By guest author Janet Mulready Health & Well-being Librarian, Powys
My work as a Branch Librarian in the early 1980s confirmed my philosophy that libraries can and should be central in offering support to the more vulnerable members of our communities. Libraries offer a safe and welcoming environment, and to paraphrase the author Matt Haig – whose books often reflect his own experiences of dealing with mental health issues – where else can you spend time where you are welcomed as an individual, with no mention of the contents of your wallet?
Janet Mulready, Health & Well-being Librarian in Powys
After more than two decades as a primary teacher, I was delighted to return to my library roots and I was very excited to be seconded recently as Health and Well-being Librarian for Powys. The role is funded thanks to the Welsh Government's Integrated Care Fund, through the Age Well Partnership in Powys; it is part of the project which is focused on scoping and development of community hubs, for these will be a source of early interventions to improve access to health-related information and advice. Being appointed to such a stimulating job in my 60s certainly shows that you can age well in Powys!
My job is excitingly diverse and has already involved building strong working relationships with other organisations seeking to improve well-being within the community. The provision of services to people living with dementia and their carers is important to Powys Libraries, and the development and dissemination of resources to support this is a significant part of my role. I am currently working closely with museum staff and library colleagues to devise a system of lending memory boxes and reminiscence hampers to care homes. We also supply resources from the dementia charity Playlist for Life via the collection service at branches to those who request them.
Another important role is to promote the Reading Well scheme (Darllen yn Well). The Reading Agency and Welsh Government have provided Reading Well resources in both Welsh and English, to support living with dementia, adult mental health and children’s mental health. All titles are recommended by health professionals and people with experience of the conditions covered.
I work with a colleague in disseminating this important service, which is linked to public libraries’ ever-expanding work around community health and well-being. The books can be referred via a Book Prescription, and are also available for self-referral via the Powys library catalogue, for collection from the local branch; some are also available as e-books or audio books. The system supports a self-management model, to encourage patients to take an active role in the decisions made around their health and well-being.
The Reading Well for mental health collection provides general information on mental health and well-being, and offers condition-specific titles, support for those difficult experiences which affect us all, such as bereavement and loss, and personal stories. To ensure the collection is accessible to a wide range of audiences, it includes a range of different formats and reading levels. Topics include therapies and approaches, common feelings and experiences, self-help books to support mental health and personal stories. The scheme supports living well and self-care and self-management models. As a community intervention, it also allows for public services to work together to support the health and well-being of their communities.
As well as signposting to sources of professional help and support, it recommends other well-being activities such as reading groups and volunteering opportunities. And of course, libraries are a vital source for the comfort of fiction. To quote Matt Haig again, “There is something about absorbing yourself in a story that can make you feel comforted. One thing about depression is that it is plotless, there is no shape. Stories have shape – and books became my antidepressants.”
A further remit I have is to help library staff to become confident with services that are available in Powys to support residents, so I prepare and disseminate regular ”How to Help with …” resources. The pandemic has meant that part of my work focus is working with colleagues to develop digital access to supportive services. We have initiated an “Ask a Librarian” enquiry service via the website and the loan of blood pressure monitors; many people are concerned about the physical health effects of lockdown and a more sedentary lifestyle due to home working, yet are understandably reluctant to “bother” a health professional, so they can borrow a blood monitor for free and have it delivered to their local branch for them to collect. As lockdown eases, we are looking to provide rooms in selected branches for individuals to have privacy for online medical consultations.
The importance of digital services and new means of communicating has become important for all of us, so my role also involves supporting colleagues in providing health and well-being information and services digitally. A large number of people are experiencing anxiety due to the restrictions on social interaction, and so we are working on producing well-being videos and resources such as adult literature hours, to play a part in reducing isolation.
A typical working day for me at the moment can involve giving a zoom talk on the Reading Well Scheme, applying for funding for well-being projects, making a video, and writing a Help sheet. Every day brings something new and involves me collaborating with some inspiring, committed people. I have a wonderful job and I am very grateful to have the opportunity, in a small way, to make a positive difference to people!
