Why Dementia Friends is so important to break down barriers

The Dementia Friends initiative is a very special thing it’s about breaking down the barriers and misconceptions that surround this illness. The layout and training you receive is excellent. The first part of the training day is to make you a Dementia friend, once you’ve accomplished that it’s on with the training. It’s a very easy format with just enough information without sensory overload. It’s quick and to the point without becoming too technical or boring. A selection of activities are also used to illustrate the problems people with dementia have in their daily living routines, reiterating the five points about dementia, which are :-

  1. It’s not a part of getting old
  2. It’s caused by diseases of the brain – the most common being Alzheimer’s
  3. It’s not just about losing your memory
  4. People can live well with dementia with the right support and understanding
  5. There is more to the person than the dementia

The message of Dementia Friends came across really strongly and everyone was so enthusiastic. It’s a fantastic and simple idea that will make a real difference to the lives of people with dementia. It’s all about getting the message out there and expelling the myths and preconceptions that revolve around people with this condition.

By going around as many people and groups as we can we will be helping to improve the day-to-day lives of people with dementia and allow them to live normal lives for longer which in turn allows them more time at home with their loved ones, keeping people out of homes and saving the NHS millions! It has now rolled out to Wales where we attended the launch and actually ran an info session for Lloyd’s Bank for ITV in the morning prior. Watch the ITV interview here.

So it’s up to us to take responsibility to change the attitude towards dementia; by becoming “aware” we can shift previous stigmas and misconceptions, creating a dementia aware society and creating dementia friendly communities.

By becoming Dementia Friends Champions, we (the wife and I) hope to play a part in this huge social action movement, and create 100′s of dementia friends.

It is estimated that there are over 45,500 people living with dementia in Wales; two-thirds of them live in the community. Yet sadly they don’t feel part of our community, but with help and support people with dementia can play an active part for sometimes many years.
It’s all about turning understanding into action, it’s about educating people.

As I said earlier the wife, Jayne, and I do our sessions together – as a team. Why you may ask, well it’s a necessity :-

  1. It’s different, people quite enjoy the towing and frowing!
  2. We work well together; we’re a team in the house and out!

But the biggest reason, is that she is there to support me because at the young- ish age of 52 years, I have Vascular dementia and Alzheimer’s, a form of mixed dementia, so if I can be a Dementia Friends Champion any of you can do it! So please do! So you see it is possible to live with dementia, especially when you have understanding and support! Which is what Dementia Friends is all about and which is why we enjoy being part of this fabulous initiative.

Chris Roberts

Dementia Friends Champion

Meet Chella – New Regional Volunteer Support Officer for Wales

Hello, my name is Chella and I am the new Regional Volunteer Support Officer (RVSO) for Dementia Friends Wales. I am based in Cardiff in South Wales, but cover the whole of Wales.

I started in the role on 3rd March 2014 and attended Champions training last week in Southampton, run by RVSO Sara Miles. I thoroughly enjoyed the day and found the Information Session inspiring. I have actually already held my first Information Session as a champion as I couldn’t wait to get started turning my new understanding into action! This role as a volunteer Champion is definitely something I will continue with, as watching people being captivated, particularly during the bookcase analogy, and understanding the initiative felt fantastic.

I was nervous attending the Champions training and just as nervous as everyone else when it came to presenting my part of the information session, but without this chance to practice and seeing everyone else doing it, I don’t think I would have felt ready to hold my own session for a long time!

My previous job roles have been within the Third Sector, providing legal advice and advocacy to vulnerable people, providing training to outside agencies and managing volunteers within the advice sector. I was also a volunteer at a charity for women and children experiencing domestic violence for five years.

My interest in the role of Regional Volunteer Support Officer sparked after witnessing the difficulties people living with dementia can face when doing something such as attending a hospital appointment.

When I was in a hospital recently an older couple were in the outpatient’s waiting room about to leave, when the lady said to the gentleman, “Now, do you need the toilet before we go?” to which he replied “no”.

The lady continued “remember we will be in the car for over an hour when we leave so if you need to go you had better go now”.

