national and international experts and key speakers including Nathan Davies, Associate Professor of Ageing and Applied Health Research at University College London, who commented:

“Access to good care for people with dementia towards the end of life is so important. We need to deliver solutions that focus on the person and their individual needs.”

Karen Harrison Dening, Head of Research and Publications at Dementia UK is also a keynote speaker at the conference. She said: “People with dementia are no different from their peers without a diagnosis, in that they too desire to maintain independence and autonomy for as long as possible.”

Hospice chief executive Mark Hawkins said “We are incredibly proud to care for our community and want to ensure specialist, quality end-of-life care is available to everyone who needs us, irrespective of diagnosis, circumstance or background.” By organising this conference, we are not only advancing our knowledge and expertise in this critical field but also showcasing Rowcroft’s commitment to innovation and excellence in dementia and palliative support”.

Eloy van Hal, the Senior Advisor and Founder of The Hogeweyk®, will also address the conference. He pioneered this groundbreaking facility, the first of its kind globally, dedicated to housing people with advanced dementia. The Hogeweyk®, in The Netherlands is designed as a village complete with a town square, supermarket, hairdressers, theatre, pub, café-restaurant, and 27 houses. It has received numerous accolades for its inventive design and distinctive care approach.

The Ness Care Group, leading specialists in dementia across Devon, are supporting the conference and Jonathan Hanbury, Founder & CEO said “We are on the cusp of an elderly care crisis in the South West and it is imperative that we start talking and planning for a future that enables those at risk of frailty to live well for their entire life. That is why we are so proud to be partnering with Rowcroft and bringing dementia innovation to the forefront of the agenda through this pioneering event”.

Many more speakers are confirmed for the day and for more information please visit rowcrofthospice.org.uk/dementiaconference Early bird registration is now open until the end of January 2024, offering attendees a discounted rate of £149, inclusive of VAT and Eventbrite fees. Secure your spot for this enlightening conference at rowcrofthospice.org.uk/dementiaconference

The Future for Dementia in an Ageing Society

Last month our Chief Medical Officer published the annual report in to Health in an Ageing Society. The report is a stark reminder that the UK is an ageing society that needs a clear plan for managing this growing population. He reports that by 2043 well over 25% of the population will be over 60 and in many parts of the country we will see 20% of the population over 75 years old. For those working in my field this should be a warning to start planning for the future. I have spent many years thinking about how to support frailty and in particular I believe we need to change the way we work with dementia.

Currently in the UK most people living with memory loss will end up in residential care, a small minority of those will need complex care due to extreme anxiety, physical aggression or other symptoms that require acute intervention. According to the Alzheimer’s society around 70% of care home residents have dementia in the UK today (that is well over 300,000 individuals). I believe there are some key problems with this;

    • * Those living with dementia are highly susceptible to institutionalisation. This occurs far faster than for those without cognitive impairment and results in a drastic reduction of daily living tasks and a sense of purpose. This inevitably leads to more time in bed/chair and lower life expectancy.
    • * Care homes today have a wide variety of accommodation and environments, however, very few care homes are specialist spaces architecturally designed to engage and support an individual living with memory loss.·
    • * Care homes do not have the skill, training and (most important) the time to offer expert stimulation to maintain brain function, maintain movement and reduce challenging symptoms.  This once again leads to lower life expectancy.

Residential care should be the last palliative stage for those with dementia and at a point when complex 24 hr end-of-life care is needed.

Health Care Vs Social Care

I believe dementia is too often seen as a social issue rather than a health issue. This means active mental health treatment is not medically prescribed (I do not mean Alzheimer’s drugs but rather mental health therapy), the NHS don’t take ownership for the disease pathway, which means funding this expensive journey falls to families or social care (the poor cousin).

However, good disease treatment involves specialist brain stimulating therapies (See The Ness Model), encouraging the continuation of activities of daily living, maintenance of social connections, good food, exercise & sleep, and a sense of purpose.