Many thanks to Janet for telling us about her new role as Health & Well-being Librarian for Powys.
Find out more about the Powys library services on the English & Welsh websites below:
If you have any queries then please drop them in the comments section below. Alternatively you can contact Janet directly by emailing: janet.mulready@powys.gov.uk or ringing: 01639 845353.
The latest Powys Dementia Network event took place in late January 2021. As is the norm these days it was held online; the second time for this network due to the Covid pandemic. It was another great success, attracting a huge variety of organisations and individuals from across the county. These included people living with dementia and those caring for them, colleagues from Dementia Matters in Powys, Alzheimer’s Society Cymru, Powys Teaching Health Board and Dyfed Powys Police to name just a few.
The theme this time was “Diagnosing Dementia.” The event was organised by our colleague, Sue Newham, the Engagement Officer in our Health & Wellbeing team, in partnership with Dementia Matters in Powys. They worked with other voluntary and statutory sector colleagues to bring some excellent information and discussion around the theme of dementia diagnosis to the afternoon.
As always we will try to capture some of the spirit and information from the event here, but if you would like to find out more and / or attend future events then please get in touch.
Supporting people to attend a Zoom network meeting for the first time
We were particularly pleased to welcome Shirley Humphries (pictured above), as she couldn’t attend the first online event due to technical issues on the day. Shirley lives in North Powys, is nearly 87, and has previously spoken about her experience of assessment for dementia at a Powys Dementia Network face-to-face event. However, this was her first online experience of the network, and we decided to ask how it went for her this time.
Shirley told us that her daughter, Sue, had arranged for her to have a different tablet which was better suited to using the Zoom app. The tablet was donated by a member of staff at PAVO, after she heard of Shirley’s Zoom issues!
“When it comes to using Zoom, I’m not that way inclined,” Shirley said, however, with support from her daughter, she was able to follow the meeting link on the tablet, join and take part in the Dementia Network event. Shirley is also enjoying attending the ‘Wiggle with a Giggle’ sessions on Zoom which are run by Dementia Matters in Powys – and the more Zoom events she attends the easier it gets to use the technology. “It’s all about learning what to do, for example sticking your hand up if you want to speak.”
Here are just a few of the key points raised in the different discussions that were held in the various Zoom break-out rooms. If you would like the full notes please contact Sue Newham.
Q & A sessions with Memory Clinic staff across Powys
These sessions allowed people to find out more about the dementia diagnosis pathway in Powys. Heather Wenban, the Dementia Lead for PTHB, is working to improve dementia care across Powys, and spoke about the dementia steering group which works to implement the Dementia Action Plan in Powys. (You can read the Dementia Action Plan for Wales). Powys seems to be quite proactive compared to other areas.
Heather added: “I would like to see one dementia service where people can access a diagnosis. Currently the referral has to come through the GP to rule out physical reasons for someone’s symptoms. Trying to put the right pathways in place is difficult because people are all different. It can be the person themselves that needs support, or people caring for them.”
Janet Davies is the Dementia Advisor for North Powys. She works with patients and families to help them get the support they want. She said: “The person might go to the GP with concerns. The GP will give an initial test and then make a referral to the memory diagnostic clinic, if it reaches a certain level. Whilst they are waiting, they will go for a scan, blood test and ECG (electrocardiogram). The consultant reviews it all and makes a diagnosis. The consultant also assesses whether the patient or family needs support and may refer to the Dementia Advisor.”
Heather Wenban and Kerry Phelps (Alzheimer’s Society Cymru) agreed to work together to create a booklet and information pack around the dementia diagnosis journey in Powys.
Shirley listens to Inspector Brian Jones at the Powys Dementia Network event - 3rd row, 3rd from the left
How can the diagnosis process be improved?
In general, it was felt that people still don’t know enough about dementia and so there is a stigma around it. Dementia is not just about memory loss. Sometimes people are not being diagnosed with dementia because of mental health and other issues masking the problem.
