In part, Meeting Centres are a 21st Century solution to a long-standing problem in Dementia Care.

For too long many professionals, funders and politicians have viewed people living with Dementia through the 1930’s lens of incapability, to be done to, a drain on resources, lives unworthy

People living with Dementia are Sentient Human Beings foremost and not defined by our diagnosis.

Dementia is an insidious, organic, physical disease of the brain NOT a mental health condition.

It is important to qualify that by saying that:

Like Cancer and other Chronic terminal Diseases, we may develop mental health problems as the disease progresses.

When we fail to comply with the Rigid System, we are aften labelled with behaviours and aggression, then subjected to the pathway of BPSD (The Behavioural and psychological Symptoms of Dementia), a medical construct that leads to chemical and physical restraint, sectioning and safeguarding.

However, like any sentient being, we may have unmet needs that affect the way we interact with the environment and people around us.

Audio, visual, temperature, hunger, thirst, frustration to name but a few.

It is also commonly goes unrecognised that people living with Dementia,

Have a Cognitive Disability as defined by the United Nations

That we:

Have UNIVERSAL RIGHTS under INTERNATIONAL LAW that cannot be taken away even after losing mental capacity

International Law via the United National Convention on the Rights of Persons with Disabilities is legally binding on all signatories, which includes the UK, regardless of national legislation, which contains 50 Articles:

https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/convention-on-the-rights-of-persons-with-disabilities-2.html

Those 50 Articles include:

The Right to Life

https://www.ohchr.org/en/NewsEvents/Pages/DisplayNews.aspx?NewsID=25829&LangID=E#:~:text=The%20United%20Nations%20Convention%20on,equal%20basis%20with%20others%E2%80%9D6%20.

The Right to Family Life

https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-23-respect-for-home-and-the-family.html

The Right to be involved in our community

https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-19-living-independently-and-being-included-in-the-community.html

The Right to Rehabilitation and Habilitation

https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-26-habilitation-and-rehabilitation.html

Where rehabilitation is being enabled to relearn old skills and new skills and habilitation is about maintaining our skills for as long as possible.

Meeting Centres go some way to meeting our Rights under International Law and provides a more joined up, integrated system of Memory Café’s, Day Centres, Dementia groups etc.

Aimed at people living with early to middle stage Dementia but which should not exclude people at the Palliative Stage of Dementia

Palliative Stage = what is commonly mislabelled the “end stage of Dementia”

Dementia is a Chronic terminal Disease by definition and it is therefore:

A false narrative to use the term “end stage” by nature of our organic, terminal disease

The term “Palliative Stage” should also serve as a reminder to professionals and funders, that we should indeed and have a Right to Palliative Care not in our last few days but once we enter that Palliative Stage:

Directed by our CHOICES not our wishes

that we should be given the opportunity to document before losing Mental Capacity

It is OUR life and OUR death after all

Building up a relationship and trust with professionals is not just important in the Palliative stage

Building relationships and trust are part of the very fabric of what it is to be sentient, to be human

Relationships and trust lead to openness and timely interventions

To put it in terms that professionals, politicians, and funders understand

It saves money and improves outcomes

Back to Meeting Centres, having an integrated system of Meeting Centres replacing the current fractured system of funding, Memory Café’s, Day Centre’s,  Groups and the like, will

Improve outcomes, engagement, wellbeing, accurate flow of information and timely interventions, for both the person living with Dementia and their families, is not only beneficial to all, but a RIGHT.

For too long, Primary, Secondary and 3rd Sector Care has been siloed where all are protective of their own services and funding, inaccessible to people living with Dementia and their families.

Where funders impose strict conditions that hampers the provision of appropriate services and often to the detriment of the needs of people living with Dementia and their families.

Missing the importance of each service, by:

A steering group made up equally of professionals, people living with Dementia and their families.

Thereby

Acknowledging the value of the complex and varied lived experiences of people living with Dementia and their families.

Having a Steering Group bringing together all the stakeholders from the are covered by a Council/CCG, improves the flow of information not just from within the professional and organisation circles, but from the Meeting Centres themselves where all can share information and best practice.

Where there is no hierarchy and members of Steering Groups are paid equally for their time including people living with Dementia and their families.

It is a move to Rights based care under International Law

A move from

The stigmatising ignorance of the Medical Model of care

To the

Rights based, unmet needs serving Social Model of Care

Background

The University of Worcester was awarded a National Lottery grant from the Big Lottery Fund. The aim is to help establish new Meeting Centres across the UK to work with their communities to support people and families affected by Dementia.

With this funding we have a unique opportunity to share learning across early adopters of the Meeting Centre model in the UK from different regions and jurisdictions as well as from organisations of different types such as housing associations, faith groups and day centres who could be well placed to build Meeting Centres from their existing provision.

