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!”

Memory boxes – the Ystradgynlais story

In July 2016 I posted Memory boxes – connecting with the past – about a new initiative in Brecon run by the local museum. It is aimed at anyone working with, or caring for, older people living with dementia. Across the UK the approach is spreading as more communities decide to become dementia-friendly. A memory box scheme is a relatively easy and fun project to set up. And it is a very practical way to support people to reminisce about the past and thereby improve their wellbeing in the present. 

Sally Richards

Sally Richards, the PAVO Community Connector for Ystradgynlais and District, told me more about the Ystrad scheme. She also updated me about her work in the town, particularly in relation to supporting people living with dementia and those caring for them.

Dr Anja Pinhorn, a Consultant in Health Care of the Elderly at Powys Teaching Health Board, regularly works out of the Ystradgynlais Community Hospital. She initiated this memory box scheme working closely with a number of voluntary sector agencies in the town. Pulling in different groups has resulted in some truly unique memory boxes, with themes ranging from nature and wildlife, to sport and the Abercrave Rugby Football Club, the history of the local area, weddings, sewing, Christmas and cooking. 

Anja told us: "Staff at Ystradgynlais Hospital originally borrowed a couple of memory boxes from the Brecknock Museum Service and were impressed at how it opened up conversations on the ward. This led to the idea of developing our own conversation boxes. Staff have been overwhelmed by the response when we asked for help from diverse individuals and groups including Brecknock Wildlife Trust, the British Red Cross, a photographer based at Craig y Nos and the Ystradgynlais Volunteer Centre. Thank you all and keep the ideas for boxes flowing."

The boxes live on the 20 bedded Adelina Patti Ward at the hospital where they are used to stimulate conversation and memories about patients’ lives. These could include key events and anniversaries, holidays, interests and hobbies, working lives and everyday family activities. The boxes are crammed full of intriguing objects - everything from beer mats to confetti, knitted flowers to shoelaces! All to encourage an exploration not just with the eyes but also by touch, transporting people to their past lives. Sally explained that the benefits are obvious as the boxes can actually help stop people going into a low mood during a long stay in the hospital. Following their success on Adelina Patti Ward she is keen to spread the word and encourage their use in other sections of the hospital.

In her work as a Community Connector Sally regularly supports people living with dementia and those caring for them to make links with organisations that can help. Many practical issues will arise with a dementia diagnosis, including the need for more personal and medical care, and support with finances. However, “one of the hardest things for carers to deal with is losing the person that they fell in love with, or love, to the disease”.

Clients ask Sally about legal aspects relating to a dementia diagnosis such as Lasting Power of Attorney, or benefit payments like Attendance Allowance. However, sometimes what is of crucial importance to mental wellbeing is setting up links with local groups. If someone has had their driving licence revoked and feels their independence is being stifled, it is important to arrange transport so that they can continue to pursue their interests. In Ystradgynlais people are more likely to look south to Swansea, rather than north to Brecon and Llandrindod for activities, so Sally has to be expert in knowing about a wide-range of groups and services. 

A key challenge is trying to explain to people who live right on the Powys border with Neath Port Talbot why they have to access different statutory services from their neighbours.

Sally is based at the Ystradgynlais Community Hospital, where she sits in the Older Persons Integrated Team which is alongside a team of social workers and occupational therapists. “Being in the hospital is ideal as it means I can work in an efficient manner. If I receive a referral for someone who is due in day hospital on a Thursday I’ll nip and see them when they are in rather than make a separate appointment. And I can talk to the medical departments – get regular updates – and build good working relationships with colleagues in the hospital.”

She receives referrals from many of her statutory colleagues, including Community Psychiatric Nurse Assistants based at the community hospital. There is a daily half hour Integrated team meeting that she attends, where she and colleagues are joined by the Ward Sisters, Day Hospital Sisters, Physiotherapists, and District Nurses. Up for discussion - anyone over 65 with complex needs, with staff working together to provide the best care options possible for their patients and deciding who is best placed to provide it. Once Sally has picked up new referrals she works hard to match people up to relevant agencies, but sometimes it is challenging due to the pressures on overstretched voluntary sector services. “I can sometimes wait a long time to speak to someone in a busy charity, and last week at the end of one call instead of one referral I suddenly had four!”

