VIDEO ► Trendsetting Young Dementia Ambassadors

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A Family model for effective intergenerational exchange.

When was the last time someone made a public speech that knocked you off guard and left you with a lump in your throat?

On the 14th of May 2014 I was privileged to attend, as a guest and speaker, the Association for Dementia Studies‘ (ADS) 5th anniversary celebration.

It would be fair to conclude that a highlight for all was a speech made, not by one person, but a family of three!

June Hennell, in memory of her late husband Brian who lived with dementia, announced her generous sponsorship of the Hennell Award for Innovation and Excellence in Dementia Care.

However, when June took to the stage she did so with her two grandchildren.

You could hear a coin drop.

Their eloquent and heartfelt speech was followed by a standing ovation.

Here is a brief extract:

Young people are more likely to want to learn about dementia and shout out for the cause.

The West Midlands has been the birth place for developing dementia intergenerational exchange in England, now part of the Prime Minister’s Challenge on Dementia.

Thanks to an impressive partnership, we now witness a social movement in exponential growth, catching on in hundreds of schools, touching the imagination of thousands of pupils, teachers, people with dementia, carers and citizens across England.

The impact to date has been measurable, positive and truly inspirational.

Young people are proving adept at grasping dementia. They get that it is not a normal part of ageing, and can see how it is possible to live well with it.

They are not fazed by the stigma and yet they can mobilise communities into achieving positive outcomes.

England’s schools, educators, local communities, health and social care planners amongst others must do more to embrace, support and promote our trendsetting young dementia ambassadors.

Sustaining the steady flow of graduating dementia friendly generations must occupy central place in all current and future English dementia strategies.

The Hennell award, set to become an annual event, celebrates the ability to implement positive change for people living with dementia.

For more on the Hennell award and the extraordinary family behind it, including the nomination process, please contact the ADS.

Meanwhile, hats off to the Hennells, and happy birthday to the ADS!

@KarimS3D

Sedating dementia ► a global alert, shocking disparities and a blueprint for action!

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Towards transforming quality and safety in dementia care.

 

What’s the global problem here?

A WHO report (2012) affirms that drugs given for the management of behavioural and psychological symptoms in dementia are being overprescribed globally. Although first-line treatment for behaviour that challenges is non-pharmacological, the prescription of psychotropics remains high and it appears that current systems deliver a largely antipsychotic-based response. Prevalence rates of antipsychotics prescribing range from 20% to 33% and most cases are residing in care homes.

What harms can antipsychotics do to people with dementia?

1,000 people with dementia on an antipsychotic x 12 weeks = 10 extra deaths + 18 extra cerebrovascular events + 58–94 gait disturbances!

Does Europe overprescribe too?

The Alzheimer Cooperative Valuation in Europe (ALCOVE), described in a previous blog, confirms that people living with dementia in Europe are overexposed to antipsychotics.
Whilst the prevalence in over 65s was 10.6% in the general population, and 22% in memory assessment units, prescribing was highest in care homes at 35.6% (25.8 % in Norway and 60% in Italy).
It goes further; overuse of antidepressants, prolonged use of antipsychotics, concomitant use (two antipsychotics or with other psychotropics e.g. hypnotics), or absence of use as second-line after a non-pharmacological approach are also reported. 

These variations are as alarming as they are unacceptable!

Do we have affordable solutions?

There aren’t that many health economic studies. In one cohort of 133,713 individuals with dementia requiring antipsychotic drugs in England, in fact it was estimated that behavioural interventions cost £27.6 million more per year than antipsychotic drugs. 

However, the additional investment was offset by nearly £70.4 million in healthcare savings due to reduced incidence of strokes and falls, and quality of life improvements to the tune of £12.0 million in benefits per annum. Non-pharmacological interventions therefore represented an efficient use of public resources.

Can the ALCOVE toolbox help?  

For an overview find out in this video (French subtitles) 

 

What’s in the box?  ☞

(1)  risk exposure measures in Europe

(2) models of tried and tested risk reduction programmes

  • England’s The Right Prescription; Call to Action, (reduced Antipsychotic prescriptions for people with dementia by 52% in three years) and
  • France’s National Authority for Health  programme (reduced the rate of Antipsychotics exposure in people with Alzheimer’s disease from 16.9% to 15.5% over 3 years). In fact the French ‘mastering indicator’ is used as a proxy Quality of Life indicator, as a measure of national implementation progress and as a quality indicator for care homes. 

(3) links to timely diagnosis

(4) ethical principles underpinning prescribing, and

(5) national programmes to prevent and manage behavioural and psychological symptoms in dementia.

Shaking the tree!