What is a Meeting Centre?

Meeting Centres are a local resource, operating out of ordinary community buildings, providing warm and friendly expert support to people living at home with Dementia – that’s people with Dementia and their families and friends. At the heart of the Meeting Centre is a social club where people can meet to have fun, talk to others, and get great help that focusses on what makes life great. Meeting Centres started in The Netherlands 25 years ago and are now operating across Europe.

Do they work?

Research shows that Meeting Centres can help people with Dementia and their family/friends and carers adjust to life with Dementia to feel more positive, connected, and better able to manage life with Dementia. Meeting Centres are an important way of keeping active and feeling supported to manage the cognitive, emotional, and social challenges of living with Dementia. They provide accessible support and information at a local level.

If people make good emotional, social and practical adjustment to Dementia early on, then it is likely that they will experience fewer distressing symptoms later on and will be able to be supported to live at home for longer with a good quality of life for them and their family. Well-designed and clearly structured support can help maintain the psychological health of carers and mean if people with Dementia do have to go into care this happens later.

The idea for Meeting Centres came from research showing the positive effects of psychosocial interventions for people with Dementia and gaps in care for people with Dementia and their family members living in the community. These gaps weren’t just about practical help, but also the need for emotional and social support and in receiving reliable information at the right time. Families and friends often struggle with caring and need support for their health too. Often they want to know more about Dementia.  Social isolation, loneliness and stigma are commonly linked with living with Dementia whether you have Dementia or are a carer. We deal with Dementia together – as families and friends – and we all need support and help and companionship.

Research on the first Meeting Centres was very promising: family carers felt more competent to provide care for their loved ones and experienced less strain, people with Dementia felt happier, became more active and developed new friends in the meeting centres. Participating in the centres’ programme even resulted in less nursing home admissions.

Now, more than twenty years later, the Meeting Centres are spread across the Netherlands and each day serve more than 2000 people with Dementia and carers. People feel respected and supported in living with Dementia, they enjoy the indoor and outdoor activities the centres offer, they appreciate the friendships they make, and above all that they can be themselves in the Meeting Centre.  The first UK Meeting Centres started in Droitwich Spa and Leominster and are now being developed by Professor Dawn Brooker, Dr Shirley Evans, and colleagues from the University of Worcester.

Meeting Centres – Essential features

Every Meeting Centre is different. These differences are determined by the needs and interests of the people using them, their families and their local communities. However, there are certain ‘Essential Features’ both in the way that Meeting Centres develop and in how they operate that define them. Some of these features may be common with other types of support but taken together they make a Meeting Centre. Although it is recognised that it may be difficult to maintain all the ‘Essential Features’ all of the time, they are important in terms of the validity of the Meeting Centre model. This model, which is based on sound research evidence, helps people to cope well in adjusting to living with the symptoms and changes that Dementia brings. This booklet sets out these Essential Features – Essential Features of a Meeting Centre booklet

The booklet includes a table which enables an organisation to assess whether they measure up to the Essential Features of a Meeting Centre. Meeting these criteria entitles the organisation to use the Meeting Centres UK logo and be listed as a Meeting Centre operating as part of the UK Meeting Centres Support Programme. The following Meeting Centres are designated as demonstrator sites:-

What is the Meeting Centres Support Programme?

The Meeting Centres Support Programme offers support to groups and communities in different ways.

The programme can provide:

• One-to-one consultation to look at the opportunities in your area

• Attendance at a one-day Pioneer Workshop to find out more about Meeting Centres and how to set one up

• Support to organise an information meeting for your community to find out what interest and opportunities there are

• Linking you with similar initiatives and arranging visits to existing Meeting Centres

• Access to a Community of Learning and Practice where ideas and advice can be shared

• Training in the Adjusting to Change Model which underpins the Meeting Centre ethos

• Access to a range of resources such as a guidebook and self-assessment tools

• Access to a helpdesk and on-ongoing support

Finding out more

For further information about Meeting Centres, please visit

https://www.worcester.ac.uk/discover/uk-meeting-centres-support-programme.html

Meeting Centres at Worcester University:

The Association for Dementia Studies

The University of Worcester

Henwick Grove

Worcester

WR2 6AJ

eMail: meetingcentres@worc.ac.uk

Telephone 01905 542531

Sue at Dementia Friendly East Lothian

or eMail: Sue@dfel.org.uk

Telephone: 07727 883 881

Twitter: @MeetingCentres #MeetingCentres

Useful Resources: https://meetingcentres.org/useful-resources/

Webinars: https://meetingcentres.org/webinars/

The MEETINGDEM Network: https://www.meetingdem.eu/

Worcester University:

https://www.worcester.ac.uk/about/academic-schools/school-of-allied-health-and-community/allied-health-research/association-for-dementia-studies/ads-research/wmccsp.aspx