Meeting Centres webinar – New Kids on the Block

Those of us of a certain vintage may have secretly been hoping for a surprise performance by the 80’s/90’s boy band, but the ‘New Kids on the Block’ webinar that took place on 24th September was a hit in its own right.

Professor Dawn Brooker MBE welcomed everyone to the sixth webinar in the Meeting Centres webinar series, which focused on hearing from a range of individuals who have just opened a Meeting Centre or are in the process of getting one up and running, looking at what inspired them to get going and some of the opportunities and challenges along the way.

The style of the webinar was ‘A conversation with…’, hosted by Graham Galloway who is Chief Officer of Kirrie Connections Meeting Centre. He was speaking with:

Graham started off the conversation by giving a bit of background about how the existing Kirrie Connections evolved into a Meeting Centre. When he heard about Meeting Centres he described it as a lightbulb moment which showed him how he could take the organisation forward. Kirrie Connections was already doing or offering a lot of the elements described in the Meeting Centre model, so it felt like a perfect match. It’s been a fantastic journey since then, and Graham is currently chairing a working group in Scotland with around a dozen organisations looking to open Meeting Centres.

What inspired you to get involved with Meeting Centres?

Isobel reflected that Alive! Had been doing a lot of work with care homes, but wanted to look at doing more work with the community and supporting people to live in their own homes. The organisation was Introduced to the Meeting Centre model and, as with Kirrie Connections, felt like it was a good fit for their future plans. They wanted to bring something new and innovative to Bristol, but recognised the importance of having the existing evidence base around the impact of Meeting Centres to support discussions with other organisations and potential funders.

For Julie it was a bit more personal, with the academic/research aspect of Meeting Centres not really being a factor for her. One of her colleagues saw a discussion about Meeting Centres on social media and inspired Julie to find out more about them. As with her Dementia Friendly Prestwick work, the starting point for Julie is always ‘Would my mum enjoy this?’. With Meeting Centres, the quality of support provided, the links with community, the duration and ongoing nature of the sessions (rather than just being an hour session), and the fact that they support the whole family were all important factors that spoke to her. She thought that Meeting Centres would have worked for her and her family.

Barbara spoke about a conversation she had had with Dawn back in 2014 about wanting to develop local, community provision as she felt it was the way forward. This coincided with the start of the Association for Dementia Studies’ involvement in the research around Meeting Centres, and Dawn recommended that Barbara keep an eye on Meeting Centres. When the evidence became available, Barbara found that it fitted well with other work that they had going on, and they have now been awarded funding to start two new Meeting Centres in Sandwell.

Pre-Covid, Breda had been running a memory café within her dementia friendly community. Her interest in Meeting Centres was sparked after hearing about them through the Life Changes Trust. The pandemic actually provided an opportunity by giving her thinking space and the opportunity to explore and discuss the potential of Meeting Centres, as well as getting her team through the online Meeting Centres Training Course. When the time came to consider plans for reopening, Breda and her team had to make the decision of whether to continue as a memory café or take the leap and open as a Meeting Centre. They decided to go for it, and have received funding from the Life Changes Trust to support them.

How did you go about the community engagement process?

Alive! are looking to set up two Meeting Centres in different locations, one in the city of Bristol which is big city, and one in North Somerset. They created a Steering Group in Bristol as they wanted to get people on board and engaged from the start, but it has been tricky during lockdown and the pandemic more generally. There has been a lot of support and interest as there is nothing like a Meeting Centre currently available in Bristol. Their Steering Group in North Somerset has linked together multiple Dementia Action Alliances in the area to decide on the best approach, but they were quite lucky to get a funder on board quite early on. The engagement process has been quite organic and flexible in some respects, but the overarching goal was to make sure that what’s being done is right for the area, with people living with dementia and their carers being involved throughout the process.

In Sandwell there is already a culture of partnership working, a thirst for training, and an enthusiasm and appetite to develop new ideas. They are part of a collaborative partnership of nine organisations commissioned to develop a wider support service which would ideally be aligned to the dementia pathway, and have been demonstrating how Meeting Centres can fill the gap in post-diagnostic support for people with dementia. They have also been working with Innovations in Dementia to establish a DEEP group to ensure the voices of people with dementia are included in those conversations.

Dementia Friendly Prestwick has been running activities such as relaxed cinema sessions and health walks for a few years with the aim of raising awareness of dementia. They have not necessarily been activities exclusively for people with dementia as it was felt they should be accessible to everyone and enable people with dementia to be part of the wider community. Dementia Friendly Prestwick also has a good social media presence to share what they are doing, aiming to be an open door for anyone who may have concerns about dementia. Their focus is on providing a friendly face and the opportunity to have fun, first and foremost. Regular events have helped to raise their profile, together with work around design to make Prestwick seafront more dementia friendly. The support they have been providing during the pandemic has also given them a good opportunity to start conversations with individuals about how they can provide support in a more formal way. They are taking it step by step, but making sure the community is engaged at every point.

How are you approaching funding?

Isobel said that they are planning to charge member fees as they have found from previous work that people tend to be more invested and engaged if they have to pay. However, fees need to be kept affordable, manageable and accessible. Although different funding models are being followed in Bristol (funding from two funders for two years) and North Somerset (Local Authority), it was recognised that charging is still required to help with sustainability.

In Dunblane, they have initial funding from the Life Changes Trust, so they are currently only charging a small attendance fee as it didn’t feel right to charge too much to start with. They are still applying for further funding from different sources. While Breda realises that funding is an important issue, particularly in terms of paying for a Meeting Centre Manager and Support Worker, she feels people shouldn’t let it put them off. When exploring what people are paying to access other forms of support from independent companies locally, sometimes through personal budgets, Breda felt that there must be a way to show what support Meeting Centres offer for a better rate.

While Barbara and her team have got a 3-year Lottery grant to cover their staff costs, they are still planning to charge people to attend their Meeting Centres. This is likely to be a challenge as Sandwell is not an affluent area by any means, so they are looking to get Meeting Centres included in care packages for people as part of what they should automatically receive when they need care. They are also exploring a voucher scheme where people could buy vouchers themselves or be bought them by an organisation, provider or charity, or maybe even by family.

Are there any particular current challenges for you? (other than the pandemic)

For Julie, finding a venue is an issue as there is shortage of empty properties in Prestwick. It’s also difficult to identify a suitable building, but she realises that they may have to find one that is ‘good enough’ rather than holding out for the perfect venue with the right stuff, which may not actually exist.

A venue is also an issue in Bristol because the Meeting Centre would want to use it for three days a week and ideally have parking. Opting for a roving Meeting Centre in multiple locations in North Somerset was partly to overcome the difficulty of finding a single venue. While they would ideally like to have their own venue(s) at some point, they want to actually get the Meeting Centre going and see how things go.

Barbara recognised that there is still a lot of anxiety and uncertainty around at the moment, with some people not wanting to attend groups. It can also be difficult for people delivering support to work out what they can and should be doing to keep people safe. As Graham acknowledged, building relationships with people can help with this as they have trust in you which could encourage them and make them feel more comfortable to get back out and about, or at least give things a go.

Top tips for people thinking about opening a Meeting Centre:

  • Be prepared to compromise, particularly in terms of a venue, and make sure you talk to everyone right from the start
  • Get people on board by helping them to understand what Meeting Centres are and what difference they can make to people
  • Feel the fear and just do it. You have to start somewhere so just give it a go
  • Be bold and believe in the Meeting Centre model. Be positive and tell people why it’s good, rather than asking them what they think

Graham closed the conversation by recognising that everyone involved in Meeting Centres is so passionate and believes in them and their impact.

Dawn summed up the session by saying how great it was to hear how much is going on and seeing the level of commitment from everyone. Even when things don’t go to plan it’s about hanging tough and finding an alternative solution. She also reiterated that the Meeting Centres group are available to help each other, so make use of us all.

