The story of Mr Alzheimer’s…

Abstract

Salford INSPIRE

Salford INSPIRE is a project run by Age UK Salford (located in Greater Manchester) and funded through the Neighbourhoods and Dementia Study, led by The University of Manchester and funded by the Economic and Social Research Council and the National Institute for Health Research. Salford INSPIRE was launched in April 2016 with the recruitment of Dr Joy Watson as co-ordinator and Emma Smith as a Development Worker. Joy was the first person with a diagnosis of dementia to be employed by an Age UK Charity. We were tasked with raising awareness of dementia in Salford. With such a broad remit, we were able to let our creativity flow, and over the past three years, the project has delivered a range of awareness raising activities and events. In this article, we showcase one of our awareness-raising activities: the Mr Alzheimer’s School Campaign.

During 2016, Joy designed ‘Mr Alzheimer’s’ as a soft toy to help her explain to her own grandchildren how her dementia makes her feel – he has a happy side and a sad side. We then used Mr Alzheimer’s on ‘pop-up’ stalls at the local supermarkets and shopping centre as a way of engaging with families about dementia. This approach had some successes, but dementia is not an easy topic for people to engage with in these environments.

We therefore needed a different approach and given our focus had shifted towards raising dementia awareness in children, we decided to develop a dementia awareness-raising school campaign. At this time, the main dementia awareness within schools was a Dementia Friends initiative run by the Alzheimer’s Society (UK). Whilst we recognised the work of the Alzheimer’s Society, we could see the potential for Mr Alzheimer’s to engage and interact with children in a different way. Thus, the main aim of the Mr Alzheimer’s Campaign was to start conversations about dementia and create a safe space for children to talk, be it in the school, at home or in the wider community. In order to ensure that the Mr Alzheimer’s School campaign would be meaningful to children, we needed to collaborate with a local school, working alongside schoolchildren to ‘co-design’ and ‘co-produce’ the campaign as well as maximising its impact.

Case Study: St John’s Church of England Primary School (Salford, UK)

In late 2016, we approached St John’s Church of England Primary School (for children aged 4–11 years old) to be a pilot for our School Campaign. In March 2017, Mr Alzheimer’s was introduced to the School Council with the simple brief that students would take it in turns to take him home for one or two nights along with a story about dementia. The School Council comprised a representative group of students who were elected by their peers to represent their views and to raise issues with the Senior Managers and Governors of the school (Figure 1).

Figure 1.

St John’s Church of England Primary School, Salford (UK).

The School Council members were enthusiastic from the very first meeting and immediately decided that he was much too big for older children to take an interest in, that he needed his own bag, there should be more information about dementia and a diary should be provided so that students could record their adventures with Mr Alzheimer’s.

We took these comments on board and made a Mr Alzheimer’s bag. It included a smaller version of the Mr Alzheimer’s teddy, two stories about dementia – The Forgetful Elephant (Mackay, 2012) and Grandad’s Hat (Elliot, 2015) and some simple information about dementia.

The students renamed the School Council as ‘The Friends of Mr Alzheimer’s’ and subsequently delivered two school assemblies to share the project with their fellow students. The first assembly introduced students to the School Campaign and the Mr Alzheimer’s bag, whilst the second assembly, held on World Alzheimer’s Day, involved the Friends acting out ‘Grandad’s Hat’ (see https://kids.alzheimersresearchuk.org/young-kids/).

At the very first assembly, the School Council asked Key Stage 2 students (aged 8–11 years old) how many had been affected by Dementia; we were all surprised how many hands went up in to the air from students and teachers. The Schools’ Learning Mentor reported that she had over 10 students visiting her after the assembly to talk about a family member with dementia, with other illnesses or grandparents who had passed away.