If an individual receives good treatment evidence suggests there will be a delay in brain deterioration and a greater ability to remain independent for longer.  This by extension would result in a huge cost saving for the NHS & Social Care.  The Alzheimer’s society estimates the UK spends £34.7 Billion per year!  I believe changing the way we treat this illness could significantly cut this cost to the UK economy.

For this to occur medical practitioners, psychiatrists, geriatricians, commissioners across the NHS need to start recognising proactive non-pharmacological treatments and funding this treatment in a similar way to Parkinsons, cardiac and cancer treatment.  This will reduce the social care burden but importantly delay more expensive medical and social care costs.

What could The Future look like?

If we recognise that we are all looking at this illness from the wrong direction.  Then we need to challenge each other and approach the future from an alternative position.

My strong belief is that we have to stop focusing treatment in the acute disease phase and actively fund & work towards maintaining an individual in their community from early frailty or MCI (mild cognitive impairment) right up to the complex end of life stage and only at this complex stage should the individual enter dementia specialist architecturally designed residential/nursing care.

Let’s break this down into 2 stages;

    •     * Community Treatment
    •     * Care Home Treatment

(I use the word treatment consciously to maintain emphasis on the medical nature of this illness):

Community:

There are 3 things to focus on in the community;

1.    Research,

2.    Mental health treatment/specialist therapy services

3.    Use of Technology.

Research:

Research requires little explanation.  There needs to be more data proving the benefits of stimulating mental health therapies.  Today there is a great deal of research into many types of therapeutic approaches and those who work in this field have a huge amount of anecdotal data on cognitive rehabilitation therapy, cognitive stimulation therapy and other talking therapies but research remains under funded and under-appreciated by the medical world which means the health commissioners won’t recognise the benefits and fund interventions.

Secondly there needs to be more accurate data showing the financial impact preventative specialist memory services have on GP services, acute hospital admissions and social care interventions.

Once again savings are noted by those working in this field but the data is not robustly being captured to prove unequivocally the financial savings.  Part of the reason for this is that very few organisations offer therapy treatment for dementia and the majority of those working in the community are small voluntary organisations that don’t recognise the need to capture financial impact data.

However, if we daily prove that by funding memory loss mental health services in the community you would save £x millions in NHS costs then there can be no delay and no argument in investing in more specialist dementia services.

The Ness is working in both these areas but would welcome collaboration and support.

Mental Health Treatment & Specialist Services

It is important to qualify what I mean by ‘treatment’.  When I mention treatment or talking therapies, I mean well known treatments like cognitive stimulation therapy (CST), cognitive rehabilitation therapy (CRT) and less well-known memory exercises like mnemonic strategies, action learning & cognitive exercises (as well as sensory, creative, art, music therapy).  At this time there is not enough robust research to prove the core clinical therapies have a statistically significant impact on the disease.

However, there is a body of research that shows their holistic benefits in quality of life, sense of purpose, self-belief, happiness, and increasing evidence that shows slowing of brain deterioration.  I believe taken together all those benefits result in significant proactive healthy living that delays frailty.  With further research I strongly believe there will be proven statistically significant data to show the delay in disease progression equal to or better than medication alone.

When I mention specialist services, and what marks them out from the multitude of voluntary organisations, day centres and charities working in the dementia sector, I believe there are three important differences between specialist dementia services and voluntary organisations:

1.    Dementia Specialists only work with cognitive impairment.  All types of dementia but only with those living with dementia.

2.    They understand and focus on the neurology of the brain – why am I doing this cognitive stimulation and how does it impact on the executive function/short term memory or language centres?

3.    Finally the service should be outcome focused and outcome measured.  Why is that person in the group therapy?  What are we trying to achieve with them and how are we measuring that?  Is the treatment either maintaining or improving their physical or mental health?

