fit as a fiddle with Age UK London

Transcription

1 fit as a fiddle with Age UK London Involving people living with dementia: insights The images in this report are taken from fit as a fiddle projects around London, but do not necessarily depict people living with dementia. Copies of this report and an evaluation of Age UK London s fit as a fiddle programme are available to download from the Age UK London website: If you have an enquiry about dementia friendly communities please contact the author Neil Mapes directly via the contact details on page 14. If you would like to find out more about what you have read, initial enquiries should be directed to: Age UK London 1st Floor, 21 St George s Road, London SE1 6ES t f Registered Charity No: Age UK London, the working name for Age Concern London, is a company limited by guarantee, registered in England and Wales no

2 Contents Acknowledgements...4 fit as a fiddle...4 Why a dementia legacy?...4 Dementia friendly and Age UK London...6 Age UK London practical approaches...6 Challenges and opportunities...8 Impact...10 Benefits...10 Key messages...12 About the author...14 References

3 Acknowledgements The author of this report (Neil Mapes) would like to express his deep appreciation to the people living with dementia, their families and the staff and volunteers who took part in the fit as a fiddle programme across the various organisations in London and the individuals who shared information for this report. Quotes are attributed to individual organisations where relevant. fit as a fiddle From , Age UK London delivered the fit as a fiddle programme across various boroughs of London, supporting people in later life to get and stay healthy, maintain independence, and improve their quality of life. fit as a fiddle was a nationwide programme, delivered in each of the nine English regions funded by the Big Lottery for five years, and it supported people aged 50 and over with physical activity, healthy eating, and mental wellbeing. In London a community development approach was adopted, working with small community organisations, in day centres and sheltered housing to engage older people who may not be reached by mainstream health promotion initiatives. The projects encompassed three distinct strands: Healthy eating Tackling obesity Community health engagement During the lifetime of the programme, 19 projects were delivered by Age UK and Age Concern organisations in 16 boroughs of London, reaching 3240 older people. A full evaluation of the fit as a fiddle programme can be found on the Age UK London website: Our-services/Fit-as-a-fiddle/ Why a dementia legacy? The dementia legacy project was conceived by staff and trustees at Age UK London. They wanted to capture and share the work which had specifically included people living with dementia in activities under the fit as a fiddle programme across London. The staff and trustees were aware that within large multi-faceted projects there were relatively small yet important elements of work which had taken place. The dementia legacy project in particular wanted to highlight some of the approaches used in engaging people living with dementia in the activity and programmes on offer through fit as a fiddle. The legacy work which has taken place comprises the following three elements, all of which are connected to the national momentum for dementia friendly communities : A brief summary report A short training package trialled with leisure providers A downloadable resource to support staff and volunteers It is important that when an organisation chooses to actively include people living with dementia in new programmes and initiatives that the experience and learning from doing so is captured and shared with others. This report will therefore briefly detail some of the approaches used by local organisations across London in working with people living with dementia; as well as sharing the challenges, opportunities, benefits and key messages for individuals and organisations concerned with ageing well. The training package and the downloadable resource both build on the messages contained in this report and bring it to life, making the messages practically implementable, reusable, sustainable and useful. The training package will raise awareness of dementia and the importance of meaningful activity for people with dementia within the provision of mainstream leisure providers. The downloadable resource will be useful for a wide range of staff and volunteers working with older people (and people living with dementia) in any health and wellbeing setting. 4 5

