СŷÊÓƵ

UK Meeting Centres

A Meeting Centre is a local resource, operating out of ordinary community buildings, that offers on-going warm and friendly expert and peer support to people with mild to moderate dementia and their families. At the heart of the Meeting Centre is a social club where people meet to have fun, talk to others and get help that focusses on what they need. Meeting Centres are based on sound research evidence on what helps people to cope well in adjusting to living with the symptoms and changes that dementia brings.

Further information about this project can be found on the dedicated page here

A Meeting Centre in a hospital

Work has begun into setting up the first Meeting Centre for people living with dementia to be embedded in a hospital setting.  

Meeting Centres are community-based social clubs designed to support people with dementia and those that care for them and are typically based in ordinary community settings and attended by people living locally. Now the first ever Meeting Centre inside a hospital, primarily for people staying there as patients, is set to open within the Royal Victoria Hospital, Dundee as part of a pilot study being undertaken by the Association for Dementia Studies with Meeting Centres Scotland. 

The project is being funded by NHS Tayside Charitable Foundation and aims to gather insight into the impact the Meeting Centre may have on people living with dementia during their hospital stay, as well as their families and visitors, and the staff supporting them. The learning about how the Meeting Centre works within a hospital setting will also be important for others looking to do something similar in the future. 

To find out more take a look at this . 

You can also find out more about Meeting Centres more generally on this dedicated page.

Food Glorious Food

The Food Glorious Food research project is specifically focussed on the use of food in community groups that support people living with dementia: whether that’s eating and drinking – at meal times, bringing food to share or having snacks together – or activities involving food such as cooking, baking or preparing food together, or even shopping, growing vegetables or discussing food.

The reason we are looking at this is because we know that:

A) There can be real benefits from including food in what a community group does – from encouraging people to come along and helping everyone socialise, to making group meetings more enjoyable and making people feel more included, to having a positive effect on health and wellbeing, to helping people to continue to participate in preparing food and eating together socially. It can also be a way to recognise and celebrate people’s culture and background – and beyond this, in many cultures food is central to socialising, a point which community groups aiming to encourage social inclusion should not ignore. Food is not just about getting enough to eat. Food can be important to how we live our lives, see ourselves and interact with other people. It can provide comfort and joy for many. Preparing and eating meals together can be a chance to spend time with people, have fun and use different skills. As well as giving people something good to eat, these opportunities can encourage people to go along to groups that might support them and help overcome some of the stigma around dementia.

BUT

B) Involving food in community group activities can be challenging, in various ways for various people. Many living with dementia find that their appetite is affected and they may also find eating and drinking more challenging than they used to, in one way or another. For those organising and running community groups, offering food can be fraught with difficulties, from food hygiene regulations, to cost, to having the staff, volunteers or facilities to do it. In addition, it can be hard to get right. Food choices can be very personal and if what’s on offer isn’t what people want or like or feel comfortable with, it can put people off coming rather than encouraging them. Some community groups may think twice about providing food and miss out on the possible benefits.

While we’re aware of the above issues from our long-standing work with community groups supporting people with dementia, we don’t know a lot in depth or in detail – the vast majority of research into the experience of food activities, eating and meal times with people living with dementia has focussed on institutional settings such as care homes and hospitals, not with support groups in the community. The majority of research has also focussed upon nutrition and physical health (i.e. how to get people to eat and to eat healthily) rather than what we call the ‘psycho-social’ benefits of food (i.e. helping people’s wellbeing and helping them live well and stay connected to others). Hence this study will look at this. We want to learn about the benefits and difficulties of doing things such as providing meals and snacks or preparing food together. In our previous work (for example with Meeting Centres) this topic has often been raised, both by people attending groups and by staff and volunteers.

In the Food Glorious Food project we are working with colleagues from Cardiff University, University of Wolverhampton, University of Oxford and the 3 Nations Dementia Working Group. We will go along to six different community groups attended by people living with dementia and those that care for them. We are working with Meeting Centres and Dementia Cafes in Herefordshire and СŷÊÓƵshire, South Asian community groups in the West Midlands and a community group serving residents of both African and African Caribbean heritage and South Asian heritage in an area of London. We will see what they do in each group and talk to a range of people there about their experiences with food and food-based activities. We will also work with some people in each group to understand their individual experience of food and social eating. We will then use what they tell us to find out why things do or don’t work for people in different circumstances.

As usual, members of the public will be involved in this project from start to finish. A group of experts by experience, including people living with dementia, family carers, community providers and academics will provide guidance throughout. At the end we want to produce a range of guidance materials on how best to approach involving food in community groups that support people living with dementia.

СŷÊÓƵshire Libraries

ADS has been part of a drive to make libraries across СŷÊÓƵshire more dementia-friendly.