Specialist services working in this field should be looking to understand the individual, have a deep understanding of the disease and be looking for ways to improve the individuals physical, emotional and mental health.  We all know that if the brain is stimulated, if we maintain social connections & if people are more closely monitored then in most cases, we can both monitor & slow health deterioration and actively act before a crisis occurs.

Yet active efforts to increase specialist memory services, to invest in mental health treatment for those with dementia continues to fail.  Instead, social care funding is focused on care homes and domiciliary care visits and NHS funding focuses on acute hospital services and expensive drugs in both cases we are missing the front line of this battle and reacting at the expensive acute phase.

Technology in Dementia

We must be both wary and encouraging of technology within this field.  We know our brains require social connection, daily social & physical touch and that isolation kills.  Today the elderly are too isolated and care technology cannot further replace human treatment or human visits to the home but the latest technology does have the ability to gather data that can predict deterioration or predict increased need and prompt families to act.  Secondly, we have a variety of technology that helps to maintain someone safely for longer in their home despite deterioration in physical or brain function.

Technology is not the panacea that so many people crave or believe but it is a tool that needs to be harnessed.

So to conclude:

1.    Place as much emphasis on non-medical research as we do on pharmacology trials and prove what we know.  In order to gain medical and commissioner support.

2.    Place funding and focus on specialist community treatment & services and recognise that this is where the fight must be focused.

3.    Understand the benefits to certain types of technology and make the most of what we have to ensure individuals stay safe in their homes for longer.

Complex End of Life Care Homes

If we fight to maintain individuals in their community, we then need to recognise at the most complex stage they will need expert care in specialist spaces.

Most care homes are not built for someone with complex dementia in mind.  We spread those 300,000 people living with late-stage dementia across a variety of care homes, with a variety of skills, understanding and ability.  No other long term chronic illness is treated like this.

Today we recognise that best practice calls for the centralisation of treatment and we have centre’s of excellence for the treatment of cardiac, cancer and stroke, building research, knowledge and expertise into these chronic illnesses.  As a complex chronic palliative disease dementia should not be spread across 1000s of small generic care homes but we should aim to create centres of excellence in which staff, architecture and treatment are all focused on improving end of life care at this complex stage.  Homes that are both architecturally designed and funded to help maintain an individual’s mental health, sense of self and purpose.

In Conclusion

We need to switch the narrative towards recognising this as a disease (not a natural part of ageing), that should be funded (as least partly) by the NHS.  The NHS commissioner’s need to be shown and recognise that if we ‘treat’ this illness proactively through a combination of medication and talking therapies then we will maintain individuals in their homes for longer and save our health & social care system millions of pounds.

However, when the time comes for 24hr residential/nursing care we should aim to build specialist homes that understand & can treat this complex stage or at the very least centralise the end-stage into a smaller number of highly specialist homes within each county.

Part 2 Compassionate Communication

In part 1 on compassionate communication, I spoke about the impact of verbal, non-verbal and the external environment on communication.  I picked out 4 tips for improving communication:

  1. Recognise that process speed slows so allow time for the individual to answer. Considerable time.
  2. Holding information becomes harder so speak slower, clearer and offer less information per speech.
  3. Recognise that non-verbal communication is the principle form of communication.  Make sure your non-verbal signals suggest positivity & safety.
  4. A loud, busy external environment can increase confusion and make any conversation difficult.

In this 2nd part on communication, I want to expand on a couple of these topics.

Old Styles No Longer Work

Old communication styles no longer work.  This is something I discuss with families regularly.  Many couples have over decades built up a pattern of communication which is the default process.  This may involve bickering, logical discussion, sarcasm or teasing.  However, as someone’s cognitive decline increases their ability to pick up on sarcasm or to follow a logical argument and retaliate in bickering decreases.  The common response will often be to say no, to refuse or an argument may begin to escalate.