4 Dementia friendly and Age UK London In March 2012 the Prime Minister launched his Challenge on Dementia (DH, 2012) in which he raised a challenge to the whole of society, as well as government. The dementia challenge focuses on three areas: Driving improvements in health and care Creating dementia friendly communities that understand how to help Better research This dementia legacy project contributes to the practice-based learning and development which is taking place around the country, seeking to understand how best to create dementia friendly communities. In particular, the dementia legacy project provides information, learning and resources for organisations that do not have a primary focus on dementia or on older people. It challenges and supports leisure providers to explore ways in which people living with dementia can be welcomed, involved, engaged and supported to be part of community-based leisure provision, so that people can continue to live well with dementia. Additionally the project shares valuable experience and information with organisations that have a direct remit to continue to improve the support and services on offer for people living with dementia. Age UK London practical approaches Age UK London is a campaigning organisation actively striving to get the voices of older people heard. It is a regional charity working closely with local Age UKs and Age Concerns in each of the London boroughs and the national organisation Age UK. As well as working hard as a campaigning and influencing organisation, it also works in partnership with other organisations to improve the quality and range of services for older people. Three local organisations across London chose to actively include and engage with people living with dementia as part of the fit as a fiddle programme. These were: Age UK Hounslow Age Concern Kingston upon Thames Age UK East London (Newham, Tower Hamlets and Hackney) These organisations adopted different approaches to meet the challenge of involving people living with dementia in this healthy living project. Whilst the work that took place did not involve large numbers or widespread activity, the practical approaches are worthy of recording and sharing so that other organisations and groups can learn and build on these approaches in their own service delivery. In addition to these three local organisations, which adopted specific approaches, individuals living with dementia came forward and were part of fit as a fiddle generally in other local organisations and other London boroughs. Age UK Hounslow worked in partnership with local organisations and community groups to deliver a range of physical activity and nutrition programmes. There was a dedicated project worker who was active in engaging people living with dementia in nutrition and exercise programmes. The worker informally introduced the elements of the fit as a fiddle programme consistently with one local group of people living with dementia at a centre in Hounslow. She also skilfully introduced the fit as a fiddle messages around nutrition and falls prevention by encouraging individuals to talk about their memories of recipes, about favourite foods, gently bringing out the benefits of a varied diet. She extended these workshops using her creativity; bringing in smoothiemaking machines for the group and encouraging them to try out different fruits and vegetables and make their own smoothies. This encouraged individuals to try out new recipes and experience new tastes and flavours. The exercise sessions were intentionally very informal and at first some of the dancing and keep fit activity was described as a struggle, but as the group continued to work together, individuals became keener and remembered the movements/steps and worked to a routine of the exercises. Age Concern Kingston upon Thames delivered work with the following aim: Increase access to our services for people living with dementia and work with partners to develop new services. In Kingston they chose to actively target hard to reach groups in year one of the funding and older people with mental health problems (including people in the early stages of dementia) in year two of the funding. This decision in itself must be acknowledged and appreciated. In addition to a successful existing Saturday club for people living with dementia and their carers, the charity chose to develop two singing programmes specifically for people living with dementia. These programmes ran twice during the project, with groups of 14 and 21 people participating respectively. They took place in popular, community-based venues in the north and south of the borough to both make the sessions accessible to local people and cover a significant geographical area and the participants of the groups chose their songs and were assisted by song sheets which were produced for the group and supported by a singing instructor. Both individuals and the group as a whole were guided by the instructor in their singing practice. Age UK East London, working in Newham, Tower Hamlets and Hackney, developed a volunteer peer mentoring system for older people under the fit as a fiddle programme, which built on previous pilot work carried out in Newham back in In the first 18 months of the programme, running a relatively formal model of delivery took place, where volunteers would be recruited and trained, then matched with an older person (after a combination of historical data capture and interviews). The two individuals were then paired together to go out and pursue a broad range of activities together, such as aqua exercise, walking, tennis, dancing and swimming. A project officer supervised the volunteers and a database of healthy living classes was established to link the mentor and mentee directly into local provision. Whilst a number of helpful resources were developed during the first phase of this project, people did not come forward in the numbers expected and men in particular were poorly represented. Relationships didn t flourish as hoped and planned. It took courage, new leadership and careful planning to re-direct the project. A more flexible, creative approach emerged, which centred on the individual and their strengths and working closely with referring partner organisations. Cooking clubs emerged as an early success in this revised model of delivery, partly due to the staff member involved. These took place at various locations and were both male and female only as well as mixed gender groups. The groups enabled individuals to enjoy cooking and eating together, to learn about food and share health messages and support each other socially. The groups also allowed for a more informal social matching process to take place. The success of these groups, incorporating the peer mentors throughout, and the change of emphasis for the project, led to a wide range of activities being delivered for older people generally, including: traditional and creative outings (e.g. to Kew Gardens and to X factor), travel training, Tai Chi, swimming, zumba dancing, craft groups and Nordic walking. People living with dementia were supported to successfully take part in the cooking clubs with a volunteer mentor as well as Nordic walking and to lesser extent social outings. The informal matching worked well, as did providing verbal reminders of activities and visual cues for example healthy living plates developed as part of the groups were used as a contextual reminder in the kitchens of people living with dementia. Some aspects of Nordic walking presented particular challenges for some individuals with dementia, for example remembering how to fasten the straps on the tops of the Nordic walking poles, but the group members were quick to support each other to get past these challenges. 6 7

