Unlocking Dementia Raising awareness of dementia in Doncaster Lucy Robertshaw, [email protected]

Introduction darts (Doncaster Community Arts) is a participatory arts company that has been working in Doncaster for over 25 years. We are often approached by organisations who want us to 'translate' complex issues to a local audience through the use of art forms such as film, drama, music, photography or visual arts. By employing creative techniques we allow people to tell us their stories and get them to explain how things could be easier for them if people understood more about their health condition or situation. Doncaster Council and Doncaster

CCG commissioned darts to create a brand new performance that would raise awareness of dementia in Doncaster. The brief was to design and deliver 28 interactive shows across the borough to a range of businesses, schools and community groups. The performance would have to be flexible enough to suit a range of audiences, from school children to members of the public and from employees to care home workers. The aim was to raise awareness of dementia and help contribute to making Doncaster more Dementia Friendly.

‘Fantastic insight into the lives of people with dementia.’

The Process In order to make the piece as real as possible and relevant to Doncaster audiences we knew it was vital to talk to as many people as possible about living with dementia in Doncaster. Our artists talked to adults with dementia and their family and friends at local support groups and Memory Cafes and held creative consultation sessions with professionals, which included social workers, fire and rescue, police, residential care home staff, doctors, Frenchgate (shopping centre) security team and British Transport Police. Our rehearsal room ended up covered with extracts from people's stories, direct quotes and themes that had emerged from our conversations. From this we used improvisation to create new characters that represented the key challenges that people with dementia in Doncaster had told us about, and designed ways of getting the audience to think about how they could support those with dementia to be part of the community.

The finished performance was based on real people's experiences of living in Doncaster with dementia, as well as looking at the impact it can have on their family members, friends, work colleagues and community. Our varied scenes showed a range of experiences including: • how young people react to a grandparent living with dementia in Doncaster • how technology can help or hinder communication • early onset dementia • the importance of keeping normal relationships with everyone in the family • the stigma around diagnosing and being diagnosed with dementia After each scene a facilitator encouraged the audience to reflect on what they had seen and think about how they could support someone with dementia, either in the workplace or in the community.

‘Great performance, very balanced! Humour and with strong messages.’

The Tour ‘Recognisable scenarios presented from daily life.’ Audience member

• Sir Thomas Wharton School and Doncaster College

darts are known across Doncaster for their high quality, innovative work which encouraged venues to want to book us. We created eye catching posters and postcards, as well as a short film trailer for the piece, which we sent in advance to venues to whet people's appetites.

• Libraries in Bentley, Sprotborough, Scawthorpe and Tickhill

darts booked the tour for Unlocking Dementia and made sure that we reached a range of audiences across Doncaster which included: • Small, medium and large businesses including Tunstall Healthcare (UK) Ltd, Doncaster Culture and Leisure Trust, South Yorkshire Housing Association and Doncaster CVS

• Community groups, including Sue Ryder drop ins and Ruddle Centre • Doncaster Council run care homes in Hexthorpe and Conisbrough • Askern Town Council • Events such as Carers Rights Day and Doncaster Dementia Action Alliance Celebration Day In total we performed 29 shows at 21 different venues across the borough to a total of 678 people.

The response ‘The portrayal of dementia changed my opinion of it, in a positive way.’ Audience member

of the shaking book-case and more sturdy emotional structure was a particular light bulb moment for me.’

The fascinating thing was how each audience responded in a different way to the same show. This helped us to continue to develop our understanding of the challenges for people living in Doncaster with dementia and the things people wanted so they could support people with sensitivity. Some people came because they knew nothing about dementia and wanted to provide a better service to their customers who may have the condition. Others had a recently diagnosed friend or family member and wanted to know more. Some came out of curiosity, others had had the show recommended by friends and many were employees encouraged by their work to attend. Askern Town Council booked a show as they are keen to make Askern Dementia Friendly.

Nicola Ambler, Internal Account Manager at Tunstall Healthcare (UK) Ltd wrote: ‘Dementia can affect anybody at any age, and is no longer the 'old persons disease' we were possibly lead to believe as a child. By being dementia aware, not only does this help the person affected by the illness, but also gives the people surrounding this person a better understanding of why they are doing certain things that they wouldn't have done necessarily, or are out of character.