Working closely with Theresa Huykman of Credu (formerly Powys Carers), Dementia Matters, the Alzheimer’s Society, and Christine Finch - the South Powys Dementia Support Worker, is clearly paying off. The partners have already identified gaps in services for carers of those living with dementia. As a result, they are launching a new dementia carers’ group (“a cuppa and a chat”) this Wed 21 February. Future get-togethers will take place monthly on the 3rd Wednesday, 10.30am – 12.30pm, at The Welfare, Ystradgynlais. If you’d like to know more about the group contact Theresa on 0777 334 2128.

If you’re based in the Ystradgynlais area and would like to find out more about helping make the community dementia friendly, check out the Dementia Matters in Powys website for the latest updates and information.

For general enquiries about dementia a good option is the Wales Dementia Helpline, 0808 808 2235 or the Alzheimer’s Society Helpline, 0300 222 1122.

Here in the PAVO mental health team we are loving these Ystradgynlais memory boxes. What theme would you pick if you were making a memory box for family and friends in your local community? Feel free to let us know in the comments section below.

And you can find out how to build a memory box with these easy-to-follow instructions from the Alzheimer’s Society.

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.

Memory boxes – connecting with the past

I recently found out about an innovative new dementia-friendly project in Brecon called the Memory Box Loan Scheme, which is run by Brecknock Museum & Art Gallery and funded by the Heritage Lottery Fund.

“This new service is aimed at those working with, or caring for, older people. Each box has a particular theme and is made up of a range of objects from the 1950s, 60s and 70s. The idea behind the boxes is that they can be used to stimulate memory and start conversation. They can be especially useful for talking about the past with a person with a dementia”.

Martine Woodcock, Education Officer at Brecknock Museum & Art Gallery, told me more:

The project was initially set up by our Volunteer Co-ordinator, Emily Tilling, who has since left Brecknock Museum. The project is now co-ordinated by myself and one of our curatorial assistants, Jacqueline Morgan. Emily spent a lot of time setting up the project and worked with a group of our Museum volunteers who were very interested in taking the project further. They were dedicated in their enthusiasm by either donating personal items or frequently visiting charity shops so that we could build up our collection. Local charity shops have been very generous in supporting the project when they hear what we are using the items for.

The service came about as one of the targets on our HLF Activity Plan was to run reminiscence sessions with older people. As we were about to start this we were invited to a Dementia Friendly session by Rhiannon Davies who is one of the Co-Chairs of Brecon Area Dementia Friendly Community. She delivered a fascinating and informative session and we decided that if we started up a Memory Box Loan Service then that would be of great benefit to elderly people whether they had dementia or not.

We have about 12 themed boxes altogether (Leisure, Sewing & Knitting, Men in the 50s & 60s, Transport & Holidays, Childhood, Women’s Fashion, Household, Photography, World War II, Cooking & Baking, and Shopping) and information has been circulated to care homes and day centres. The boxes don’t have an excessive amount in them and we try to put them in relevant containers such as a vanity case for ‘Women’s Fashion’ and a knitting bag for the ‘Sewing and Knitting’. 

We have opted for group rather than individual use at the moment, but that doesn’t mean that that won’t change in the future. The loan service has been very popular with boxes going out most weeks. We usually let organisations have them for about a fortnight so that other groups don’t have to wait too long.

We don’t facilitate the sessions ourselves. We are just the box providers. We send out a feedback form with the boxes so we know where we could improve the contents/service and we also send out discussion prompts and some item information sheets as we appreciate that those facilitating the session may not have come across the things in the boxes before. A prompt from the Sewing & Knitting box might be: “Did you use the phrase ‘make do and mend’? Did you wear darned or patched clothes? What were scraps of material or old clothes used for (rag rugs, cleaning cloths)?” The box contents include knitting needles, thimbles, tape measures, patterns, crochet and knitting samples, cotton reels, velvet, ribbon and an old knitting pattern magazine!

Rhiannon, and the other Brecon Area Dementia Friendly Community Co-chair, Joan Brown, are also very keen to involve the young people of Brecon in raising Dementia Awareness. Joan has been working alongside local Primary Schools. Year 6 pupils regularly visit care home residents and have used some of our boxes at sessions as well as devising their own.

So, as you can see, it really has taken off in Brecon! We are very proud that we can be a part of maybe bringing a little bit of pleasure for someone experiencing dementia. We are of course prepared for the fact that some objects may jolt unhappy memories too.