5 Challenges and opportunities There are a number of challenges which arose from the fit as a fiddle programme and the involvement of people living with dementia. Where there are challenges there are also opportunities. The challenges were mainly associated with: Data capture, monitoring and impact measurement Practical issues relating to attending activities Risk taking Staff ratios Data capture, monitoring and impact measurement Part of the monitoring and evaluation for the fit as a fiddle programme used standard data capture such as questionnaire data. Interestingly, there was no data collected from people living with dementia using this method. Part of the measurement of impact for the fit as a fiddle programme required people to record regular measurements of weight and dietary intake. There are challenges both in using questionnaires and in the regular recording of healthrelated data with people living with dementia, which felt beyond the projects detailed here. Future projects should seize this opportunity and incorporate additional resources (e.g. staff time) and alternative methods (e.g. interviews, participatory appraisal, carer training and support) to capturing data for monitoring so that we can be clear about the impact of different activities for people living with dementia. Practical issues relating to attending activities The activities on offer to people living with dementia took place at local community based venues and included cookery clubs, walking and dancing as well as social outings and health information sessions. There were a number of practical issues directly related to the symptoms associated with dementia which presented a challenge for the local projects. Many of the local projects involved in fit as a fiddle commented on how likely it was that some of the participants who came forward had dementia, but had no formal diagnosis in place. This intuitive feel for when an individual in a group is coping less well than others may or may not be due to the early presentation of dementia symptoms. As well as the problem with people not having a formal diagnosis (which is a national issue) there were a range of local practical problems. For example, the practical task of reminding people to attend new activities took varying amounts of time depending on the social status of the individual and for example how easy it was to contact them at home. Remembering the specific technique for fastening the walking poles (during the Nordic Walking) and remembering the particular steps for dance classes were other practical challenges. There is an opportunity here for local Age UKs (and other organisations) to work in close partnership with individuals, families and memory clinics to highlight the early signs of dementia. The additional opportunity here is for projects and programmes to use familiar and accessible community based venues, provide additional support for people living with dementia and to use a format which repeats over time allowing the person living with dementia time to learn the new routine and activity. Risk taking Sometimes you have to take risks. Age UK East London We know that in general terms health and social care provision has adopted a risk averse approach to delivering services for people living with dementia. Individuals and organisations who actively take positive risks should be supported and encouraged to do more. Engaging people living with dementia in group walking activities in parks and in social outings to places like Kew gardens presents associated risks for the organising group. In the main, these risks can be mitigated with careful planning and, when valued against the planned benefits of an activity, the true value of positive risk taking emerges. Some degree of risk is inevitable in everyday living. At some stage an individual, or a group of individuals, has to take a stand and decide to go ahead with an activity because it is worth doing. The opportunity here is for individuals and organisations to adopt a riskbenefit approach to activities for people living with dementia in line with national guidance (Nuffield Council on Bioethics, 2009). Staff ratios It is the intensity of staffing needed to keep people happy and connected that means it is hard to involve people with dementia in bigger scale activities, of course some do attend our mainstream sessions, but not those who need constant attention. Age UK Camden People living with dementia, like all of us, have good and bad days. This can often mean that there are days when individuals need close and constant supervision to maintain their safety and to enhance their wellbeing. Additionally, the nature of some activities, for example a group outing on a river boat for the day, brings with it an additional staff/ volunteer support consideration. This is a challenge for organisations like Age UK. When there are additional support needs for particular activities then, by the nature of staff and volunteer numbers associated with these activities, the numbers of people with dementia is likely to be low. This presents an opportunity for mainstream leisure providers, working in partnership with older people s organisations and dementia specific groups, to share knowledge, staff and volunteer resources so that a broad range of healthy living activities are on offer to people living with dementia at a local level. Opportunities The opportunities that arise out of the challenges experienced through the fit a fiddle programme are summarised below: 1. To improve our impact measurement with people living with dementia. Additional resources and alternative data collection methods are needed in future projects so that we can be clear about the impact of different activities for people living with dementia. 2. For local Age UKs (and other organisations) to work in close partnership with individuals, families and memory clinics to highlight the early signs of dementia, to help diagnostic rates improve. 3. For local projects and programmes to use familiar and accessible community-based venues, which provide additional support for people living with dementia and use a format which repeats over time allowing the person living with dementia time to learn the new routine and activity. 4. For individuals and organisations to adopt a risk-benefit approach to activities for people living with dementia in line with national guidance. 5. For mainstream leisure providers, working in partnership with older people s organisations and dementia specific groups to share knowledge, staff and volunteer resources so that a broad range of dementia friendly healthy living activities are on offer to people living with dementia at a local level. 8 9

