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Meet our new Meeting Centres PhD student

This week’s blog is an opportunity for our new PhD student Nathan Stephens to introduce himself. He will be looking at the impact of a strategic regional approach to scaling up Meeting Centres for people affected by dementia. Over to you Nathan:

A few weeks into my PhD and some things are beginning to make sense, others not. But a marked difference from week one (now a little blurry), which in truth was a blend of utter jubilation and deflation – “I am ‘virtually’ here…”. This provoked thought: What about those without access to the internet? What about the roughly 60% of people attending Meetings Centres that this represents? I’ll return to this later.

Anyway, it was about time I ‘formally’ introduced myself and hopefully provide some insight to “who I am”, and “what I’m about”. A lover of phenomenology, I feel it is important for the researcher’s presence to be acknowledged. After all, I am trying to make sense of someone making sense of the world, and if you can make sense of me, perhaps you will make sense of the research. If that makes sense? But firstly I would like to say a sincere thank you to everyone at the Association for Dementia Studies (ADS) and wider for the very warm welcome. Regardless of why you’re joining a team, it is a daunting experience. I think/hope a combination of this, and Shirley (Director of studies) and co.’s robust induction programme has coerced me into the team. Having this opportunity to peek behind the academic curtain and witness the plentiful work going on, and all with a key drive to have a tangible impact, gives me a huge sense that the next three years are going to be some of my best!  

So what do we know?

Well I am ‘here’, and I have begun the PhD journey. However, this isn’t the only journey. I am an informal caregiver for my Nan, Margaret (pictured below with a painting I did) who is living with dementia. This is my second personal experience with dementia and it doesn’t get any easier with time. The first is a huge reason for me being at ADS today. When my Grandad got diagnosed in my late teens, I was benighted to the condition, so much so I would render it epiphanic. I became alarmed at the lack of innovative attempts in the way of preventing and alleviating symptoms, engrossed by the possibility to provide tailor- made exercise programmes, and inspired to fulfil my nuanced purpose to improve people’s lives (noteworthy: at this point I had only visited one nursing home). Sufficed to say, I never did get my exercise idea off the ground, but it led me to academia – an indirect cause, but one with emergent effects (you can tell I have been reading evaluation literature). Two degrees, one dodgy knee, and a broad array of jobs later, I have sort of ended up where I left off, in a roundabout kind of way.

So where are we going?

Well you would have thought (as did I before joining ADS) that Covid would have put the brakes on community-based initiatives, but in fact we have seen a surplus beyond the surplus value of meeting centres. The community spirit ethos bred into Meeting Centres has transpired and grown into an adaptable virtual/remote machine that has continued to meet people’s needs, and now entering a post-Covid epoch, will have an even fuller arsenal.

With a plethora of support, an intranational evidence-base, and growing global infrastructure, Meetings Centres present as one of, if not the sexiest (always wanted to use that word) approach to building real community resilience. To ground this is the rhetoric of Boris – we need to ensure Meeting Centres are the building blocks of the government’s ‘Build Back Better’ agenda to reducing inequalities, alleviate public sector services, support communities to flourish, and integrate the welfare system.

So where do I/it fit?

My professional and personal experience, that according to theory renders me an “expert by experience” in the field, has helped contextualise the value of Meeting Centres, and understand (without actually attending one) why they are such a worthy cause. The Worcestershire Meeting Centres Support Programme, which through a novel strategic regional approach is set to be the largest implementation project yet, has the opportunity to be a blueprint for nationwide dissemination of Meeting Centres; championing efforts to fill the inequitable gap that currently exists in post-diagnostic support. I have the job of researching this, as it develops, and hopefully in 3 years providing a thesis that demonstrates the impact and value of a regional approach. Currently I have little more than a web browser with that many tabs open, I open a new browser each time as it’s overwhelming, and a desk full of scribbles that again amount to the same problem as the former. But, I think there are a few signs in this blog as to where the research might be heading, and to be the individual heading that is an absolute dream and I cannot wait to share the journey with you over the coming weeks, months and years.

Ta,

Nathan.

Connect with Nathan on twitter @NathstenW

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

Meeting Centres: Our journey so far

The first in our new Meeting Centres webinar series took place 26th February and was a double act between Professor Dawn Brooker and Dr Shirley Evans, who took us through what’s been happening so far regarding Meeting Centres and how we’ve got to where we are now.

This webinar series runs throughout 2021 and replaces the conferences we originally had planned as part of the UK Meeting Centres Support Programme as it looks like getting together in person isn’t going to be possible for a while yet. The eight webinars will follow on from each other and build up over time, with this first webinar helping to set the scene.

First off, we looked at an overview of previous research projects that the Association for Dementia Studies have completed which have contributed to our work on Meeting Centres, plus our current work around Meeting Centres. Even for those of us who do this every day, it was a useful reminder that it’s not just the UK Meeting Centres Support Programme going on, but there are also a number of related projects underway.

