Harnessing the power of music - a dementia project

Steff Griffiths is the Local Coordinator in Mid Wales for the music and dementia charity Playlist for Life.

The charity was founded in 2013 by writer and broadcaster Sally Magnusson after the death of her mother, Mamie, who had dementia. The charity’s vision is that everyone living with dementia has a unique, personal playlist and everyone who loves or cares for them knows how to use it.

I caught up with Steff on Zoom recently to find out more about this amazing work.

What is your role with Playlist for Life and which area do you cover?

My role as a local coordinator for Playlist is basically to get out and about in the community and tell everybody how helpful music is in the lives of people living with dementia. So before Covid I would go and visit dementia cafes, dementia groups, carers organisations – basically any organisation that deals with people either directly living with dementia or their carers, their families, and people who support them. And I talk to them about the way music affects the brain and the way music brings back memories and then show them how to build personal music playlists.

I cover the whole of Wales north of Cardiff and the Valleys. I've a colleague in Cardiff but otherwise I'm everywhere!

What brought you to work in this field?

I’ve always found it very interesting and I have experience in my family of people living with dementia and had already realised how much music helps. So when I saw this lottery-funded post I thought I've got to do this job. It's a simple tool that really helps people. We've been based in Wales about a year now. The charity started originally in Scotland and it’s spread to London, the Southwest of England and now Wales. 

How does Playlist for Life work in brief?

Basically we give organisations and groups step by step help so that they you can choose songs that have memories attached to them and put them into a playlist for people living with dementia to listen to. You can create playlists in a number of ways, for example on YouTube, and then email them to people if they've got a phone or laptop or an iPad. It's free. When a song is played the memory comes back and you can talk with people about when they were children, when they married, when they used to go to gigs, and all the songs that remind them of Christmas, holidays or celebrations from their past.

We have lots of case studies of people living with dementia who are very withdrawn. But then when certain songs with memories attached are played, they get up and sing and dance. They play the piano, they will remember seeing Pink Floyd in concert or perhaps the Rolling Stones. And I think – wow, that's cool. But it's just the power of music that's personal to you which really does bring people back to the present and it helps people connect.

If you're caring for people who can communicate with you it's very easy to build a playlist because you can have a chat about the songs from the past. If they're not able to communicate those memories to you we also provide training called Music Detectives. It's all the tips and the tricks about how to build a playlist for somebody who has difficulty communicating and remembering their special songs. There’s also a Mini Music Detectives for children to help as well so they can work with their grandparents or go with their school into a care home (although not at the moment obviously).

Why is music such a powerful force for people living with dementia?

It's the memory. When you listen to music, you're hearing some of the melody, the words, the tone and the pitch and this connects parts of the brain that don't normally connect together for people living with dementia. It can fire off a lot of the neurons in the brain. You don't have to listen to professional music you can just sing the song. I spend a lot of time singing (I can't sing very well!) on the phone to people. Over the summer, when I was working with the Alzheimer’s Society creating personal playlist for people, Neil Diamond’s bank balance must have grown exponentially because everybody liked Sweet Caroline and it was on a lot of Playlists!

The Playlist for Life website is open to everyone and there are loads of downloadable resources on there. Create the Soundtrack to your Life is a popular one. It's a little booklet and it's where you write the song and the associated memory and then the booklet goes with the person if they go into respite for example. So staff know that the song “Sweet Caroline” has this memory associated with it, then the conversation starts and it builds that trust and bit of rapport. We have case studies on the website but you have to get your tissues ready to watch some of the video stories because it can be quite emotional, even though it’s a happy story.

How can creating a personal playlist impact on the emotional wellbeing of someone living with dementia?

Well, we have an example of a lady who is very withdrawn. But when she plays the piano she’s very engaged with the music and her audience. She's engaging with people which ordinarily she wouldn't do if the music wasn't there. It's not a panacea. It's not going to cure people but it really works with some people and it can help people a lot.

If people living with dementia aren’t able to reminisce in ways like this, what can happen to them?

It's probably a very lonely existence. People can be very withdrawn and anxious, and can't connect with the outside world. They get very upset and they don't know why.

There's a lovely video featuring Harry and Margaret on our website showing how they connect via music. You can see on Margaret’s face - she's got her husband back. They talk about when they used to go dancing and that's when they met. He knows the words to songs from the 1950s yet ordinarily he doesn't remember things. It's that connection which the music helps with. 

How has the Covid pandemic impacted on your work?

