Dementia Action Week 2018

aka Powys Dementia Network event Spring 2018 – Part 2 

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

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

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

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

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

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

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

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

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

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

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

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

Sam Bolam – Chief Officer, Dementia Matters in Powys

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

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

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

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

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

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

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

Gill and Frances

Gill and Frances – Living with dementia

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

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

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

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

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

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

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

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

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

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

Dementia Awareness Week 2017

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

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

Dementia Friendly Shopping

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

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

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

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

Everyone is welcome to shop during this time”.

Dementia Friends’ training for the PAVO Powys Connectors’ team

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

Carol Hay and Suzanne Iuppa

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

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

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

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

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

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

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

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

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

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

Walk and Talk - a dementia initiative

This week’s guest author is Heather Wenban, the Project Development Officer – Dementia Care, at Powys Teaching Health Board. I first heard Heather speak at the Dementia Supportive Communities event in North Powy in 2016, and later found out that she had set up a “Walk and Talk” group in the area for people with dementia, those close to them, and staff members. Following a successful season of walks in 2016, this year’s programme is about to start with the first walk scheduled to take place during Dementia Awareness Week 14 – 20 May 2017. Heather says: “the walk will take place in Newtown leaving the Gravel Car park (the smaller car park) on Tuesday 16th May, at 2pm. This will be followed by tea in the Elephant & Castle. All welcome to join the group.”

Over to Heather to tell us more about how the Walk and Talk group came about:

Whilst I was working as part of the Adult Mental Health team in Shropshire I became involved in the regular Walk & Talk groups they initiated, during the summer months. They were facilitated by a variety of staff members from the clinical psychologists, mental health nurses, occupational therapists, and support workers and normally had 3 staff attending each walk.

Heather Wenban

The benefits were obvious from the outset. Some were excited about where they would be walking that day and the challenge it may bring, others may arrive looking a little depressed and apathetic and wondering why they had come and others came for the meal we would have when we finished!

When I began my role as Dementia Adviser nurse in North Powys, and having seen the benefits of this type of group, I believed that this would be appropriate for our older population and those living with dementia and we could adapt it to meet their needs.

The young onset dementia nurse and I discussed the idea with our carers before running the group to gain a feel for their interest and it was met with very positive comments. The feedback we received whilst it was running was also very positive and they didn’t want it to end as the autumn months were approaching! They felt it gave them the opportunity to talk with others in similar positions and doing it informally, as they were walking, encouraged openness. The carer felt it made the person with dementia calmer and they appeared to feel relaxed and felt no pressure to participate. They would enjoy listening to others talk and always enjoyed walks where water was visible.

As staff we would have background knowledge about the person and this enabled us to talk with them about things that mattered to them. For example, we might talk about their previous work experience or hobbies that they used to enjoy. One of our carers was a local historian and he shared information about the local communities in which we were walking. It would also alert us to any potential crisis situations and we were able to address any issues and reduce the risk of carer breakdown and potential hospital admissions.

It is so important to engage people with dementia in social activities that enrich their lives and stimulate engagement. It benefits mental and physical health and gives people a sense of well-being and improves their quality of life.

Research now supports improved:

Emotional state, reduced stress, agitation, anger, apathy and depression, physical health, skin health, fitness, sleeping and eating patterns, verbal expression, memory and attention, awareness, multi-sensory engagement and joy, wellbeing, independence self esteem and control, social interaction and a sense of belonging. (Greening Dementia 2012).

These are two quotes from the person with dementia and a carer's perspective from the Natural England commissioned report “Is it nice outside? – Consulting people living with Dementia and their carers about engaging with the natural environment” (2016).

“What it is, the fact that if you are out in the open area, it brings a whole new perspective to how you feel, you are not in an enclosed space indoors where you are thinking well, this is my world, that’s their world out there. You go out into their world, as one might say, you enjoy walking, swimming whatever, anything which gives you more exercise to the body, actually exercises the mind as well and fresh air is excellent for people with dementia of any sort because mine should be getting worse all the time but it’s not. It is staying stable and as a result I am still walking, volunteer walk leader and I thoroughly enjoy it, I now walk about 60 miles a month on average.”

“So we just used to walk the streets literally just walk round and round and round until he felt better and… it could be any time of the day or night and that really helped him to be outside… it helped him to calm down again and I don’t know how it worked but it did I guess it just put his mind in a different place.”

The benefits of this group are obvious from both a research perspective and for the mutal benefit of carers and the person living with dementia, in maintaining both their physical and mental health.

Many thanks to Heather for telling us about the Walk and Talk group in North Powys. As soon as we have further dates for the 2017 season they will be added to the Powys Mental Health website events calendar.

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

Linda's experience since being diagnosed with dementia

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You can live well with dementia.

Many thanks to Linda for telling us her story.

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

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

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.