Rather than go into what Meeting Centres are, the audience was directed to our website where there are lots of resources available such as the Essential Features of a Meeting Centre. Instead, there was an overview of the UK Meeting Centres Support Programme, which is aiming to develop a backbone of Meeting Centres across the UK to help build momentum and visibility, making it easier for new Meeting Centres to come on board in the future.

Before exploring our progress with regards to the UK Meeting Centres Support Programme, we of course had to acknowledge the impact of the Covid pandemic. However, while it has affected everyone and made it difficult for emerging Meeting Centres to get started, there has still been a lot going on, as can be seen in previous blog posts for:

There has also been a lot of interest and activity across the UK, with a lot of possible developments on the horizon.

The UK Meeting Centres Support Programme, funded by The National Community Lottery Fund, has four main targets and despite the pandemic we’re making good progress towards all of them. We’ve also been doing a lot of work around dissemination to get the word out about Meeting Centres and raise their profile. Our efforts are gaining good traction now, and new journal article about the support provided by Meeting Centres during lockdown has just been accepted, so hopefully that will be available soon.

A key part of the work being undertaken at the moment is providing training and education for those looking to deliver a Meeting Centre, aimed at staff and volunteers who may or may not have prior knowledge of dementia or the Meeting Centre model. As a result of the pandemic, this has had to shift from being a two-day course delivered in person, to an online course run across five weeks. Each week ‘students’ have a combination of activities and learning to do in their own time, and a live online session to discuss a topic and share ideas with their fellow students. It was great to have some of our current students on the webinar providing positive feedback in the chat – we didn’t pay them, honestly! The next course is scheduled for the start of May, so there’s still plenty of time to sign up if you’re interested. It’s also currently free to attend, as it’s funded as part of the UK Meeting Centres Support Programme.

Outside of the UK Meeting Centres Support Programme there have been three key developments recently. Firstly, the Worcestershire Meeting Centres Community Support Programme has received £540,000 from a Worcestershire County Council business rates pilot to help establish nine Meeting Centres across Worcestershire. Excitingly, the first three Meeting Centres have just been awarded funding, and the next round of applications closes 31st March. Secondly, Nathan Stephens began his PhD studentship with us at the beginning of February, looking at the impact of a strategic regional approach to scaling up Meeting Centres. His PhD is match funded by the Shaw Foundation and the University of Worcester, and there will be an opportunity to hear from him at the webinar in October – we thought we’d let him settle in first! Thirdly, a new research project called ‘Get Real with Meeting Centres’ has just started, which is going to be looking at the findings from the SCI-Dem project and the sustainability of Meeting Centres over time. There has recently been a blog about this, so for further information please have a look.

Sustainability is a wider issue for consideration during the final year of the UK Meeting Centres Support Programme, and we’re looking at it from multiple aspects. These are shown in the image below, but a couple of key points are interlinked, namely should we be concentrating on going for more Meeting Centres to get a better geographical spread, or should we focus on the quality of existing Meeting Centres? As with most things, it’s a case of balancing quality and quantity.

The webinar concluded with a question and answer session, which had good engagement from the audience.

The next webinar will take place on Friday 26th March, titled ‘We didn’t risk assess for this!’, and will be looking at how existing Meeting Centres have responded to the pandemic. You can register here.

If you would like to (re)watch the webinar, a recording is available.

Get Real with Meeting Centres

There’s a new project underway called ‘Get Real with Meeting Centres’ which follows on from work on the SCI-Dem project. Blog posts relating to it will appear on the SCI-Dem/Get Real site, and there’s a new post looking at the start of the project where you can find out what it’s all about and who is involved.

If you’re on social media, keep an eye out for the hashtag #GetRealStudy

Dementia Matters in Powys – there’s a lot going on!

On Friday 29th January Deborah Gerrard from Dementia Matters in Powys used our final Meeting Centres ‘Bring Your Own Lunch’ session (more on that later) to tell us about the huge array of support that they’re providing during the pandemic. In normal times, Dementia Matters in Powys operate four regular Meeting Centres in Brecon, Llandrindod Wells, Newtown and Ystradgynlais.

When faced with having to operate in the new world of Coronavirus, stopping their support was not an option. While their doors closed in a physical sense, the Dementia Matters in Powys team of staff and volunteers have been working hard to keep the Meeting Centre ethos going, and maintain contact and support with their members and carers.

One of their main activities is running a virtual Meeting Centre session once a week, with a different theme each week. Anyone can suggest a theme, which provides a focus for the session. Each session follows a similar format, starting with nature watch where people are encouraged to share stories and photos from their gardens or walks. Sessions end with a singalong which everyone enjoys. The main issue faced is relatively low numbers, which is exacerbated by the rurality of the area and the fact that not everyone is able to use technology to join in. However, those who do attend the virtual Meeting Centre thoroughly enjoy it.