As well as making our children more aware about Dementia and Alzheimer’s, they are sometimes finding out about their own family members with the condition. This promotes a family conversation and it’s good to talk about it. Some children feel sad about family members having dementia and it’s a great way to link them up and make it comfortable to talk about it. I find it encourages empathy and caring about others which is part of our ethos at St John’s. (Learning Mentor, St John’s Church of England Primary School, Salford UK)

The Friends of Mr Alzheimer’s have been instrumental in shaping the School Campaign and driving it forward. Going forward, Key Stage 1 (aged 5–7 years) will be introduced to the project with a repeat of the fabulous play from the Friends.

Unexpected outcomes

In St John’s school, the role of Mr Alzheimer’s has developed beyond raising awareness and starting conversations about dementia. Working alongside the Learning Mentor, Mr Alzheimer’s has also supported children with Special Education Needs and children with behaviour difficulties, and has thus been able to provide additional support to students from the school.

Mr Alzheimer currently has a waiting list to be taken home. There have been situations whereby some children with Special Educational Needs who struggle emotionally, have asked if they can take him home. They find it a comfort to have Mr Alzheimer’s and sometimes it just helps them through their day knowing they have Mr Alzheimer’s for the weekend. And they love reading the books at home which is an added bonus. Mr Alzheimer’s has also been able to help children with behaviour difficulties. They are offered a visit home with him and it can keep them on track knowing they may have Mr Alzheimer’s for the weekend. Children ask for bubble time to share what has happened and I’ve had so many lovely conversations after he has visited their homes, it sounds as though he is really is treated like a special visitor and the whole family get involved. (Learning Mentor, St John’s Church of England Primary School, Salford UK)

Case Study: St Andrew’s Church of England Primary School, Salford, UK

St Andrew’s CE Primary School was eager to become our second pilot school after an initial meeting during Dementia Action Week in 2017. A Teaching Assistant at the school was instrumental in developing this project (Figure 2).

Figure 2.

Mr Alzheimer’s badge.

The Mr A (Mr Alzheimer’s’) project has given the children in my school important skills to make sense of the world around them. Children are naturally curious and the project has enabled the pupils to comfortably ask questions, research new areas and share their new knowledge with staff, peers and their families. Many of the pupils could identify with dementia and have come across this in their families or their local community. The children were able to easily share the stories in the pack and discuss the illness with their families and friends. They also adored taking Mr A on his various outings and recording this using pictures, photos and writing. We have many pupils waiting for their turn to take Mr A on his next exciting adventure! (Teaching Assistant, St Andrews Church of England Primary School, Salford UK)

As School Councils only sit for one year, the Mr A Team was set up in October 2018 to enable the previous year’s School Council to continue working on this project. The Mr A Team members all received a special Mr Alzheimer’s badge in recognition of their new roles and project input.

The children look forward to the visit from Emma and Joy. They readily give up their lunch time and are eager, excited and pleased to be part of a project that is considered important in their society…The children who are on our ‘Mr A Team’ are keen to keep spreading the word and want to continue to support the project. They have plans of taking the project into other schools, community areas and making more people aware. They also want to hold local activities and raise funds, to promote positive awareness of the disease. (Teaching Assistant, St Andrews Church of England Primary School, Salford UK)

St Andrew’s was an important school for us to work with. It’s in the heart of the Muslim community and has a massively diverse student population. Over the last few years, projects throughout Salford have attempted to work with the British Black Asian and Minority Ethnic (BAME) groups community around dementia, which has proved to be difficult. We believe that a young person-led approach offers an innovative way to achieve this connection successfully.

Lessons learnt

Schools are a great way to connect with students, staff and families about dementia, but this does not happen quickly or without perseverance. The Mr Alzheimer’s School Campaign took 12 months from the original idea, through to developing and then delivering a co-produced Mr Alzheimer’s bag in to the first two pilot schools. As the funding for this project comes to an end, Salford INSPIRE is planning to complete the Mr Alzheimer’s pack by adding the introduction story cards shown in Figure 3.

Figure 3.

Introduction story cards.

Alongside these story cards will be some puzzles, a sketch up example of what these may look like is shown in Figure 4.