We have promoted the service well with the assistance of Brecon Dementia Friendly Community. We recently attended the ‘Ageing Creatively’ day as part of Gwanwyn (a festival each May celebrating creativity in older age) which was held at Theatr Brycheiniog where we displayed boxes. We did the same as part of ‘Dementia Awareness Week’ at The Guild Hall, Brecon. I have also done a talk to a group of Alzheimer’s Befrienders about how simple it can be to put a box together.

Rhiannon Davies, of Brecon Dementia Friendly Community (a familiar face on this blog) has used some of these memory boxes several times at the weekly Tea & Chat and Music & Memories sessions, as well as in care home settings. I spoke to her to find out more:

The volunteer co-ordinator at the museum was full of energy and ideas. Staff there could see what was possible and made it happen. Dr Anja Pinhorn, a consultant at the Brecon Memorial War Hospital, has also borrowed memory boxes to take on to the general ward. They have a lot of long-stay patients with physical illnesses, some of whom have dementia. It is really important to keep them interested and stimulated, and this is an excellent way of doing that. I hear that they are going to make “conversation boxes” in Ystradgynlais Hospital for use on the general ward.

At Brecon Dementia Friendly Community we are starting a new activity in the Autumn on the hospital wards – introducing creative activities and supporting the nursing staff with ideas to generate conversations so that people do not become institutionalised. The memory boxes have been used very successfully so far as they have items in them that can trigger memories and conversations. It can, otherwise, sometimes be difficult to start a conversation with a patient.

In one of the care homes I went into with the boxes a vanity case containing fashion items was used. It had things for ladies, including a suspender belt, stockings, lipstick and a powder pack. It was just fantastic! People actually wanted to pick up and handle the items and had a lot of fun. We don’t use some of these things any more but they take people back to the time when they were used often, and can trigger all sorts of memories such as taking people back to an age when they were much younger and getting ready to go to a dance.

The boxes are a very powerful way of stimulating memories and keeping people connected. There is then a collective connection which is lovely and enhances relationships between the staff and the patient or resident. After you have built this relationship you can achieve trust and it makes things much easier for people.

Many thanks to Martine and Rhiannon for telling us about this wonderful scheme. Perhaps you could use their ideas and develop something similar in your community?

The Brecon memory boxes are available to borrow free of charge. However, it is a collection-only service. To book a memory box or for further information call 01874 624121 or email brecknock.museum@powys.gov.uk

Dementia Awareness Week 2015

Last week I attended an event in Llandrindod Wells organised by my colleague Jane Cooke to update the Wellness & Recovery Learning Centres (the Mind centres and Ponthafren) about dementia services in Powys. As this week is Dementia Awareness Week it seemed appropriate to share some of the information, so here is what I found out (in brief, but check out the links) from some of the people speaking at the event.

Rhiannon Davies – Brecon Dementia Friendly Community

Rhiannon gave up her full-time job to set up Brecon Dementia Friendly Community as a volunteer two years ago – and the inspirational work that is being carried out in Brecon is now a model to other communities across Wales.

She explained that a dementia friendly community (DFC) is a community that has a high level of understanding and awareness of dementia and the issues that it brings to people living with the disease. “Most people with dementia just want to get on with as normal a life as possible. They don’t want to be boxed. It is about having independence and choice, and just getting on with everyday activities such as going shopping, attending clubs and being part of the community like everyone else”.

Rhiannon is passionate about giving a voice to people with dementia – “in the past things were done for people to fit in with our systems. We need to create services that people actually want and need.” She has held numerous Dementia Friends sessions for groups and organisations in which she informs, inspires and engages those living in the local area. These help break down the stigma and fear still attached to the disease. Becoming a DFC is about commitment to social change – what is good for people with dementia – “being caring, compassionate, patient and understanding – is also good for the community as a whole.”

Jacky Baldini – Alzheimer’s Society

Jacky is the Operations Manager for North Wales – a massive patch stretching all the way from Holyhead to Brecon. Alzheimer’s provides support to people with dementia and their carers – information provision is a large part of their work, and the charity has a very useful website. (North Powys and South Powys pages).

There are Dementia Support Workers in Newtown and Talgarth – helping people and those close to them to understand their diagnosis. A Project Information Officer was recruited with Welsh Government funding late last year to further develop DFCs across the county.

