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!”

Mental Health Awareness Week 2018

Stress, are we coping?

This year the theme for Mental Health Awareness Week (14 – 20 May), hosted by the Mental Health Foundation, is stress. Research has shown that two thirds of us experience a mental health problem in our lifetime, and stress is a key factor in this.

For many people stress is a part of everyday life, but do we really manage our stress effectively? By tackling stress, we can go a long way to tackle mental health problems such as anxiety and depression, and, in some instances, self-harm and suicide.

The Powys Mental Health Planning and Development Partnership, in collaboration with other partnerships across the county, is exploring how we can all tackle stress and help to improve our mental health. Stress is not a mental health problem itself but is a survival response to keep us safe. But it should not become a way of life. The Partnership asked its members what stress looks like for them and how they manage it.

How do you recognise stress?

• For me it’s about when the day to day things I usually cope with fine start eliciting a greater than normal response. So, maybe I am rushing around and hit my funny bone really hard on the door frame (never funny) and it makes me really anger or want to cry – when usually an expletive muttered under my breath will suffice. Those moments really stand out for me and I know there is something else going on. 
• Usually when I start to lose patience and things annoy me more than usual, particularly my husband! I know that I have been moaning a lot when he says things like ‘can you not ring your mum?’ which means he has done his best to support me but it I now requires a higher level of management. This ‘intervention’ usually works as I can take a step back and get some great advice from people who know me best however sometimes there are physical signs too.

What does stress look like for you?

• Personally, a sense of frustration, a loss of sense of humour and feeling powerless are symptoms I look out for.
• It’s like my emotional cooking pot is full.  There is no room for anything else.  And when something else does happen my emotions can spill over much more easily with less of a filter than they usually have. If I'm stressed I may feel like I have too many things to do and not enough time, so I don’t seem to stop or get any time to myself.  That makes it hard to unwind which can then affect my sleep, making me feel worse in the morning and on the cycle can go unless I do something about it.
• It usually presents in anger / frustration towards a loved one.

What do you do to combat it?

• The most important technique for me to combat stress is to recognise the early warning signs and to take immediate action.  I generally use ‘Resilience’ as a coping mechanism.  This can be by taking a short break, speaking with friends and colleagues or exercising.  For me, it’s being able to adapt to changing circumstances.
• Exercise – specifically going for a cycle ride.
• Learning how to breathe properly. This sounds weird but if I take a minute to close my eyes, breathe in though my nose for 7 seconds and then slowly out through my mouth for 8 this really helps. Walking the dog in the countryside or at the coast makes me feel good too.
• In the past exercising whilst listening to loud music (on headphones) has also helped – this is a good standby in the winter when severe cold or rain encourage stresses to multiply because I can’t get outside in the garden. There are loads of NHS exercise classes for beginners on YouTube and they don’t all involve balancing on a yoga mat with hardly any clothes on looking like a Downward Dog.

What shouldn’t you do?

• Think it will go away if I don’t do anything about it.
• Bottle up worries / concerns – share with others for discussion / solutions.
• Panic. Life is hard. There will be stress in life, embrace it as a natural thing, accept it as a part of you and don’t see it as a failure to cope with things.
• Buy five large chocolate cakes and eat them all at one sitting!! Buy a one way ticket to El Calafate, however tempting it might seem at the time… Scream at your line manager that you hate your job and you’re leaving right now, never to return. In other words…. Don’t be too impulsive. Take time to step back, assess the situation, seek help if that’s appropriate, and then make a plan of action to address the cause of the stress. Then collect empty plastic bottles to turn into mini cloches to keep the mice off the peas and beans…

Do you do any of the Five Ways to Wellbeing to combat stress? If so, which one works for you and why?

• Connect – unwind with friends and husband – talk things through – doing something nice together. Be active – running and walking. Take notice – being in nature.
• Be active. Being fortunate to live in Powys, the opportunities for exercise throughout our glorious surroundings is endless. Being able to walk the Black Mountains, Brecon Beacons or the River Wye footpaths. Being able to get away from things through walking either with our dog or with family is calming and fulfilling. I find exercise an important part of my physical and mental well-being.
• Being creative - More recently I have been getting creative, remembering how much I used to love Art in school I thought I’d give it a go now. Finding the time to paint is good because I’m preparing to make a relaxing bit of space and time. I get everything I want to done and the whole time I’m doing this I’m looking forward to creating something.

What would be your top tips for managing stress?

• Exercise – it’s hard to motivate yourself to start but if you can find a way to build it into your weekly routine it can be hugely effective.  Particularly if you can get out into Nature.  For many people exercise seems to use up excess emotion leaving you feeling calmer and more in control. Nature has been shown to have many beneficial effects, not just on our mental health, but also on our physical health. We evolved in Nature (green trees and soft curved lines) not urban environments, and we relax and feel better when surrounded by it.
• Do something you love and get lost in it – be it football, craft, reading…. You will be totally absorbed by it for a while so you don’t think of anything else.