A wide variety of other online groups and sessions are offered, with some being led by staff members and others being run by volunteers with staff support. Many have been created in response to needs raised by the members and carers themselves, and although the group sizes might be quite small, they are definitely meeting people’s needs. The groups include:

  • Virtual carer support sessions three times a week. These are sharing (or swearing?) sessions where carers feel comfortable to discuss their issues and concerns, and generally offload.
  • These are supplemented by monthly carer information sessions where wider professionals are invited along to share relevant information with the carers.
  • Young Onset Dementia support sessions, with parallel sessions for carers of people with Young Onset Dementia.
  • ‘Cuppa n compost’ sessions specifically for men living with dementia
  • Welsh language dementia support sessions
  • A monthly ‘knit n natter’ group (see image below)
  • Once a week sessions of ‘wiggle with a giggle’, which lead people through armchair dance movements that link with the themes of the virtual Meeting Centre sessions.

Dementia Matters in Powys are also very conscious of supporting those people who cannot attend online sessions, so provide other forms of support too, including:

  • Telephone contacts, with staff and volunteer telephone buddies
  • Emails, letters and cards – particularly for special occasions – to keep in touch with people
  • The regular ‘Round up’ bulletin is posted out to everyone
  • When restrictions allowed, the team carried out garden visits and encouraged people to get out for organised walks in small groups
  • One volunteer offered a garden tidy up service to help people who weren’t able to do the work for themselves, which can make a big difference for people
  • Sending out activity and pamper packages for members and carers (see image below).

One of the most recent initiatives we heard about was ‘Winter games’. The aim has been to provide support and meaningful occupation during the winter months when people are more likely to be indoors. People can choose three activities, such as painting by numbers, making wooden models, embroidery and jigsaws. Completing these activities has encouraged interaction between family members, with people working together and creating new shared memories. Hopefully there will be an exhibition at some point in the future to share everyone’s wonderful creations. Dementia Matters in Powys is hoping to do a ‘Summer games’ in some form, and is planning to repeat the Winter games next year regardless of the pandemic situation, as everyone spends more time indoors during the winter.

The number of people accessing support has increased during the pandemic, but Dementia Matters in Powys still has the capacity to support more. Their pool of 20 volunteers has proved invaluable, and everyone has adapted very well to the new ways of working. Some sessional staff have been employed to facilitate some groups, and a new sessional role was created for a digital connections officer to get more people online.

Unfortunately, funding casts a bit of a shadow, as the current funding for Dementia Matters in Powys is due to end in September. The priority for Deborah is therefore to get more funding in place to enable them to continue providing support, and to take forward their range of exciting ideas and plans.

During a question and answer session, there was a discussion around people paying for sessions. The majority of existing members and carers continued to pay for services when the Meeting Centre and associated groups moved to online delivery, and Dementia Matters in Powys have been asking for £10 per month towards the sessions to reflect what people may have been paying previously.

In terms of the sessions themselves, there has been quite a variety in terms of who attends which sessions. Some people only attend specific sessions, while others attend multiple different sessions. There is a desire amongst the carers for the virtual carer support sessions to continue even after face-to-face sessions become possible again, as carers have reported feeling more supported in virtual groups. Dementia Matters in Powys is also hoping to continue with some of the special interest groups like ‘knit n natter’ and ‘wiggle with a giggle’, as it can actually be easier for some people to attend online groups. Rather than having to potentially struggle to get people ready and physically travel to a group, having the group essentially come to you in your own home where people may feel more comfortable and less anxious can be a bonus. An additional ‘open door’ online session is also being considered, acting as a regular drop in space that anyone can come to when they have something that they wish to discuss.

So thank you to Deborah for sharing what’s been going on in Powys, it was a very inspiring session. Connect with Dementia Matters in Powys on twitter @DementiaPowys

As mentioned earlier, this was the last Meeting Centres ‘Bring Your Own Lunch’ in its current format. From February, we will instead be running a series of monthly webinars focusing on different topics of relevance to Meeting Centres. The first one takes place on Friday 26th February and you can find out more information on our website.

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

Connect with Meeting Centres on twitter @MeetingCentres

National Reference Group Meeting

On a sunny but frosty morning (not that it really matters when you’re in a virtual meeting), 26 of us got together on 26th November for the fourth National Reference Group, which should have taken place in May but was delayed – like most things – due to Covid.

After an initial welcome and housekeeping by Professor Dawn Brooker, she gave a recap of the National Reference Group meetings so far and what topics have been covered at them. Sustainability of Meeting Centres was the focus of this latest meeting, posing questions around the need for a geographical spread of Meeting Centres and considering which was more important, maximising the quality of support in a smaller group of Meeting Centres, or maximising the number of Meeting Centres. There was also recognition of the impact of Covid on Meeting Centres and the Meeting Centres Support Programme project overall. Existing Meeting Centres have had to close their doors, but have still been providing some level of support to members and carers, mostly in a virtual capacity. Unfortunately, the project has lost a lot of ground in terms of getting new Meeting Centres up and running, and early adopters have been hit in the early stages of their planning and development.

Highlights from the National Lottery Fund 2nd Year Report indicated that in spite of Covid, the project has been progressing, and we’re still on target to open 15 new Meeting Centres during the three years. Valuable information was collected during lockdown to demonstrate the positive impact that Meeting Centress have still been able to have. Reassuring to see that it’s still possible to provide support that meets the different elements of the adjusting to change model – hopefully there will soon be a journal article to share with you.

