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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.

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