For whatever reason they came the overall response to the show was overwhelmingly positive. Michael Hart, chief executive of Doncaster Culture and Leisure Trust said: ‘Staff gave great feedback and it was a real insight to some of the challenges people with dementia and their families face on a daily basis.’ Freda Lightfoot of Changing Lives said: ‘I was moved and impressed in equal measure. Performances like this get the message over so very clearly and the information sessions I have been involved in recently have definitely made a difference to my awareness of the difficulties encountered by people dealing with dementia. Your explanation

darts demonstrated this in a fantastic way by a series of short plays, covering different scenarios including real cases of how a person and their families can be affected by different levels of dementia, which had real impact, and what support is available. Coming from a Health & Social Care background and having family members suffer with both dementia and Alzheimer's, I found this not only interesting, but quite emotional too, and highly recommend the 'Unlocking Dementia' play to everyone.’ Audience member Jamie Rosser wrote: 'Tickhill is a close community, everyone seems to know, care and respect each other. As we entered the library the staff said “You two are not on my list, but you are welcome to come in. We have some spare seats.” She must have known all thirty-odd people attending by sight and name. The audience was mainly the older generation, with some younger people throughout ranging from people who care for others, shop and service staff to

people interested and keen to learn. The first section was about being bombarded with fast, simple ID questions with no time to think. This raised many comments and questions amongst the audience. “I never thought of it that way” “now you have said that I will do things a different way” “I must slow down while asking and listening” amongst many others. The audience were then in discussion about changing the way they ask, talking about learning to ask short direct questions, waiting for an answer and how to notice if someone is struggling.

Every part was openly discussed with almost every audience member having a say or raising a point. After the performance tea and biscuits were served, nobody left for almost a hour, the room was full of conversion. “That lady did a brilliant job, with no props or clothing change she took me to believe I was in the same room as the people being played”. “The bookcase demonstration was perfect, a very easy way to make others understand.” People were talking to others about what they have learned, how to implement it and how to explain to others, and some places to visit.’

‘Interesting, engaging, thoughtprovoking, educational - changed our point of view.’

Why was Unlocking Dementia so successful? darts always evaluate our projects in order to identify challenges and issues, so that we can build on these for future work. The key things we feel made Unlocking Dementia successful include: Using real people's stories and quotes 'Thought provoking - as a carer of someone with dementia the short scenes were very accurate.’ By listening to a range of Doncaster residents living with dementia and their friends and family, plus a large amount of professionals we were able to distil the key issues into short scenes. We used direct quotes and real experiences specific to Doncaster so that people could immediately relate to what they were seeing. The flexibility of the piece to respond to different audiences 'Loved it that it was interactive, great acting, great facilitation, some powerful messages came across.' We designed a piece that was performed with equal success to an audience of Health and Social Care students, to community members at Edlington Library and from school children to Tunstall Healthcare employees. The interactive element 'Very powerful and moving. More effective in spreading message regarding dementia than other training.' Within 5 minutes of the show starting, the audience are being

directly asked for their ideas and to contribute to the discussion. In this way they are being challenged to think about how they could change their own behaviour at work or in the community to support others with dementia. Employees valued the chance to have time with their colleagues to think about their own work environment and how it could be improved. The structure of the interactive show 'Interesting and novel way of presenting a very difficult subject.' As the show was made up of individual scenes, we were able to discuss in advance which scenes may be more pertinent to the group we were working with and may want to spend more time on. It also meant that people could engage even for a short while, for example at the care home. This wasn't ideal but did mean that staff who wouldn't have been able to attend could come, see a section, contribute and then go back to work. The longer lasting impact 'After the performance nobody left for almost an hour, the room was full of conversation.' We have found that engaging in the hour long interactive show was only a small part of people's engagement with the subject. It was a prompt to find out more e.g. 'how can I become a Dementia Friend?', a chance to ask for support such as a teenager asking us about concerns she had about her

father and his condition, a time to talk to others about how they manage caring for someone with dementia, or as a starting point for a new module on dementia about to be delivered to the Health and Care students. At the end of the show, each audience member received a postcard with key messages around dementia to take away to remind them. We had some excellent examples of businesses who had thought carefully of how to encourage their staff to attend, had built up excitement in their staff in the run up to the show and who captured responses and impact of the piece. One such example was Tunstall Healthcare who wrote blogs in advance of the show, tweeted, shared the film trailer, thought in advance as to how to cover production line staff so they could attend as well and blogged after seeing the show. They continue to deliver Dementia Friends training and feel this will encourage more people to attend. The ability to respond to new developments in Doncaster By continuing to attend the Doncaster Dementia Action Alliance meetings we have been able to involve new pieces of information and services into the performance. For example in the interactive element of the show we have talked about the new Herbert Protocol, Relate counselling and Tunstall assistive technologies. We also talked about how local companies are becoming more Dementia Friendly such as First Bus, British Transport Police and local taxi drivers.