Thanks to Graham for facilitating the conversation and to everyone for taking part and sharing their experiences. If you would like to watch a recording of the session it is available here.

The next webinar will take place on 29th October looking at ‘Scaling up Meeting Centres in a locality’. Please see our website for details on how to register to attend.

(For those of you might be wondering, yes, I did amuse myself by managing to get a few NKOTB song references into this blog, and yes, I do know the band members’ names without having to look them up)

Follow Meeting Centres on twitter @MeetingCentres

Meeting Centres referrer meeting

With four new Meeting Centres up and running in Worcestershire and two further ones in the pipeline as part of the Worcestershire Meeting Centres Community Support Programme, it felt like a good time to get everyone together and promote Meeting Centres to potential referrers across the county. Consequently, the Association for Dementia Studies hosted a networking meeting on 13th September to introduce all of the Meeting Centres in Worcestershire and raise awareness of how members and carers can be referred to them.

Around 40 professionals from various health and social care organisations across the county joined us to find out more about Meeting Centres, how they can support Meeting Centres and how Meeting Centres can support people they may work with. They were welcomed by Professor Dawn Brooker MBE who gave an overview of the session and introduced some of the key people involved in Meeting Centres. She also raised an important point for us all to bear in mind during the session, that if people don’t know about Meeting Centres and don’t use them, we could risk losing them as an important resource to support people affected by dementia.

Setting the scene

The recent increase in Worcestershire Meeting Centres is due to the £540,000 funding provided by Worcestershire County Council from their Business Rates Retention Pilot. Hannah Perrott, Assistant Director for Communities at Worcestershire County Council set the scene by saying how Meeting Centres addressed the goals of Worcestershire County Council in terms of providing support for people affected by dementia, and how excited they were to see the progress that’s already been made. She also reminded the group that there is still some funding available for further Meeting Centres as part of the initiative, with the next round of applications closing on the 30th September.

To ensure everyone was on the same page in terms of knowing what a Meeting Centre is, Dawn gave a quick overview from their origins in the Netherlands through to their evolution in the UK. In relation to the dementia pathway, Meeting Centres sit between dementia cafés and day care, and are intended for people living at home who are starting to experience difficulties as a result of their dementia. They aim to help people get back on an even keel and build resilience for the future. Meeting Centres are small-scale interventions focusing on local communities, welcoming both the person with dementia and their family carer, helping them to adjust to challenges they may face. They support around 15-20 people per day and tend to be based in community buildings. While they are driven and shaped by the needs of their members, Meeting Centres generally deliver a mix of activities providing social, physical and emotional support, helping to keep people active.

It was recognised that people can be reluctant to attend groups but experience from work around Meeting Centres has shown that once people get through the door they do like and enjoy attending Meeting Centres. It is therefore important to make people aware of Meeting Centres and refer people to them, so that Meeting Centres can work their ‘magic’ once people are there.

A question and answer session gave attendees the chance to ask questions about anything they had heard to this point, to clarify and points raised so far, and to make suggestions for connections and further networking activities that could take place. There was a lot of interest within the group and many good points raised with some great ideas of how to link people together. Discussions also took place around referral routes and who could be supported by Meeting Centres, particularly regarding age and diagnosis.

Before hearing directly from the Worcestershire Meeting Centres, Dawn provided the wider UK context around Meeting Centres. The previous MeetingDem project translated the Dutch Meeting Centre model for use in the UK, Poland and Italy, and as part of that two demonstrator sites were established in Droitwich Spa and Leominster. The current UK Meeting Centres Support Programme is aiming to increase the spread of Meeting Centres and there are now multiple Meeting Centres across the UK. Despite having to cope with the Covid pandemic, most Meeting Centres have continued to provide remote support when it was not possible to meet in person. While there have been developments in various parts of the UK, Worcestershire is the only county to take a more strategic and coordinated approach to funding multiple Meeting Centres.

The Worcestershire Meeting Centres

First off, we heard from Lynne Mole, Age UK Worcester and Malvern Head of Services. Their remit covers quite a large area within the county, and Meeting Centres have opened in several locations: two in Worcester (Bank House and Dines Green), one in Malvern Link, and one in Wichenford. There is also an intention to open a further Meeting Centre in the Tenbury area. A Meeting Centre manager has been recruited to operate across all of these Meeting Centres. They began by offering taster sessions in May/June time which proved quite popular, and now deliver a whole variety of activities based on what people want and are interested in. Lynne commented how wonderful it was to see the smiles and enjoyment among the members and carers, and see people develop over time.

Once a referral is received, the team will have a chat with them and direct them to their local Meeting Centre. They have a mix of some people attending by themselves, and some coming with carers who may choose to stay or choose to go and have some time to themselves. As the Meeting Centres are operated by Age UK, they do have good links to other services so the team are able to identify when people have extra needs and refer them on accordingly, or are able to have private conversations with people as necessary. They are currently working with the Platform Housing Group to subsidise people to attend their Meeting Centres, and while it was initially planned for those wishing to attend the Dines Green Meeting Centre it has actually been offered more widely across the county.

Next up we heard from Sally Dance who is the manager of the Evesham and District Meeting Centre. It only opened in July and is currently supporting a relatively small number of members, but is aiming to grow over time. While they have an overall plan for their days, they are flexible to accommodate different preferences or needs amongst their members. They are finding that they have not been getting many referrals, but those they have received have tended to come from GP surgeries and from interest through their interactions on Facebook. Their joining process involves an initial conversation with the carer before inviting member and carer to come in for assessment, and enabling them to attend a taster session at the Meeting Centre.

Our final Meeting Centre representative was Jude Henderson, Director of Services for Age UK Herefordshire and Worcestershire. They currently run Droitwich Spa Meeting Centre and are due to open two new Meeting Centres in Kidderminster and Stourport in the next few months. They have a great staff team who get to know the members to make sure the activities they provide meet their needs and are relevant. They also have good interactions and relationships with the family carers and hoping to get their regular carers meetings back up and running post-Covid. More widely, they also run a Meeting Centre for veterans in Hereford, where activities are tailored for that specific group of members and carers. Referrals will be directed to the relevant Meeting Centre, with members undergoing a soft assessment to ensure that the Meeting Centre is appropriate for them. It also provides an opportunity to get initial information to feed into the delivery of activities. Jude also shared a link to a short video clip about Droitwich Spa Meeting Centre: https://www.youtube.com/watch?v=kIJQfjKDl9M

Based on the level of interest generated by the three speakers and the range of questions being asked, there should be some new referrals coming through in the near future!

Following a short comfort break, the attendees split into three groups to have more detailed discussions relating to Meeting Centres in the three geographical areas presented. They considered how we can work county wide to optimise support for people affected by dementia, the opportunities and challenges presented, what referrers need from Meeting Centres and conversely what Meeting Centres need from referrers.

Further discussions

Key themes or points emerging from the breakout discussions were:

  • Social media can provide a good form of engagement with potential members, carers and referrers
  • ‘Getting to know you’ conversations and Meeting Centre taster days seem to work well
  • It is important to ensure Meeting Centres and potential members and carers are a good fit for each other
  • Professionals have good opportunities to share information about Meeting Centres with their teams, but it would be helpful to have leaflets with relevant contact details etc. It can also be useful to have leaflets to give potential members and carers during any visits or consultations
  • Good discussions were had about some of the challenges around sustainability and deciding on costs to members
  • It could be useful to share information more widely when recruiting for Meeting Centre managers as referrers may know of possible candidates
  • It is important to link with social prescribing

The session ended by considering what needs to be done in terms of maintaining a countywide approach and keeping Meeting Centres on everyone’s agenda. Based on feedback, a quick win would be to have the contact details of all Meeting Centres in Worcestershire available in one place, such as in a leaflet or on the ADS website. We’re already winning, as this has been put into action since the referrers’ meeting, so if you want to find out more about the Worcestershire Meeting Centres this handy list is now available.