Lots - because the job is very face-to-face. We go out and talk to organisations and show them all these resources for creating playlists. But of course nothing's face to face now. So we've been holding webinars for people to sign up to and we've been doing music detective training over Zoom.

We've also been working with the Alzheimer’s Society creating playlists for people who can't get out and about as their usual meeting places have been closed. And it's been online for the past nine months. We’re also doing whatever we can to spread the word about the charity and the resources so that hopefully, in six months’ time, when all this hopefully will go away, people will know what the charity can offer them.

One example was when we made a playlist for a lady in her 90s and her son-in-law was telling me “we know exactly what song is playing because even though she's got headphones on she's singing at the top of her voice!”

Which other organisations do you work closely with in Powys, a very rural county?

So far Dementia Matters in Powys and yourselves. It’s early days so far. The community councils are also keen to get involved as well. So if there are any organisations in the area interested in using music to help people living with dementia, please get in touch.

Tell us what a “dementia friendly Powys” looks like to you personally

It's about people having the knowledge of what dementia is and understanding the many different types of dementia. Then knowing how best we can support people living with dementia, and their carers, and their families. So it's all about knowledge. It's about using all of the tools that we've got available to help and to support people. And everyone having their own personal music playlist, of course. 

What are the main challenges of the role?

I made the mistake early on when I started the job of sending out 50 emails in one day to all these organisations to say hello. I had about 36 of them come back within a day saying yes, we want to meet you and find out more. So keeping up with demand was the biggest challenge in the early days.

But during the past few months the challenge has actually being the technology side of things. We've got some lovely organisations that I met before lockdown that are not able to use technology very well. So they’re waiting to return to face-to-face before engaging with me again. So, it's tough now getting to the grassroots’ groups.

And also the need to diet from eating all those cakes, when we were meeting up, has been a real challenge!

Tell us about some of the most rewarding work you have done at Playlist for Life so far

It's definitely been creating playlists for people. We have such a laugh! One couple were having a disco in the garden with a little MP3 player of all the personal music we gave them. The gentleman had the story of his life turned into his playlist. It was a fantastic playlist.

Another highlight was running Music Detective training courses with colleges. We trained 60 - 70 of a college’s access students in the Music Detectives’ work – it’s been great to have that opportunity.

When you are not working for Playlist for Life, how do you enjoy spending your time?

I love walking and cycling. I'm an out-and-about person. I love to travel abroad as well. During Covid I have found so many new parks and places to go locally that I never would have thought about before. That’s been great. 

If you want to find out more about Playlist for Life you can contact Steff by emailing: steff@playlistforlife.org.uk or ring 07712 273 946.

Powys Dementia Network - Summer 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.

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 1 million people live with dementia in 2021, a figure that is expected to rise to 2 million by 2050. The Alzheimer's 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, (focusing 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 focused on person centred support, planning to empower people to take control of their care.

Andrew Jones & Agnes McDonald of Powys Libraries Service

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 things 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 who would not usually consider reading aloud some confidence.

Another top tip passed on by Andrew and Agnes is the carer's 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 carer's card. This allows you to take out up to 20 books at a time with no library fines or fees incurred.

Frances Isaacs (who spoke about living with dementia) and Deborah Gerrard, Dementia Matters in Powys

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. 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 the pupils on our Dementia Network day or pop down to one of the afternoons to experience the project first hand.

Frances (left) and Glenda (right) who spoke about living with dementia
Middle - Anna Story of Bangor University

“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 DEEP* to 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. Watch the film in English or Welsh.  

*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.

Eira Meyer (Advanced Care Planning Champion at Newtown Hospital)
and Heather Wenban, (Dementia Lead, Powys Teaching Health Board)

My Life, My Wishes - Heather Wenban, Dementia Lead, Powys Teaching Health Board 

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 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 and 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

These 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 to make 5,778 trips to community hospitals and approximately 30,000 social and pleasure trips, to give just two examples.

Our next Dementia Network day is provisionally planned for Wednesday 17 January 2019 in Llandrindod Wells. Sign up to the Powys Dementia Network and find out about future Awareness Days by emailing sue.newham@pavo.org.uk or ringing 01597 822191.

Powys Dementia Network Day - housing

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.

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

Heather emphasized 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.

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 accomodation, 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 aging 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.”

Sharing information & networking during the day

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

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

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

Kerry Phelps introduced the Alzheimers Society as the leading support charity for people with Alzheimers. 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

Sue Newham, Engagement Officer - PAVO, with Frances Isaacs who spoke about living with dementia

Ambitions in later life

Gill Garner & Frances Isaacs facilitated this workshop looking at practical solutions for people living with dementia.