The chance to tell people about other Doncaster services available We are not dementia specialists and we made this clear at the beginning of every show. However this really helped us as people said they found it easier to ask us questions, even if they felt they were silly. This neutral role we held meant that we were able to listen to people's situations and then at the end, talk to them about current services in Doncaster that could help. We encouraged people to look through and take a range of leaflets that could assist them. This included promoting the following services; Sue Ryder Peer Support and Befriending Service, Memory Cafes run by Alzheimer’s Society, Doncaster Carers Service, Relate Counselling around dementia, DementiaCarer.Net, Doncaster Carers Centre and Avalon group (Carers Support Toolbox). People were also very keen to take the ‘Doncaster Directory of Dementia Services’ and ‘How to help people with dementia: A guide for customer facing staff’ (Alzheimer's Society). People also took leaflets on how to become a Dementia Friend and we encouraged organisations to sign up to Doncaster Dementia Action Alliance. Individuals with family members with dementia were encouraged to come to our building, The Point, to see our free exhibitions, take part in workshops and have a drink in our cafe.

The challenges We made clear to anyone booking that Unlocking Dementia was not suitable for those with dementia. The performance is fast paced, the subject matter is very personal and the show is designed for those who want to know more, not those that are living with the condition. Although we had great responses

from the business audiences, these were often much smaller than we imagined they would be. Businesses need to not just encourage their staff to attend, but actively organise their shifts so that their work is covered and they can attend. There were far fewer front line staff than we expected and more managers, as they have more flexibility/autonomy over attending events like these.

‘The bookcase was a very helpful way of explaining how the brain works and deteriorates.’

What next? 'The best way to get dementia across to people who don't have it in their lives.’ Audience member Without funding we are unable to continue Unlocking Dementia and are keen to work alongside Doncaster Council and Doncaster CCG to see if another tour could be commissioned. Demand is high for the show and we have a current waiting list of interested organisations including Jordan's Solicitors, Changing Lives, Positive Steps, Alzheimer's Society, Central Library and Doncaster College, as well as many others who continue to ring in. Unlocking Dementia directly contributes to the following ‘I’ statements mentioned in Doncaster's Dementia Strategy: • 'I live in an enabling and supportive environment where I feel valued and understood.' • 'I have a sense of belonging and of being a valued part of family, community and civic life.’ The next tour could take the same approach of a mixed tour of businesses, schools and community settings or perhaps look specifically at a schools only tour. Because of the structure of the piece we would be able to add scenes to this new tour to reflect any new themes/developments around dementia in Doncaster. We generated a huge amount of written responses from audience members across the borough who responded to the question 'What is needed, if anything, in the community for people with dementia and their

carers to live well?'. darts have allocated these responses under themes that emerged and this is attached in Appendix A. This information will be shared with everyone at Doncaster Dementia Action Alliance, as it should be useful for future planning. We also include in Appendix B our 'before' and 'after' statements, which show the way that people's perceptions of dementia are shifted over just one hour. In Appendix C are the responses from students at Sir Thomas Wharton Community College after darts ran a series of workshops designed to identify how they would encourage their peers to find out more about dementia. darts are keen to explore further how creative activity can raise people's awareness of dementia and shift perception so that Doncaster can become Dementia Friendly. 'It isn't Alzheimer’s that takes away a person's dignity, it's other people's reactions to it.' Joanne Koening Coste

‘Highly emotive but informative and empowering to understand issues relating to the 'silent illness'.’

Appendix A During the show we asked audience members to write down their response to the following question: ‘What is needed, if anything, in the community for people with dementia and their carers to live well?’. We collated everyone’s responses under themes that started to emerge. Awareness, Empathy, Education, Patience and Understanding • Support and raise awareness by education starting in schools, scouts, guides etc. • More people understanding dementia, dementia friendly shops, transport etc. buses/taxis, churches • More awareness, more support and understanding - dancing, tea dances, more accessible venues, funding! • Much more information to be made available for professionals/workers in the community i.e. police, gp’s, shopkeepers • More support and understanding they need in care homes etc. with no changes as people with dementia don't understand change and can get very upset • To be able to spot early signs of dementia • Support, knowledge of dementia by the carers or support staff • To keep people with dementia as normal as possible • More awareness for local businesses • For Gp’s to learn more about Dementia and how to help • More awareness from doctors • Understanding - anyone who has contact with the public should have dementia friends training as part of all 'customer service' training • More understanding about Dementia by posters in shopping areas and talks to help understand about Dementia in the public areas