Dementia is an invisible illness and so easy (particularly at the start) to forget or underestimate the damage it has done to the person’s brain.  They now struggle to retain new information, often can struggle to follow conversation or unpick complex language.  It requires the carer or family member to build a new way of communicating and to not become frustrated when old communication patterns end in frustrated arguments.

If someone living with dementia doesn’t agree or want to do something they don’t have the complex communication skills to reason or argue logically and will often just refuse.  Equally if what they do say is inaccurate or out of sequence that is no longer important.  For happy communication I teach two things:

  •       * First avoid disagreement at all times or as much as you can.  They can’t argue so agree with them and move around the subject.
  •       * Second recognise their pleasure in communication (even inaccurate unusual communication).  Even if the information is incorrect or makes no sense we all like communicating so take pleasure in all forms of communication.

Non-Verbal Communication

As I mentioned in part 1 this is the principle form of communication and should be a focus for successful happy communication.  In most situations, our non-verbal communication is seeking to either connect or seek a sense of safety.  As social animals we co-regulate in small groups or communicating 1:1. This means that our physical reactions subconsciously mimic or mirror each other’s emotions.  This occurs down to the speed and beat of our hearts, the speed of our breathing and the matching of emotions.

Someone living with short term memory loss can be (not always) in a constant state of anxiety or slight confusion.  Scared of a world they can no longer fully understand and socially unconfident.  They look around the world seeking connection, security and certainty and this is why our non-verbal language is so important.

Some examples of positive non-verbal communication:

  •      * Eye contact that includes a smile through the eyes and in the mouth.
  •      * Big smile, genuine laugh.
  •      * Tone of voice that is happy, positive and gentle
  •      * Calm sound to the voice and a comfort in silence
  •      * To be on the same eye line either sitting or standing.
  •      * Touch – gentle, non-intimate (if not family) on hand, shoulder, knee
  •      * Agreement sounds – hmmm, yes, I agree (regardless of truth)
  •      * Create a feeling that they are in control and what is happening is correct.
  •      * Hand gestures that are open, stance and body form that is open, face that is wide and open.

All non-verbal actions are seeking to co-regulate emotion.  However, occasionally you may need to actively consciously regulate and there are actions you can take.  There are small exercises to boost mood, these include:

  •     * Looking in the mirror (or at each other) and opening our arms and creating the biggest smile we can.  The wider the arms and sillier and bigger the smile the better.  By watching someone do that we will do it ourselves and feel better.
  •     * Equally fake laughing, with a big smile will turn into real laughter.
  •     * Or there is a simple tapping exercise that can help to wake up and reduce fight and flight response.
  •     * Deep humming coming from our tummies and through our chests feels silly but helps to improve emotions.
  •     * Finally breathing exercises like the 5-7 Breathing Technique (shown in all Google searches).

In Conclusion

There is so much more to say about communication and The Ness Care Group do courses and teaching around validation therapy and how to communicate well with those living with memory loss so please do get in touch.

However, at the core of everything is to recognise that this individual living with dementia has a brain that has been irrevocably damaged they can no longer communicate in the same way and will often feel incredibly scared, confused and anxious.  We must therefore change for them and enable the world so they can feel safe and loved.

Part 1 Compassionate Communication

In this blog we explore what it means to communicate well with someone living with dementia. What you can do to ensure compassionate enabling communication. It is a topic close to my heart as kind good communication can unlock the secret to enabling someone to live fully and reduce the stress, anxiety and pressure on those that care. This blog is directed to those that care for someone living with memory loss. I will dedicate 2 blogs to this topic, in the first blog I concentrate on what is communication and how the disease erodes our ability to communicate at each stage of this journey. In blog 2 we will drill a little deeper into a couple of the key themes to find safety & connection in good communication.

What is communication?

I like to see communication like a game of table tennis. Each participant is reading the actions, verbal & non-verbal, of their partner, reading the environment and tuning out the unnecessary in order to hit the ball back to their partner and continue the rally. Let’s break that down into 3 separate elements: the verbal words, the non-verbal actions and the environment surrounding us.