The gentleman agreed and the lady ushered him right to the toilet door. I have to admit, that even with my background and knowledge, I watched on thinking she was a bit bossy.

About 5 minutes had passed and the lady was still stood next to the entrance to the toilets, now looking a little concerned. A few more minutes passed and the lady looked increasingly concerned. Eventually she approached the man sat next to me and asked him if he would check the toilets as her husband who has dementia had gone in some time ago and she was worried he was unable to find his way out. The man agreed, although looked a little startled.

When he came back out he said that her husband was in a cubicle. The lady then entered the toilets to assist her husband at which point the security guard approached her to ask her to leave the men’s toilets. She was able to explain the situation and finally help her husband who had indeed gotten confused and could not find his way out.

For me this highlighted the need for a more dementia friendly community, as had we all attended one of the Dementia Friends information sessions before hand, I’m sure the lady and the gentleman would have had the help and support they needed to make a necessary trip to the hospital less stressful.

I am excited about being part of such a fantastic social action movement and creating many dementia friends in Wales. I am currently looking at locations and venues around Wales to run Champions Training Sessions, so if you know anyone in Wales that is interested in becoming a Champion, please ask them to register as a Champion on our website and to keep a look out on the site for training in their area.

For those existing champions in Wales, please feel free to contact me at richella.borde@alzheimers.org.uk.

I have also started a Twitter feed @DFWalesRSO so please follow me if you are on Twitter.

I am looking forward to working with you all to make England and Wales more Dementia Friendly!

Chella Borde

Regional Volunteer Support Officer – Dementia Friends Wales

 

My first steps as a Dementia Friends Champion

Hi, my name’s Marilyn, I did my Dementia Friends Champions training last November, and I’d like to share my experience so far, because to begin with it was rather nerve racking and maybe others have felt the same. I would like to re assure people that once you make that first step it all starts to fall into place.

I heard about Dementia Friends through my employers, the Guinness Partnership. (Guinness are promoting Dementia Friends and have a target of 100 staff and 100 customers, becoming Dementia Friends). I was immediately drawn to learn more and become a Champion – perhaps because my mother (who passed away in 2002) had dementia, so I knew what it was like to live with the disease.

Once I’d done the training I was really keen to get started, but realised that I’d never stood up in front of an audience and talked on a particular subject before. As a Scheme Manager in Sheltered Housing I’m used to talking to people and holding coffee mornings and meetings, but the idea of preparing (and remembering) enough content to last 45 minutes to an hour and then presenting it in a way that people would enjoy and learn from, suddenly became very daunting. So much paper! How would I remember to say that bit on that sheet, and that bit over the page, oh yes, and  the bit about such and such?!!

I spent time condensing the most important points into a format that flowed and was easy to follow, (without rifling through lots of sheets). I also typed it out in a large bold font, so it would be easier to see and I wouldn’t lose my place. I spent a lot of time as I wanted to be sure that nothing important was left out, but it was so worth it and my first session went so much better than I’d anticipated. I did it with a group of my own residents and was delighted that 11 of them attended.

Once I started speaking, it really did flow; I’d gone through it so many times, actually practising speaking it out loud, and as I said the words ‘I’m passionate about Dementia Friends’ I realised that I really meant it . When you’re speaking about something that you really mean, it’s so much easier. I actually really enjoyed the session, because my residents were genuinely interested and asked questions and talked about their own experiences, some of which were amusing so there was a lot of laughter. One attendee said her action would be to tell all her friends on Facebook, one resident said she’d talk to the organisers at the clubs she goes to and ask if they’d be interested in booking a DF information session, another said she wouldn’t be afraid now, to speak to people with dementia and wouldn’t avoid them, as she’d been doing. Afterwards I felt exhausted but also exhilarated, and ready to do the same thing again.

I’ve got three more sessions booked over the next three or four weeks, and I know that it will become easier with each one. I’ve made 21 Friends up to now and hope to have at least 50, when I’ve done my next three sessions, so have confidence and know that you’re doing a great job, it may be a bit scary at first, but once you get a great reaction from attendees at your first session, you’ll be inspired to keep going!

