Dementia Friendly Barnes - Final Report

Barnes Community Association funded a short-term project to encourage people working in shops and businesses in Barnes to work on becoming dementia friendly. This report considers the outcome of the project, the challenges and opportunities that arose as a consequence and whether it could be replicated elsewhere. Over the lifetime of the project, fifteen shops, businesses and community organisations took part, and over 90 people attended a dementia friend information session. Participating organisations agreed that they are more aware of people living with dementia using their shop or community organisation, and almost all believe that their staff are more willing to help customers showing signs of confusion as a result of improving dementia awareness. However, being dementia aware is not the same as becoming dementia friendly, and there is still a long way to go before any organisations or shops in Barnes could claim to be truly dementia friendly. It is hoped that a number of possible local initiatives such as dementia friendly events will come to fruition so that the momentum and initiative continues to be maintained to help people living with dementia in this community.

1.1. Dementia is a serious health issue and its prevalence is increasing. Good practice is focused on helping people live well with dementia and on developing more dementia friendly communities. Richmond Council supports this principle, and encouraged the Barnes Community Association (BCA) to undertake a pilot to promote a dementia friendly environment. The BCA funded a short-term project (one day a week for 8 months) intended to work closely with shops and businesses in Barnes to develop dementia awareness and to enable people with dementia to feel included in the community. The project was budgeted at £6,000 and cost £4,200, almost entirely salary costs.

1.2 Richmond has the highest proportion of people in London aged over 75 and living alone (51% in Richmond vs. 35% for London). It is estimated that approx. 2,000 Richmond residents have dementia with the figure expected to rise by 18 % by 2020. It is thought that two thirds of those with dementia live in the community. Barnes has a proportionally large elderly population (16.6% of the population of Barnes is aged 60+, compared to 13.5% in the borough of Richmond). This, together with its unique village atmosphere and close community links with existing networks of support such as FiSH Neighbourhood Care, meant Barnes was an appropriate place to conduct the pilot exercise.

1.3 A dementia friendly community is defined as defined as one in which people with dementia are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them (Alzheimer’s Society). Research conducted in 2013 by the Alzheimer’s Society reports that many people with dementia are not able to take part in activities that they previously enjoyed. Shopping was identified as the most common activity that people with dementia do in their local area (79%), followed by socialising (72%), eating out (69%) and leisure activities such as going to the park, library or cinema (55%). The research also revealed that 63% of people surveyed didn’t think that shops were doing enough to help people with dementia. Helping people with dementia to be supported in the community was therefore an attractive target for the project in Barnes.

Approach

2.1 Stage 1 involved carrying out research with people with dementia. This was undertaken through FiSH Neighbourhood Care, the Alzheimer’s Society and personal contacts. The intention was to use findings from the consultation to design what dementia-friendly shopping in Barnes would look like, and to recruit ‘mystery shoppers’ to help with a before and after audit. The mystery shopping idea proved to be too complex to organise. There was more success with the face to face research and a number of people were consulted. Broadly speaking, people either professed not to shop in Barnes, (especially if they did not live locally), or not to have any issues with shopping, or not to shop alone, or to prefer shopping in supermarkets. Research did reveal that it’s important to involve community groups and organisations in the project, as living well and feeling included does not only involve shopping.

2.2 Stage 2 of the project, which has been the bulk of the work, was to approach shops and businesses directly with the aim to encourage them to participate. A leaflet was prepared, helpful as a talking point/leave behind (see Appendix 2). At the initial meeting, a short questionnaire was prepared for the manager to gauge people’s current understanding of dementia and what dementia friendly means, with the intention of measuring any change in perception and understanding at the end of the project. It should be noted that most people tended to overclaim, often specifying that they had a good knowledge of dementia. This was contradicted by the low level of understanding demonstrated within the session. Almost without exception, most of the people approached were welcoming and positive about the idea of the project, and agreed it was important and worthwhile.

2.3 Appendix 1 provides a detailed breakdown of the shops and organisations that have been involved. The original plan was to work intensively with five or six partners to create genuine change, starting with raising staff awareness through providing a dementia friends information session (the route recommended by the Alzheimer’s Society). It became clear very quickly that few were able or willing to commit to more than this initial session. The scope was then extended to involve more shops and organisations – especially concentrating on the supermarkets in Barnes - to cover a wider range with lower level engagement. In total there were 15 participating organisations (retailers and others).

2.4 The Alzheimer’s Society’s recent publication (May 2017) recommends developing dementia friendly businesses through three approaches - people, processes and places. The people aspect was the easiest to address; the initial focus is around raising staff awareness, reducing stigma and increasing knowledge of what it’s like to live with dementia, through offering ‘Dementia Friends’ information sessions. These had broadly positive results in terms of creating awareness and encouraging people to become dementia friends. Equipping people with the necessary skills and understanding has the greatest potential to bring about transformational change and to enable genuine social inclusion for people living with dementia. ‘People’ aspects of becoming dementia friendly also includes supporting people with dementia who are still at work, and supporting carers – these aspects were not considered here.

There has been much less traction around the recommendations dealing with processes and places. This can involve making significant physical or environmental changes, such as changing signage, not moving products, providing colour contrasting decoration and furniture. Most businesses were reluctant to consider other issues - partly because of physical limitations to existing premises, or head office mandates (‘no chairs allowed’), or not being inclined to make expensive changes for only a small number of prospective customers, as well as not understanding why it would be necessary as well as a lack of time. One partner summarised the inherent difficulties in making further adjustments “this is all nice to have, and it’s important, but my priority has to be running my business” (i.e. I don’t have time to do more on this). Consequently, it would not be true to suggest that anywhere in Barnes is truly dementia-friendly in the widest sense of the word, and it does call into question how realistic some of the aspirations of the Alzheimer’s Society are.