It is important to recognise that no two patients are the same, and a one size fits all approach just doesn’t work. However, there does need to be a seamless process of diagnosis, and the process needs to be explained to people so that they know what is going to happen and what to expect at each stage.
People should be made aware that people are entitled to have an advocate supporting them at appointments, either a family member, friend or professional advocate.
More support is needed during and after diagnosis. It would be good to have an information pack or wellbeing pack that supports the person with their dementia journey.
Support workers should be available who can provide tailored support. Follow-up is extremely important. People need aftercare and the opportunity to ask questions.
People need to be able to talk to someone who has been through it. People living with dementia connect more with other people who are living with dementia. Support groups are very important.
What stops people going to their doctor when they first notice symptoms of memory loss?
Personal fears and attitudes, including fear of the unknown, of change, of perhaps moving to a care home, or of changes to relationships / friendships. Also the stigma relating to dementia can be a barrier.
People may be in denial or scared that it is something other than dementia.
Families may be worried about mentioning to their parents / relatives that they need to seek help, or to other family members that they have concerns about that person.
Fear of losing independence, such as losing their driving licence in an isolated rural area.
A lack of awareness that it is possible to live well at home with dementia.
Access to GPs is perceived as being difficult, especially at this time, and the quality of the relationship with the GP may not be good.
People may have differing viewpoints about dementia to the professional care service and may wish for a non-medicalised approach.
How can we make it easier for people?
Raise awareness with a collaborative approach that involves statutory bodies, private sector, third sector and communities to provide support, remove stigma and raise awareness. We need to show that it’s alright to talk about memory loss and dementia.
People need to be aware that memory problems may be associated with other conditions other than dementia. Putting off going to the GP can mean you don’t receive help with other illnesses.
A wider campaign showing people in the early stages of dementia to alter people’s perception of what dementia is. Individuals living with dementia telling their story is one of the most powerful ways of reducing stigma around dementia. People can and do live well with dementia.
Encourage and develop Dementia Friendly Communities.
Provide information about where to seek help, diagnosis, and support through a wide variety of channels.
A single point of contact would be good.
Develop an online self-assessment checklist that people can run through which can tell them if they should seek further help.
Zoom meetings / telephone conversations can be quicker for getting in contact with people because there is less travelling. With Zoom meetings, more people are able to attend. This option is not possible for everyone, however.
Increase awareness of the Herbert Protocol to inform emergency services.
All in all this Powys Dementia Network event was an excellent afternoon of information sharing and discussions, and Shirley was able to take part throughout.
Heather Wenban added: “The information that you’ve gathered today, will feed into the next consultation for the Dementia Action Plan which is due to finish in 2022.”
The next Powys Dementia Network event is planned for Thursday 15th July, 2pm - 4pm. Sign up for Dementia Network emails and find out about future events by contacting Sue Newham, Engagement Officer at PAVO, by emailing sue.newham@pavo.org.uk or ringing 07739 984 233.
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.
by Sue Newham, Health & Wellbeing Engagement Officer
It was great to have 26 people attending the online Dementia Network event on 15th July. It seemed to go very well. 20 people filled in the post event evaluation and said it was either excellent or very good. Three people tried but were unable to attend because of technology issues.
People started by showing an object that linked with their lockdown experience. Gill used a pickaxe to create a new flowerbed on a steep slope and Mark's bucket full of nails, bolts and DIY bits was finally sorted out during lockdown!
These videos featuring people living with dementia and their carers were shown:
Life in Lockdown (6.5 minutes)
In 'Life in Lockdown' four people living with dementia speak with Dr Jennifer Roberts from the Dementia Services Development Centre. They talk about both the difficulties and and the upsides of Covid isolation. You can find out more here.
Yn 'Life in Lockdown' mae pedwar o bobl sy'n byw gyda dementia yn siarad â Dr Jennifer Roberts o Ganolfan Ymchwil DSDC. Maent yn siarad am anawsterau ac anfanteision ynysu Covid. Gallwch ddarganfod mwy yma.