Alzheimer's also has advocates (currently there is a vacancy in Newtown) who will support people with dementia to say what they want, secure their rights and obtain the services they need.

Harold Proctor – Powys teaching Health Board

Harold is the Dementia Lead at PtHB, and gave us an overview of NHS dementia services in the county, including the following areas:

• Community hospitals operate the Butterfly Scheme which reaches out to people with dementia.
• Caring well in Care Homes – where the use of antipsychotics is being reduced. Staff are trained to look at alternative techniques if faced with challenging behaviour.
• Memory Assessment Services across Powys.
• Specialist services in Community Mental Health Teams (CMHTs).
• In-patient assessment units (we wrote about Newtown’s Fan Gorau here).
• Commissioning of complementary services, for example: Memory Cafes and Clinics, CrISP (Carer Information & Support Programme) training, information signposting and the Wellness & Learning Recovery Centres. 

Harold said that a rainbow of services was required as people need different things at different times. There is also a requirement from Welsh Government that 50% of front-line staff are trained in dementia awareness in the next year.

Rachael Beech – Powys Befrienders

Rachael is another of my PAVO colleagues. She is the co-ordinator of the Powys Befrienders project to improve the independence of people over 50, to maintain their social networks and remain in their own homes for as long as they are able. Some of the project’s clients have dementia, and can be lonely and/or isolated. More detail about the project is coming up in a separate blog post soon - watch this space!

Jacky updates everyone on the Alzheimer's Society's work in Powys

I want to finish off with a story Rhiannon told me recently – it was passed on to her by someone who had just attended one of her Dementia Friends’ sessions.

“We were driving back to Brecon at about 9.45pm in the pitch dark when we saw in the headlights an elderly woman on the verge. She seemed to be just standing there, looking a bit unsteady. Cars were swerving to avoid her as the verge was narrow and she was stumbling a bit. I went to talk to her – I wasn’t sure if her car had broken down further up the road or if she was a tramp or had maybe been drinking. Anyway, it quickly became obvious that she was very confused – she told me she was staying in a holiday chalet and that someone was coming in and stealing her things so she just had to get out. She’d been walking all day but couldn’t remember where she started or where she was heading. She said all the bright lights (car headlights) on the road were confusing her. She was peeling a satsuma while she was wandering.

She had a bag of photos that she was happy for me to look at – I was hoping to find something that might give a clue as to where she had come from. We persuaded her to get into the car as it was so dangerous, and took her to Brecon police station. They were very good and took her inside and took our details down. When she was in the car she said that the woman who was stealing from her was sending in her little dog to take things and also pulling her belongings out on wires. It was obvious that she had dementia of some sort. The police said that they thought she couldn’t have come far as they’d have had reports of her either missing, or from drivers telling them that she was on the road. They were really grateful we’d brought her in – the young PC kept saying what a terrible call it would have been if she’d been knocked over.

So, I just wanted to tell you how valuable the awareness session was – perhaps if I hadn’t attended it I wouldn’t have thought to stop for her – and if I had, maybe I wouldn’t have realised what she was suffering from. I also think that I might have struggled to persuade her to get into the car if I hadn’t remembered the ‘distraction’ advice you’d given and to keep her talking and pleasantly distracted while we were driving there.

Anyway, if you ever have any doubts about the value of the Dementia Friends sessions, I hope this helps you realise the excellent work you’re doing, we felt we did the best thing we could under the circumstances and got her somewhere safe.”

A celebratory concert is being held in Brecon on Saturday May 23 to celebrate Brecon being officially recognised by the Alzheimer's Society as 'working towards becoming dementia-friendly' – the first community in Wales to achieve this accolade. You can find out about more events taking place across Powys during Dementia Awareness Week on our website.

Small changes help make a dementia friendly community – an Alzheimer’s Society video.

Dementia - who is blogging about it?

For the past couple of years we have greeted the New Year here on the blog with a round-up of some award winning mental health blogs. Some of these bloggers, such as Mental Health Cop, are well-known and have attracted large numbers of readers. The more niche the topic, often the more useful the information/comment provided by these blog authors.

This year, however, we have decided to focus on dementia blogs. With the growing success of dementia friendly communities around Powys, and an increasing awareness around dementia with schemes such as Dementia Friends, it seemed not just appropriate but high time!