2.5 Despite a general willingness to participate and recognition of the importance of the subject, there were considerable challenges associated with the project:

The nature of the businesses meant there were difficulties in finding the right person, in their responsiveness to phone calls or emails and thus a lot of time was spent ‘foot slogging’ Last minute cancellations were frequent The nature of the shops especially meant that only one or two people could attend a session at any one time; this was not necessarily best use of time although hard to see any alternative Discussions and sessions needed to be held in store, usually in cramped surroundings, and sometimes with customers coming and going; this made focus and concentration hard Business owners sometimes failed to tell their staff what the project was about – they were just told to turn up ‘for training’ Some staff had limited understanding of English and it was difficult to tell how much they absorbed of the information given and how much was subsequently remembered Rapid turnover of staff in many stores. For example, since the awareness session one of the pharmacies has had a 50% turnover in staff (most seem to use locum pharmacists).

Conclusions and Recommendations.

3.1 Despite best intentions to ensure this project was established with genuine and measurable results, like so many issues relating to social care, it is extremely hard to identify robust outcomes. The difficulty in measuring meaningful outcomes remains one of the hardest aspects of the project. Key indicators put in place were the number of dementia friends created and a pre-post questionnaire issued to managers and key contacts to assess changes in perception and attitude over the lifetime of the project. For reasons alluded to above, even these indicators have their limitations and the sample size is by definition small. The final questionnaire can be viewed at www.surveymonkey.com/r/PRTKGFX

Merely attending a dementia friends information session does not equate to becoming ‘dementia friendly.’ It was not felt desirable to issue a dementia friendly window sticker to those who had not gone beyond a basic awareness raising exercise without knowing whether organisations had actually implemented any other tangible actions. For example, looking at the action plans associated with being a member of Dementia Action Alliance (DAA), it is highly likely that some organisations have not completed their intended plans and have probably not revisited them since signing up to the alliance. Although the next step offered to all participating businesses was to become a member of the Richmond DAA, none have actually taken this up to date.

3.2 In absolute numbers;

38 people working in retail or business in Barnes received a dementia friends information sessions between May and September 2017. In the wider community, when people working or volunteering in community organisations are included, 91 people have been to a session and heard of the initiative. From the final questionnaire completed by eight participants, half said that their knowledge and understanding had increased a great deal as a result of this project. Seven out of eight are more aware of people with dementia using their business/organisation. Four agreed that staff are much more willing to help customers as a result of dementia awareness and a further three said their staff are a little more willing to help. All respondents said their staff/colleagues know how to help if someone shows signs of confusion or frustration and all feel they would now know where to signpost someone who needed help. Half of the participants who responded said they would like to take further action but they aren’t sure what, two wouldn’t be interested, one might and one is pursuing hosting a dementia friendly event.

3.2 Anecdotal evidence from talking to managers and owners following sessions suggests that staff are feeling more confident, that the sessions are welcomed and a few stories of individual achievement have been recorded and shared. Marks and Spencer managers in particular have talked about their staff being more alert to potential customers showing signs of dementia and more willing to help them. Londis pride themselves on knowing their customers and being sensitive to their needs. TH Sanders, local funeral directors, were very positive in how useful and relevant the discussion had been. Many individuals were genuinely complimentary about the sessions given.

3.3 Richmond Council have been enthusiastic supporters of this project, not least because they would like it rolled out to other parts of the borough. Our considered opinion is that without further funding, and a dedicated approach, it is not scalable to other areas, particularly where there are many shops and businesses to deal with. However, given what has been learnt about the general willingness to be involved at a low level and the extent to which organisations are willing to commit, it would be perfectly feasible for committed volunteers to offer friends sessions on the same basis as in Barnes. This is likely to be particularly effective in larger stores and supermarkets where most people shop anyway.

3.4 Over time, momentum has been building in Barnes; new successes and developments as a result of this work should be taken forward.

Specific recommendations include:

A partnership between the Dover House Singers and St Mary’s Church sees the first dementia friendly carol service being held on December 21 2017. This is aimed at local people and specifically clients at FiSH Neighbourhood Care, Age UK, Re-generate Rise in Putney and Alzheimer’s Society in Richmond and Wandsworth. Small adjustments will be made to ensure that people with dementia and carers and families feel supported and comfortable, and is a direct outcome of this project. Olympic Studios are interested in mounting a dementia friendly screening. This would need widespread publicity to attract a suitable audience. It should follow the principles generally adopted for autism friendly screenings and relaxed theatre performances. Marks and Spencer Foodhall in Barnes have expressed interest in offering a ‘dementia friendly’ shopping experience. This would entail customers being helped with their shopping, ‘no-hurry’ check-outs manned by members of staff rather than self-check, the provision of chairs to rest on and other small changes as demonstrated by other supermarkets elsewhere in the country. Again, this needs to work in partnership with an audience such as FiSH and Age UK and would need careful planning and publicity. A leaflet is in preparation aimed at people with a recent or new diagnosis of dementia so that they are aware of which shops and businesses in Barnes are dementia aware and can offer specific help. This should be promoted through FiSH, the BCA, and GP’s surgeries, especially the new community navigator post which has recently been commissioned to work out of Glebe Road surgery. This information should also be made available on Barnes Community Association website. Some follow up work should be conducted in six months to monitor awareness and see whether anything has ‘stuck’, and to update any publicity materials. If the retailers network can be built up and more people tempted to attend the next meeting, a short dementia friendly session could be offered to those who come and it should definitely be kept on the retailers’ agenda. The BCA should continue to champion the prospect of dementia friendly Barnes, support local charities working in this area and maintain active participation. One of the BCA trustees has volunteered to become a dementia champion and to take this work forward, supported by the Town Centre Manager.

Sarah Sumpter