Powys Dementia Network - Newtown July '19

Powys Dementia Network event - Newtown 2019
By Jen Hawkins & Jackie Newey - Health & Wellbeing / Mental Health Information Officers

On Wednesday 17 July we attended the latest Powys Dementia Network event at the Football Club in Newtown. It was organised by our colleague Sue Newham, Engagement Officer in the team, and attended by a huge variety of organisations and individuals. These included Dementia Matters in Powys, Alzheimer’s Society Cymru, Powys Libraries, Hafren School children, Powys Teaching Health Board and people living with dementia to name but a few.

As always we will try to capture some of the spirit and information from the day below, but if you would like to find out more and / or attend future events then please get in touch - further details at the end of the post.

The last Network event in Brecon in February this year was also captured for the blog in Powys Dementia Network event - Housing.

Alzheimers 40th Annivesary

Alzheimer’s Society & Dementia Connect - Kerry Phelps, Alzheimer’s Society Cymru

 Kerry Phelps opened her presentation with some thought provoking statistics about dementia, stating that 1million people live with dementia in 2021, a figure that is expected to rise to 2 million by 2050. The Alzheimers Society celebrate their 40th birthday this year and in that time have learned a lot about how best to support people living with dementia.

In 2017 the society rolled out their “New Deal Dementia Strategy,”  with their mission being to “transform the landscape of dementia forever.” The strategy comprises three pillars, a new deal on support, a new deal on society; focussing on changing conversations around dementia and a new deal on research; with the biggest investment in research to date.  By 2022 they aim to “reach out to everyone from the time of diagnosis to offer help and deliver a universally accessible support and advice service.”

Dementia Connect is their gold star service through which the new deal dementia strategy is being rolled out, at present it supports 1 in 10 people with the aim to eventually be able to support 7 in 10 people. The central ethos of the strategy is focussed on person centred support, planning to empower people to take control of their care.

Brecon Library: Introducing the RemPod & the Past-Times Picnic Hampers - Andrew Jones, Powys County Council

Read & Remember is a new Powys Libraries initiative drawing on the value and the power of a shared oral experience - it’s all about sharing reading aloud creating nostalgic connections and sharing experience. Originally it was set up as an all-community activity, but as they worked with it library staff found that people from the dementia community were the most engaged. As a result staff built in extra resources and so the Past-Times picnic hampers were created filled with nostalgic items to trigger memories.

The hampers are themed - people can choose from the Seaside, Transport, Animals, Gardening and Wildlife. Each hamper is full of nostalgic items which twig off memories from people’s past. The hampers can be used at events and have already proved successful at a number of care homes. They work well with relevant reading material. There is no cost involved and hampers can be reserved and transported between libraries in the county with advance notice, with one member of staff in the north of Powys and one in the south to transport them.

The hampers were followed by the RemPods - amazing pop-up banners featuring large scale photographs of relevant scenes. On the day we enjoyed taking selfies in front of the Seaside RemPod - the only thing missing were the actual ice creams! Other RemPods

feature a shop and a 60s/70s living room and they work really well engaging people in initial conversation. Andrew said “it’s such fun watching how people open up and chat.”

Powys Library Service is keen to work with care homes, local clubs and societies to broaden the audience and give people would not usually consider reading aloud some confidence.

Another top tip passed on by Andrew and Agnes from the Powys Library service is the carers library card. Anyone who cares for someone with dementia in a personal or professional capacity, family members and friends of people living with dementia are all eligible for a carers card. This allows you to take out up to 20 books at a time with library fines or fees incurred.

Planning a Dementia Meeting Centre in Newtown - Deborah Gerrard, Dementia Matters in Powys

Deborah, the new Chief Officer at Dementia Matters in Powys, gave an update on plans for a dementia meeting centre in Newtown. The first Meeting Centre in the county opened in March 2017 in Brecon. Funding from the National Lottery Community Fund has now funded two further centres in Llandrindod and Ystradgynlais. Newtown will be No 4.

Dementia meeting centres are staffed by community development officers, facilitators and volunteers.They offer support, advice and information to people living with dementia and their carers. In the Netherlands, where the first centres were created in the late 1990s following research there are now over 140 centres supporting 2000 people every day. Soon there will be 10 in the UK, and of these 4 will be in Powys which is an amazing development for the county.