Marilyn Keegan

Dementia Friends Champion

Uni student volunteers for the social action movement – Dementia Friends

When I was 19 my father endured a huge haemorrhagic stroke that left him completely paralysed down his right, and now 6 years later is in the final stages of vascular dementia. My mum, my sisters and I have been witness to every stage and constantly having to adapt to a ‘new dad’. My parents have been married for over 30 years, but sadly he no longer knows who my mum is anymore.

When I heard of the Dementia Friends Champions training I knew it was immediately something I wanted to hear about and be a part of. The training was a great day, dispelling any misconceptions I had, such as dementia just being for old people, and how often the media can get it so horribly wrong. Hearing the stories of the others in the training made me realise how different it can affect everybody of any age from all walks of life. I’m also a final 4th year speech and language therapist, on my placements I have encountered many patients with dementia, by attending the training I hope to implement the skills I learnt into my clinical practice and support patients better in the future.  As a champion I can now deliver Dementia Friends Information Sessions to my fellow students and help them to create dementia friendly communities.  It’s not just great for all of us involved in clinical professions, I also made friends with a girl on the Champions training who had just graduated in finance from a top London university, she told me how dementia awareness is crucial with assisting clients with their finances- therefore I definitely feel the training is relevant to all degree disciplines because inevitably we will all go into the working world and meet a huge scope of people.

It’s part of our role in society to take responsibility to changing attitudes towards Dementia, by becoming “aware” we can no doubt shift previous stigmas and misconceptions, and move in to a dementia aware society. By becoming a champion I hope to play a part in this huge social action movement – Dementia Friends, and create copious amounts of dementia friends… small steps but huge gains.  Another key message is that it is the first campaign I have been involved in which aren’t after money, just peoples time to sit still long enough to listen to the importance of being aware of this harrowing illness.

Dayna Clarke

Dementia Friends Champion

Dementia Tsar becomes a Dementia Friends Champion

To say I was nervous about training Alistair Burns to be a Dementia Friends Champion would be an understatement. He is the Dementia Tsar, the man who is to dementia what Lord Sugar is to business or Mary Portas is to the High Street.  I was in my third week in post at Dementia Friends and I was supposed to be training him?

Professor Alistair Burns (MBChB, FRCP, FRCPsych, MD, MPhil, DHMSA) is Professor of Old Age Psychiatry at The University of Manchester, Editor of the International Journal of Geriatric Psychiatry and the National Clinical Director for Dementia, among many other roles. His research and clinical interests are in mental health problems of older people, particularly dementia and Alzheimer’s disease. He has published over 300 papers and 25 books.

Alistair came to Alzheimer’s Society’s headquarters in London’s St Katharine’s Dock at the end of a busy day of meetings in Westminster.

We started off by going over what is covered in a Dementia Friends information session- we played bingo (not really a one player game!) and we talked about our five key messages:

- Dementia is not a natural part of ageing

- Dementia is caused by diseases of the brain

- Dementia is not just about losing your memory

- It is possible to live well with dementia

- There is more to the person than the dementia

I then braced myself before launching into the Bookcase Analogy. For those of you not familiar with this, it explains dementia in very basic terms, in a way that anyone can understand. I’d heard it at my first information session, loved it and used it at every information session since. However, now that I was describing it to the Dementia Tsar, I was not so confident… I needn’t have worried- he loved it! He’d never heard it before but agreed with the content and promised to use it in his own sessions.

Having Alistair as a Dementia Friends Champion is fantastic. He has a huge circle of influence- he regularly attends hospital meetings with a wide variety of organisations. It is at those meetings that he has been delivering Dementia Friends Information Sessions.

So, Champions… Next time you are leading a game of dementia bingo, or standing next to an imaginary bookcase, think of all the other people doing the same thing, from Plymouth to Newcastle. Our Champions are the most important part of our programme- we won’t reach one million people, you will! Thank you

Natalie Rodriguez is the Operations Manager for Dementia Friends. She trained Professor Alistair Burns as a Dementia Friends Champion.