Behaviours that challenge in dementia are almost always a product of complex interactions between care structures and organisations, individual factors, and workforce skills.

ALCOVE contains an up-to-date evidence base for interventions that work and proposes a 3 D model for reference in all settings.

Here then is an opportunity to begin (or continue) conversations to limit the use of antipsychotics and other psychotropics for people with dementia.

This goes deeper! In fact this is a blueprint to help unravel, develop and deliver alternatives to chemical restraints. A seismic culture shift. A transformation in care standards. An end to letting down vulnerable people!

What we have here is a potent yet underused proxy for quality and safety in dementia care globally.

Whether you are a concerned member of the public, a person living with dementia, or clinician, I hope this toolbox might assist you to weave your own priorities, perspectives and partnerships into implementing what’s right for your local community.

Let’s shake this tree and see what happens?

@KarimS3D

 

Dementia Friendly Schools ▷ A Primer To Anti-stigma Campaigns

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Pioneer Schools Intergenerational Project resource suite, evaluation and website launched.

A successful dementia friendly community will nurture a well informed critical mass of compassionate folk. The impact of this can ameliorate the plight of people with dementia and their carers in public services and in society as a whole. Unlike traditional ‘awareness’ campaigns, we could be on the cusp of establishing a generation largely intolerant of stigma!

I had previously described the prelude to the Pioneer Schools Dementia Intergenerational project and sited early examples of high fliers. ‘Intergenerational Exchange’ successfully developed over some 4 decades in the USA, Europe and Japan. Combined with the West Midlands regional online resources, both concepts converge to underpin this groundbreaking national venture.  With many schools fervent to evaluate their dementia curricula, we knew there would be diverse experiences, bespoke inputs and varied outputs. So we designed an evaluation to anchor and capture outcomes with the help of teachers and educationalists.

A year and 22 schools later we are proud to share some heart-warming results.

Headline Benefits:

  • increased awareness of dementia
  • reduced fear and stigma
  • pupils glimpsed what life as a carer can be like
  • pupils understood that living well with dementia was conceivable

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Widespread Impact:

Pupils:

  • Understood that dementia and its various causes is not an inevitable part of ageing
  • Understood the applications of assistive technologies
  • Gained confidence  meeting people with dementia and their carers
  • Understood the link between lifestyle (smoking, alcohol, diet, activity) and dementia
  • Developed transferrable skills (confidence, leadership and interpersonal skills) which impacted upon their engagement with the wider curriculum and boosted their personal development
  • Developed an altered perception and respect of older people more globally

Teachers:

Improved knowledge and a grasp of the relevance towards developing dementia friendly communities…

“I thought ‘What’s this got to do with me? It was a mistake on my part not to have seen [the relevance] from the start'”
 
 “as these children grow they’re going to be doctors, carers, working in shops, whatever it is, all of us will need to have that understanding of dementia and the community” (Co-ordinator, Gloucestershire)
 
“I shouldn’t have made a judgement […] I thought ‘They’re going to find it so boring, dementia'” (Lead Teacher, Newent Community School)
 

The School Community:

Where pupils and staff had direct family experience of dementia:

  • parents were able to have conversations about dementia with their children
  • pupils developing a greater understanding of the pressures facing parents/relatives in their caring roles

Beyond the School Community:

  • Participating carers saw their loved ones in a different light as they engaged in school activities
  • Increased community awareness of dementia through media reporting generated by schools

Depth of Impact:

  • Pupils were still able to rave about their projects months beyond completion
  • Some schools autonomously resume their projects during 2013/2014 and here is some fresh teachers’ feedback:

“2 of the pupils in my form have grandparents with dementia, it is amazing the lives they have at home, which we are unaware of”

“I’m not saying they were exactly the model class […], but behaviour and engagement was the best I’ve seen from my form in a long time”

“I’ve never gone through a whole lesson with my form […], I actually reached the last slide today. Amazing. More Please”

Schools adopted a kaleidoscope of approaches. This reflects the ingenuity and resourcefulness of our pioneers, demonstrating what is achievable in a relatively short timespan.