Members find that attending the centres means that they can live in their own homes for longer and experience an increase in self esteem and feelings of belonging with a reduction in feelings of isolation, fear and anxiety. The Newtown centre is a partnership project between DMiP and Dementia Friendly Newtown. An Initiative Group has been set up to look at locations for the centre, volunteer recruitment and responding to the needs of local people living with dementia. The planned open day for the centre is  Tuesday 1 October 2019 and if anyone is interested in getting involved in the meantime they should contact DMiP by emailing info@dmip.org.uk or call 01597 821166. Developments can also be followed on social media by connecting via Facebook or following via Twitter

Hafren School Intergenerational Project - Children from Hafren School

Children from Hafren Junior school came along to share their intergenerational singing project with us. Three hundred staff and pupils at the school are trained as dementia friends, with two members of staff qualified dementia champions. Pupils from the school are actively involved with Newtown’s dementia community and can be regularly found at Newtown Library on Friday afternoons and Plas Cae Crwn on Tuesday afternoons. Carl Hyde, headteacher of the school, extended an open invitation to attend one of their sessions claiming that the “two most memorable afternoons of his 21 year teaching career,” were as a result of attending the intergenerational afternoons. Take a look at our video of Hafren Junior School Pupils or pop down to one of the afternoons to experience the project first hand.

“In it Together, Dementia Voices in Mid & North Wales” - Anna Story, Frances Isaacs & Glenda Roberts

Anna Story of Bangor University was funded by a Dementia Innovations Working Together Grant to work with Dementia Matters in Powys and make a short film capturing the voices of people with dementia in Mid & North Wales. Anna introduced the film premiere with two of the participants - Frances and Glenda - both of whom live with dementia. They said “we enjoyed making the film - Anna is so easy to talk to. We had great fun.” 

To capture footage for the film Anna visited different dementia groups across the area where people meet to have fun, laugh and support each other.

The film is aimed at three audiences - people living with dementia, the general public (showing that people with dementia can have fun), and care professionals where it can be used for training purposes.

DEEP stands for the Dementia Engagement and Empowerment Project – it is the UK network of dementia voices. DEEP consists of around 100 groups of people with dementia – groups that want to influence services and policies.

https://www.youtube.com/watch?v=sBtolG4R_UU&feature=youtu.be - English

https://www.youtube.com/watch?v=YCIieY0m9VQ&feature=youtu.be - Cymraeg

My Life, My Wishes - Heather Wenban, Dementia Lead, Powys

Heather Wenban lead an informative and interesting session about advance care planning highlighting the fact that decisions we make about the end of our lives are just as important as how we choose to live our lives.

To find out more about this important initiative please see our earlier Health & Wellbeing Blog from June this year, “My Life My Wishes - Live Well Dying Matters,”

Community Transport in Powys - Sarah Leyland Morgan, Powys County Council

Sarah Leyland-Morgan opened her presentation with a useful definition of community transport stating that “community transport is there to underpin the transport network where it doesn’t adequately meet people’s needs.” Community transport is not a free service and is designed to support people, helping them to participate in their normal day-to-day activities in areas such as

●     Education and Training

●     Employment

●     Health appointments.

●     Shopping.

 Community transport is designed to feed in to the public transport network with three types of provision in Powys

Dial-A-Ride

Ten Dial-a-Ride schemes operate in Powys provided by mini buses and MPV accessible vehicles (Multi Purpose Vehicle) Dial-a-Ride provides a door to door service, usually within a 10 mile radius where users are not able to use their concessionary passes, membership schemes are usually available.

Community Car Schemes

Make use of of volunteers cars with the travel costs being reimbursed. Not all community car schemes are membership based with trips often being to the hospital or longer, out of county journeys.

Taxi Card Schemes

Currently there are two taxi card schemes operating in Powys. People in Montgomeryshire are supported with tokens of between £50-£100. The main issue with the schemes is a lack of taxi services in the area. Membership schemes are usually available where the service operates and often can be used within a ten mile radius.

Group Hire

Some third sector organisations offer group vehicle hire services, some offer a driver, with others you have to provide your own.

Powys Community Transport can support groups and communities in many ways, in the year 2018-2019 community transport has assisted people with the following trips:

●     5,778 Powys Community Hospital.

●     20,000 Education & Work

●     1,292 District General Hospitals Wales

●     2,229 District General Hospitals England

●     9,048 Primary Care

●     30,000 Social & Pleasure

●     10,000 Day centres

●     79,136 passenger journeys made in total.

In this time period there were 5,256 recorded users of community transport, with 78% of Powys in employment and only 228 volunteer drivers,  the need to recruit drivers as volunteers for community transport is important.

Our next Dementia Network day is provisionally planned for Wednesday 17th January in Llandrindod. Sign up to the Powys Dementia Network and find out about future Awareness Days then please contact Sue Newham, Engagement Officer at PAVO, by emailing sue.newham@pavo.org.uk or ringing 01597 822191

Living Well with Dementia

Powys Dementia Network event - Brecon 2019

By Jen Hawkins & Jackie Newey - Health & Wellbeing / Mental Health Information Officers

On Wednesday 20 February we attended the latest Powys Dementia Network event at the Elim Church in Brecon. It was organised by our colleague Sue Newham, Engagement Officer in the team, and attended by a huge variety of organisations and individuals. These included Community Psychiatric Nurses from the Brecon Community Mental Health team, the Macular Society, Mid & West Wales Fire Service and Care & Repair Powys to name but a few.