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.

Q & A 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 aging, 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 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.

Dementia Action Week 2018

aka Powys Dementia Network event Spring 2018 – Part 2 

Just in time for Dementia Action Week (21 – 27 May) – here is the concluding post covering activities at the recent Powys Dementia Network event in Newtown. The Network is facilitated by Powys Association of Voluntary Organisations and the day was attended by numerous agencies and groups from both the statutory and voluntary sectors in the county.

I wrote about the morning sessions in Part 1, which focused on updates from a number of statutory agencies (including Dyfed Powys Police, Mid and West Wales Fire and Rescue Service, Powys County Council, Powys Teaching Health Board, and Welsh Ambulance Services Trust). All the speakers emphasized the importance of working together to give people living with dementia the best possible life experience. We heard a few scary stories of what could happen in a worst case scenario, we saw some amazing technology, and we learnt that listening to people living with dementia and those close to them can be absolutely key in helping shape effective future services.

The afternoon session featured some truly inspiring and uplifting stories from those in the voluntary sector working closely to support people living with dementia, and also some of those people themselves.

Karen Rodenburg – Alzheimer’s Society, Dementia Friendly Communities Co-ordinator, North & Mid Powys

Karen and her two colleagues (working further south in Powys) have one shared goal: to support communities to become dementia friendly.

“A dementia friendly community is one in which people are empowered to have high aspirations and feel confident, knowing they can contribute and participate in activities that are meaningful to them.”

Karen added: “this is as descriptive as it gets as all communities are different.”

Communities across Powys are all at different stages in their dementia friendly journeys. Karen updated us on progress across the county. Smaller communities such as Guilsfield, Llandinam and Sarn are also now considering becoming dementia friendly. Whilst there may be some crossover with neighbouring towns (Welshpool and Newtown spring to mind), these communities will be completely different in feel and able to respond to the specific needs of the local people.

Karen then put out a call for more Dementia Champions. Is it something you might consider? Champions provide Dementia Friends’ training, and there is a big demand for these sessions particularly during daytime hours when many current Champions are unavailable due to work commitments. Two training sessions coming up soon: Tuesday 5 June at Oriel Davies Gallery in Newtown, and Thursday 14 June in Machynlleth.

Freedom Leisure group has spearheaded a new initiative for Dementia Action Week after discovering that a person living with dementia in Llandrindod Wells wished to play tennis! Two hour taster sessions will be available at sports centres throughout the county, including dementia friendly swimming and walking football.

And if you’re wondering why it’s now Dementia Action rather than Awareness Week, here is the explanation:

“People are already aware. It’s action we now need. It’s help. It’s support. Turning into Action Week is absolutely the best thing I’ve heard.” Chris, a person living with dementia.

Sam Bolam – Chief Officer, Dementia Matters in Powys

Sam began by saying that whilst she’d heard of many valuable services during the morning session, the picture that had been painted of the person living with dementia was – someone who is watched a lot, who might set a fire, murder their wife, and spend time talking to the emergency services about things that had not actually taken place!

“From wanting to help we make them seem very different to us.”

The vision of Dementia Matters in Powys is simply: Powys Communities where people with dementia matter. The organisation’s five priority areas are key to driving change:

• Giving a voice. 
• Tackling myths and stigmas. 
• Promoting independence, choice and control. 
• Being supportive and inclusive. 
• Partnership working. 

Sam pointed out that we can get risk averse when developing services. We might say: “It’s really innovative. But it’s never been done before…” She admitted that creativity takes courage. But it needs to be injected into services where things have become “a bit static.”

We learnt about the first Dementia Meeting Centre for Wales in Brecon, and plans for a further four in Rhayader, Llandrindod Wells, Builth Wells and Ystradgynlais. Sam concluded with some challenging questions, including:

• Can we truly describe a community as being Dementia Friendly when some aspects of basic dementia support are so lacking? 
• How do we move right away from the seemingly inbuilt tendency to exclude experts by experience in decision making?

Gill and Frances

Gill and Frances – Living with dementia

For the final session we were treated to two truly spirited, funny and extremely articulate presentations from Frances, a person living with dementia, and Gill, who supports a person living with dementia.