Equally, it hasn’t all been plain sailing. Hence:

10 Tips:

  • A lead teacher is required to run the project with protected time and adequate support
  • Teachers need to be able to access a suitable resource prior to delivering a dementia curriculum with confidence
  • Teachers should tailor their approach to their school’s unique characteristics
  • Time allocated should be ring fenced within the curriculum to avoid competition from other subjects and events
  • Lead teachers should consider forging links with key community resources e.g. Alzheimer’s Society, Dementia UK, etc
  • Themes for the intergenerational exchange should be as realistic as possible (see Evaluation examples)
  • Pupils should be given the opportunity to meet people with dementia and their carers wherever possible
  • Pupils and staff can be personally affected by issues raised and appropriate support should be planned in advance e.g. Dementia Friends
  • Pupils should be encouraged to take ownership of the dementia curriculum in generating their own ideas and initiatives
  • Before inviting people with dementia into school the suitability of the environment should be considered

Maintaining Momentum:

For the full ‘treasure trove’ (Evaluation, projects, resource suite and activities) go to www.dementia4school

I am hopeful the Ministerial support this has engendered combined with our results will inspire the next intake of schools.

To build sustainable dementia friendly communities for you and me we must stop graduating generations ashamed of the D word!

Think of the concept as a primer to all anti-stigma campaigns.

@KarimS3D

Aknowledgements: Although I chaired and sourced funding for this evaluation as regional clinical lead for dementia, Dementia Awareness and Intergenerational Exchange is a Pioneer Schools project supporting Dementia Friendly Communities and Awareness, part of the Prime Minister’s Challenge on Dementia. Chaired and made possible by Ms Angela Rippon OBE, funded by the Department of Health and developed in partnership with the Health and Social Care Partnership and the Alzheimer’s Society. The Association for Dementia Studies, University of Worcester designed and completed the evaluation. The real stars were our pioneer schools, teachers and pupils and participating people with dementia and their carers who were absolutely brilliant! My sincere gratitude to all involved for their talent, imagination, leadership, industry and determination to make things happen.

On ALCOVE, architecture and Alzheimer’s Disease

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When I was little I visited the UN General Assembly auditorium in New York City. This experience left its mark. Historical and beautifully-designed podia built to inspire, mark excellence, and foster communication and debate became my thing.

In March 2011 following an invitation by the Department of Health to chair, co-author and contribute as an executive board member to a programme of work focussing on Early Diagnosis in Dementia, it never occurred to me that two years later I’d be co-presenting our findings at such an  architectural landmark.

Image 1

The launch of the ALzheimer’s COoperative Valuation in Europe (ALCOVE) joint action, an EU clinical network incorporating 30 partners from 19 EU Member States, punctuated by an early morning press conference, Image 5

took place at the impressive Palais d’Iéna, built in 1937, now a protected historical monument and the HQ of the Economic, Social and Environmental Council in the heart of Paris.

A final three-day event in Paris preceded the launch. Executive board members planned deliberated and rehearsed the final hours, including the last minute recording of eleven ALCOVE videos. The pace was frantic.

On Thursday the 28th March 2013 Professor Dawn Brooker (Director of the Association for Dementia Studies) and I presented the UK findings alongside guest collaborator Professor Anders Wimo (Karolinska Institute, Sweden).

Image 3

Also in our delegation were Jenny La Fontaine & Jennifer Bray (our brilliant researchers, Association for Dementia Studies), Jerry Bird (National Dementia Strategy, Department of Health) and Peter Ashley, (person living with dementia, honorary Masters Degree, University of Worcester). An international audience included delegates from 24 countries. Speakers included

Image 4

·         Jean-Paul DELEVOYE, President of the French Economical, Social and Environmental Council

·         Jean-Luc HAROUSSEAU, President of the French National Authority for Health

·         Michael HÜBEL, Head of Programmes & Knowledge management, Health & Consumers DG, European Commission

·         Alistair BURNS, National Clinical Director for Dementia, United Kingdom

·         Michèle DELAUNAY, French Minister of the Elderly and the Autonomy

Image 2

Together with the final synthesis report (108 pages) and the full list of recommendations (10 pages) you can capture our main headlines.

Inspired by Egypt’s pyramids, our recommendations on Timely Diagnosis incorporated an incremental strategy to dementia healthcare planning across the EU and within member states.

An approach that will interest all those working in the field, tackling as they do some of the most challenging issues facing health and social care, including the ethics of early diagnosis.

We hope to present the findings and associated reports in the UK throughout this coming year.

ALCOVE has enabled us an unprecedented glimpse of the status of dementia services across Europe. To me the Paris launch combined excellence in design with new advances in science. A fitting rite of passage!

As the globe wakes up to the impact of dementia, it is my belief that this launch will prove as historical as the Palais d’Iéna.

@KarimS3D

Who’s keeping an eye on ‘brains at risk’? The FAQs

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What 3 top priorities can dementia services in developed countries focus on?

  • Prevention
  • Early interventions
  • Researching a cure

Has the clinical community caught on to this?

The public may want earlier interventions, clinicians are still divided. For many, this remains controversial.