• More public awareness in general! I don't think you can tell someone has dementia just by looking at them • More of what's taken place today (Unlocking Dementia show) - work places/schools etc. • More people understanding. More advertising to make people aware • People around them to understand that they aren't dehumanised, they just don't remember how to do some day to day things • Support and understanding that everyone could have dementia • More understanding and awareness. More patience. Accessibility of appropriate services • People to be more educated about it and be more understanding • They need people to understand and to appreciate the people; they are still people • More knowledge about dementia, in shops, travel etc. so they are not left feeling like a burden • More understanding from people who have dealings with the general public. More training - Dementia Friends • More information on dementia/ looking for the signs and how to deal with the outcome • Retail training to deal with situations which could arise with people with dementia • Education and awareness training markets, shops • Awareness, understanding and compassion. Tolerance • Understanding and help

• Training for all people that may come in contact with someone with Dementia on a daily basis • Empathy, understanding and awareness of dementia and how people can live well with dementia in community • Recognise the loneliness and the isolation it brings with it • All public service staff to be made more aware of Dementia - taught in schools and colleges. Highlight that the condition can affect younger people • Greater understanding of Dementia by the general public so that they can be helpful more. People to realise some of the signs of Dementia • For people to know who has Dementia so if anything happens people know and people need to be taught what it is and how to handle it • Every Dementia sufferer should have people around them so that they feel a sense of security. Also they should have days out for them and their carers to build trust • More general awareness of the possible symptoms • More understanding of Dementia removing the fear that we all have of Dementia - that may be me one day! • Wider recognition. Advertising. Publicity of what to expect of people with Dementia i.e. typical behaviour • More people in the community who are aware of Dementia and who are able to give support • Overall awareness and understanding - more people need to become more involved • More training so that more people understand and know what to look for to identify someone who needs

•

•

•

• •

•

•

• • •

•

•

• • •

•

help A better understanding just because someone got dementia talk to them like they are the same person they were before they got dementia More awareness for people without understanding. Easier, available support for dementia sufferers, families, carers and friends More care in the community is needed. And more understanding of dementia More help and understanding for dementia sufferers Knowledge of how to treat a person with dementia i.e. tell them when they are wrong or agree with them. More publicity of support networks All aspects of the community (Daily life) should be dementia aware to enable sufferers to be given the time to deal with their daily life. This seems to be the biggest difficulty More awareness to companies, schools, colleges, shops. Understanding of dementia Support and awareness. More of this from darts to many audiences Sufficient time and understanding from family and carers Understanding of dementia? Educating people to realise that HELP and assistance is out there Support, to identify, more training to make staff aware, help and medication Awareness - age, help etc. Helpful tips on how to assist/benefit people you know with dementia. Signs to recognise More awareness and support Support groups. Leaflets/awareness More awareness. More understanding, for families too. More support Wider understanding that people are still able to be an active part of their

•

•

•

• •

• •

community and the support for that to happen More understanding, more sensitivity, through more widespread education on the topic People, environments, organisations that have or are dementia friendly knowledge or understanding Everyone in the community needs more awareness of dementia and the people who have it - willingness to take more time. Awareness (using press/media) Lots of empathetic people who understand and make allowances, have tolerance and patience and time Slow down and take notice Everyone thinks about the person they are dealing with/talking to as an individual and their individual needs

Support for carers and respite • Volunteers to sit with dementia patients while carers have time off • A break from the people who have dementia to allow carers their own time • Support for the carers themselves respite - so they could spend more time with their family • Respite/short breaks. Chance for carers to spend quality time away from person with Dementia • Respite for carers to go somewhere and discuss their experiences, maybe help each other in different situations, weekly • Regular respite for carers and the people they look after • Some form of respite for carers used to take place in Tickhill so people were looked after for a day a week by volunteers and carers had a

•

•

•

•

• • • • •

•

•

• •

•

•

respite day. Activities, games, music, singing - interaction with others Better support for carers including respite care to give them a break. Some do not have family that either can or want to help and they may be aged themselves. They cannot keep going 24/7 52 weeks a year Support groups. A buddy system for carers to help with giving time off to go to the shops, hairdressers etc. Regular access to local support for carers and patients together AND individually Councillors to offer and explain the illness and strategies to deal with it and guidance on legal and financial support Carers who stay overnight with Dementia sufferers Group support with different families that can go out for trips. More care More home carers Access to respite - memory cafes but more frequent/daily Opportunities for respite for the main carer. Training for the carer to cope with situations that may arise Respite for carers. Rapid response to crises e.g. carer goes into hospital. Somewhere to go for help. Understanding what you are entitled to Respite and day care to give carers a break. A local support group social, with maybe tea, coffee etc. Respite and support for both people with dementia and their carers Also have carers that can take out people with Dementia so they can help them with difficult tasks Understanding, awareness, support for carers to help keep homes together Awareness for carers and people with dementia. Help points. People