Frances described her 20 year high-powered consultancy career. It was only when she retired that her husband noticed she was no longer able to decipher tax law when it had previously been the bread and butter of her work. She forgot dinner invitations. “It was a collection of things.” He encouraged her to go to the doctor’s where she was asked ridiculous questions such as “Who’s the Prime Minister?” “I was already feeling like a fool. I wanted to suggest – isn’t it Mr Gladstone? But I knew I shouldn’t!” Then to Frances’s surprise the doctor asked her things she really couldn’t do, such as name the days of the week and count… but both backwards…

Others that were more intensive followed these initial tests. “The truth eventually settles. When the doctor gives you a hug you know you’re in trouble!” Frances described experiencing cognitive impairment – “I frequently don’t know where I am. Well before I was 70 driving was not a possibility. When I have an episode of cognitive impairment I don’t know who people are. You don’t know what’s hit you. It makes you feel foggy. In shops I have no idea and just come back with tinned tomatoes (we have quite a stock now) or cat litter (we don’t have a cat!) We have laughed about these endless things…. Or else you’ll cry.”

Frances started attending sessions at Bronllys Hospital where she learnt useful coping strategies. “I know there are things I can’t do, but there are things I can do – like talk to you.”

“I also volunteer at Brecon Hospital. We offer patients the opportunity to come out of their rooms and talk. I go to Brecon Meeting Centre. They really understand that people with dementia aren’t mad – we’ve had little bits chipped away. It’s random things… how does that zip work…? How do I make salad dressing…? How do I tie shoe laces…? At the Centre we are helped to find our former selves through games that evoke memories, talking to each other, and doing activities we used to do. I go home tired but uplifted! You can have a whole life. It’s different. But wonderful. I feel I’m at a perpetual party and the cake’s good!”

Gill cared for her father until a few weeks ago – he is now in a care home. She described her experience. “I worked as a Facilities Manager. I am practical. Logical. Think on my feet and react to emergencies. I thought I was well-equipped to be a full-time carer for Dad. Was I wrong! It was such a shock.”

“Dementia does not sit in isolation – people are already being tugged in every direction. You have to make room and it adds to the stresses that you are already feeling. I have good, funny and black days.”

Gill’s lifeline, and that of her Dad’s, is the Brecon Meeting Centre. She told us why:

L is for learning plate. I is for integration. F is for friendship. E is for emotional support. L is for laughter. I is for inspiration. N is for nurture. E is for empowerment. And S! S is for smiles. "A smile is sunshine spreading across a face. The carers played walking football at the meeting centre and were smiling ear to ear afterwards!

And, finally, to Frances for the last word: “I love my coffees at the Brecon Meeting Centre. I go in there and order my coffee in a double D cup!”

Dementia Awareness Week 2017

Hot on the heels of last week’s Mental Health Awareness Week comes this week’s Dementia Awareness Week, 14 – 20 May. There are 45,000 people living with dementia in Wales and the charity Alzheimer's Society Cymru is encouraging everyone to 'unite against dementia’: “Dementia is set to be the 21st century’s biggest killer. But together we can raise awareness, offer help and understanding, and urgently find a cure.”

There’s a lot going on in Powys this week but this blog post is just going to focus on a couple of initiatives that are running to help support people living with dementia in the county.

Dementia Friendly Shopping

Jeni Hall, who is the PR Ambassador at the Sainsbury’s Welshpool store, recently got in touch to tell me about the Dementia Friendly Shopping initiative which started at the store earlier this year. Jeni explains:

“At the end of last year, we pledged to become a Dementia Friendly store. Since then, one of our colleagues has become a volunteer Dementia Friends’ Champion and delivers Dementia Friends Information Sessions to all other colleagues.

We have now committed to having a Dementia Friendly Shopping Time once a week on a Wednesday between 2 - 4pm.

All colleagues working during this time will be a Dementia Friend, and will be available to assist anyone who needs help. Stock cages will be kept off the shop floor, tannoy announcements will be kept to a minimum, black mats at the front of store will be replaced with green mats, chairs will be available and we will have a ‘slow checkout’ to use. We have also put coin identifying cards on our tills to help with recognising the different coins.

Everyone is welcome to shop during this time”.

Dementia Friends’ training for the PAVO Powys Connectors’ team

“The Alzheimer’s Society’s Dementia Friends programme is the biggest ever initiative to change people’s perceptions of dementia. It aims to transform the way the nation thinks, talks and acts about the condition. Dementia touches the lives of millions of people across the UK. Dementia Friends was launched to tackle the stigma and lack of understanding that means many people with the condition experience loneliness and social exclusion.”