Figure 4.

Example of a sketch up.

The final addition is a book we recently launched, which includes the story: ‘Mr Alzheimer’s Goes to Toyland!’ It tells the story of Mr Alzheimer’s buying a birthday present for his granddaughter Chloe, the challenges he faces and how overcomes them! The Friends of Mr Alzheimer’s were the first to listen to this story, below are some of their comments:

It gives people an idea of what it might be like to have dementia.

It was a good story.

At the toy shop it shows how people need to be a bit more patient.

The story includes illustrations from Paul Louden; at the back of the book, there is information about dementia. Copies of all of these additions will be added to the pilot bags in the three schools. This work will form the start of the next phase of the School Campaign.

Next steps

Age UK Salford is currently fundraising to roll out the Mr Alzheimer’s project in to all primary schools and libraries across Salford. Each school will be provided with a Mr Alzheimer’s resource pack plus a training session on using the pack to achieve the most positive impact. To achieve this, we supply School Campaign bags which include the following:

Mr Alzheimer’s teddy

Mr Alzheimer’s introduction post cards for family and friends

Puzzles and games

‘Mr Alzheimer’s buys a Space Hopper!’ story and information about dementia

Mr Alzheimer’s diary

Mr Alzheimer’s Bag

Salford Libraries have agreed to hold regular Mr Alzheimer’s reading mornings along with their own books. We will provide posters, puzzles and a Mr Alzheimer’s teddy to use at these sessions. The resource packs will be promoted through a project launch, direct marketing via leaflets from the School Lending Service (run by Salford Community Leisure), Social media sites, for example, Facebook, newsletters, website and via local newspapers.

The making of Mr Alzheimer’s

The Mr Alzheimer’s soft toys have been made by a small group of volunteers, known as ‘Stitchers and Stuffers’. Salford INSPIRE plans to support and develop a larger group of volunteers, with an interest in sewing or stuffing, to come together to produce the soft toys in Salford. The aim is to recruit people living with dementia, carers of people living with dementia, ex-carers or anyone else who loves to sew.

The Stitchers and Stuffers group will meet monthly in a local centre that offers a comfortable, light, spacious room with refreshments. Finding a venue with an existing luncheon club (or additional social activities) will also be a priority as attending the group will provide an opportunity to have fun and make new friends whilst producing quality resources to benefit the community as a whole.

The Stitchers and Stuffers model has been incredibly successful in other areas. ‘Made in Haslingden’ is a group based in Lancashire (UK) and two years into their own project, have recruited 40 keen volunteers who design, sew and produce items to capture the life stories of local people living with dementia. The group includes those living with dementia and carers.

Footnotes

Acknowledgements

This work forms part of the ESRC/NIHR Neighbourhoods and Dementia mixed methods study (). This paper is taken from work programme 1.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The support of the Economic and Social Research Council (ESRC) and National Institute for Health Research (NIHR) is gratefully acknowledged (Grant award: ES/L001772/1).

Joy Watson became a campaigner around dementia when she was diagnosed with Alzheimer’s at the age of 55. Joy has worked to raise awareness around dementia at a local, regional and national level over the past five years and received an honorary Doctorate from the University of Salford in 2016 in recognition of this work. Joy is an ambassador for the Alzheimer’s Society and Associate at the University as well as the Facilitator of Salford INSPIRE.

Emma Smith is a development worker on the Salford INSPIRE project. Emma has led on a range of dementia projects, events and campaigns over the past six years. Alongside Salford INSPIRE, Emma is the Project Lead for delivering a communication course for family carers of people with Dementia across Greater Manchester (Empowered Conversations). Emma shares Joy’s passion to raise awareness around dementia and challenge the stigma through as many creative, fun and inter-generational ways as possible.

References

Elliot

(2015). Grandad’s hat. London, England: Alzheimer’s Research UK.

Mackay

(2012). The forgetful elephant. Devon, England: Greenwave Editions.