•

• •

• • • •

to gain this information We desperately need to return to the 1 week in 6 weeks respite, where the cared for moves into care to give the carer a quality break. This allows OAPs to retain full pension More respite options Respite for young onset dementia there isn't anywhere for them only old folks' home Places to go Contact point for carers and help and support More technologies to support carers e.g. door exit sensors Recognition of carers at GPs, public places: shops etc.

Community Based services • More dementia cafes • Bring back community wardens • Local support and advice and support similar to neighbourhood watch meetings Need council care homes to remain open • Need smaller residential care homes, larger homes means clients get lost (emotionally) • Keep council care homes open large homes cannot connect the same with dementia patients. Too many people overwhelm and confuse anyone with dementia • Keep the council care homes open • Need council run care home • Keep council run care homes open • Saving the council care homes as they are more understanding and friendly Places to go, interesting things to do • Afternoon tea cafe

• Places they can go to to be with people similar who know what they're going through • Day centres in local community i.e. village they live in. Not closing all council support • A choice of free day care opportunities to suit people with different kinds/different stages of dementia • More centres with groups within different areas • Support groups • More activities for people to attend, who have dementia and places for carers to go for their enjoyment and/or to meet other carers where they can share experiences and stories • Nice to go to lots of places where they will be nice to you because you have dementia • A routine. So the people they talk to know them • People to talk to. Regular things. Love and support • Drop-in centres/community facilities - including support for families • More befriending services • Friendship • Community support based on facilities, relationships and greater knowledge • Contact details/support groups detail in papers etc. making it easier to get support • Dementia friendly activities for families and the people that live with dementia • Places for safety and happiness • Special places e.g. a local community centre for them to go to at the same time, same day every week to catch up with others and have tea and biscuits etc. • Events/activities with other people that have Dementia

• A support group with regular meetings • Somewhere to go for help and someone to talk to for help • Somewhere to go to talk to a few people • Daytime events • Places or services to take the pressure off carers if only for an hour or two - such as the Dementia Cafe's now in place - but more often (weekly at least) would be better • To have a carer to take them out places they used to go • Support groups for people and their family and friends to go to • Day centres • Social clubs. Community centre • Groups where Dementia people can go and socialise with other people, fun trips • More community places for them to go to where other people that go suffer from similar illnesses • Groups for people with Dementia to interact • More community places for them to go • Buses that take you on FREE day trips to the seaside and you get a free meal and drinks • Put an activity on each day to get them into a routine • Somewhere to go regular to see people • A choice • Places they can go when they feel nervous • More places for them to go, and their carers • A group activity where people with dementia interact with all ages • More understanding and support for people with dementia. People to listen! And places to provide dementia cafes and workshops to empower people with dementia and

•

•

• •

• • • • •

• • •

their carers More drop-in centres for people to get to know one another, more facilities, day care, financial help for carers Somewhere to go as a family and speak with people who are in the same situation. Try to overcome fears A nice comfortable chair and friendly people all round Genuine support systems in the community to help people with dementia People/professionals who are knowledgeable about dementia Gardens in public places A social outlet A good friendly day centre with good friendly staff Regular event/meeting at same place on same day for person to look forward to - where people understand problems connected with dementia A meeting centre More public places to help Local ambassadors for informal advice/information/support

Dementia Friendly Communities • A feeling of being part of the community. • A sense of equality. Places for safety and happiness • Everyone in public services to be trained to deal with people with dementia without being prejudiced or patronising • Promote awareness in community. Set up local dementia groups. Leaflets promoting local awareness. Support local families. Local support line • Support - feel like part of the rest of the community