As a final reminder, there is still funding available via the Worcestershire Meeting Centres Community Support Programme, with next round of applications having a closing date of 30th September.

Connect with Meeting Centres on twitter @MeetingCentres

Official opening of Malvern Link Meeting Centre, St. Matthias Church

On Wednesday 25th August, the new Malvern Link Meeting Centre at St. Matthias Church opened its doors to the community for its official opening. There was a bustle in the building on arrival, with displays of information, artwork and projects. The Meeting Centre Manager, Kirsty Hughes, was on hand to talk through some of the activities that people had been involved with at the Centre, including discussions around the history of St. Matthias Church, and books that were being crafted by each person, which one of the displays was all about.

Reverend Phillip Johnson gave a bright a cheery welcome to everyone before our own Professor Dawn Brooker MBE gave us an insight into the background of the Meeting Centre model which was developed in the Netherlands. She then spoke about the exciting spread of Meeting Centres across the UK, with there now being 28 Centres open or due to open in the next few months. Local MP Harriet Baldwin followed by speaking positively about the importance of the Meeting Centre for people living with dementia in the Malvern area.

Finally, it was time to cut the cake, have a cuppa and of course a good natter! It was great to chat with people living with dementia and their family members who have recently joined the Centre and they were full of praise for it. See below for the beautiful cake that was created especially for the event.

Cutting the cake L-R: Professor Dawn Brooker MBE, MP Harriet Baldwin, Meeting Centre Manager Kirsty Hughes, Reverend Phillip Johnson

A big thank you to all involved with the Malvern Link Meeting Centre for a wonderful and inspiring morning. We wish you all the success in the running of your Centre and look forward to visiting again soon.

For further information about the new Meeting Centre please click here, or you can contact info@ageukwmh.org and 01905 724294.

Connect with ADS on Twitter @DementiaStudies and on Facebook @adsuow You can also follow Meeting Centres on Twitter @MeetingCentres

Everyone brings something to the Meeting Centre

The June webinar was held at a slightly earlier time than normal due to the University of Worcester graduation ceremony for three of our PhD students, but that didn’t stop a good group of us getting together to hear directly from people with dementia and their family carers about their experiences of Meeting Centres.

In her welcome, Professor Dawn Brooker reminded everyone that the Meeting Centre ethos puts members and family carers at their heart, and aims to help them adjust to the changes that dementia brings. When this session was originally planned as part of a face-to-face conference, the intention had been to support people who attend Meeting Centres to involved in person and share their experiences. While current conditions mean that we’d had to do everything online, we still hoped to be able to capture a flavour of that input in this webinar.

The UK Meeting Centre Support Programme has been supported by two key organisations to ensure that the views of people with dementia and family carers are captured and represented in our research. The first organisation is Innovations in Dementia, represented by Damian Murphy, who supports Dory Davies and Dreane Williams to be part of the project’s National Reference Group. As Dreane was not able to be part of the webinar, her thoughts were shared by Damian. The second organisation is Together in Dementia Everyday, represented by Ruth Eley who was sharing the thoughts of family carer Ann Caldwell, while a second carer George Grindlay was part of the webinar.

The webinar took the form of a discussion with questions posed by Dawn, and the following attempts to capture an overview of the points discussed. We highly recommend watching the recording of the session as it’s far more powerful to hear what was said in people’s own words.

What has been your involvement with Meeting Centres?

Dory used to attend a Council-run day service twice a week, but it has been closed since March 2020 due to the pandemic. While it is not a Meeting Centre, it appeared to have some similarities. Reflecting on her experiences, Dory said that a Meeting Centre is a very important place if it is run properly. When she attended her service they would plan activities and what to have for lunch as a group, before going to the shops and buying the food. Meals would be cooked and eaten together as a group, which crucially included the staff. An important point for Dory was that everyone used the same crockery and cutlery, rather than staff having separate equipment. As she said, “we were all just a family” and there was “no us and them”. She appreciated the people at the group who were there to help with any problems, and who were also able to tell when things were not going well for her or she was having a bad day. There was also a quiet space available where individuals could go to get away from people if they needed. Dory also enjoyed being able to get involved as an extra pair of hands and help out, as she likes taking care of others.

George’s experience was different as although his wife used to go to Kirrie Connections Meeting Centre before the pandemic, he only really joined the Meeting Centre himself during the first lockdown. He had previously used the time when his wife was at the Meeting Centre as a form or respite and a chance to get some space for himself. He reached out to the Meeting Centre when he was at a crisis point and felt that he couldn’t cope with caring for his wife. He received a lot of support from both the staff and other members of the carers group, and was reassured that what he was experiencing was normal. It was good to have the opportunity to meet people who were having similar issues.

Despite not being able to attend the Meeting Centre in person, George has been joining in with health walks organised by Kirrie connections and he and his wife have made friends with another couple. He feels that the Meeting Centre is about sharing things, and is somewhere he can reach out and not feel judged. As he said, “I feel safe”. There was a real appreciation of the work that the Meeting Centre has been doing, and everyone is approachable and can understand or ‘suss out’ how he is feeling. “Without the Meeting Centre we wouldn’t be where we are today”. It has allowed him to allow his wife to express herself as she has taken part in lots of different types of activity and learned new skills. Reiterating what Dory said, George felt that the Meeting Centre is a place where everyone shares experiences and there is no them and us, no uniforms, and no differentiating between people. This is important as it means that everyone is treated the same and “makes you feel part of a family”. Strangers have become friends, and he feels able to say what’s going on without worrying about shocking others.

Dawn acknowledged how difficult it can be to ask for help, and that if you do not get right response it can put people off and make them less likely to ask again.

George agreed that taking the first step is very hard. It also means that you have to face up to the fact that you are a carer, which can change the ‘husband and wife’ dynamic. It is important to realise the changing role though.

How has the last year been during lockdown?

George reflected on how the lockdown has meant that he and his wife have been together more often, so conversation and communication with the Meeting Centre has been vital. With the Meeting Centre being closed all established routines have been disrupted which has been upsetting for his wife. However, the Zoom sessions by Kirrie Connections have helped to re-establish some form of a routine and also give him a bit of a break at the same time. George has been able to take some time out, even just for an hour, while his wife is in an online session.

For Dory, her group also closed, but her experience was very different. She has not had any support during lockdown which has been upsetting for her. There have been no phone calls or emails. She has missed having a routine of going twice a week, finding that she is now more likely to get mixed up with the days. Dory lives alone and admitted that she did get quite depressed. However, other forms of support have helped her out during this time. She managed to get an allotment which has really been beneficial, and she has also had support from her fellow ‘Zoomettes’ (a group of ladies living with dementia who have formed an informal support group on Zoom) and Dementia Diaries [add link]. Dory felt that while Zoom has been a life saver, you can get “Zoomed out” if do too many. She also prefers being outside, so there are some Zoom sessions that she won’t miss having to attend! (not the Zoomettes, obviously). Dory ended by acknowledging that she has lost confidence during lockdown, especially in terms of getting out and about using public transport.

Damian shared some thoughts from Dreane, which largely mirrored what had been said so far. Although Dreane has not attended a Meeting Centre, her reflections focused on what works well with other support she has received such as a dementia café she used to go to. She felt that it is important to have a “sense of belonging”, and a safe space where you can be open with others. She had been in quite a dark place, but good support through the online groups, in this case the Zoomettes, helped her to realise that she has still got plenty of life to live and a lot to give. Being part of a group which includes people with dementia and family carers is also good as there are moments where you can see that other people are going through the same thing as you. Dreane said being able to share with carers has been equally beneficial, as she can share her perspective as a person living with dementia. It was important for her to see it from the other side too.