Carol Hay and Suzanne Iuppa

I joined a PAVO Dementia Friends’ training session yesterday at the start of Dementia Awareness Week. Staff in the Powys Connectors team were being trained by PAVO colleagues Carol Hay (Health & Social Care Engagement Officer) and Suzanne Iuppa (a Powys Connector based in Llanidloes). 

They started the session by asking us to write down the first word which came into our heads when thinking of dementia. Some of the words we came up with included: Scarey. Mum. Numbers. Old age. Memory. We all spoke about our words… some of the stories were already very personal and moving… we discussed initial perceptions… the way dementia is handled by the media… how we are constantly bombarded by dementia stats… and whether our words had positive or negative connotations.

Playing a game of Dementia Friends’ bingo we learnt more about the “Five things you should know about dementia.” The discussion that followed led to yet more personal stories, about family members with young onset dementia, about some of the many other different types of dementia (yes, the numbers: over 200 sorts apparently) and how twiddle muffs can help bring down levels of frustration amongst people living with dementia.

We pondered over why people might delay going to see their GP if they started to experience problems with their short-term memory. Perhaps they would be fearful of having a diagnosis and the implications of that… what it would mean to their day-to-day lives… their jobs if they were in work… how their friends and family would react….? But the sooner someone is diagnosed the sooner adaptations can be made by themselves and those around them.

Dementia Friendly Communities are being developed all around Powys so that people can be more supportive of others living with dementia and to help remove the stigma. We wrote about some of these communities in the North and the South already.

Time for the next exercise at the Friends’ training session. This involved working in pairs to write down all the steps required to make a cup of tea! As a non-tea drinker, who never gets it right brewing cuppas for family and friends, this sounded like it could be useful to me too! Between us we had anything from 20 – 35 steps, depending on whether herbal teas and hand-knitted tea cosies were roped into operations!

Following the exercise we discussed how action could be taken to help people live life more independently. If a person living with dementia was trying to boil water in an electric kettle on a gas hob then maybe it was time to consider choosing a new whistling kettle rather than a residential home placement. We learnt that there is a property in Christchurch Court, Llandrindod Wells where assistive technology is on display – contact Powys County Council at the Gwalia in town for further information.

And we rounded off the day with two analogies…. First thinking of the brain like a set of Christmas tree lights – they might go out, or flicker, or dim, but in no particular pattern. And secondly, as a bookcase… the most recent memories are on the top shelf, with those from further back towards the middle and the base… when the bookcase starts to rock it’s those books at the top which tip first… so someone living with dementia might be living in the fifties or sixties on a day to day basis… which is where contact with memory boxes can be so valuable.

If you are interested in becoming a Dementia Friend or Champion there is a training session with the Alzheimer’s Society at our offices in Llandrindod Wells on Thursday 1 June. You can find out more on our website.

Meanwhile, what have you been doing for Dementia Awareness Week? We’d love to hear from you in the comments box below.

Linda's experience since being diagnosed with dementia

There is a bit of a dementia theme on the blog at the moment which works well as Dementia Awareness Week starts in just a few days.

Last week I wrote about the Dementia Supportive Communities Event in the North, and this week we focus on young-onset dementia with a look at the South of the county.  

Bethan Morris, who is a Dementia Support Worker with Alzheimer's Society for Gwent and South Powys, recently contacted our Information Service to find out more about activities in the county. 

As a result she was able to put me in touch with Linda, who was diagnosed with young-onset dementia, dementia which affects people under the age of 65. Linda kindly agreed to tell us about her diagnosis, and what has happened since.

I knew I had problems with my memory whilst I was at work and didn’t think much about it and used to say I am having a "dementia day" and could someone help me? Little did I know that I was suffering from dementia. I did ask my doctor on several occasions about my memory loss and was told it was my age - it's normal as people get older, or I was depressed and given anti-depression tablets. 

It wasn’t until I saw a different doctor after I had retired from work at the age of 60 that they thought there was a problem with my speech and memory and I was given a memory test. From there I was referred to a memory clinic at the hospital. I was given a memory test at the hospital and then saw the consultant and was told I had a form of Alzheimer’s but he would like a second opinion. I went home and looked at the diagnosis on the internet and felt the diagnosis wasn’t me as I did not fit the criteria. After a MRI scan I was given the second diagnosis of vascular dementia.