So here are some of our favourite dementia blogs, written by people with dementia, those close to them, and others who are working to support them – whether in the statutory, voluntary or private sectors.

We hope you enjoy dipping into their blog pages, and if you know of others you would like to recommend just add a comment below. We would really like to hear from you.

1. Adventures with dementia

“My wife has dementia. She first attended a memory clinic in 2000, aged 52, and suffered a marked decline in the autumn of 2011. Since then there have been some improvements, despite the fact that she has now (after 12 years investigation) been diagnosed with Alzheimer's Disease.
We try to follow the advice of our Guru: 'Live a Good Life'. It's not easy but there doesn't seem to be any better advice around.
I found myself saying to a friend that I would find my wife's condition very interesting if I wasn't so involved. I've realised now that I do find it, and the issues it raises, interesting.”

This blog was started in 2011 and is packed full of useful information. The latest posts focus on A visit to the dentist, Paying GPs £55 for diagnosing dementia, and Disability Living Centres.

2. (Dementia just Ain’t) Sexy

“No photos of wizened hands here! Not a daily care blog or advice site, this is a place to share thoughts about the impact of dementia on those who live with it – who could be any of us.”

3. What I’d have done differently if I’d known my Mother had dementia

“I thought I didn’t know much about dementia until I read a research proposal on unusual experiences of people living with severe dementia – such as confusion, hallucinations and delusions. Suddenly an old and squeaky door opened and I found myself looking into a dark and scary room in broad daylight for the first time.”

A post on the Changing Minds, Changing Lives mental health and learning disability website that has provoked some interesting comments too.

4. Living in the shadow of Alzheimer’s

“This blog is about life with my husband who was diagnosed with Alzheimer's and Frontal Lobe Dementia in 2008. He was 64 at the time although now, knowing more about the disease, Alzheimer's was present many, many years ago, which is why early detection is so important. As you read the blog "Al" represents the way that Alzheimer's is invading our daily lives.”

Daily updates on living with Alzheimer’s from across the Atlantic, but so many of the day-to-day issues are relevant too here in Wales.

5. A dementia voice

“You can still live a life with dementia” is the strapline of this community of bloggers from across the UK, some of them living in remote parts of the Scottish Highlands. Several are members of the Scottish Dementia Working Group.

6. Dementia Journeys

“We aim to share dementia related news and information from around the world as well as sharing your Dementia Journey stories.”

Dipping into recent blog posts we find articles on Activities and stories to share with adults with dementia, Hospices and their ethos of care, and raising awareness of dementia with The Purple Angel – a new symbol emerging from Dementia Action Alliances in Devon.

7. Pippa Kelly

“I write every day about one thing or another, mostly about the elderly, their care and its funding, and about dementia, which stole my mum from her family in a drawn-out 10-year raid.”

Pippa originally wrote an article which appeared in a Sunday newspaper called Dementia: the longest, cruellest goodbye.

In 2014 she received an Older People in the Media Award from John Sargeant.

8. Young Dementia

This site has links to numerous blogs, some written by people with young onset dementia, and others written by the family members of those with this diagnosis.

So, that’s a lot of reading to dip into! We hope you find a blog that can help, inform, interest or inspire you – but if there are others out there you want to let us know about, please comment below.

And if you would like to write about your experience of dementia, especially if you are based in Powys or have a family member or friend who is, please get in touch.

Dyfed-Powys Police: Dementia Friendly and Neighbourhood Friendly

Dyfed Powys Police is running an initiative to raise awareness of dementia in our communities and Inspector Brian Jones is at the forefront. In this guest post he tells us more about the initiative in Powys.

Inspector Brian Jones was born into a rural community near Hay-on-Wye and has spent his life in and around the county of Powys. Joining Dyfed Powys Police in 1994, he worked his way up the ranks, filling a variety of roles, to his present position of Neighbourhood Development Inspector, responsible for forging links with partner agencies to develop an integrated approach to addressing community problems. He is also responsible for equalities and the development of links with under-represented groups within the local community in order to increase police knowledge, understanding and awareness of the plethora of issues impacting on modern day life. 