Ruth, on behalf of Ann, highlighted that while taking a break is really important for carers, they need to know that it’s also going to be a positive experience for the person they look after. If not, the carer will spend the time worried and anxious, rather than actually getting a break. For Ann, Meeting Centres offer the best of both worlds as her husband is able to be part of the Meeting Centre while she is supported in the carers group. Importantly, she doesn’t feel on her own. Ann’s husband was initially reluctant to go to the Meeting Centre, but settled down and enjoyed it once he got used to it. When it closed during lockdown it was an issue as it disrupted their routine. His condition has also become worse during lockdown, and Ann is worried about how she will encourage her husband to go back to the Meeting Centre once it reopens as he may not be able to appreciate that he will benefit from it and enjoy it. Getting out and about again is also hard as we come out of lockdown, so Ann suggested that continuing to offer online support alongside face-to-face contact could help while people get used to going out again.

This led nicely on to the concluding part of the discussion where people were offered the opportunity to say what they thought the key messages were to take forward, and What meeting Centres should bear in mind over next couple of years.

George reiterated the previous point made by Ann, saying that there is likely to be a lack of confidence following lockdown, so there should be some form of continued support mechanism as people start to go back to Meeting Centres in person. He also noted that as Kirrie Connections Meeting Centre has moved to a new premises during the pandemic, everything will be new for everyone. For him, the key to help people adjust and settle in is to provide routine, continuity, and laughter, as well as treating you as a normal person. Providing tasks and activities to help maintain memory as well as develop new memories is also an important part of what Meeting Centres have to offer. George concluded by highlighting that the Third sector needs to bloom to continue supporting services such as Meeting Centres as they are not the sort of support that the NHS will provide. For him, it is vital for Meeting Centres to “keep going and keep going well”.

Dory felt that coming out of lockdown it was important to move forward in small steps. Even being around a few people can be more than we’ve been used to over past 15 months, so be aware of how people may feel and react. Take time and build up slowly until people have their confidence back, rather than overloading them. She has decided not to go back to her local Meeting Centre when it reopens, partly because she has been disappointed by the lack of support they offered during lockdown, but also because many people who used to attend or work there will no longer be there. She is however hoping to set up her own group in local area, and we have no doubt she’ll succeed. Dory ended by reiterating that it’s vital to keep people involved and together, saying “we’re all unique and wonderful but together we’re a masterpiece”.

Dawn brought the webinar to a close by reiterating that there is a need to recognise that we’ve all been through a lot in the past year, so we have to support each other emotionally, socially and practically.

Although there was no time for a formal Q&A session at the end, discussions on the chat had been very active with lots of networking and appreciation for the work being done by Meeting Centres during lockdown. There was a sense of disbelief about the lack of support experienced by Dory during lockdown following the closure of the service she used to attend, with people saying that Meeting Centres had been very different. For example:

  • At Kirrie Connections “alternative out of the box thinking support came into play very quickly”
  • When Dementia Matters in Powys closed the doors of their Meeting Centres it was “at the same time as bringing in new support, telephone calls, virtual meeting centre, online carers support groups, online sessions for men living with dementia, Welsh language support, newsletters, cards, garden visits, garden tidy up, knit ‘n’ natter online, armchair exercise online.” More recently, staff have been starting to take people out over the past month to help address anxieties regarding social contact. “Now we have dipped our toes in and gone out it has helped to reassure people that you can get out safely, we are also working with Social Care Wales and have produced a series of videos showing people what changes there are in the community (e.g. a trip to Tesco, pointing out the sanitisation areas etc). Offering 1:1 support to simply go for a walk with an individual can also be a helpful level of support to help get people back out”

So thank you to everyone for an “emotional, inspirational, amazing session”, and we look forward to seeing you at our next webinar. We’re taking a bit of a break over the summer, but will return on 24th September for a session titled ‘New kids on the block.’ It’s not a boy band revival, rather Graham Galloway from Kirrie Connections Meeting Centre will be hosting a conversation with people who are just starting out on their Meeting Centre journey – register now!

Don’t forget you can watch this webinar again here.

It all comes down to a question of money

Nobody really likes talking about money, but it’s an important factor that can’t be ignored when it comes to providing a community-based service such as Meeting Centres. Chaired by Professor Dawn Brooker MBE, the May Meeting Centres webinar looked at funding aspects from three different perspectives:

  • What motivates a funder to fund a Meeting Centre
  • What it’s like as a Meeting Centre seeking funding
  • How to find out what people might be willing to pay to attend a Meeting Centre

First up giving a funder’s perspective was Arlene Crockett, Director of Evidence & Influencing Dementia Programme with the Life Changes Trust. Set up by the Big Lottery in 2013, Life Changes Trust has funded 267 organisations across Scotland, benefitting nearly 20,100 people with dementia and over 12,300 unpaid carers of people with dementia. Less than half of people with dementia are offered post diagnostic support, and much of that provision has been affected by the Covid-19 pandemic, highlighting the importance of the work being done by Meeting Centres.

Life Changes Trust funds a variety of projects at both local and national level, including a large number of Dementia Friendly Communities. The Trust focuses on funding community-led grassroots groups that start small can be more sustainable due to greater buy-in at ground level. Rather than there being a potential competition for funding between Dementia Friendly Communities and Meeting Centres, they are often complementary, with Meeting Centres being seen as a natural development route for some Dementia Friendly Communities. Indeed, Kirrie Connections Meeting Centre itself evolved from a Dementia Friendly Community initiative.

Recognising the work being done my Kirrie Connections, the Trust has committed funding to support it for 18 months, not just for the sustainability of the individual Meeting Centre but also as a strategic element within the work being done nationally around Meeting Centres in Scotland. For Life Changes Trust, Meeting Centres and Dementia Friendly Communities sit together comfortably and have the potential to provide a good underlying structure and platform for delivering a wider range of post diagnostic support.

A key resource from Life Changes Trust is ‘Dementia: A whole life approach – a resource for creating better lives’ which can be found via their website at www.lifechangestrust.org.uk/publications. You can connect with Life Changes Trust on Twitter @lifechangestrst

Next up was Graham Galloway, Chief Officer at Kirrie Connections Meeting Centre, who shared his experiences of some of the different types of funding available to Meeting Centres. He gave many tips and bits of good advice that I’m sure many webinar attendees will take away and benefit from, but here’s a summary of some of the key points:

  • Grant funding – Search grant sites and sign up for alerts to know when new grants become available. Build a relationship with funders as many are happy to answer questions or discuss applications which can make them stronger. Some offer training or workshops which it’s good to make use of. Be aware that it can take time to put grants together as well as any reporting that may be required once funding has been awarded, so make sure you have relevant staff in place to support this. Including a management fee in your budget when applying can help with this, but not all grants will allow this.
  • Fundraising and events – Register with HMRC to ensure you can claim Gift Aid on donations. Be aware that the use of cash is declining, even before the pandemic hit, so consider ways of accepting card payments at events. Get your PR and social media working so people know who you are and what you’re doing. High profile events can also help to increase awareness of your Meeting Centre. (sorry Graham, couldn’t resist sharing this image from your recent – and very successful – Kilt Walk!)
  • Membership fees – Using membership fees to become sustainable may not be possible due to the relatively small numbers of people who attend Meeting Centres each day, but they can still be important as a means of showing potential funders that you can actually generate your own income.
  • Donations, wills and legacies – You may have to search for local trusts via a charity regulator website as many don’t publicly advertise what they offer, but can still provide financial support when contacted. As well as donating raffle prizes, local businesses may donate services and goods so it’s worth asking around. Families may also use wills and legacies to show their support and how much a service is valued.
  • ‘In-kind’ support and volunteers – Local businesses might provide free labour to help out with some projects, while many large businesses have Corporate Social Responsibility programmes that you could benefit from.

So while it’s clear that there are many options out there, it’s worth bearing in mind that it does take time, effort and energy to access them.