Nicola Jacobson-Wright took over to present on the training, which required a rethink to redevelop it from face-to-face to online delivery. We’ve risen to the challenge and have come up with an exciting 5-week course containing a mix of activities, exercises and videos for students to watch and undertake in their own time, and live online sessions to get together with fellow students.

Dr Shirley Evans then

let the group know about some of the significant developments that will be taking place over the next few months.

  • PhD studentship to look at the impact of a strategic regional approach to scaling up Meeting Centres – due to start Feb 2021
  • NIHR funded research for a two-year project to focus on the ‘Sustaining locally-driven social care for those affected by dementia: A realist evaluation of successful Meeting Centres’

After a quick break, Thomas Morton presented the findings from the SCI-Dem project, which has been looking at sustaining community-based groups and activities for people affected by dementia. The work brought together the knowledge and experiences from a wide range of research and different groups and organisations as part of a ‘realist review’. There are too many recommendations to go into here, but they covered the following key areas:

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

Some great discussions followed, picking up on points around travel and funding, and there was agreement that the findings from the SCI-Dem project is very valuable and resonated with a lot of people.

This led nicely into a wider discussion around the sustainability of Meeting Centres in the UK to pick up on some of the questions posed at the start of the session.

In terms of quality or quantity, there was a strong feeling that getting something up and running was preferable than having nothing, and there is always the opportunity to build on and develop a service over time. In parallel though, having a few high quality Meeting Centres acting as demonstrator sites is also important, indicating that it doesn’t have to be ‘either or’, but rather a two-pronged approach. However, this does require ensuring that existing Meeting Centres continue to be funded as well as getting new ones off the ground. There was also recognition that the wider impact of Covid is still unknown, especially in terms of reduced funding opportunities and cuts to existing services more widely.

Despite being an online meeting, there were still good opportunities for questions and discussions throughout the meeting, with lots of ideas being shared within the group. It was also still possible for people to network and make connections with others – the chat was very active – so hopefully we may see a few new partnerships and Meeting Centres as a result of these emerging links.

Kirrie Connections Meeting Centre – To lockdown and beyond!

A small but perfectly formed group of interested parties attended the November ‘Bring Your Own Lunch’ where Graham Galloway from Kirrie Connections Meeting Centre brought us up to date about the work that they have been doing over the past few months.

One of the first things Kirrie Connections Meeting Centre did at the start of lockdown was undertake a tech-audit to find out what members and carers currently had and, just as importantly, were able to use. A lot of work – and additional funding – went into improving everyone’s tech skills, which has definitely paid off, but it was also important to recognise when other forms of support were more appropriate. This resulted in a variety of different approaches including 1-1 Zoom calls, group Zoom sessions, phone calls, and newsletters.

Getting input and content from the members has been valuable for the four(!!) weekly newsletters being produced, helping people to feel connected and part of the community. Kirrie Connections Meeting Centre has also found the time to be part of the Community Makers work, and found that a useful initiative to get involved with.

Kirrie Connections Meeting Centre are also in the process of registering to become part of ‘Health Walks – paths for all’, taking inspiration from work being done in Dementia Friendly Prestwick, and there has been good initial interest in this with new volunteers coming forward. The physical health of both members and carers has been affected during lockdown, making such initiatives all the more important, especially during the winter months. Pre-Covid, Kirrie Connections Meeting Centre were involved in a pilot project with The Haven Centre in Forth to create strong dementia supportive communities where families affected by dementia are connected to specialist local support. The aim was that by doing so, it would help families and communities become better able to manage the emotional and practical impact of dementia, and reduce isolation and loneliness in rural areas. The way they worked together obviously had to change during lockdown, but the project actually developed into much more, with counsellors from The Haven supporting family members who were going through a really difficult time. The final aspect of the work for Kirrie Connections Meeting Centre is that they are currently producing wellbeing packs, tailored for individual members and carers. They’ve had good input from local businesses donating items and services, with interest snowballing beyond initial expectations. Kirrie Connections Meeting Centre will be holding a virtual Christmas party in December, so the packs will be sent out to support this.

If that wasn’t enough, Kirrie Connections Meeting Centre is currently in the process of moving location! They’ve (fingers crossed) bought a new building, with plenty of plans for how to make improvements including creating a working garden, offices and potentially a shared community space. As Graham pointed out, we won’t be in lockdown forever, so they are very much planning for the future.

As the following quotes illustrate, the vast amount of work being done by Graham and his team at Kirrie Connections Meeting Centre has very much been appreciated and made a difference:

“The ladies from Kirrie Connections have been so good and have kept the contact going with us. There have been days when [wife] really didn’t feel up to chatting on Zoom but each time she was so glad when she did. You all do an amazing job with the newsletter etc. and have been able to so effectively reinvent your service in this time of lockdown” (family member)

“This has been a difficult and challenging year for everyone, and I feel that dementia sufferers and carers have been inevitably left behind. Social Work have done their best, but support has been patchy. I have been so glad of the unfailing support of really local resources like Kirrie Connections and Daycare outreach. You have all been absolutely wonderful. Gold stars for you all!” (family member)

Almost inevitably, discussions followed around funding and sustainability, and Graham said that applying for funding grants forms a large portion of his work at the moment, and he currently has around 20 grants on the go.