СŷÊÓƵshire’s Library Service is delivering a 2-year project aimed at improving the dementia-friendly offer across its 21 library sites. Funded by that National Lottery via the Arts Council England, the ‘Memories and Me’ project provides resources to support people living with dementia, and their carers, as well as developing dementia-friendly events and activities within libraries. The funding has allowed the service to introduce loanable Memory Bags that encourage conversation, bring back cherished memories, and create meaningful moments together.

In addition, ADS were commissioned by the service to train 17 Dementia Ambassadors who will ensure library spaces are dementia[1]friendly, develop suitable activities within their libraries and work with local partners to improve signposting and access to information for families impacted by dementia. The training shared invaluable knowledge with the Dementia Ambassadors, inspired them to develop partnerships at a local level and built their confidence in utilising the resources available in libraries, including the Memory Bags, Reading Well for Dementia book collection and information booklets. Feedback from the new-in-post Ambassadors included: “I will be much more mindful of interactions with people, not just in the workplace but in society as a whole.”

Louisa Ackling, Service Development and Engagement Manager with СŷÊÓƵshire Library Services, said: “The support of the Association for Dementia Studies has been hugely beneficial, both in the planning of the Memories and Me project and also in preparing our Dementia Ambassadors for their role in supporting library staff to better understand how to assist customers, developing suitable activities and growing partnerships in their local communities. Our library service is committed to improving the wellbeing of those living with dementia in our communities and providing dementia-friendly spaces, and the knowledge shared by ADS has been instrumental in ensuring this project will have a meaningful impact for individuals visiting our libraries.”

For more information on the project, visit:

Namaste Care

Namaste Care is a multi-component sensory intervention for people with advanced dementia and at end of life. It is person-centred, relationship-based care that combines elements of best practice dementia care with best practice palliative care.

We were pleased to receive funding from the Marie Curie Research Impact Fund to develop and pilot an online course to support care home staff to implement Namaste Care. The course was developed in conjunction with the NEAR charity (), professionals in the field, and people with lived experience, to ensure that the course captured a range of different perspectives. It also incorporates findings and resources from our previous Namaste Care Intervention UK research project.

A is available, and if you are interested please contact us at dementia@worc.ac.uk for details about dates, costs and registration. If you would like to explore options for having the course delivered for your organisation or group we would also encourage you to get in touch.

More information about Namaste Care is available .

Crossing the Line

 

Personal care includes helping with going to the toilet, washing, bathing, dressing, mouth-care, shaving, haircare, foot and nail-care. Family carers that support people with dementia have told us that the issue of personal care is very important to them, though our research has shown that little is known about it in the context of dementia and family care.

Family carers face challenges adapting to the change in role that providing personal care brings, and this is worsened by lack of skills, know-how, shame and embarrassment. As their dementia progresses, the person with dementia may be increasingly unaware of their need for help or the impact it has on their family, and this leads to high levels of distress, causing physical and emotional harm both to themselves and their family carer. The challenges around personal care are often a tipping point for the person living with dementia to move into a care home. 

The research team carried out a survey and personal interviews with a diverse range of family carers from across the UK, to develop a deep understanding of the experiences of family carers relating to their provision of personal care to people living with dementia. That understanding enabled the research team to develop resources that will help families to cope with the challenges that they face. 

The resources can be accessed for free  and include a series of 15 booklets and video clips from family carers sharing their own experiences and advice on what helped them. We are also working on translating the booklets into Welsh and formulating an idea for a follow-on project to improve dissemination and reach.

 

Crossing the Line was supported by the National Institute of Health and Care Research (NIHR) under its Research for Patient Benefit Programme.

Holdenhurst Community Link Worker Evaluation

Holdenhurst in Heathfield, East Sussex is a newly built Abbeyfield enhanced sheltered housing scheme for people aged 60. The Community Link Worker (CLW) role was developed to enable tenants to enjoy an enriched lifestyle, reduce the impact of loneliness and improve their well-being.

Funded by the Abbeyfield Research Foundation, we evaluated the role of the CLW role in the context of the Holdenhurst community. Among other aims, we wanted to understand the key barriers, facilitators, successes, and challenges in setting up the CLW role and identify potential improvements going forwards, find out the impacts of the CLW role on the lives of tenants particularly in relation to improved welfare and decreased loneliness, and evaluate the impact of the CLW role on tenants and staff.

Championing Physical Activity for People Affected by Dementia

 

This innovative project developed and successfully piloted an online short course to upskill practitioners from across social care, leisure and sport to deliver more physical activity opportunities for people affected by dementia. You can read more about the project here and a short video about the pilot course is also available .