Verbal words:

This is the hardest element in communication. We have to understand the words, the context of those words and the sequence of the words at immense speed in order to make sense and reply correctly. Most researchers now believe that normal conversation is predictive you are guessing what will be said before the person speaks and forming a response even as the person states those words. This ability to predict the next word or action and act before it occurs is based on memory. Social memory that over your lifetime you pick up and box into associations and societal norms until you are mature enough to accurately guess what is mostly likely to be said or the next action to occur. Your mind gathers all this data instinctively and correctly applies it 98% of the time.

If your memory is damaged then this predictive function fails to work or makes a guess based on social conformity. Like “Hmm yes dear, how lovely.” A universal response to lots of questions or comments. The individual may still understand the words and the question but they now need to wait several seconds for those words to enter the brain, be interpreted and then use previous knowledge to respond appropriately. This can take anything from 5 to 20 seconds longer than you or I which within a normal conversation can feel like a lifetime.

That’s why on occasion someone living with dementia may respond to a previous question, which makes no sense to a conversation that has moved on in the usual rapid pace.

So the first point is recognising that processing speed is much slower for someone with memory loss.

The second challenge is the need to hold the other person’s spoken words in your mind and then respond using your short-term memory. If someone talks for 10-20 seconds and then asks a question you will have had to hold the meaning and context of that monologue for more than 20 seconds to then answer correctly. For many people with moderate dementia who have almost no short-term memory this is incredibly difficult.

So the second point is that conversation needs to be simpler with less information in any one question. We’ll come back to this in the next blog.

Non-Verbal Communication:

Have you ever been introduced to someone and looked at their face, shook their hand and completely forgotten their name instantly? That’s because our brains deal with small detail and big picture in two distinct parts of the brain. Presented with both small details (their name) and the bigger picture (what they look like, is the person happy/angry) our brains will ignore the detail and check the non-verbal expression for danger.

Non-verbal communication is the transfer of information from one person to another without the use of words or spoken language. This can occur in a variety of ways, including through facial expressions, gestures, body posture, the reading of tone of voice, position of person, their clothes, their actions, their wrinkles, their expression.

Non-verbal communication accounts for 60 or 70% of all communication between 2 people, but for those living with dementia non-verbal communication accounts for more than 80% of communication. It is incredibly important and feeds directly
instinctively into our vasal vagal nerve (our fight or flight response).

This needs to be your primary form of communication and needs to always be emotionally positive to elude a sense of safety.

Environment:

Finally the environment in which a conversation takes place becomes important for those with memory loss. One of the many skills our normal brains develop is something called “The Cocktail Party effect”. This is the ability for the brain to
filter out all external stimulation and focus on what is being said by 1 person. In a busy cocktail party we ignore colour, noise, people, conversations to focus our laser attention on the person speaking to us.

This ability deteriorates or is lost completely for those living with dementia. They can no longer filter out background movement, noise, people and become easily distracted. Even worse if there are too many people, or music/TV sounds, or lots of people moving around it can cause hyper-arousal in an individual resulting in increased confusion and acute anxiety.

To have a good conversation the TV/music needs to be off and the carer or relative should be aware of the wider environment creating a space that is calm, quiet, with minimal distractions. A pub or restaurant might be a socially engaging space, helpful for the carer and engaging for the person with memory loss, however, there should be no expectation that the person with memory loss should speak.

In summary recognise why language is so difficult and adapt your speech, focus on non-verbal communication and be aware of the environment and it’s impact on someone’s ability to comprehend and speak.

The Ness do courses and teaching around validation therapy and how to communicate well with those living with memory loss so please do get in touch.

Get in contact with us

We would love to hear from you. Whether you are looking to book a free trial or would like to learn more about our care partnerships. Fill in this form and our team will be in touch.

    Free Consultation