• Friendly people • Dementia friendly processes e.g. the library • People in shops that can recognise people with dementia so they can help them if they get stuck • Good customer service, especially on the buses and in places like libraries and churches • Someone to help people in shops and streets • Public areas such as train/coach stations, Frenchgate, Tesco could have volunteers to meet dementia customers by request and help them navigate the place. Dementia friendly taxi service • Dementia friendly communities more staff trained • Local shops with regular people • Local shops to have contact details for regular visitors with dementia so that family members can be contacted. Special badge that can identify people who have been diagnosed that is recognised by professionals • Signage better. Toilets, directions etc. Dementia friendly signs and knowledge of what they mean. 'Here to help' badges - perhaps clearer than 'Dementia Friends' as a term? • Dementia friendly trained staff/champions in the high street • More information for people in shops. More information for the general public • Some info on the person to carry to help others a book or notes on everyday things • Understanding by shopkeepers, organisations so that the person can lead as normal a life for as long as possible • Clear signs to follow for public places

• People who are well trained in the needs of people with dementia. Shops/services to have a dedicated person who can help in emergencies (rather like a First Aider) • Better assistance in shops • Enable them to look after themselves such as being able to buy things on their own in shops, with a pinless card • Sympathetic people, neighbours who have time to stop and listen or who can come in and visit, stop for a drink • Staff training on Dementia in all shops/businesses. All local businesses to sign up to the Action Alliance to support people/carers with Dementia. If they are signed up to the Alliance and promote this, people are more likely to use the business. More community support groups with support and information • A lot of support and get to know people in the community • More understanding and education for staff in people facing services and the general public • Main shops in district to be informed • Sympathy and understanding from all services: banks, shops, post offices, buses, trains, cafes, street signposts, supermarkets, medical (ALL!) • More support training in the community, assistance with the local shopping centres etc. Make people aware of Dementia and that it can affect everyone • More training for staff in shops/restaurants/banks/everyday situations. More limited use of technology e.g. a real person at hand rather than a list of buttons to press when making phone calls

• Community support from neighbours, medical centre. 'Babysitting' services to enable carers time out. People to ferry carers and sufferers to places of interest • Help and support so they can live a normal, happy life • A friend and someone to talk to on weekly visits • More understanding from shopkeepers and customer care i.e. in bus station to provide better information in an appropriate manner • Let their community know they have Dementia so they can help without judging them • People to go and see them, like a friend • For people to visit them often, so they're not alone • Employers and employees to be more aware of people and recognise signs of dementia • Awareness of dementia. Patience and a little extra time spent with people with dementia in shops • Knowing people understand out and about, not just services but local shops, cafes etc. - liked the term 'safe haven' - encapsulates that people need to know they're safe which may reduce withdrawal from society • An awareness in the community on how to help situations should they arise e.g. shop assistants • More places/activities for people with dementia to participate in with their families/carers • More awareness and tolerance of others in society/neighbourhood • Support and training for staff and community. Understanding Dementia in the wider community. Support for families and people with

• •

• •

•

Dementia Personal help in banks, shops. More awareness of types of dementia More awareness to the local community of dementia i.e. local shops, chemists, dentist, GPs surgeries, local police constables Understanding and awareness from public/community Support in travel and all areas of shops to be aware of dementia and support for the families who have to look after them More dementia friendly places. More support

Support for adults with dementia who go missing • I.d. bracelet and database for 1st point of contact • Card with important information about them • Some form of identification on their person so we can always get them home. A wide understanding by every community member • ID bracelet with relevant contact details i.e. next of kin, in case of person being found who is confused • More knowledge. Some form of identity to identify they have dementia and some information on them • A register. More awareness for shop staff. ID bracelets (discrete type obviously) • Local shops to have contact details for regular visitors with dementia so that family members can be contacted • Help at night for people who wander Information/where to go to find things out • Community hub that people can

access for information, learning, relief and to understand what other services are available locally through shared learning • More information about facilities that exist to help people with dementia and their carers. This information to be available in lots of different places • Information where to get funds and help from • Information so support already there can be accessed • Information as to what is the nature of Dementia - what is happening medically but in layman's terms, and the possible symptoms e.g. The difference between emotional and other memory in a Dementia sufferer. Somewhere for carers/ family to find out practical strategies for coping

•

•

•

•

• • • •

Specialist support and trained professional carers • • Support from experienced carers • Consistent one to one support. Not rushed. So people get to know and trust the person assisting them • Dementia clinics • Dementia drop-in centres with trained staff who offer services for carers and clients to get together • Guarantee of some social contact. Help with day to day activities • More community workers to visit with people with dementia • To give tailored support/social interaction to people living with dementia • A safe place to live. A helper that lives with them • Dedicated GP services with good access • A named person (official or neighbour) to whom problems can

