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:

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.

Pioneer school leads the way in transforming dementia public awareness

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