If you would like to get in contact with Graham at Kirrie Connections Meeting Centre, you can find them on social media: Twitter @kirrieconnect and Facebook @KirrieConnections. A recording is also available for people who missed the BYOL – Link to recording

Please note that there will be no BYOL in December due to the Christmas break, but they will return in January when Deborah Gerrard from Dementia Matters in Powys will be sharing the work they have been doing.

Droitwich Spa Meeting Centre Reopening September 2020

For the October Meeting Centre lunchtime webinar, Caroline Savage – Social Inclusion & Well Being Manager for Age UK Herefordshire & Worcestershire – gave us a whistle-stop tour of the work that has been done to enable Droitwich Spa Meeting Centre to reopen to members in September.

The Meeting Centre takes place in Droitwich Spa Rugby Club, which had a large main room providing plenty of space for social distancing measures to be put in place. During lockdown the Meeting Centre staff had noticed a decline in the emotional and mental wellbeing of both the members and carers, and indeed three members have had to go into long-term. Contact with members indicated that people were keen to return to the Meeting Centre, and this was confirmed by a questionnaire that was sent out to members and carers back in July.

Due to the space available, the Meeting Centre has been able to reopen three days a week for approximately 14 members per day, which is a reduction on normal capacity. Before people arrive, staff set up the room to provide each member with their own table, with appropriate space between them. Windows and doors are opened to improve ventilation, and staff are provided with gloves, masks and/or face shields and aprons. The Meeting Centre does not provide transport, but encourages members to wait outside when they arrive until they have had their temperature checked by staff and can safely enter the building. Hand washing or sanitising is promoted on entry, with regular sanitising being encouraged throughout the day. Families are asked to provide a plate and mug for their relative to use while they are at the Meeting Centre to reduce the need to share crockery, and these go home with the members at the end of the day.

Cross-contamination is also minimised by having a separate bag of activity items for each member, with items being cleaned before they go back in the bag. Several measures regarding hygiene and PPE (personal protective equipment) have been put in place, with PPE for staff being provided by Age UK Herefordshire & Worcestershire. Members are reminded to wear masks when necessary, but this has not really been an issue. If staff feel that a member wouldn’t be able to comply with social distancing measures or has behavioural challenges that could have an impact on hygiene safety for the wider group, they would initially require a carer to attend the Meeting Centre with them, but may ultimately be asked not to come in order to reduce risk.

As can be seen in the image below, the Meeting Centre also has a clear procedure and measures in place for dealing with potential COVID-19 symptoms amongst members. All members and staff have regular temperature checks which may help to keep an eye on possible symptoms developing while they are at the Meeting Centre.

Finally, Caroline reported on measures to try and minimise cross-contamination and potentially spreading germs. These included encouraging members and carers to pay via standing order rather than using cash, and regular cleaning routines. The rugby club itself was deep-cleaned before the Meeting Centre reopened, and is cleaned on non-Meeting Centre days when it is used by other people. Age UK Herefordshire & Worcestershire are responsible for cleaning after the Meeting Centre has ended for the day.

Following the main presentation, Caroline was joined by Anne Montgomery, the Droitwich Spa Meeting Centre Supervisor, to answer questions and provide insight into how the reopening has gone.

From speaking to carers and family members, Age UK have been reassured that they are happy with the measures that have been put in place, and do not feel that further measures are required. It was noted that one member has not returned yet as they personally do not want to risk mixing more generally in public, which is not specific to the Meeting Centre. A couple of other members have also not returned as they require more assistance than can currently be provided with social distancing in place. Members have generally been good at wearing masks, and staff have only had to provide a few spares since the reopening.

There was recognition that a lot of work was involved in the reopening, but it has been worth it. Age UK are pleased that they took the plunge as they can see that it is benefitting both members and carers.

Members struggled during lockdown, and as many were not able to use online platforms such as Zoom they were quite isolated. The ones who have been to the Meeting Centre since it reopened have all come back multiple times, sometimes more than once a week, suggesting that they feel comfortable and happy. However, members are still missing being closer to each other. One new member has also joined the Meeting Centre since it reopened, with a couple more hoping to join soon.

Carers are able to get some time on their own, which they missed out on during lockdown. Many stopped receiving help from professional carers as they did not feel safe with them coming into their houses, which added to the caring responsibilities. The Meeting Centre is finally able to provide the break that they badly need.

Anne is still contacting some members via phone calls outside of sessions, as she has been throughout lockdown. She will also do visits if required, but would not go into people’s houses during these. Again, garden visits were also carried out during lockdown. All carers and members are able to contact Anne at any time if they have problems or concerns.

At the Meeting Centre, staff are doing most of the activities that they would normally do. The only activities they have stopped for now are those where multiple people need to touch the same items, such as playing board games. Some activities have had to adapt though to minimise the number of people in the Meeting Centre, for example yoga sessions are being run over the internet via a big screen so that the yoga teacher does not have to physically come in.