Each of the four areas that make up Dyfed Powys Police has established a Confidence and Equality Group (CEG). These groups are organized by the police and seek representatives from communities that include young people, aged 16 to 25 years, elderly people, people with disabilities, people who are gay, lesbian, bisexual or transgender and people from minority ethnic communities. The purpose of the CEGs is to ensure access by under-represented groups within the community to the police and to provide a forum to discuss and resolve the needs and concerns of the community.

Brian chairs the Powys group, which meets quarterly, and involves members from these under-represented groups, as well as those actually living with a condition, for example, mental health. “I want the group to have a wider membership and create wider awareness”, said Brian. “To this end, the CEG meetings have been themed since 2012. These themes have covered a range of issues, such as mental health, dementia, ageing population and autism, to name a few.” 

Dyfed Powys Hate Crime Support Officers

The Powys CEG meeting, which is attended by a mixture of partner agencies and Community Support Police Officers, was held in November 2013. The theme was Dementia and Rhiannon Davies, Chair of the Brecon and Hay Dementia Friendly Community Group, agreed to attend to present the case for people living with Dementia. “It was following this meeting that Rhiannon asked me to become a Dementia Champion, which I did, and all 34 attendees subsequently signed up to become Dementia Friends,” said Brian. “Having this increased awareness and understanding of dementia is vital in assisting the police to treat those living with dementia with dignity and respect, to react appropriately to situations involving such people and to give the wider community the confidence to come forward, knowing that we, the police, can deliver the quality of service and support needed.” 

With his Dementia Champion hat on, Brian has now given Dementia Friends sessions to the scouts, to senior police officers and is soon to present a session to the Police Call Centre based in Carmarthen. All Hate Crime Support Officers throughout the 4 areas of Dyfed Powys Police are now Dementia Friends, trained by Brian. He also presented a session to the Powys Mental Health Planning and Development Partnership, as well as to a seminar for nurses and midwives. It is perhaps testament to the success of Brian’s role as a Dementia Champion and Neighbourhood Development Inspector that a police officer should be asked to stand before a group of health professionals to present the case for dementia.

Besides himself, Brian now has five Community Support Officers trained as Dementia Champions, whose responsibility it will be to train all staff in all stations in the Powys area.

For those police officers who have become Dementia Friends, the badge now forms part of their uniform and it is noticeable that wearing the badge opens up doors and initiates conversations. “My ultimate aim is for Dyfed Powys Police to become a Dementia Friendly organization” said Brian. “There are so many instances when we might be called upon to engage with someone, whether a carer or the family of someone, living with dementia. Whether it’s a missing person, a victim of hate crime or domestic crime, the level of response is extremely resource-intensive for the police. The key to providing the correct response, to picking up signals at an early stage, to treating people with dignity, respect and understanding, is in having that insight, that additional awareness, whether we’re dealing with dementia, autism or mental health.” 

“I’m very proud of how we’ve been able to change the culture within the organization over the last 20 years to where we are now” said Brian. “The culture of communities is changing as well and therefore how we engage with and police them and I’m proud to be part of that too.”

Do you live in a Dementia Friendly Community? Let us know what you think or if you have any queries in the comments box below.

Powys Mental Health Alliance Winter Open Day 2014

It's that time of year again already! The mental health charity - Powys Mental Health Alliance - holds two open days each year, one in spring/summer (you can see my colleague Freda joining in the Stretch and Smile session in May here), and another each winter. Last week I went along to the Royal British Legion in Llandrindod Wells to find out more about the group's latest activities and also listened to invited speakers on subjects as diverse as mental health research and dog-sitting.

Chair of the organisation, Bryan Douglas-Matthews, and trustee Debra Douglas-Matthews,
check out the latest edition of Headspace magazine with editor Carla Rosenthal.

The Open Day was well attended with individuals travelling from far and wide across the county, including Ystradgynlais in the South and Llanfair Caereinion to the North. Many organisations had stands on the day as it's a great way to share information about their activities - more details about some of those who came along at the end of the post.

The first business of the day was the charity's annual AGM, where members have the opportunity to sign off the annual report and accounts. The trustees are also voted in at this point for the coming year.

Current trustees of the organisation L-R: Christine Field, Bill Fawcett, Debra Douglas-Matthews,
Bryan Douglas-Matthews, John Steadman. Not pictured: Kelvin Mills, Robert Short.

First speaker of the day was Jenna Markham of the National Centre for Mental Health, a research organisation based in Cardiff and backed by Welsh Government, the NHS and Cardiff University. 