You can connect with Kirrie Connections on Twitter @kirrieconnect or Facebook @kirrieconnections

Our final speaker was Dr Michela Tinelli from the Care Policy Evaluation Centre at the London School of Economics, who is working with us as part of our ‘Get Real with Meeting Centres’ project. She focused on ‘how a discrete choice experiment will be used to measure people’s willingness to pay for successful Meeting Centres’, which will include capturing the views of both people with dementia and family carers. For this work, you need to consider multiple different aspects of Meeting Centres, so it’s not just about what activities and support they offer, but also how they do that, such as how often people can attend, whether it’s in person or online, and whether people need to book in advance. The final aspect is the cost of attending. Part of the work is recognising that you can’t have the best of everything, so there will always be trade-offs required, but what those trade-offs are and what people are willing to be flexible with are not often understood. That’s where the ‘discrete choice experiment’ (DCE) comes in.

We’re still early in the ‘Get Real’ project and in process of developing the DCE that will be used, but it will look at people’s preferences for Meeting Centres, what they are willing to pay, and how this relates to sustainability. A DCE basically works by asking people to choose between two alternative hypothetical situations, and in Get Real people will also be allowed to say if would choose either of those or prefer to stick with the Meeting Centre they currently attend. By considering different situations with various combinations of elements, it will be possible to work out which of those elements are most and least important to people.

Once the DCE has been developed it will be tested and piloted with Meeting Centres before rolling it out to be used more widely with people with dementia and carers in multiple Meeting Centres across the UK.

We’ll keep you up to date with any developments and findings!

The webinar concluded with a short Q&A session which included a discussion on fees, in particular whether there is a problem if different Meeting Centres have different fees. It was recognised that it’s difficult to ‘standardise’ a fee for attending a session at a Meeting Centre as there is variety in terms of the venues used and what is provided or delivered during a session. The key is to keep members and carers involved and informed at all times, including when fees are set or changed, so that it is clear why two Meeting Centres may be charging different amounts – especially if they are in geographically close locations. Another important point raised as part of the discussion is that it can be difficult to definitively agree on a fee when a Meeting Centre first opens as you may not have a clear picture of the actual running costs until it has been operating for a while.

Thanks to our presenters and to everyone else for taking part. If you missed the webinar or want to listen to any of it again, you can find a recording here.

The next webinar is about ‘Everyone brings something to the Meeting Centre’ and will take place on 25th June at the slightly earlier time of 10-11am. You can register to attend via our website

Meeting Centres National Reference Group – latest news

In mid-May 2021 the latest meeting of the Meeting Centres National Reference Group (NRG) took place, the second held as an online meeting due to the pandemic. It brought together around 20 interested parties from different organisations across the UK, as well as Professor Rose-Marie Droes who founded Meeting Centres in the Netherlands and was able to provide an international perspective as Chair of the MeetingDem Board.

Chaired by Professor Dawn Brooker, the meeting was essentially split into two parts, one reflecting on what’s happened so far and one looking at what happens next.

Image showing a signpost with 'progress' on one sign and 'what next?' on the other

In the first part of the meeting Dr Shirley Evans, with input from relevant NRG members, provided an update of progress on the project to say where we’ve got to. Here are some of the highlights:

An explosion of new Meeting Centres

There has been a lot of activity recently, with four new Meeting Centres being funded in Worcestershire this year. At least six new Meeting Centres are being planned in Scotland in the next 12 months, and a similar number expected in various parts of England. That’s just the ones we know of that are funded or looking very promising. In addition, there continues to be a lot of interest on a pretty much daily basis, so by the time you read this these numbers are likely to be out-of-date!

Image showing multiple house icons to indicate how the number of Meeting Centres is increasing over time

An active, effective and growing Community of Learning and Practice

As you’ve hopefully seen from previous blog posts, we’ve been hosting regular BYOL and monthly webinars to share Meeting Centres with everyone. What you probably don’t know is that since lockdown began last year we’ve been facilitating a regular meeting for Meeting Centre Managers and other interested parties. They’ve provided the opportunity for people to share what they are doing, raise issues they’re facing, share examples of good practice, ask others what they would do in certain situations, and generally provide peer support and encouragement to keep the momentum going even when Meeting Centres haven’t actually been able to open.

Image showing a network of people

We’ve also been developing and delivering our online training for staff and volunteers, to help them understand how to develop and implement a Meeting Centre. We’ve had some good feedback so far, and by the end of the year hope to have trained over 80 people. The next course starts 2nd August, so if you are interested please have a look at our website and get in touch.

In addition to blogs, our Meeting Centre blog site has also been expanding to include a repository of useful resources to support people remotely, but we have plans to develop the site further to include a space where people can connect and discuss with each other. We’ll keep you updated with any progress!

Collecting meaningful and impactful data

In spite of the difficulties posed by lockdown, our Meeting Centre demonstrator sites have continued to collect useful data to add to our growing evidence base around Meeting Centres. As well as being useful from a research perspective, the type of data we ask them to collect is based on what Meeting Centres might be asked for in funding bids around attendance, impact and satisfaction. The intention is therefore that data collection is mutually beneficial and has a practical purpose. Additionally, although each Meeting Centre contributes its own data it can draw on the wider pool of evidence across all Meeting Centres. It might be a challenge at times, but it is worth it!

Image showing documents around a graph to represent data coming from multiple places into a central evidence base

A robust portfolio of related projects

While the NRG is part of the UK Meeting Centres Support Programme (UKMCSP), we also have several other related projects underway which complement and enhance this work.

  • Worcestershire Meeting Centres Support Programme – Worcestershire County Council is using funding from the County’s Business Rates Retention Pilot to support the setting up and running of nine new Meeting Centres in Worcestershire over the next three years. Four Meeting Centres have been awarded funding so far, and the latest round of applications closes at the end of June
  • A PhD studentship, match-funded by the Shaw Foundation, to explore strategic approaches such as regional support to scale-up Meeting Centre provision, using the Worcestershire model as a case in point. Our new PhD student Nathan Stephens joined us in February
  • Get Real with Meeting Centres – NIHR funded research into the sustainability of Meeting Centres, using a realist evaluation to explore what helps Meeting Centres to succeed and what needs to be in place to sustain them over time. Consultations and interviews will hopefully start over the summer
Image showing four jigsaw pieces linking together

Looking to the future

The second part of the meeting looked toward the future, considering what could happen after the funding from the National Lottery Community Fund comes to an end at the beginning of 2022. It is clear that Meeting Centres are a great way of supporting people affected by dementia, and that individual Meeting Centres are flourishing despite the pandemic. However, because of the pandemic we have not been able to progress the exact nature of a national infrastructure to support new and emerging Meeting Centres.

A proposal was discussed for a bridging plan for 2022-24 that would be directed by a National Consortium of interested parties with an aim of furthering the strategic establishment of Meeting Centres across the UK. It was suggested to have the following key outcomes:

  • Communities across the UK have easy access to information and advice about Meeting Centres
  • Communities across the UK have easy access to web-based resources and up-to date guidance on MC implementation
  • Meeting Centres Staff, Leaders and Trustees have access to Community of Learning & Practice & Demonstrator Sites
  • Meeting Centres have easy access to Skills Training for Meeting Centre Staff and Volunteers
  • Meeting Centres collect data on implementation and have this analysed over time
  • Meeting Centres have access to up-to-date knowledge of Meeting Centres research and evidence
  • Policy Influencers in each jurisdiction will have up to date knowledge of Meeting Centres

After putting forward the proposal, Professor Brooker opened the floor to the wider group for discussions to get feedback on the proposal and see how those outcomes might be achieved in practice. There were lots of thoughts and some great points and ideas for us to reflect on and build into our plans. Watch this space!

Thanks to everyone for attending, and maybe the next meeting will be in person rather than online.