Overall, there was a general feeling that the webinar contained lots of useful information, advice and food for thought for people to take away and apply to their own services.

A recording of the webinar can be found here.

Leominster Meeting Centre: Re-opening and looking ahead

Despite COVID-19 restrictions tightening again and the weather turning chillier, we made the most of a sunny Friday lunchtime to try and be positive by looking at how Leominster Meeting Centre has been able to re-open to support members with dementia and their family carers. As the Meeting Centre was open at the time of the webinar, two of their Trustees Shirley Evans and Phillipa Bruce-Kerr did a double act on behalf of the manager Joy Valentini.

After providing a brief history of Leominster Meeting Centre, which has been open since Feb 2016, Shirley gave an overview of how the Meeting Centre had been operating back in early March 2020. In ‘normal times’ (remember those?) Leominster Meeting Centre was open four days/week, supporting 30 pairs of paying members and family carers. They were also embedded in the local community and involved in the UK Meeting Centres Support Programme, and everything was looking good.

Lockdown hits

When lockdown began on 23rd March, the big question facing Leominster Meeting Centre was ‘What do we do now?’ Obviously they couldn’t stay open, but they didn’t want to abandon their members, so they reframed the question to be ‘What do we have to do to keep going, but in a different way?’ As can be seen from the image below, it turns out that they could still provide significant support but their way of working also changed significantly.

Re-opening

Leominster Meeting Centre re-opened as much as it could on 4th August. It took at lot of effort from all involved, and they had to put a lot in place to make it safe for members and staff. These were big changes for a small organisation, but they got there and were able to welcome small groups of members back to the Meeting Centre. Just when they’d got into the swing of things, the new restrictions meant that things had to change again. Like everyone, Leominster Meeting Centre was constantly having to adapt whilst trying to be there for as many people as possible.

Key messages

Some of the key messages emerging from what has worked for Leominster Meeting Centre included:

  • Good hygiene practice, which is actually a lot wider than COVID-19
  • Preventing infection transfer between people either directly or via surfaces, which involves:
    • Hand washing or sanitising
    • Regular cleaning
    • Physical distancing
    • Good ventilation
    • PPE where necessary
  • And above all a good dose of common sense

Observations

Shirley concluded her part of the webinar by talking about how things have worked during lockdown and since re-opening.

The financial position

Phillipa took over to give the financial perspective on lockdown, and its impact on sustainability and the Leominster Meeting Centre budget. Unsurprisingly, COVID-19 has affected the availability of funding and some grants, so it is unclear how easy it will be to get funding in the future to keep the Meeting Centre running. During lockdown no staff were furloughed so Leominster Meeting Centre still had to pay their salaries, and as they have their own premises they still needed to pay the lease on the building. These costs are not insignificant.

Some of costs were covered through a combination of membership fees, small grants, and funding from National Lottery Fund, but Leominster Meeting Centre lost a significant chunk that would normally come from community fundraising activities such as their Summer fayre. The challenge is to work out how to cover that gap. Luckily no members have cancelled their monthly payments as they feel that the support they were receiving during lockdown was worth the cost, and this has been helpful. Importantly, Phillipa acknowledged that although there is an obvious need to focus on what is happening now, they cannot afford to lose sight of the longer-term funding needs to enable Leominster Meeting Centre to be sustainable. Funding is always a challenge, but COVID-19 has made the situation a lot worse and it is unlikely to change for a while.

Strategic positioning

Despite all of the challenges they’ve faced, Leominster Meeting Centre has a clear view about their strategy. For example, they are going to continue being part of research projects such as the UK Meeting Centres Support Programme to get evidence of the impact of Meeting Centres, which will help to support future funding applications. They also recognised the need to remain linked in to local community initiatives and work with others to strengthen their position.

Discussion

During wider discussions and an informal question and answer session, it was acknowledged that although Leominster Meeting Centre has successfully re-opened, it doesn’t have all the answers and is learning (and adapting!) as it goes along. For example, are visits in someone’s home possible as the weather gets worse? Would It be disconcerting if staff had to wear PPE in order to do this, when members are not used to seeing them in it? Would going for a walk or a coffee be a suitable alternative? One view is to try things out and see what works for different people, and not being afraid to change things in response.

Funding was obviously an issue concerning everyone, but this will be different for each Meeting Centre and their local area.

Shirley ended the webinar by acknowledging the importance of Meeting Centres and the support that they provide for people affected by dementia, which has never been more vital than during the COVID-19 lockdown.

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Sustainable Community Interventions for people affected by Dementia: What works, for whom, and in what circumstances?

On a rather warm July afternoon, Thomas Morton took around 40 of us through the Alzheimer’s Society-funded SCI-Dem project which he has been working on for the past 18 months.

Why was the SCI-Dem project needed?