Meanwhile, the ‘gold-standard’ American diagnostic criteria have reclassified Alzheimer’s disease (28 years since their first issue) into 3 stages:

(1) Pre-Clinical Dementia: brain changes predate symptoms

(2) Mild Cognitive Impairment (MCI): early enough to be noticed but too mild to be named dementia. MCI is a state not a disease. Some ‘convert’ to

(3) Alzheimer’s dementia

NHS dementia services only address stage (3)!

Why is prevention and earlier intervention important? 

  • Identifying ‘brains at risk’ in middle age may yield strategies to forestall conversion of MCI to Alzheimer’s disease, and
  • Early identification = advance planning = choice = autonomy + savings = quality care.

So are we there yet?

As we await disease modifying treatments, we are refining our grasp of

  • Biomarkers: various clinical and lab tests to predict MCI/Alzheimer’s dementia, like scans and lumbar punctures.
  • Risk Factors: and a range of lifestyle, social and clinical Interventions to manage brains at risk.

What about all the bad press?

The potentially stigmatising effect of “pre-dementia” can be offset by the empowerment of an early diagnosis and disease control. It is our focus on later stages which may be perpetuating negative perceptions.

Surely telling someone they have MCI causes unnecessary anxiety and depression?

Not everyone wants to know. However, the opposite can also be true. Disclosure, to many who suspect something is amiss can relieve anxiety and extend choice.

What evidence is there that this works?

Some evidence supporting the benefits of controlling high cholesterol, high blood pressure and various lifestyle modifications like eating healthily, taking exercise, smoking cessation and avoiding hazardous alcohol consumption in middle age. This approach successfully reduced the prevalence of heart disease in the UK. We know that intellectual stimulation, the right diet, good control of diabetes and depression may reduce the incidence of dementia. Protective factors include active lifestyles, social connectedness and mental resilience.

Some innovations like the productive ward were piloted without ‘evidence’, and it is through refinement of prototype that made them so successful. Lack of ‘evidence’ does not mean evidence of absence of an effect.

Meanwhile we await 3 European Alzheimer’s dementia prevention trials underway in Finland, Holland and France to announce results in the near future.

How much is needed to invest in identifying and targeting brains at risk?

Many prevention platforms already exist within the NHS e.g. Health Checks, primary care liaison workers and a sub-type of cognitive behavioural therapy (CBTplus), developed within the ‘Take Heart’ service, probably the only MCI service in England.

Might this save money?

Considerable savings projected though not instantly.

Estimates based on unpublished health-economics assumptions suggest £230m savings in 10 years (England & Wales) and £3.8b by 2033 (a fifth current spend on Dementia).

There’d be no wisdom in ignoring this. Whichever way you look, dementia is on the increase (longer lives, worse lifestyles & pressure to increase woefully low detection rates).

Where is this all going?

Digital apps and telehealth will complement ‘human’ services.

MCI-friendly and dementia-friendly zones…including your local gym, supermarket, school, pharmacy.

Proactive and portable expertise closer to home, promoting wellbeing and optimal ageing.

Alzheimer’s disease will stay ‘invisible’ for decades before we see it. Measuring and protecting mental capital should be an option open to you and me!

It’s all about choice!

@KarimS3D

Pioneer school leads the way in transforming dementia public awareness

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People with dementia and their carers face a significant lack of understanding cutting right across public services and society.

Two thirds of people with dementia in the UK never receive a specialist diagnosis. That is over half a million tax payers, together with their carers, unable to access the help they need for a terminal illness.

Those that do receive a diagnosis can experience social exclusion mostly due to stigma, ignorance and lack of awareness.

Two misconceptions fuel this:

  1. Dementia is a normal part of ageing
  2. Nothing can be done about it

Some three years ago, my team at NHS West Midlands decided to tackle this by producing a free online resource (see nhslocal) to raise awareness of dementia in secondary school. After 60 minutes pupils should be able to understand:

  1. what Dementia means
  2. the challenges faced by carers
  3. innovative assistive technologies and their applications

Younger people are more keen to know about dementia than older people are. The school curriculum  supports learning about relationships and loss, illness and wellbeing, caring and compassion. Find out more on why raising dementia awareness in school is so valuable.

Because Dementia is an exemplar condition to introduce to schools, our model is now incorporated into the Prime Minister’s Challenge on Dementia under Angela Rippon‘s Leadership. Over 20 pioneer schools across England are rolling this out as one of many ways to start a conversation about dementia in primary and secondary schools.

I was privileged to attend the final lesson on Dementia at Swanshurst School, Birmingham (thanks to BBC News for allowing me to share their footage on my blog).