•

•

be discussed Someone to visit regularly who knows situation or comes to know confidentially Companies to train staff in dealing with individuals with Dementia. Home carers to be trained in Dementia care, especially those in private practice Lots of support and a care worker who can always be at hand to ensure the individual doesn't find themselves in any confusing situations Specialist workers and support workers to guide them through their everyday routine Enough carers in the Dementia profession Affordable support More carers A well-advertised Help Person (at the surgery or library perhaps) that can point families in the right direction for help Someone to listen and help and support and guide throughout the whole process from diagnosis for the individual and family. Correct funding Someone in Carcroft Skellow to visit at our homes to find out how things are going Better knowledge of available help

Transport • More transport (accessible) • Community bus to go to day centres so people with Dementia can interact • Community buses • More awareness from public transport • More transport facilities for Dementia. Good train services

• Better transport/fares • Public transport with drivers 'in the know' • More buses, more support • Clearer help to use buses - to find the bus station/to use their pass etc.

Money • Enough money to be able to go to places with friends and family in the community to help them • Money! A recognition that the stringent cuts are affecting people's lives detrimentally in many ways

Technology • Telecare. Telehealth. Easy access to services. All carers assessments to include Assistive Technology • Training/awareness on dementia and how to access technology to support carers • Everyone who needs it should be offered dementia friendly technology • Available technology to be made more freely available • Technology options for everybody not everybody can work self service machines - to computerised machines some people like the old fashion way • More awareness with regards to technology, post offices, doctors

More awareness for younger people and work in schools • More schools and colleges taught about Dementia • More awareness in schools so that we grow up with this knowledge and can spot the signs • More awareness to more people, especially younger people • For more people to be more accepting of this condition, also the young to understand and not judge! • More awareness for all shops and public services schools as some children are living with people that suffer with Dementia. Children could educate their parents • Awareness sessions in schools • More helpers i.e. more classes to learn about it

Appendix B Changing people’s perceptions Before our show started we asked audience members to write down the first word that came into their head when they heard the word ‘dementia’. We repeated this at the end. The following are examples of how perceptions changed during the show.

Before

After

Memory Old Illness Illness/forget Forgetful Sad Illness

Support All ages Individuals Can still be happy A normal person Understanding Not an illness something you have to live with and be aware of Able Anyone Still a person Liveable Can live well with dementia A disease where a small part of a person forgets but they are still there Sadness tinged with hope Relief that others had experienced the same things as us It's not the end of life, help and support Hope? Manageable with available help Hopeful There is still life to live

Confused Old people Memory loss Problems A frightening journey An illness where people forget Sadness Worry Confused Forgetful Illness Heartache There were more colours

Appendix C Train the Trainer Sir Thomas Wharton Community College April/May 2015 Our artist ran workshops with the students at Sir Thomas Wharton Community College to identify how they would encourage their peers to find out more about dementia. Here are their responses. When asked to write down the first thing you think of when you hear the word dementia, Year 7 (11-12 years) students wrote the following: • Dementia

• • • • • • • • • • • • • • • • • • • • • • • • •

Demons Breakfast Breakfast Older Thinking Old Don't know Don't know Grandma Illness Forget Dentist Memory Loss of memory Old people Don't know what that means Disability Dimented Non-thinking Something gone wrong with your memory Forgetful Nasty Sadness Do know what it means These (word illegible)

When asked to write down the first thing you think of when you hear the word dementia Year 8 (12-13 years)

students wrote the following: • • • • • • • • • • • • • • • • • • • • • • • • •

Memory Forgetful Help Old age Friendly Old age Old Old people's home Forgetting Old people Forgetting I don't know Memory loss Brain Mum Old Old people Elderly Mate Granddad OLD People who don't remember stuff Older people Old people Blank

When asked about the best way they could communicate to other young people about dementia, Year 7 students came up with the following ideas: • Celebration day in church • Short film, professionally produced -

interview people with dementia and health professionals • YouTube 30 second advert with professional actors and a young person doing the voiceover • Poster - on side of a bus • Leaflet - in libraries, shop windows • TV advert - broadcast at 5pm • Social media - images, Facebook dementia awareness account • Talk from someone with dementia and carers - assembly in school (200 young people would attend) • Performance - free at school • Music - songs, rap • Apps - 10-20 second pop up ad when you purchase/download an app • PowerPoint presentation - delivered by people of our age • Study about the topic of dementia through our PSHCE (Personal, Social, Health and Cultural Education) lessons When asked about the best way they could communicate to other young people about dementia, Year 8 students came up with the following ideas: • TV advert, - professionally made with celebrities involved • Facebook page - do you know • Film full length - Tom Cruise • Meet and greet with someone with dementia in school • Apps • Celebrity in school to talk about topic • Song • School paper • Ice bucket challenge - something like this to raise awareness • Presentation (Power Point) with