• As a Police Inspector, I must be accessible to colleagues and a point of contact and support when people are under stress.  I must recognise incidents which could have a negative impact on a person’s well-being and ensure that the correct support intervention is provided.
• I personally rely on making a list of things to do and I then prioritise what must be done first.  This helps me to turn what appear to be unmanageable tasks into something less formidable.
• Try and get away from whatever you are working on for 10 – 15 minutes at lunch time – go for a short walk, run or cycle – whatever takes your mind of what you are currently doing!
• When you wake up in the morning (and go to bed at night) think of 2 – 3 things that you are really grateful for.
• Be as kind to yourself as you possibly can. Imagine you are another person (or animal if that’s easier) you love and care for. You want to do the best you possibly can for that person/animal. So what would you do? I am often guilty of putting myself under further pressure if I’m stressed, as if it’s all my fault and I need to suffer further! But whilst I might sometimes be responsible (I can’t grow 30 of my favourite vegetables successfully and fit everything else in my life, but maybe 10 would work) sometimes the stress has an external source. Pluck up courage and talk to anyone involved in making your life stressful, or, if that’s not possible, try and stay out of that person’s way!

Any other comment?

• Laugh. With colleagues. At that very funny radio comedy. At your own jokes even if nobody else thinks they’re the slightest bit funny. When the cat’s head gets stuck in a margarine pot (but do rescue that cat promptly).  When you all try a new sport and end up on your backsides, your head, in fancy dress or covered in apricot jam…. Be weird and wonderful and wacky sometimes, because you can (only if it’s legal though!) Just because life is hard sometimes, remember to take a breather and HAVE FUN!!

Tell us what you do to relieve stress in the comments box below.

Together for Mental Health is the Welsh Government’s 10 year strategy to improve mental health and well-being in Wales.

In Powys, there is a Mental Health Planning and Development Partnership in place to deliver the strategy locally and prioritise activity to meet the needs of Powys communities. One of its main objectives is to build strength and resilience, promoting mental and emotional health and wellbeing of individuals and communities across the county. 

Thank you to Mary Griffiths (Mid Powys Mind), Inspector Brian Jones (Dyfed Powys Police), Louisa Kerr (Powys Teaching Health Board), Jackie Newey (Powys Association of Voluntary Organisations) and Joe Wellard (Powys County Council) for their contributions to this blog post.

Powys Dementia Network event Spring 2018 – Part 1

Two years ago, I attended a Dementia Supportive Communities event in North Powys at which the idea of the Powys Dementia Network was first mooted. Three meetings subsequently took place through 2016 – 2017, in Knighton and Brecon. In late April this year I actually went to my first meeting of this network at Newtown Rugby Club. It was a brilliant opportunity to find out the latest updates about dementia services and activities across Powys.

The day was packed with speakers and networking opportunities so this summary is split into two blog posts. This first post will focus on the morning session, primarily important updates from a number of statutory agencies. The second will highlight the ongoing work of the voluntary sector, plus the day’s highly entertaining finale “Living with Dementia” from Frances and Jill, who between them have extensive experience of living with, and caring for people, who live with dementia.

Claire Powell, Community Connector at PAVO, and Trish Buchan, PTHB

Trish Buchan – Setting the scene for PAVO

Trish, who previously worked for PAVO as the Health & Social Care facilitator, now represents Third Sector Organisations at Powys Teaching Health Board. She has personal experience of supporting a close family member who lived with dementia, and encouraged all agencies to work together “to support people living with dementia to live well and happy lives.”

Alison Johnstone, Patient Experience & Community Involvement Manager

Alison Johnstone & Dave Coombs – Welsh Ambulance Services NHS Trust

WAST produced its three year dementia plan last year, regularly schedules Dementia Friends’ sessions for staff, and is recognised as a Dementia Friendly Community. The vision: “By 2020 we will be an organisation that responds to both the clinical and emotional needs of people living with dementia, their carers and families.”

Working to achieve this goal, Alison has a key role at WAST as she talks to people about what they think of the ambulance service. Here are some of the issues people living with dementia have raised:

• I struggle to know when to call 999 and to deal with the process for call handling.
• It’s complex. Different questions are fired at me. Call handlers need to slow down. To have patience. 
• I need to be treated with respect – as an adult, not as a child.
• Get to me quickly. Be calm and compassionate.
• Realise the key role of carers when I am trying to access services.