We will try to capture some of the spirit and information from the day below, but if you would like to find out more and / or attend future events then please get in touch - further details at the end of the post. The last Network event was also captured for the blog in Powys Dementia Network event Spring 2018.

On the left Gill Garner from Dementia Matters in Powys

Overview - Heather Wenban, Dementia Lead Nurse, Powys Teaching Health Board

Heather emphasised the importance of continuing to raise the profile of dementia as we have been doing. It is high on the Welsh Government agenda with increasing numbers of people living with dementia as the population ages. She reminded us of the 6 pledges in the Powys Dementia Plan, and also highlighted the significance of working collaboratively with Powys County Council and the Third Sector to achieve the best possible outcomes for people living with dementia.

There have already been many achievements in Powys, including the introduction of the Butterfly Scheme on hospital wards, a rolling programme of dementia awareness training for health board and care home staff, and specialised RITA (Reminiscence Interactive Therapies and Activities) training too.

Heather noted the huge focus on housing in the new Welsh Government Dementia Action Plan for Wales. She is keen to share best practice with colleagues and work towards the goal of ensuring people can live well at home for as long as possible.

Suggestions from Network attendees

Making our communities and housing dementia friendly - Steve Huxton from the office of the Older People’s Commissioner

Steve began by addressing the discrimination and stereotyping that many older people living in Wales face on a daily basis. He said that older people need to feel valued and respected, to lead healthy active lives, to have their voices heard and be acknowledged as “experts by experience” in building communities for the future.

He is pleased to see the rise of dementia friendly communities in Wales, which can make transformative changes for people living with dementia, but recognised that there is a spin-off for communities which become better for all of us as a result.

Whether housing is provided by housing associations, the local authority or Third Sector organisations it is key that important questions are addressed such as - can people access transport, socialise with friends or enjoy green spaces? Steve believed that no one sector can do all that is required - it is important to look at innovative but practical solutions to meet the needs of the over 55,000 people who will be living with dementia in Wales in just the next two years. Housing is critical in all aspects of our lives - and creating warm, safe and accessible housing that allows people to live independently for longer reduces the impacts on stretched public sector services as well as improving individuals’ lives. It’s essential to recognise the importance of housing as more than just accommodation, it’s where our days begin and end, where each daily journey starts, it’s the heart of our world that allows us to live the lives we want to lead. We need to move away from theoretical practice and implement something that can make a big difference to people’s lives, creating a Wales that everyone is happy to grow old in.

Understanding housing support needs - Terry Flynn, Powys County Council

Terry is both a team leader for the council’s housing strategy and also a pensioner! After acknowledging the changing demographics of Powys whereby younger people move away for work and education whilst retirees choose to settle here in later years, Terry focused on two specific areas of his work: the bricks and mortar, and housing support needs.

The old sheltered housing model of the 60s and 70s is not fit for purpose in this day and age. Council and housing association stock is being reviewed and refurbished where appropriate to suit the needs of today’s ageing population. He was shocked to discover that 30% of accommodation originally designated for older people was no longer suitable, for example, not accessible.

Terry went on to describe a new approach called Extra Care. Working with the health board and housing associations in Powys some of the care homes are being replaced by a different kind of provision. An example of this is Llys Glan Yr Afon in Newtown. Here people can live independently in their own homes but be reassured that extra help and support is available throughout the year. Similar projects are being developed in Ystradgynlais, Welshpool and eventually Brecon.

Terry championed the “unsung service” of Housing Support Needs, who in conjunction with voluntary sector agencies work for one purpose - to ensure people can live independently in their own homes, “to make sure they are on an even keel.”

Approaching dementia differently - Sam Bolam, CEO Dementia Matters in Powys, with Frances Isaacs and Gill Garner

Sam asked us all to think if there is a different way of doing things when working to improve the lives of people living with dementia. “We need to have a beginner’s mind and look at how we can constantly improve and change what we’re doing. It is time for a dementia revolution.”‘When we pause, allow a gap and breathe deeply, we can experience instant refreshment. Suddenly, we slow down, and there's the world,’ Pema Chodron

Image courtesy of Tania Van der Berghen - Pixabay

Sam highlighted the need for change in how we approach supporting people with dementia. It’s not acceptable to just adopt a technical approach, but to recognise and adopt a person centered approach, changing from ‘what matters,’ to ‘you matter.’’ Considering person centered approaches like colour coded tarmac to support people in their daily journeys to and from their homes. Sam showed some stereotypical images of people with dementia and challenged the preconceived view held by many, she called for a dementia revolution, looking at  supporting the whole human.