6 Impact In addition to the planned individual outcomes and impact for activities and programmes, there are unexpected outcomes. Sometimes these unexpected outcomes challenge the prevailing understanding of dementia and at the same time remind us about our expectations of and capabilities of people living with dementia, as this quote shows: Staff noticed that when the older people with dementia participated in the fit as a fiddle singing programme, they concentrated throughout, participated and seemed visibly cheered by the activity. Age Concern Kingston upon Thames The impact of working with people living with dementia is often profoundly emotional and not easily conveyed in reports. Whilst there is no long term cure for dementia, there is much that can be done to allow the person to live well. Singing, for example, is one of the many meaningful and accessible activities people can enjoy. Singing (as well as other creative and nature based activities) can create day-to-day moments when the individual steps forward and the dementia symptoms temporarily become less important. Additionally, individual members of staff and volunteers reported being aware of a person with dementia becoming fitter (during exercise classes) in some tangible sense, but also described how this is difficult to objectively evaluate and report back with associated figures for funders. This is in contrast to the extensive work carried out on the Social Return on Investment impact measurement made for the fit as a fiddle programme as a whole, which included a wide range of quantitative data on impact for the older participants, although nothing specific to people living with dementia. The challenge and opportunity remains for building the evidence for the benefits of healthy living activities for people with dementia. Whilst qualitative evidence is powerful, we now also need an equal focus on the quantifiable metrics, which helps us be clear about the impact of planned activities. Benefits The success of any new programme is partly dependent on being clear about the benefits of taking part. If the benefits are clear, then people will want to keep doing the activity. The benefits of fit as a fiddle specifically for people living with dementia, involved physical benefits, psychological benefits and social benefits but also the joy of living, which arguably is a combination of elements of all of the above. It [the singing] was therapeutic and provided good mental exercise and was good for breathing and posture. (Physical and psychological benefits) Age Concern Kingston upon Thames It improved their interaction with each other as they were doing something together. (Social benefits) Age Concern Kingston upon Thames But perhaps the most significant benefits are associated with the concept of joy which can be a combination of all three benefits. Surely if people living with dementia are to live well, then their lives would be characterised by frequent experiences of joy: The singing brought them joy. Age Concern Kingston upon Thames An Italian man who d not spoke for years suddenly started singing, we were in tears, it was very emotional! Age Concern Kingston upon Thames After you work somewhere for thirty odd years you get used to using your brain. When you suddenly lose your job, you miss out on that. Here it has all come back again. I suppose it s keeping me going really It s important to have some purpose, some goals to get out the house. If you stay indoors and get depressed it s horrible. Age UK Hounslow participant The benefits on offer to many older people through activities under fit as a fiddle are often the same from people living with dementia. The above quote is from a participant (who does not have dementia) who took part in aerobics, zumba dancing and yoga but could be equally applied to people living with dementia because the benefits transcend the illness and apply to us all as human beings

