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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.

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.