There followed a conversation between Frances (who lives with dementia) and Gill (who cared for her father who lived with dementia) about some of the difficulties they have and do face and strategies they have used. Frances described, very entertainingly, how she once found herself in a broom cupboard instead of a toilet, and her “Psycho” experience when trying to extricate herself from a steamy shower. But, she said, “there is a life I had never imagined between diagnosis and before I go down the pan.” She went on to describe some of her most rewarding experiences as a volunteer with Dementia Matters in Powys, her love of the open air, and the fun times at Brecon’s Meeting Centre. Frances also impressed upon us that “it is important that you do the things that you love, that are you.”

Information sessions

Finding out about new activities in local areas for people living with dementia - Jenny Hall / PAVO

Watch out for a separate blog post about this recent research project.

Alzheimers’ Society’s New Deal on dementia 2017 - 22, and it’s new service model, Dementia Connect - Kerry Phelps

Kerry Phelps introduced the Alzheimer's Society as the leading support charity for people with Alzheimer's. As an organisation they’re increasing their reach irrespective of circumstances and engaging  as many as 1000 people in their consultation processes. She introduced their new service ’Dementia Connect,’ a staged transitional process with five different tiers.

Dementia Connect was trialled in the Pennines, then Birmingham and is now being rolled out in Wales as an early adopter model. The programme followers a befriending model with a dementia support worker assigned to support people with their dementia journey from diagnosis, through to end of life. In Powys Anne Clark is the point of reference for South Powys, whilst  Alvine Stewart has been newly appointed as the point of reference for North Powys, both posts offer 28 hours of support a week and are currently based in Talgarth.

The first point of access to the new service is by telephone call to a professional support hub, staffed by trained dementia workers, where each caller has the option to talk to a Welsh speaking support worker should they require it. Most people are able to access support and receive the support and help they need with triage and generalised support. However 70% of people whose queries cannot be dealt with there and then are escalated to the next level of tier 2 support.

Tier 2 support workers offer one to one support in the home with commissioned care plans. After the Tier 2 support has finished a KIT, ‘Keeping In Touch,’ support worker will proactively be in contact  six months after the cessation of support to monitor progress and assess whether further support is required. This tiering of service is designed to prevent ‘slippage,’ of people falling through the net and not accessing the support they need.

Access to the service is possible via several pathways. The online referral portal is popular with 90% of current referrals from HSC professionals. Side by Side is a similar model to the Befriending model with the capacity to refer people to the service.  Dementia Connect is slowly building momentum in Wales with 30 callers since January to the Welsh speaking support line. There is a wealth of information online with 100 factsheets on the website that anyone can easily access Publications and Factsheets Another useful service provided as part of Dementia Connect is an online talking point forum, lead by people with dementia and their carers, putting people at the heart of the service and helping people to truly connect, sharing support through lived experience, Talking Point - Online Community

Gill Garner & Frances Isaacs facilitated a third workshop - Ambitions in later life.

Questions and issues session

The afternoon session gave everybody attending the conference the chance to share their views and opinions about the network and how we shape and develop it moving forward. Sitting in a circle gave a real sense of coming together, connecting and sharing, rather than a “contribute from the floor, more formal feedback” session. The session began by asking what is the purpose of the network? How do we drive it forward? How do people have their needs met and what do we focus on next?

The consensus of opinion was that the service users are our priority and as such they should be more proactively involved in the network, giving us the insight and opportunity to take more purposeful action on specific services. It was suggested that a pre-meeting consultation could be held with a dementia steering group to determine what our focus should be. There was also a felt need to forge stronger, valuable links with other groups working towards a common goal such as the Alzheimer’s Focus on Dementia groups.  

To actively engage people with dementia and to be led by their needs and requirements was commonly felt to the best way forward, considering how we actively engage communities, focussing on tangible issues that make a real difference on a daily basis. Recognising that we all need a plan for ageing, asking ‘Are you OK? Can I help,’ are questions that can make a real difference to people’s lives.

Trish Buchan, trustee for Powys Teaching Health Board, summarised the day by saying that ‘Today is a giant step, we have moved forward and come a long way.' PAVO’s Engagement Officer Sue Newham agreed and added, ‘big picture thinking starts with lots and lots of steps to get there,’ Lets see what else we can do to make a real difference to people’s lives and change what Frances Isaacs, an attendee living with dementia, calls ‘pyschobabble,’ to productive babble.

To learn more about PAVO's dementia mapping please view our short YouTube video
Dementia Mapping