VIDEO ► Trendsetting Young Dementia Ambassadors

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!


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!