As Thomas informed us, social isolation, loneliness and stigma are widespread issues for people living with dementia and their families. These factors can have a significant impact on both mental and physical health. Community-based support such as regular groups and activities can play an important part in combating social isolation, maintaining positive self-image, delaying decline and delaying hospitalisation. However, provision can often be fragmented and piecemeal, and many interventions find they are unable to continue due to inconsistent funding.

The focus of the SCI-Dem research was to investigate what can promote or hinder community interventions being sustainable over time. The aim is to report on how to best implement community-based interventions so that they are sustainable, with best practice being shared through tips and recommendations for those in practice and for policy makers, and through creating accessible publications and online materials for people to use.

While the research began before the Coronavirus situation, its findings are perhaps even more important and relevant as a result of the impact of the pandemic on the types of groups and interventions being considered.

A realist review – what is it?

This research is a realist review, a kind of literature review based on a realist approach. A realist approach looks at causes and effects to identify what is happening in different situations to achieve particular outcomes. For SCI-Dem, data was gathered and synthesised from existing literature rather than conducting research ‘on the ground’ so to speak. This isn’t to say that it’s all been desk-based work, as engaging with stakeholders has been an important factor throughout the research to ensure that the findings are based in practice.

Slide showing the realist approach

The review identified 123 potential articles through formal and informal search methods. These were whittled down to 61 articles that were assessed to be of sufficient rigour following an initial round of analysis and coding. Following further, more detailed analysis, several key factors or ‘causal systems’ were identified.

So what factors affect the sustainability of community-based groups and activities?

Although the diagram Thomas shared with us looked quite complicated at first glance, it very cleverly showed how the main factors related to the getting and keeping of members, staff and volunteers, funding and income, and the support of other organisations. For each of these, several specific aspects were identified as being important to those main factors, such as the offer of an interesting activity helping to attract members, and staff/volunteer retention being affected by how valued they feel.

SCIDem BYOL2

But, the whole point of the review was to identify how these findings can be put into practice, so Thomas talked us through a couple of examples in detail and others at a higher level.

One of the factors to consider when trying to attract members for your intervention is emphasis the social aspects of the intervention, including food and refreshments, to widen its appeal. Examples of the supporting data for this are shown in the picture below. As Thomas discussed, in simple terms, if you focus too much on the activity alone it can put people off, whereas they may be more inclined to attend for the social aspect even if they are less interested in the activity itself.

SCIDem BYOL3

During his talk, Thomas acknowledged that it can be easy to say some of the recommendations, but actually it is worth remembering that they are based on a significant body of evidence, indicating that they are valuable aspects to focus on which could have an impact on the sustainability of an intervention.

Further high-level recommendations for the other key factors are shown below.

Recommendations around staff and volunteers

Recommendations around support from other organisations

Recommendations around funding and income

So what next?

The SCI-Dem work is due to end in December 2020, and in the remaining time the aim is to make these recommendations available in different formats for different audience to help them actually be implemented in practice. Watch this space!

During discussions, Thomas highlighted that the SCI-Dem research has been specifically looking at groups and interventions based on meeting face-to-face. However, with the uptake of virtual and online groups as a result of Coronavirus, he is hoping to be able to look at the role of virtual groups in the future if funding can be secured to take the work further.

If you would like to get in touch with Thomas regarding SCI-Dem, he can be contacted via t.morton@worc.ac.uk or on Twitter @ThomasMortonADS

You can also access a recording of the session here.

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

 

A Conversation with…

A Conversation with…Tracey Williamson, Graham Galloway, Sue Hinds, Hannah Sweeney and Dr Shirley Evans

Empowered Conversations have been organising a series of weekly webinars during lockdown, and the last one before the summer break took place on 22nd July. In a slightly different format from normal, this webinar comprised Emma Smith from Empowered Conversations chairing a panel of professionals who have been ‘Shifting support for families affected by dementia from face-to-face to virtual support’.

The panel members were:

A recording of the webinar is available here and is well worth watching for more detail, but a very brief summary of some of the key points of interest is given below.

The panel

Graham, Sue and Hannah each gave a short overview of their services in ‘normal’ circumstances and how their offer has had to adapt to cope with the current lockdown situation, before Emma posed a series of questions and topics for discussion by the wider panel.

The provision of online services – was this something you were already doing or was it solely due to lockdown?

In most cases, prior to lockdown all service provision had been delivered face-to-face, so staff were required to skill themselves up quickly, both to get online services up and running but also to be able to support clients and members to access them. Dementia Carers Count had been planning to implement an online approach in the future, so the current situation brought those plans forward very quickly, even though staff had little or no experience. A few small elements of the work Kirrie Connections Meeting Centre has done with members has been online previously, and as it is based in a rural part of Scotland the benefit of an online approach was an area of interest. In some cases lockdown has given impetus to actually put things in place. Shirley reported that seeing the experiences of other Meeting Centres gave her the confidence to initiate a purely online Meeting Centre in Herefordshire, while Tracey noted that people often have the desire and enthusiasm to try new ideas, but the urgency of the current situation has been a big motivator as services do not want people to be left unsupported.

How was the content of your online programmes decided?