7 Key messages Seven key messages have emerged from this dementia legacy project. They are summarised below with some additional detail: 01 Beneficiary selection Organisations that are leading new initiatives and programmes aimed at living healthier lives together must find ways, through creative partnership working, to include people living with dementia. Historically, many healthy living initiatives have not risen to the challenge of involving people living with dementia in their activities. The fact that people living with dementia were actively selected as a beneficiary group for elements of the fit as a fiddle programme shows leadership in this area by the Age UKs and Age Concerns involved. We have had to take activities to where people live, and our participants don t want to go to multiage classes, they feel more comfortable in the environments we have provided. Older people with early and later stage dementia also needed programmes tailored to their specific needs we were very conscious of a gap in provision. Age UK Kingston upon Thames 02 Commitment It is important that service delivery organisations, policy makers, grant funding bodies, commissioners and local organisations continue to commit to supporting people living with dementia to be equal members of our society and to be included in future healthy living initiatives if we are to realise the vision of dementia friendly communities. 03 Dementia training Specific dementia awareness and communication training is needed for all staff and volunteers who are directly and indirectly working on a project which involves people living with dementia. Awareness of the different types of dementia, the symptoms and communication strategies are all areas that are often missunderstood and are critical in forming the basis for a dementia friendly community. 04 Fun and informality works Groups that are fun, informal and have more of a social focus, can encourage individuals to try new experiences in a safe setting, who might not have done so otherwise. People living with dementia are no different to anyone else in their need for fun and laughter. We know that having fun and laughing together make us more likely to keep up an activity. Fun and humour was an important element in the successful fit as a fiddle programmes. There is a note of caution here too, because laughing with is very different from laughing at and misdirected humour can be devastating for the individual and lead to their departure from the group activity. 05 Leadership and partnership Programmes like the ones that have taken place during fit as a fiddle have succeeded because of effective local leadership and partnership working, which will be key elements in sustaining programmes during the difficult financial times ahead. The very thing that makes it a lot more concentrated and successful is that you have a dedicated co-ordinator, who is just running this programme. (Partner organisation) It is significant that the fit as a fiddle programmes, including the programmes for people living with dementia, had staff members championing, leading and co-ordinating the work at a local level. 06 Sharing activity together One of the ways in which we will be able create and sustain dementia friendly communities will be by sharing activity together that bonds us as human beings not defined by illness. Singing, and cooking/ sharing food together, are two such examples. 07 Sustainability It is essential that people living with dementia are involved both in the choices surrounding day-today healthy living activities but also in strategic decision-making processes. The fit as a fiddle programme involved people living with dementia, enabling individuals to have some choice and control over how they took part in the activities on offer. This involvement is one of the first steps towards creating and sustaining dementia friendly communities. The advocacy maxim is relevant here: Nothing about us without us. People living with dementia are experts by experience and there are a growing number of Dementia Activists who are willing and able to speak up, to represent their peers and to lead on developing and sustaining new projects we must support these individuals and groups to flourish

8 About the author Neil Mapes is the founder and director of Dementia Adventure CIC, which is a multi-award winning social enterprise specialising in connecting people living with dementia with nature and a sense of adventure. For more information please visit References Department of Health (2012) Prime Minister s Challenge on Dementia Delivering major improvements in dementia care and research by 2015 Nuffield Council on Bioethics (2009) Dementia: ethical issues, Cambridge publishers Ltd