You’ve come to the right place

Our April Meeting Centres webinar focused on the physical environment and how Meeting Centres can be made more dementia friendly. It was a real team effort, consisting of four short presentations. The session started with Professor Dawn Brooker MBE acting as chair and setting the scene about why the venue for a Meeting Centre is important and what you should look for when exploring potential options.

The first main presenter was Teresa Atkinson, who is module lead for our online PGCert module on ‘Enabling Environments for people with dementia’. She spoke about why we need to adapt environments for people living with dementia, but first took us back to basics by considering the impact of dementia on the brain and how it affects our ability to do everyday activities. She then encouraged us to consider what we can do to improve environments for people with dementia and calm things down.

Some of her key tips included:

  • Give me a clue. Help people to know what the purpose of a room is and where they are by providing visual cues and information, such as a table and chairs for a dining room and clear information about day, date and time.
  • Help me find my way around. Clear signage with images, text and directional arrows can be helpful, as can suitable lighting that enables people to see where they are going rather than asking them to walk down a dark corridor before sensor lighting kicks in.
  • Flooring is important. Avoid patterns or stripes as they can appear to move or be visually confusing for some people, while shiny floors may look wet or slippery and discourage people from walking on them.
  • Don’t confuse me. Avoid shiny surfaces, reflections and mirrors as people may not recognise themselves, especially if they think they are younger than they actually are. Seeing an older person than they are expecting could cause distress or confusion.
  • Where am I? Murals and decorations can make rooms look like a different space. For example, a mural of an underwater scene could be very confusing and make it unclear what room someone is in.
  • Support my mobility. Help people maintain independence by making it easier for them to move around. Avoid black mats by doorways as they can look like holes in the floor, and make sure any handrails or similar have sufficient contrast to the wall to enable people to see – and use – them.
  • Help me stay connected. Create spaces and an atmosphere where people feel comfortable and where they can socialise. A smaller scale can help with this as it feels more homely. It’s also important to consider outside spaces as they can be just as important in terms of social activity.

Next up was Sarah Waller CBE, who focused on the use of assessment tools and how they could be applicable to Meeting Centres. Originally developed as part of a Department of Health funded programme by The King’s Fund, a series of tools is available to help people assess different environments. They are not audit tools where an environment will pass or fail, but rather a self-assessment process to support people to make environmental improvements over time and help them to prioritise areas for improvement. Some of the ways people have used the tools to make changes in their settings are shown below.

In addition to the tools for organisations, Sarah also discussed a booklet she helped to produce for people to use in their own homes, called Making your home dementia friendly. More recently, the Association for Dementia Studies has worked with local organisations to develop a Dementia Friendly Village Halls guide and checklist. It is important to consider village halls as they often cater for multiple different types of group on different days, including some Meeting Centres, so it can be more difficult to make appropriate changes to the venue. However, there are still plenty of things you can do, but you have to realise that you often have to work with what you’ve got and make the best of with temporary changes for your own group sessions.

Julie Twaddell shared her experiences of working as part of Dementia Friendly Prestwick which began around five years ago. It originally started with a community cinema and developed dementia friendly health walks along Prestwick seafront (which looks amazing!).

They consulted with people to find out what improvements could be made to make the walks more accessible, not just for people with dementia but for everyone. One example Julie shared was working together to get a crossing put in place to help people cross a busy road running alongside the seafront, making it safer to access public toilets and a café. Based on their experience, Julie highlighted how important it is to get different organisations involved and explain the reasons behind any proposed changes at all stages, as this helps to get engagement and buy in. Sharing good news and taking people with you along the journey can also really help.

Julie also shared that they are in the process of establishing a Meeting Centre in an old cinema, where the building will also be shared with the wider community. They are facing a few challenges around the scale of the building and the style of the existing art deco fittings as they don’t necessarily fit with the guidance provided earlier by Teresa, but they are hoping to make it a suitable environment for everyone. We can’t wait to see the end result!

Caroline Hutton from Retain Wellbeing CIC was the last speaker of the session and talked about their experiences of working in different venues. She highlighted that it’s important to recognise that there is no right or wrong answer when it comes to choosing a building or how to go about it, as what works in one case may not work in another.

A consultation with their potential and existing clients found out what they liked and disliked about different venues, and what was important to them. Transport, parking and access were commonly referred to, but a less obvious issue was the history of the building and what people might associate it with. This can sometimes be a distraction from what you are trying to achieve, or attract the wrong kind of attention from others.

While recognising the difficulties of making changes in a rented space, Caroline suggested that there are many options available to you if you are willing to be creative and engage with the landlord. It’s always worth asking what they are willing to provide or let you do, such as having a lockable cupboard to keep items in rather than having to keep bringing them each time. If you don’t ask, you’ll never know! She finished by saying that insurance is also an important consideration, as it can determine what you can and can’t do in the venue. For example, some might have a ‘no animals’ policy which could limit some activities.

Following the four great presentations, there was time for questions which enabled a few connections between attendees to be forged and further advice to be shared.

The following is a list of useful links to resources mentioned during the session and discussion:

A recording of the webinar is also available if you would like to listen to it – https://youtu.be/Tbvp_ikauSk

The next webinar will take place on Friday 28th May and will be looking at the tricky issue of money and funding. A brief overview of the topic is shown below, but please see our website for full details and how to register.

Thanks to everyone for their input, it was a great session with loads of useful information to take away. Contact details for the relevant parties are:

Roll up, roll up, get your news(letter) here!

Since Meeting Centres first closed to members and carers back in March 2020, they’ve been continuing to provide support in a variety of ways (see some of our previous blogs for examples of the work being done in Kirriemuir, Powys, Leominster and Droitwich Spa). While the focus has often tended to be on virtual sessions, remote support and getting to grips with Zoom (other platforms are available, and we’ve had far more experience of them than we ever expected!!), the role of newsletters has proved to be very important.

Newsletters can sometimes be overlooked or considered a bit old fashioned, but actually what we’ve seen from the Meeting Centres is that they are an integral element of the overall support package. Their members and carers look forward to receiving the newsletters, with many preferring a physical printed copy that they can hold rather than an online version. That isn’t to say that an email newsletter isn’t a good idea, it’s about giving people a choice about what works best for them. Additionally, while a virtual activity session may be enjoyable, it’s only on at a specific time; people can keep referring back to or re-reading a newsletter many times when it suits them.

The following is based on the experiences of people at a few of the Meeting Centres around the UK. Any mistakes are mine not theirs!

So what are some of the difficulties associated with preparing and producing a newsletter?

  • The time it takes to plan and put together. It’s a lot of effort which can often be underestimated. One particular area that can take time is looking for quizzes, colouring pages, word searches and similar that are suitable for members and carers.
  • A lack of professional equipment and software, especially when it comes to formatting. Everyone is doing the best they can with what they have and what they are comfortable using.
  • The time and cost of printing and distributing paper copies.
  • Deciding on which format to use. Email copies are not always read by many people, but as mentioned above paper copies have associated practical issues (e.g. time and costs).
  • Thinking of new content each time, especially as some newsletters are produced weekly. It can be helpful when there is a big event or celebration such as Christmas or Wimbledon, as this gives a focus to the newsletter.
Anyone for tennis?

What works well, and what are the top tips relating to newsletters?