Further iterations of the course have already been delivered and we will be running the course at different times in the future. Please see  for more information and contact us at dementia@worc.ac.uk for details about dates, costs and registration. If you would like to explore options for having the course delivered for your organisation or group we would also encourage you to get in touch.

The project was funded by and the Leisure Studies Association.

Supporting People Living with Dementia in Extra Care Housing (DemECH)

The Supporting People Living with Dementia in Extra Care Housing (DemECH) project was an 18-month study funded by  and used a mixed methods approach to explore how Extra Care Housing can help people to live well with dementia.

Please use the following links to find out more about the Project, about the Team, and about the Advisory Group.

Three free booklets have been developed to provide key insights from this research project, and are aimed at different audiences:

In addition, an infographic and three short videos have also been produced to help share the findings in different formats. All of these free resources can be found .

Get Real with Meeting Centres: A realist evaluation of locally-driven social care for those affected by dementia

The Association for Dementia Studies was awarded funding for this two-year project by the National Institute for Health Research (NIHR) under its . It used a realist approach to gather together learning from three well-established Meeting Centres in Droitwich Spa, Leominster and Powys on how they have overcome challenges to keep going long term, beyond their initial start-up phase, in a climate where such initiatives are often forced to fold after only a short period.

A Meeting Centre is a local resource, operating out of ordinary community buildings, that offers on-going warm and friendly expert and peer support to people with mild to moderate dementia and their families. At the heart of the Meeting Centre is a social club where people meet to have fun, talk to others and get help that focusses on what they need. Meeting Centres are based on sound research evidence on what helps people to cope well in adjusting to living with the symptoms and changes that dementia brings.

The Get Real research aimed to uncover the cause-and-effect factors at play – how context (background circumstances) can trigger mechanisms (processes within people and organisations) to produce desirable or undesirable outcomes that have a bearing on whether a Meeting Centre can keep going long term. It builds on an  which built a complex theory about this based on a review of the literature and stakeholder opinion. By learning more about the particular challenges facing the Meeting Centres in the study, we hoped to develop better strategies to overcome those challenges – and to make recommendations to others across the UK.

 

The Get Real resources, in the form of a series of free booklets and short videos, can be found on the .

СŷÊÓƵ Life Stories

Keeping connected is important for our health, with some studies suggesting that the impact of isolation and loneliness on health, functional decline and mortality are of the same magnitude as such risk factors as obesity and smoking. Initial evidence suggests that interventions to reduce loneliness may provide health benefits, and previous projects have shown that life story work helps to keep people with dementia connected with their communities.

In this context, the СŷÊÓƵ Life Stories project aimed to bring together health and heritage in a unique way by co-producing two independent, but connecting, online platforms:

Know Your Place СŷÊÓƵ

Know Your Place СŷÊÓƵ is based on a bespoke website developed by Bristol City Council called Know Your Place. Hosted by СŷÊÓƵ City Council, Know Your Place СŷÊÓƵ allows people to explore their neighbourhood through historic maps, images and linked information, and to share their own memories and images. It consists of a map-based database of over 35,000 digitised historic images from the СŷÊÓƵ City Council Historic Environment Record (HER). The platform has scope to hold further collections and continue to evolve and expand, enabling users to learn more about their area or specific parts of СŷÊÓƵ that they have a connection with.

Members of the public can also upload their own photographs, written and oral memories. The platform can be used independently or collaboratively within families or community groups, and it is hoped that it will initiate social media conversations with other residents of СŷÊÓƵ developing new contacts and networks. The Know Your Place СŷÊÓƵ website is free to use and open to everyone -

Life Stories Herefordshire and СŷÊÓƵshire

Hosted by Herefordshire and СŷÊÓƵshire Care and Health NHS Trust, Life Stories Herefordshire and СŷÊÓƵshire is an online platform that allows anyone living in either Herefordshire or СŷÊÓƵshire to create their own digital life story book. Using a flexible template, users can download images and memories from Know Your Place СŷÊÓƵ and upload their own materials. People may choose to develop their life story with others, share it within families and friendship groups and/or allow it to be used within community groups, care homes and hospitals for example.

Life Packs are also available on the website, which contain resources around a common theme. These can be used outside of the Life Story books, for example to facilitate reminiscence sessions, or content can be linked to a life story.

All residents in СŷÊÓƵshire and Herefordshire can create their own digital life story book for free, but you do have to register on the site to be able to do this or to view a shared book. Life Packs are available and free to all. You can find the life stories and life packs here -

Evaluation

The Association for Dementia Studies was commissioned by Historic England to evaluate the experiences and views of individuals and community groups who use the two web-based platforms. 

A for the two platforms is also available. 

You can keep up-to-date with developments for both platforms on the