• • • •

images - delivered by peer Dementia weekly - (magazine aimed at teens) Workshop Comedy focus with serious points about dementia Concert in school

In small groups the young people then developed a more detailed plan for their chosen idea. Year 7 Group 1 Idea: Short Performance What we are going to do: In this 10 minute performance each person will read out a piece of information and one person will act out what dementia is We will all perform our cards whilst Charli performs and creates actions related to the content on the cards. For example; forgetting parents or close friend's names Dementia Sufferers Need Support 'help them feel secure.' Dementia Logo (flower design) Dementia (love heart logo) Helping each other live with dementia and face everyday struggles Love can help someone live with dementia.' (Faces and love hearts design) Script for performance:

Dementia is when you forget things and sometimes you can't even remember who your own family members are! 1. When abbie peters reads her card. Pretend to have my phone and it says mum and say “mum… Whos that?” Dementia is a very hard condition that not a lot of people know about so it's very hard for some people to live with and tell their younger family members about it. Dementia is a very nasty disease that can give you memory loss. There are different kinds of dementia like memory loss and forgetfulness. Dementia is a commonly misunderstood condition and people affected by it can often be judged because nobody actually understands. It can cause many issues in a person affected by dementia in everyday life. Dementia is a very horrible condition that no one should get. One of the reasons being because you can't remember a lot of your personal information. Group 2 Idea: YouTube advert • Name of advert - Everyday Life with Dementia • 1 minute long • Professional actors • 5 helpful tips for people with dementia • Carers, welcoming places, memories, safe places

• White screen/street • Help people with dementia Group 3 Idea: Dementia Awareness Week • A full week's programme of different activities • Monday - School presentations someone who has dementia to talk to students • Tuesday - How to become a dementia friend. Watch a video • Wednesday - Concert about dementia • Thursday - Meet and greet with people that have dementia • Friday - Make your own dementia board game Group 4 Idea: YouTube advert • You Tubers give information about dementia • Sad music, progressing into happy. • Set locally, and inside, black background movie lights • Family interviews • Towards the end people could be smiling • Emotionally filmed • Trending # on social media #Fightingdementiawithyoutubers • 40 second ad, so viewers don't get bored • Old lady on a bench talking to her dead husband, teens laughing, You Tubers help towards the end • Not possible to skip the advert! • Include famous You Tubers and celebrities like Zoella, Dann and Phil Cat • Black and white at the beginning, colour towards the end

• Include families that have/had suffered altogether Group 5 Idea: Short film (30 min) • Watch in primary schools/secondary schools in assembly and clubs • Kind celebs will be part of the film • Shooted in studio • Interview people with dementia and nurses and people work with people with it Year 8 Group 1 Idea: Bus tour around Britain • Dementia - The Tour - What's happening? • Now come and watch the grand opening at Buckingham Palace! • Seaside games on massive bus • You Tubers • Celebrities • Footballers and more… • Some of these are ZOELLA, Queen • When - UK summer holidays 9.00am - 12pm Group 2 Idea: TV Advert • 2-3 mins • Famous, well known, liked actors Channing Tatum, Simon Cowell, Ant + Dec, Ed Sheeran, Joey Essex, Miranda, You Tubers, Zoella, Jim, Nala, Alfie, Casper, Marcus, Joe, Ollie, The Syndicate Project, Franta, Connor, Graceffa, Joey • Celebrities talking to peeps with dementia at their house how they live. What Changes. Not able to do • Talk about facts and signs - early

signs. Look at camera and plea for people to go to doctors. Close up • How to cope • Talk to family • On all channels apart from the boring ones that nobody cares about Group 3 Idea: Song • ('DEMENTIA friendly' and flower logo in top right corner) • BGT/X Factor/ADS • Informative supportive lyrics. • Not too fast so people can hear stuff • Like Band Aid - Taylor Swift, Miley Cyruss, Eminem!, Kellin Quinn, Imagine Dragons!! • A good video - get happier - blue + yellow Group 4 Idea: Website • 'DON'T FORGET. JUST HELP. Dementia support' • (Smiley face drawn in centre of page) • What is dementia support? • Dementia support is a website dedicated to help people cope with their dementia and help family members help their loved ones(s) with dementia • What can you do? • To receive support and a helping hand with professional advice you can take a look at the health and care section

© darts (Doncaster Community Arts) www.thepoint.org.uk 01302 341662 Registered Charity 1056799