At the first visit the consultant asked me if he could inform the Alzheimer’s Society to come and visit me and to give me advice and information and describe the way they could help me. I was visited by Anne from the Society who talked about what the Alzheimer’s Society could offer me and the help that was on offer, she also told me about all the activities the Society provided like a singing group, art group and a monthly memory cafe. At that time I did not want to speak to anybody about my illness as I couldn’t think quick enough to answer questions and I didn’t want to feel silly or be judged, and anyway I couldn’t sing or draw. But after time I felt like I would like to go along to a memory cafe to see what it was like. The first time I was extremely nervous and frightened but I was made to feel very welcomed and from here the Society has changed my life for the better.

From the memory cafe I made friends and was asked to join the singing group. I said no I couldn’t sing but was told that didn’t matter as it was fun and I would enjoy it so I said I will give it one go and if I didn’t like it I wouldn’t go again. After going for the first time I am still going and we have just had our fifth anniversary. I love it. Our choir mistress is extremely funny and we have a marvellous time and come away feeling uplifted. We now have gigs all over Wales and have even sung at the Millennium Centre. I was also asked to join the art group, my art has really improved, I am unable to copy other work as I have a very shaky hand but I do my own thing and love it. Mine is more modern art but it doesn’t matter if you cannot draw as there are always ways around it.

I now sit on a Service User Review Panel, we either overview a new/old document or have a live speaker who would like our opinion on new projects etc. Age Cymru has been commissioned to ask people across Wales about their experience of living with dementia and wanted our views. We have been asked how they could improve the Memory Walk etc.

About five years ago there was a forum for Younger People Living with Dementia and we were asked what we wanted from the community. The joint opinion was that we wanted our own permanent unit for people living with dementia. Somebody on the panel asked ‘Was this just a paper exercise’.

About two years later, however, this idea became reality because the Seren group took on the project in Blackwood and they asked the SURP if we wanted to be involved once the plans had been drawn up. We sat every month to discuss how the project was coming on, we chose all the interior, even the name of the unit. There is an outbuilding we called the ‘CWTCH’ where meetings could be held, we could have parties, our own kitchen to make drinks and even a hairdressers and a chiropodist room. We named the building ‘Cwmgelli Lodge’, this is now opened and we have our SURP meeting there and there are now permanent residents living there.

Having dementia changes your life and sometimes it is difficult but the Alzheimer’s Society helped me to change it for the better. I have become more confident, have a feeling of self worth being able to change people’s perception of dementia, I can emphathise with others, listen to others and offer my support and encouragement.

I attend the monthly memory cafe, singing group, art groups, SURPS' meeting, attend interviews, talk at workshops and conferences, and became an Ambassador for the Alzheimer’s Society. My husband attends a carers' meeting group to discuss any issues and sometimes there are speakers - at least he has a point of contact should it be required.

I now have a befriender Chris and she takes me out every week for two hours. I am always asked where I would like to go, sometimes we go on girlie shopping trips, or go for walks to the wetlands, parks or reservoir, to museums or just go to places of interest but we always end up for a coffee and a chat and this gives my husband time for himself.

I have learned to change small things for the better to improve my life. I make lots of sticky notes and place them around the home to remind me of things I might have forgotten like my purse, my phone, my keys etc. I make lists for when I go shopping and I have a note to remind me ‘have I got my list’. We have changed the cooker to an induction cooker so that it will switch itself off if something is burning, my iron turns itself off if not being used, my shower is set at a certain temperature so I only have to turn one handle, my calendar has become like a bible to me as I write everything on it so I know what it going on every day, and I keep a notepad and pen in my bag so that I can write information down as I normally forget dates.

I am an Ambassador for the Society because I like to help others and I like to give back to the Society as they have given me a quality of life that I thought I would never have.

I look forward and not back, concentrate on the things I can do and forget about the things I cannot do, try new things and if I don’t enjoy it I don’t do it again and can say I have given it a go but it isn’t for me.

You can live well with dementia.

Many thanks to Linda for telling us her story.

The Alzheimer's Society office for Young People with Dementia where Bethan Morris is based is in Pontypool. Staff provide information on all aspects of dementia, including support on caring for a person with dementia and providing emotional support to Younger People with Dementia (YPwD) and their family members. A Younger Person with Dementia is someone diagnosed at the age of 65 and under. This service is available across Gwent and South Powys. Also available: one to one support service for younger people with dementia, offering social support within the community. Home visits can be arranged, please contact Bethan Morris by ringing 01495 768744 or email: bethan.morris@alzheimers.org.uk

Dementia Awareness Week is from 15 - 21 May 2016. Brecon Dementia Friendly Community has organised a number of additional events to coincide with the week, you can find out more here. If you know of any other events or activities then do let us know in the comments section below.