  • Be clear about the objective of the newsletter. It should ideally be light-hearted, informative and fun, helping to stimulate memories, conversations and engage the mind. It should be inclusive and supportive, appealing to all members and carers at an appropriate level. It should also be informative, sharing any important information about the Meeting Centre with members, carers and the wider community.
  • Try to keep it gender balanced. There is potentially much more content available for (or aimed at) women, so you need to be aware of this.
  • It can be helpful to know what your members and carers like, as well as what their abilities are, as this can help to steer the type of contents and the language used.
  • You might want to consider getting members and carers involved in coming up with a name for the newsletter or a logo to use on it.
  • Have a standard format or template. It makes it easier for people to recognise and follow as they know what to expect. It can also be easier to produce as you are working with an existing structure and know what elements you need to include. Some ‘regular’ items could include the following, although they would obviously be tailored to each Meeting Centre:
    • News from the Meeting Centre
    • Fundraising news and activities
    • Stories and images around a central theme
    • Puzzle page
    • Recipe page
  • Use newsletters to keep people updated with the services provided by the Meeting Centre and any changes that are taking place.
  • Include photos of staff and volunteers so people know who they are, especially if new staff come on board.
  • Use photographs and images rather than being too text-heavy (note to self, add more images to these blogs!). One volunteer has also become friends on Facebook with a couple of photographers who are happy for some of their images to be used in a newsletter as long as they are credited.
  • Include puzzles or quizzes that members and carers could do independently or together. These can encourage interaction and stimulate the brain, but you need to ensure they are pitched at the right level, i.e. not too difficult but not patronising either. The internet can be a good source for jokes and puzzles.
  • Encourage members, carers and volunteers to contribute content, which can help to improve engagement with the newsletter and give people a sense of ‘ownership’. For example, asking people to send in pictures around a theme such as ‘pets’ or ‘Spring’, or asking for favourite recipes. However, you need to give people plenty of time rather than setting short deadlines.
  • It can be particularly useful if you have a volunteer or member of staff who is enthusiastic and willing to take it on and run with it. They will get to know what they are doing and become quicker at putting things together, but will still need support so providing items to include can be very helpful. For example, a Meeting Centre manager may give an update on what’s going on from an organisational perspective, or people linked with specific activities or projects could provide information on those.
  • A collaborative approach is also beneficial because if it’s left to just one person there is a risk that “you can find yourself going down a rabbit hole of self-indulgence on the topics which appeal to you”.
  • Plan ahead. Think about possible themes for future newsletters as you may spot relevant items while working on an earlier edition. As one volunteer said, “I keep a file on the computer for items I come across and store them for a suitable time to use them. Wherever I go, I take photos to use at a later date”.
  • Make the newsletter about the members and carers, it is for them after all! For example, include special birthdays (with permission) and pictures of the members doing activities (again, with permission).
  • Don’t be afraid to ask for feedback. If there are bits people don’t like, it’s better to find out and adjust or replace them, rather than risking putting people off!

What feedback have they received about newsletters?

It can at times be slightly disheartening to put a lot of effort into producing newsletters and not hear anything more about them, so it’s always really positive when people do give a bit of feedback. Comments have included that the newsletter is a “great read” and it’s “good to see everyone” in the photos. Members and carers have also found that going through the newsletter is “a great way to spend quality time together”.

As reported in a previous blog, one family member said “You all do an amazing job with the newsletter etc.” When one manager was struggling to come up with content and considered stopping their newsletter, the positive comments they received from their readers encouraged them to continue as they realised how valued it actually was. People look forward to ‘their’ newsletter arriving, which has been an especially important slice of normality during lockdown.

So we’d like to say thank you to everyone out there who is putting time and effort into producing some amazing newsletters. You are very much appreciated. If you’re stuck for ideas or just want a bit of inspiration, have a look at the Useful Resources page on this blog site, where we’re starting to pull together examples of newsletters from different Meeting Centres which they are happy to share with others.

SCI-Dem resources – what are they and why should I take a look?

Our SCI-Dem project ended recently, but has three resources which are now available for everyone to use. Although it’s got its own blog site we thought we’d give a quick overview of the resources here to help spread the word as we think they’re worth knowing about.

Can you remind me what SCI-Dem is about?

SCI-Dem stands for ‘Sustainable Community Interventions for people affected by Dementia’. The project carried out a realist review, which in very basic terms means it gathered together a wide range of information about the problems faced by groups that meet regularly to support people affected by dementia. This information was then analysed to work out how it all linked together and identify successful strategies and good practices that help groups to be sustainable in the longer-term.

What are the resources?

Three booklets were produced as a result of the project, summarising the main recommendations from the evidence captured during the realist review. Each is tailored for a different audience:

  • Booklet 1 for people who are planning or running groups and activities – Keeping community groups and activities going – Sustainable Community Interventions for people affected by Dementia: Recommendations for practice from the SCI-Dem Project
  • Booklet 2 for commissioners and policy-makers – Sustaining community groups and activities for people affected by dementia: Recommendations from the SCI-Dem Project for commissioners and policy-makers
  • Booklet 3 for members of groups and clubs – Helping your community group or activity club to keep going strong: Suggestions for members of groups and clubs from the SCI-Dem Review

While each booklet is different depending on the audience, the underlying structure relates to eight key areas that make community-based groups and activities sustainable:

  • Getting members
  • Keeping members
  • Getting staff and volunteers
  • Keeping staff and volunteers
  • Getting funding and income
  • Keeping funding and income
  • Getting the support of other organisations
  • Keeping the support of other organisations

How will the resources help me?

Running a group or activity for people affected by dementia can be challenging and keeping it going long-term can be even more so – especially in a climate where community awareness and resources can vary dramatically from place to place, where funding is hard to come by and often short term, and where there is no standard, formal support for such groups.

There is no “silver bullet” to solve these problems, but part of the battle is raising awareness of the challenges that such groups face, and why. Much of what is in these booklets will be familiar to those working with such community groups – the problems groups face in keeping going are much talked about, but have received almost no direct research attention. These booklets aim to draw together and map out all of the issues that groups and activities commonly face in keeping going, and to go one step further, making recommendations about how to avoid such pitfalls and maximise chances of success, informed by the evidence “out there”.

For those planning and running such groups, we hope these booklets will provide both practical information that people can apply, as well as perhaps raising some issues they may not have considered to help them navigate the rocky road to establishing a stable and sustainable group.

For commissioners and policy makers, these booklets aim to provide food for thought regarding things that might be worth considering when making decisions that could impact the sustainability of provision to support people living with dementia in the community.

For people attending such groups, we hope these booklets will give them a few ideas for how they might help support their group to keep going strong – and we hope it will give people an idea of the research going on with such groups and what it says, for those interested.

Ok that sounds good, where can I get a copy?

The good news is that they are freely available for anyone to download from the ADS website, or you can get a copy using the links below:

For more information:

SCI-Dem Project online blog: scidemreview.wordpress.com

You can contact Thomas Morton who was the Research Associate on the project.

Email: t.morton@worc.ac.uk    

Twitter: @ThomasMortonADS

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow

We didn’t risk assess for this!

On Friday 26th March we held the second in our series of monthly UK Meeting Centres Support Programme webinars, in lieu of a face-to-face conference. This time the focus was the impact of the Covid-19 pandemic on how Meeting Centres have been able to operate. A key aspect of Meeting Centres is regular face-to-face contact, but the pandemic meant there was a need to rapidly implement innovative ways to support members and families at home.

After a welcome and introduction by Professor Dawn Brooker MBE, representatives from the four demo site Meeting Centres were invited to join a conversation about the challenges and risks they have faced in the past year, and how they hope to move forward. They were:

What happened during first lockdown?

Phillipa began by acknowledging the huge amount of time and effort put in by those working at Leominster Meeting Centre to continue to provide support through the first lockdown. While initial concerns centred on wanting to provide protection for members and their families as well as staff, the financial stability of Leominster Meeting Centre was also an issue as it is funded through a combination of grants, local fundraising and membership fees, all of which could be affected by lockdown.