Alison reported that WAST works closely with the Alzheimer’s Society putting in place suitable staff training. The other good news is that Ten Dementia Champions have so far been recruited across the service to raise awareness, and more are being sought.

Matt James and Dave Coombs of Welsh Ambulance Services Trust

Dave Coombs (also a volunteer with the dementia friendly Brecon Mountain Rescue Team) introduced us to trauma teddies, which are used to comfort ambulance patients, and the “Message in a Bottle” scheme whereby a person’s brief personal and medical history is stored in a bottle (provided by the UK Lions Clubs) in the fridge.

Neil Evans – Mid & West Wales Fire Service

Neil, Llandrindod Wells Station Manager, described how the fire service works to support people living with dementia who are at a higher risk of experiencing a fire. Staff at all fire stations have been trained as Dementia Friends. Using the Make Every Contact Count (MECC) approach, he and colleagues arrange free home safety checks, prioritizing those living alone, and people who are elderly, infirm, disabled or living with dementia. Neil described a scary scenario where someone who had used an Aga or Rayburn all her life put a plastic kettle onto the hob. 

Fire staff, now skilled in a range of areas, including: winter warmth, crime prevention, scamming, flooding, water safety, arson reduction, smoking cessation, slips, trips and falls, can when appropriate give advice on all topics. Group training is available for organisations as it is recognised that the voluntary sector is likely to have strong links with “the most high risk, hardest to reach” in the community. And – here’s an income generation scheme for groups – there is payment available for those delivering home safety checks.

Inspector Brian Jones – Dyfed Powys Police

After speaking on the importance of reporting hate crime, and introducing us to the force’s Strategic Equality Plan 2016 – 20, Brian asked us to give him some examples of likely incidents that police could be called to around dementia. “Misunderstanding a situation and reacting badly…” “There could be driving issues…” Telephone scams, domestic abuse and public order were also highlighted.

Brian explained that a person might walk over twenty miles in a day (there was discussion around terminology, “wandering” is not an appropriate term as people living with dementia walk with purpose). They could engage with others without anyone necessarily having any concern for them. Yet back home the family would be anxious and concerned for the missing relative. Searching for a missing person is a massive challenge over the large rural area that is Powys.

Police Community Support Officers throughout the county work hard to become known faces in their local areas, including at relevant groups where people living with dementia are supported to lead fulfilled lives. They understand that if people start talking about a different period of their life it is better to work with them. Call handlers are also trained to be aware of dementia as crime reports may not be all they initially seem… Someone may report that their car has been stolen – but it may actually be at the garage for repair, for example.

In South Powys the police are working closely with Brecon Dementia Friendly Community around a Dementia “buddy” scheme also known as Guardian Angels, inspired by a successful project in Wigan. Badges, wristbands or keyrings can be activated by mobile phone apps to display the contact details of close family members if people are found alone and in distress.

Questions to the panel

There is not enough space to cover all the issues the panel covered in any depth. I learnt that Community Connectors are asked to help if pets are left in an empty property, the police can flag repeat callers on their system, and that postal staff receive fire safety check training.

Chris Evans & Derek Johnston – Assistive Technology, Powys County Council

Assistive technology has a key role to play in the modernisation of health and social care services. There is already a vast array of equipment and technology available to support people to continue living at home following a dementia diagnosis (and a needs assessment) but Chris focused on telecare for this session. He described the benefits of technology:

• It drives down costs.
• It can prevent hospital admission.
• It achieves a faster and safer return to home from hospital.
• It delays admission to care homes.
• The biggest benefit, which is consistently reported: it gives confidence/assurance to the individual and/or family member.

The Powys Careline “offers a 24 hour, 365 day service giving total peace of mind at the touch of a button”, whether on a neck pendant, watch or wristband. Chris described numerous detectors. Some could cleverly sense smoke or gas, and others a person slowly falling from their chair. Pharmacists refill smart medication dispensers as appropriate. GPS trackers provide links to Google maps to reassure family members of a person’s whereabouts. Different needs? Different kit. The range was overwhelming and very reassuring.

And, for anyone wanting to find out more, there is a fully kitted-out flat in Christchurch Court in Llandrindod Wells where staff are trained and assistive technology open days regularly scheduled.

Heather Wenban & Kate Rayner

Heather Wenban – Dementia Lead, Powys Teaching Health Board

Heather works closely with Welsh Government to ensure that there are improvements in dementia care. A new Powys Dementia Plan will attempt to reduce the stigma around dementia so that more people from an ageing population will not be afraid to access support from their GP around memory issues.

