Dementia Friendly Schools ▷ A Primer To Anti-stigma Campaigns

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:


  • 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


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.


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.

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

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 Checksprimary 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!


We slashed their antipsychotics and this happened…

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.




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

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

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