Everyone wanted to continue to support the members and carers and prevent further social isolation, so alternative options for providing support were considered. The team started by using WhatsApp and Facetime to contact people, with garden catch-ups where possible. Zoom sessions were also set up for group activities, and while these appeared to be the most effective method, they could also be difficult for some members to engage with. The frequency of existing newsletters increased, focusing on providing ideas of things to do, and the Meeting Centre also subscribed to the Daily Sparkle. It was acknowledged that this package of support was not necessarily an adequate substitute for the Meeting Centre, but reflected what the team was able to put in place at the time. Positive staff attitudes and their willingness to continue providing as much support as they could were key to Leominster Meeting Centre operating in any format during the first lockdown.

Graham reflected that Kirrie Connections had made the decision to close its doors before start of the first lockdown due to concerns about it being too late, so had a bit more time to plan ahead for remote delivery before restrictions came into force. They were able to carry out a technology audit to see what devices families had and the types of platform they were comfortable using. Additional funding was also secured to provide devices for those that needed them, and also to support the printing of hard copies of newsletters to match people’s needs and preferences. Graham and his team explored the suitability of different types of device for different members depending on their abilities and the support available to help them use the device in their own homes. He also praised his staff team for the huge amount of effort that they put in.

How have you managed to support people’s social engagement?

Like Graham, Deborah and her team also took the decision to close their Meeting Centres earlier than the official lockdown, but maintained social engagement by setting up regular ‘buddy’ phone calls between members and staff. They also set up a weekly virtual Meeting Centre, with the first session being held on 26th March 2020. One year on, it is still going strong. In Powys they have been learning from their members and carers, recognising that they have to adjust to a whole variety of changes on a daily basis. They were surprised how unflappable the members and carers were as they just ‘rolled with it’, so took their lead from them. Further efforts to maintain social connections included garden visits when possible. Their approach is to try to incorporate the principles of the ‘Adjusting to Change’ model (on which Meeting Centres are based) into all of the interactions that they are able to have with their members and families.

How have you supported people practically?

Jude presented a slightly more mixed picture from Droitwich Spa Meeting Centre, as some of their staff were furloughed while others continued to support their members and carers. They have not provided virtual support, but have been carrying out ‘well-check’ calls and garden visits, as well as providing activity packs. They were able to reopen between September and December 2020, and are looking forward to opening again in April. They have remained in regular contact with carers throughout, and recognise that reopening will be yet another change that their members and carers will have to contend with.

What has been the impact on members and carers?

Everyone at Leominster Meeting Centre has missed social contact, and it’s been seen that carers and family members have found lockdown particularly difficult as all caring responsibilities have fallen on them. Their normal options to obtain even a brief relief from caring have not been available. However, Leominster Meeting Centre has been able to reopen with limited numbers since the end of the first lockdown and has remained open ever since. In some respects it has been slightly easier as they have their own premises so are in full control of the cleaning and other safety measures. They have also received funding to support them opening 5 days per week, but even with the extra day people are still not able to come as often as they would like. It has also not been possible to allow carers to come to the Meeting Centre due to restrictions on numbers, with the focus being on members attending instead. The inclusion of and engagement with carers is one of the Meeting Centre’s strengths, so they have had to look at alternative ways of providing that support. It has also been recognised that even after restrictions are lifted, some people won’t be returning to the Meeting Centre as their dementia has progressed, in some cases more rapidly that would have expected in ‘normal’ times.

Lockdown has highlighted just how reliant members and carers have become on the support provided by Kirrie Connections Meeting Centre, so when that wasn’t available it led to faster decline in people’s conditions. This also had a knock-on impact on carers. However, Graham has seen a positive impact as a result of their remote working. They have been carrying out 1-1 work with people who do not like or may not cope well with group sessions, or get along with different technology. This way of working, together with the carer support groups they’ve been running, have made it possible to get to know carers on a deeper level than previously. When the Meeting Centre was physically open, many carers used it as a form of respite and did not necessarily engage with the staff and activities as much as hoped. The relationships that have been built during the pandemic, even with carers and families that the staff have not actually met in person yet, will hopefully result in a different dynamic and everyone is looking forward to attend the Meeting Centre when they are able.

How will the pandemic impact on the sustainability of Meeting Centres?

In Powys, their main funding for Meeting Centre delivery has been from the National Lottery. They were reassured to find that they could still use that funding to deliver support in other ways when face-to-face sessions were not possible. Due to numbers and amount charged, Powys does not generate enough money through their membership fees for their Meeting Centres to be sustainable, so they are still looking at applying for grants from multiple funding sources. When they do return to face-to-face delivery there is an option to increase membership fees, but it may still not be enough to become sustainable.

What have been biggest risks and how have you managed them?

When it briefly reopened, and ahead of reopening in April, Droitwich Spa Meeting Centre has been following all relevant government guidance, but has been having a lot of discussions about risks, in particular the need to balance the risks of opening against the risks of not opening. One of the benefits about being based at the rugby club is that the room they use is a large open space with plenty of windows, and access to outdoor spaces. They’ve done the necessary health and safety assessments and put a variety of measures in place. For example, there are temperature checks for everyone coming into the building, and procedures have been developed in case anyone is found to have Covid. Luckily, during its period of reopening, these procedures were not required. Staff wear masks and members are encourage to where possible, with visors being offered as alternatives. The team has been great at exploring alternative options for activities to limit contact. Social distancing is maintained by having members at separate tables with their own craft packs to minimise cross-contamination, but it was acknowledged that it has been difficult as this does not fit with the Meeting Centre ethos. It has not been the same as the normal Meeting Centre, but was better than expected.

What are going to be the main challenges over the next few months?

For Leominster, one challenge will be around rebuilding member numbers. Funding applications are also underway. There is a lot of uncertainty about the future, such as the possibility of another lockdown, so plans are being developed to cope with further restrictions. There will also be a challenge around getting people used to the idea of getting out and about and engaging with others. Overall, the main focus will be on re-establishing, moving forward, and getting back to the Meeting Centre ethos.

Kirrie Connections Meeting Centre has moved to a different premises in the past year, so they plan to carry out some building work on their new premises before reopening. However, it is hoped that face-to-face work can start relatively soon. In the meantime, they are just about to start running a weekly health walk which will help to get people back outside and engaging with others. Financially, they have decided not to include membership fees and fundraising in their budget as they are so unpredictable, so will be focusing on grant funding instead. They had hoped to become self-sustaining, but recognise that it’s not possible at present.

Powys has seen a change in membership during the past year, losing some but also gaining new ones. They have engaged with a wider range of people during lockdown as more people have been seeking some form of support, but a concern is how previous members will transition back to face-to-face interactions. They will be providing 1-1 support from befrienders to help people feel more comfortable being out and about again, for example going with them to a shop, just to get them used to being around people. An important factor is keeping everyone informed about what is going on and what any plans for activities or reopening will be. However, the main concerns relate to the financial situation.

Droitwich Spa Meeting Centre receives 50% of its funding from membership fees, but it is expected that numbers will be reduced when they reopen, so they have to work out how that will balance. There is also uncertainty about whether they will be able to get back to previous member levels. Unsurprisingly they are also considering different options around funding and sustainability.

After hearing from the four Meeting Centres, there was discussion about a couple of points arising from the conversation. One was around the different types of device available, with examples shared including:

A second discussion topic was around whether the lack of people being diagnosed with dementia during the past year could have an impact on Meeting Centres. Initially there may be smaller numbers of people able to access Meeting Centres due to the need for a diagnosis, followed by a potential influx which might overwhelm capacity. It was an interesting discussion and no real answer as we need to see how things pan out, but if the past year has shown us anything, it’s that Meeting Centres are flexible and adaptable. However, any additional staff required to support extra members would require suitable funding. As with most things, funding is an issue.

Thanks to everyone for sharing their views during this webinar, and we hope you found it interesting and inspirational.

A recording of the webinar is also available.

The next webinar will take place on Friday 30th April at 12noon. ‘You’ve come to the right place’ will be looking at different locations for Meeting Centres and different approaches to make them ‘dementia friendly’. You can register to attend for free on our website.