What people thought about the online Dementia Network
Comments about what people liked about the event included:
“Virtual friendship and enthusiasm of everyone.”
“I felt that people spoke very freely, despite or maybe because of the online setting.”
“Got a chance to exchange more ideas than we have at physical meetings.”
When asked about what to change for next time, more discussion group time was mentioned, along with having more people with dementia organising it. Most people felt that the length of the meeting was about right.
People discussed “The Good, The Bad and The Ugly” of the Covid 19 crisis
Good
Many people enjoyed having more time for gardening, hobbies and spending time with family.
Technology was mentioned as a learning point and virtual meetings as a good way to keep in touch with family and friends. Many felt they had got to know people better through using virtual meetings.
People expressed pleasure in being at home, seeing more of partners and immediate family.
Some people who were working were happy about working at home and travelling less, feeling that less travel gave them more time to meet clients’ needs.
People working or volunteering for third sector organisations had seen a big increase in people volunteering, as well as in referrals.
People mentioned strong community spirit as a real benefit of the situation.
Getting outdoors, including gardening was enjoyed by many and felt to be good for wellbeing.
A few people mentioned learning new skills or doing online courses.
Bad – things which were difficult or frustrating, but bearable
Cancellation of planned trips or events.
Shielding, social distancing and unclear Covid rules.
Reduction of some statutory services and support, so there was not the same level of support coming into the home.
Trying to get supermarket delivery slots was frustrating for many, as was shopping in person for those with sensory impairment.
Being confined at home with several others was a frustration for some.
The lack of family visits or not seeing family was difficult, including those living in care homes or shielding.
Greater pressure on carers affected both those with older relatives to care for and parents looking after children. Many didn’t get any time off and found they were needing to take a lead where other services had been involved before.
Technology was less of a positive aspect where poor internet was involved, and affected both service users and some staff working from home. Some people struggled with confidence around using tablets, laptops or smartphones to access meetings.
Not being able to go to funerals upset some participants.
For some people, having to carry on working outside the home put them under a lot of pressure.
Service providers expressed sadness and frustration about clients they had not been able to connect with. They felt that for some services, you need face to face to be able to really understand the support that is needed.
Ugly - things that were very difficult to cope with
Lack of tolerance and people getting angry.
Lack of physical contact and hugs.
Fear of the unknown and future economic uncertainty.
Not being able to visit family and elderly parents.
Had toothache all lockdown and no services to go to.
Not being able to visit dying loved one.
Those living with dementia have suffered from lack of contact and their condition has deteriorated through lockdown.
Increased pressure on carers.
It was difficult to accept the isolation that some clients were facing.
The second discussion group was about things we would like to “Keep, Chuck or Change” as we move forward
Keep
People wanted to keep the increased use of technology for keeping in touch, the closer community spirit and support, the better work/ life balance and the networking between grass roots groups and services.
Chuck
The virus! We all hope for a vaccine.
Queues.
Change
Technology was felt to be very beneficial, but there needs to be more user friendly tech, more training and support for those who lack confidence, more emphasis on people being equipped for virtual meetings and better broadband coverage so rural communities don’t get left behind.
There was concern for people with dementia who also have sensory loss, and the need to develop more proactive ways of reaching out to them and supporting them.
The expansion of Dementia Friendly Communities across the county would help to raise awareness of dementia. People living with dementia may forget about social distancing or forget to wear masks.
There is a role for “crisis experts” to be employed to help people deal with sudden, traumatic and unexpected crises. In a crisis, it’s difficult to make sense of all the information and to know how to access support.
People felt that non-digital information such as leaflets, and mobile services such as Post Offices and Libraries were an important lifeline.
If you didn't attend this Dementia Network meeting and want to be included on the mailing list, please contact Sue Newham by emailing sue.newham@pavo.co.uk
Thanks to Dementia Matters in Powys for providing the technical support for the event and for liaising with members to get their input. DMiP staff have worked with PAVO to ensure that this event is relevant and informative for those living with dementia, their carers and organisations offering support. Diolch yn fawr.