Jenna spoke about the current research programme which NCMH is running, and invited anyone who is interested to contact her to find out more.

This particular research "is working to find out more about mental health conditions so that we can make diagnosis, treatment and support better in the future." Jenna explained that the research started in 2011, and has a target of 6000 participants. So far 3000 people, aged from 4 - 96, have taken part across Wales.

NCMH is interviewing people both with and without a mental health diagnosis, as a control group is required. She said that the process was very informal, and also offered the opportunity to discuss how effective people thought any medication they were taking was, and if they received benefits from other therapies or approaches to their mental health problems.

After the serious matter of mental health research, it was time for some light relief in the form of Michele Hart's Stretch and Smile exercise session.This has proved extremely popular at previous Open Days, and this time was no different! 

Others took the opportunity for some gentle relaxation with Holistic Therapist Liz Gannon from Welshpool, who offered neck, shoulder and head massage and reiki sessions on the day.

Stretch & Smile, with Liz Gannon providing a neck
massage in the background

Liz told me that the benefits of massage included: 

• Relief from pain, stress and tension, and the release of endorphins - the body's feel good hormones.
• Increased energy levels and feelings of vitality.
• A general sense of health and well-being.

A mask-making workshop, with former PMHA trustee Diane Hart, tempted others to put their creative skills to good use during the coffee break. Diane has created designs for a variety of animal masks which can easily be adapted - she showed us her lion, wolf and owl. They look gorgeous!

Diane holds regular Harts & Crafts workshops at Ponthafren Association's Welshpool base - you can find out more here.

Next up to speak was a regular supporter of PMHA - this year's Powys High Sheriff Phil Bowen. Phil has enjoyed an extremely busy year so far - the following week he was due to support the Lord Lieutenant at Princess Anne's visit to the Royal Welsh Winter Fair in Builth Wells. In his role Phil has provided huge support to a variety of mental health organisations and activities since April, including opening the new Wellness and Recovery Learning Centre at Bronllys Hospital and introducing new drama activities for mental health patients on Felindre Ward at the same hospital.

The Open Day then welcomed Julia Roberts of Dementia Friends, an initiative of the Alzheimer's Society. Julia, who works in a shop in Knighton and is also busy as a school governor, recently took part in a Dementia Friendly Information Session, and became a Dementia Friend.

The Knighton Dementia Friendly Community held its first steering group meeting last week and Julia hopes that the initiative will prove as successful as that already underway in Brecon.

Julia had taken away many messages from her Dementia Friendly session, including that it is possible to live well with dementia, and that there is always more to a person than their dementia.

She said that she hoped to help make a community in Knighton where "I can feel safe, loved and valued if I develop dementia."

And then to Barking Mad. Local organiser Steve Gibbon was unable to attend the Open Day, but, luckily for us, Headspace Editor Carla Rosenthal had two moving doggy tales to tell.... Last summer Carla sadly lost her own much-loved dog and felt very miserable as a result. Whilst writing an article on Bob the Dog for the magazine she realised how depressed she was because she didn't have a dog any more, and then found out about Barking Mad.

Before long Carla found herself looking after a Staffordshire bull terrier called Nancy while her owners went on holiday. She took Nancy for a walk around Clun on a lovely sunny day and spoke to lots of other dog walkers. Her spirits were lifted. She felt energised. "It changed the whole weekend for me."

Carla has since looked after Ozzie for 10 days and went walking every day. She sent a postcard to the owner on behalf of Ozzie and even texts. "I had all the fun of a dog without commitment!" By the end of Carla's talk everyone seemed sold on the idea! Not to be left out, even the cat lovers were throwing out ideas about cat sitting and cat cafes!

PMHA were pleased to welcome a number of other organisations on the day, including the following:

Mel Santorini of Time to Change Wales

Denise Davies of Mid & West Wales
Fire & Rescue Service

Meg Lewis and Linda Jones of Powys Care & Repair

Lucy Taylor of Powys Carers

If you want to find out more about the future activities of Powys Mental Health Alliance, you can check out the organisation's website here.

You can also tweet the charity 

at @powysmha

Tel:  07926 862 414

Email: info@powysmha.org.uk

Were you at this year's Open Day? 

Let us know what you thought in the comments section below.