Heather’s other updates:

• The memory service is undergoing a review to have parity across Powys.
• There are two Dementia Support Workers in Powys, plus a dedicated Dementia Nurse.
• Following the closure of the Fan Gorau Dementia Unit in Newtown a Dementia Home Treatment Team has been established.
• Education programmes are in place – Carer Information & Support Programme (CRISP) and Cognitive Stimulation Therapy (CST).
• Peer support is available in group settings, with knitting, gardening and Men’s Sheds all proving popular, and there is a dedicated carers’ group in Brecon.
• Hospital staff are receiving RITA training (I can’t keep up with the acronyms!). This is Reminiscence Interactive Therapies and Activities.

Heather concluded by saying that there is much exciting work still to be done in the future around provision of dementia services.

Carol Hay, Engagement Officer, Health & Social Care, PAVO
with a trauma teddy & a sample "Message in a Bottle"

Many thanks to Carol Hay for organising the day! Read Part 2, when you can find out how the afternoon of our Powys Dementia Network day panned out.

I found recovery in putting pen to paper

by guest author Charlotte Underwood

My name is Charlotte Underwood. I am a 22 year old mental health advocate and writer. I have fallen into a passion of writing and raising awareness of mental health and suicide by a beautiful accident; now I wouldn’t change a thing for the world. It’s ironic that for a long time I belittled writing and those who perused it, I had no idea that one day writing would save my life.

I used to laugh at my father for writing poems but now I know why he did it.

I remember the feeling of dread when I knew I had an English lesson. Writing and reading had become a chore, a forced constraint of my time – I hated it almost as much as I hated P.E. which was an immeasurable amount. The very thought of Shakespeare would make me groan in frustration.

It wasn’t always this way. As a child of maybe seven, I spent my spare time writing these stories about tornados (I was obsessed with the film Twister at the time) and writing a very varied volume of song lyrics. I was, at one point, an avid book worm. I could read before I could spell or even ride a bike, it was second nature to me. I was always running out of books to read and found myself wiser beyond my years. I couldn’t understand why no one else liked reading, when a whole new world was at your fingertips. I loved that I could be anyone I wanted to be, see anything I desired and it didn’t cost me a thing – except my pocket money. It was a blissful escape for a life which was hard on my younger self.

I feel like a mixture of those pesky teenage hormones, and the dullness of the school that I was attending, was why I lost my love of the novel and I why no longer enjoyed writing. All my creative juices were compressed into a shape dictated to me by the teacher, where is the fun in that?

Besides, I wanted to fit in and those who enjoying reading and writing were at the bottom of the social ladder, an easy way to get bullied. I never understood the reason for this but I never wanted to argue. I had a hard time fitting in and I was often picked on, so I didn’t want to give any ammunition to my peers. So, for the remainder of my school life, I stuck to social networking and gaming as that was cool, apparently.

When I left school, I could have picked up a book again or started to write but I had no time. If I wasn’t drinking with potential partners, or trying to get noticed online, I was working, like everyone else I knew – another social pressure. My brain was much like an empty fuel tank on a rusted vintage car.

Then a blessing hit me when I turned 20. It was disguised as a very traumatic job loss but turned to be the most wonderful gift. Once I had licked my wounds and made the most of not having an alarm clock or a routine, I found myself bored. I am a very independent person and I like to keep busy. I am very compulsive and can’t sit around and do nothing, so I had to find something before I started to relapse. I did not believe that I needed to write but I was wrong, so wrong. I only wish that I never gave up my love of literature because it seems now that my love had never gone, it was just buried under the weights of life.

I don’t know why I started but I began to write. I wrote a little each day - I must have started and stopped many novels. It was hard because I was trying to drink from an empty cup, though with time found the water I needed to nourish the blank paper. Eventually I found a passion for mental health and preventing suicide, as I lost my father in 2014 this way. I wanted to create something that would support people like me as I noticed how lonely it was to be a suicide survivor and that wasn’t right. Thus, born was my first book and the romance of my two passions, writing and mental health.

Since then, I have found myself entering short story competitions and have written a second short novel, as well as a full-length novel yet to be published. However, my love was found in poetry. Poetry allows me to bend the rules of writing, to ignore perfection and focus on emotion, it is a perfect match for my mental health advocacy – even flaws can turn into roses.

For what began as something to keep me busy, writing has become my therapy and daily self-care. I may not wash myself or brush my hair on some days but I will write, like I have every day for the last 6 months – without fail.

To write is an art but it is also a way to remove negative thoughts and feelings from your mind. From there you can start to unjumble it all and start to make sense of it. It’s enlightening and has been my biggest tool in recovery.

It’s worth a mention that writing has kept me feeling productive, and moving my hands is soothing to a person like me who cannot sit still, which means I have less time to allow that black dog back in.

I think I may write every day until my last.

If you would like to find out more about Charlotte's story, you can download her free e-book, After Suicide.