A variety of approaches were used, such as Age UK Salford trying to replicate what was previously being done during face-to-face sessions as this reflects what clients were enjoying. DCC’s approach evolved over time, starting with in-house ideas and creativity but adapting their offer based on problems that people were reporting and topics emerging from their support calls with carers. For Graham, it was important to use their normal approach of asking their members and carers what they would like to see included. Rather than a single approach, they have a suite of options to support people in different ways depending on their individual needs. Input and content from carers and members have also helped their newsletters to evolve, and although there have been challenges producing hard copies the positive feedback has made it worthwhile. Shirley reported that as part of the MCSP, weekly meetings were established with Meeting Centre managers to find out what was happening and to offer support, and the learning from these meetings has been very useful for everyone in those meetings in terms of getting new ideas and seeing what has or hasn’t worked for them.

What has worked really well in terms of online provision?

One example from Emma was an online drawing class which provided ‘pure escape’ for carers as it offered them the opportunity to spend an hour focusing on their drawing rather than being overwhelmed by everything else that was going on in their lives. Overall though, the opportunities and connections provided by an online approach were felt to be real benefits. For example, people may form different connections when people are based in their own homes than in a more formal setting. Online sessions also provide the ability to reach people who might not otherwise be able to access services, such as attending courses in a fixed location, supporting carers who were isolated at home, more engagement from carers who would normally use a Meeting Centre as a form of respite, or engaging with new Meeting Centre members who wouldn’t necessarily have come through the door of a physical building. Shirley noted that in Herefordshire different options had previously been considered for engaging people with Meeting Centres who would not have come together as a physical group, but lockdown almost forced a solution on them.

What has been less successful or taken a while to get going?

A common issue were the challenges around getting people set up online from a technology perspective, especially when advice has to be given over the phone without being able to see what they are doing. However, the benefits were felt to be worth the ‘agony’ involved, so if anyone else is in the same situation, keep persevering! A lack of connectivity for some people was also an issue, so it is important to be aware of those who are not receiving online support and work out alternative approaches for them. Sue acknowledged that she had her own internal barriers and concerns that she had to overcome when moving online, but realising that things don’t have to be perfect was an important step forward for her. In fact, in many cases it’s better to ‘real’ than perfect. An important point raised by Tracey was the importance of getting feedback from people to get their views on services. Are people actually comfortable sharing insights into their homes during online sessions?

Have you received any funding to deliver this type of online support?

Different organisations had different experiences with respect to funding. Age UK Salford and DCC had not received any extra funding, so have had to reallocate existing staff and resources. However, as DCC is reliant on donations, they have not had money coming in to support them. Graham has been able to secure funding for technology, to support production of the newsletters, and to get people do deliver sessions more frequently than normal. In Herefordshire, Shirley has received funding to establish the online Meeting Centre and also for technology, noting that it sometimes feels easier to get funding for technology than services. Conversely, she noted that community fundraising has been lost during lockdown.

Has any evaluation work been done yet or been planned?

Sue indicated that they have carried out surveys with regards to their virtual offering, and were also analysing weekly data to gain insight into what services people are accessing and actually spending their time on. As part of the MCSP, data is routinely collected from Meeting Centres and this has continued in an adjusted way during lockdown, capturing information about the types of contact being made with members and carers, and wellbeing, as well as conducting focus groups and interviews with relevant parties to record experiences and opportunities.

Looking forward, what elements of your online work will you keep and what face-to-face provision will you return to?

After having positive experiences with online provision, it was good to hear that everyone was planning to keep at least some online elements in the future. Hannah said that they will be continuing with their Zoom groups for those who want to access support and activities in that way, while both Graham and Shirley have plans to use technology to enable Meeting Centre members to continue attending sessions if they are unable to attend in person, for example due to illness or location. Graham also noted that during the transition back to face-to-face activities they would only be able to work with smaller groups in person, so keeping their online work would help to keep everyone involved. Sue indicated that DCC are hoping to keep all of their online offer, but the momentum will necessarily slow down as staff focus more on the face-to-face courses.

The panel

Questions and answers

In addition to Emma’s questions for discussion, a few questions were raised by webinar attendees.

Does developing an online require more resources than face-to-face work?

There was a mixed response to this, depending on individual experiences. Graham felt that some parts were very time-consuming, such as getting people online and producing the newsletters, but di note that actually the switch to online provision was incredibly fast. From Sue’s perspective, the face-to-face courses normally delivered by DCC are very intense, so there wasn’t as much of a difference when moving online.

What about people who don’t have online access?

Everyone reported that they have been doing phone calls with people, not just online sessions, and low/no-tech options like newsletters also work well. Shirley noted that teleconferencing has been done successfully elsewhere, so that could be an option to consider, rather than just one-to-one calls.

Do you have any views on charging people for online services?

It is unclear whether organisations more broadly are charging for their online services at the moment, so it’s difficult to know how this might work. People might be willing to pay if online services are part of a blended offer alongside face-to-face services, but introducing a cost could be difficult if an online service has previously been offered free of charge.

Thanks to everyone involved in this panel discussion and for the ideas you shared.

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow and Meeting Centres on twitter @MeetingCentres