Powys Dementia Network continues to meet at least twice each year in different parts of the county. We wrote about the summer 2019 day, where we were treated to a surprise visit from the children taking part in Hafren School’s intergeneration project, here.
The first event of the new decade took place in January 2020 at Crossgates near Llandrindod Wells. Sue Newham, who is an Engagement Officer in the Health and Wellbeing team at PAVO, helped organise this latest day, and reports back for us now on how the network is growing and evolving to try and meet the varied needs of those attending and looking to find out more about dementia initiatives across this vast county of Powys.
Getting the balance right has always been an issue, as the needs of organisations who attend and have a table on which to display their literature, are different to the needs and desires of those living with dementia. The number of individuals attending has always been smaller: 3 in February 2019, 6 in July 2019 and 6 in January 2020. Overall attendance varies between 28 and 42. Venues cycle between north, mid and south Powys and the events are held every 6 months.
Deborah Gerrard, Chief Officer of Dementia Matters in Powys
The general structure of the day has evolved, and with strong input from Dementia Matters in Powys, the last event included a period of practical activities, including drumming, art and story-telling. People could refresh themselves at a “water bar” with a selection of waters flavoured with fruit, and there was the opportunity to experience virtual reality trips to the beach and the countryside. These activities enabled people to chat and share their stories, and proved a very popular part of the day.
Feedback from the last event was very positive with more than half of the participants rating it as excellent and the remainder rating it as good. No one rated it lower.
Positive outcomes for Jane (not her real name):
By attending the last two Dementia Network events, Jane has heard about the many services available to support older people, including those with dementia. She has become more able to discuss the possibility of dementia in herself and has expressed more contentment as a result of this.
Jane had displayed growing levels of frustration with lapses of memory, and was prone to talking negatively to herself about being “a silly old woman” and telling herself off for lack of concentration. By hearing from others living with dementia, and getting used to the term dementia in her own life, she is more positive about herself, realising that she can’t simply “pull her socks up” and perform better. She is more at peace with herself.
As a result of hearing about the “My life, my wishes” booklet at the Dementia Network, Jane has started completing this with her family. She has also made provision for powers of attorney covering finances and health and wellbeing.
After attending the Dementia Network in Newtown in July 2019, Jane felt able to speak at the January 2020 network event, which is something she has not been used to doing before. Participants were impressed by her desire to carry on with her life and to live as independently as she could for as long as she could.
Lucy Taylor, PAVO Community Connector
Positive outcomes for Lucy:
Lucy Taylor is the Community Connector for Llandrindod and Rhayader and also attended the day. The network is invaluable for her – “I’m able to catch up with people I’ve not seen for a while due to everyone being so busy! The mix of people attending, from those living with dementia to practitioners, and others on the side, is really very good. I also picked up two referrals on the day and am providing ongoing support to these new clients.
I thought it was particularly powerful to hear two people speak about living with dementia, and others have said how brilliant that was. People hear the word ‘dementia’ and start thinking – that’s the end of everything and I’ll just forget things now. But for most people it is a much longer journey and they live with dementia for a good period of time. So this was a really positive message to come out of the day. By speaking they also raised awareness of how they first became aware of small signs of dementia which occurred in their daily lives.
There were some fantastic activities on the day, such as the drumming and the water bar. And they all had a purpose, they weren’t just random activities. So, for example, the drumming was obviously social but also that kind of rhythmic tapping is very calming, whilst the water bar brought home the message that you need to stay hydrated to keep in good health!
It would be really great to try and bring in people from the smaller communities in the county at future events too if at all possible”.
The next Powys Dementia Network event will take place in Brecon on 15 July 2020. If you are interested in finding out more then please contact Sue Newham by emailing sue.newham@pavo.org.uk or ringing 01597 822191.
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.
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 Englishor Welsh.
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.
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.
My colleague Sue Newham, who is the Engagement Officer for Powys Association of Voluntary Organisation's Health & Wellbeing team, talks to Jenny Hall about the Dementia mapping project she recently completed in Powys in this short video.
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.”
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.