14 year olds were so well briefed, they were inquiring about dementia subtypes e.g. Lewy Body Disease. They boasted an awareness of the latest Design Council award winning assistive technologies. Their questions suggested a good grasp of the link between wellbeing, lifestyle, heart and brain .

Mission accomplished!

Undoubtedly a successful collaboration, and all credit to the teachers involved who provided dynamic leadership and unwavering belief in the vision, sufficient to make it work.

Our pioneer schools can support a case for a brief focused intervention that sows the seeds of a sustainable dementia friendly society.

Small actions can have large consequences.

Let’s stop graduating any more generations ashamed of the D word!

@KarimS3D

We slashed their antipsychotics and this happened…

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A care home intervention to reduce the ‘chemical cosh’ boosts staff satisfaction, improves quality of life and saves money. Surely not?

There are 800,000 people with dementia in the UK, a third live in care homes. Dementia can generate behaviours such as agitation, aggression, wandering, shouting, repeated questioning, sleep disturbances, depression and psychosis which can challenge carers and residents.

Such behaviours are all too often the trigger for prescribing antipsychotic drugs, originally designed to treat schizophrenia. Dubbed ‘the chemical cosh’, they can reduce aggression, but also increase the risk of stroke, falls and death.

It is estimated that 2/3 current UK prescriptions of antipsychotics for people with dementia are inappropriate!

1,000 people with dementia on an antipsychotic x 12 weeks = 10 deaths + 18 cerebrovascular events + 58–94 gait disturbance

With Department of Health funds we set up a project to change this. We targeted care homes (where antipsychotics prescribing is prevalent) across Coventry and Warwickshire. Each care home received a two-session nurse-based training course on managing behaviour that challenges. Our well attended training package, also included a video depicting examples (good and bad) dementia care methods.

We identified residents who were inappropriately placed on antipsychotics, and with supervision plus input from a pharmacist, stopped the prescriptions gradually. By eight weeks, 75% were successfully withdrawn off antipsychotics, with no recurrence in challenging behaviour. Analysis shows that with greater primary care involvement, even more cases for withdrawal could have been identified.

Staff training, which involved all levels, junior and senior, was well received.

At 13%, antipsychotics prescribing rates in our area were lower than the 20% national average. Moreover, we demonstrated that our ‘simple’ intervention could reduce prescribing rates broadly within the Department of Health’s aspiration.

In fact, new data suggests that this is a constant trend in our locality and in 5 years Coventry clinicians slashed new prescriptions of antipsychotics for people with dementia from 11% to 1.5%

We estimate that using the same intervention across Coventry and Warwickshire would

  1. get 285 people with dementia off antipsychotics in a year
  2. prevent 2-3 strokes and 2-3 deaths
  3. be cost-effective.

We estimated that this preventative approach would generate in our locality £80,000 direct savings and £240,000 quality of life improvements benefits per annum.

Perhaps Coventry & Warwickshire is a step closer to becoming a dementia-friendly locality

Who said you cannot deliver much better healthcare for much less.

@KarimS3D

 

References

Advancing European healthcare policies for people living with dementia and their carers

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As a member of ALCOVE’s executive board, it gives me great pleasure to announce the arrival of a new and far-reaching joint action project, co-financed by the European Commission.

The last 50 years in Europe have seen an increase in life expectancy, as well as a corresponding surge in diseases linked to ageing, particularly dementia. Given the high prevalence, cost, and profound impact on society of Alzheimer’s disease and other dementias, the European Union has accorded dementia a high public health priority.

ALCOVE brings together 30 partners from 19 EU Member States to improve our knowledge and information exchange on dementia and its consequences, and to preserve health, quality of life, autonomy, and dignity of people living with dementia and their carers in EU member states.

ALCOVE’s main objectives are to:

  • establish a European network of healthcare institutions
  • inform and advise policymakers, healthcare professionals, caregivers, and citizens through convergent recommendations
  • reduce the risks associated with psychotropic drug use, particularly antipsychotics.

ALCOVE aims to improve data on dementia prevalence; access to early dementia diagnosis; care for those living with dementia, especially those with behavioural and psychological symptoms; and the rights of people with dementia, particularly with respect to advance declarations of will. A Toolkit to reduce Antipsychotics will also form part of the project.

In conducting this work, ALCOVE draws on previous European studies, and existing networks.

England’s task includes making recommendations to improve early diagnosis, very topical. don’t you think?

I look forward to collaborating with Professor Dawn Brooker and her team (Association for Dementia Studies, Worcester University) to deliver this timely piece of work.

For more about progress visit http://www.alcove-project.eu/

ALCOVE will report its findings in Paris in the Spring of 2013 so watch this space.

@KarimS3D