New resources for Dementia Friends Champions

Having enjoyed my volunteer role as a Dementia Friends Champion, I was excited to see in a Dementia Friends newsletter that Dementia Friends was recruiting a West Midlands Regional Support Officer and I jumped at the opportunity. Since joining the team, I have noticed several changes to resources for Dementia Friends Champions, which as an existing Champion I have found really helpful.

These new resources for Dementia Friends Champions are available online, so take a look! 

When I completed my training back in April, I came away feeling really enthusiastic and raring to go. However, by the time I had gathered my friends and family together for my first information session, feeling a bit nervous, I was concerned I wouldn’t cover all the key points within an hour. Armed with the new session plan and guidance notes, Champions needn’t miss anything from an information session again. The one-page session plan is a really simple tool to ensure you cover all the necessary parts of an information session. I have found it a really useful prompt when delivering sessions – it also helps keep my timing on track! I think the guidance notes complement the session plan really well, giving you the finer details required for each session. Everything you need to do can be found in the guidance notes with step by step instructions. I would really recommend Champions use these resources to guide the delivery of every information session – they really are helpful! Just log onto your dashboard and download them from the resources link.

There have also been some other developments to Dementia Friends resources since I became a Champion last April. Following Champions feedback, the ‘Penny’ exercise has now gone and many other resources have been created. Champions have informed us they really like The Bookcase Analogy but that a guidance sheet would be good. Having left it a few weeks before delivering my first session, I too felt I would have benefited from a guidance sheet. Trying to remember exactly what Carerra had said in my training proved difficult in practice. A new easy-to-follow guidance sheet is available online and explains in simple steps how to deliver the analogy well.

My favourite new resource has to be the infocards. In the training session I attended, Carerra mentioned that infcards would be arriving in the near future. Now they are here! It is really important all Friends receive an infocard, as they contain a lot of important information. Infocards remind Friends of the five things everyone should know and provide some examples of how to turn this understanding into action. They also have instructions for Friends to record their actions online as well as how to find further information, as they often have questions we cannot answer as Champions. If you haven’t yet ordered your infocards, don’t worry, it’s really easy. When you have attended Champions training and entered your code online, you will have access to your dashboard. Here you can order you infocards and badges, by simply clicking ‘order 50 badges/info cards’. Within 10 working days your order will arrive at your door. Each time you deliver an information session Friends should take away a badge and a card.

I hope you find these resources as helpful as I have, and remember to contact your Regional Support Officer if you need any further support.

Good luck in your upcoming sessions and let us know what you think of the new resources!

Ann-Marie Snelsen

Dementia Friends – Regional Support Officer

 

Guest Blog – Creating a dementia friendly Chichester

Dementia Friends badges

Dementia Friends show off their badges

I am happy to say we have made a huge impact starting with our own staff, gaining more confidence & transferring the skills for public sessions. We have successfully completed 5 Dementia Friends information sessions in the last two months. To make it more fun, at the end of each session we encourage attendees to pen down thoughts they want to action & have a quick discussion on those. It has led to very interesting results from Volunteering interest with Alzheimer’s to fundraising and including further Dementia Friends Champions across our sister care homes.

Some of the discussion has also highlighted some of the preconceived notions about abilities & skills relating to people affected by Dementia. I think as a facilitator it has been fantastic to get these conversations or discussions going.

We are a team of 50 working in a care home setting & as part of Anchor Trust we are great with our personalized care & living well with dementia is our motto.  I find these Dementia Friend’s sessions closing the community gap, giving shape to one structure & meaning to straightforward dementia awareness sessions across the board.  Like one of our attendees who is a local councillor rightly said she found them ‘simple & people friendly’ & almost everyone loves the ‘who’s right’ activity & it really gets every one talking. We make sure we have it on all our sessions.

We still have a long way to go & lots of more sessions to hold with the same excitement & zeal. We hope to reach out to local shops, supermarkets, taxi companies & our local colleges. It feels great to be part of the revolution & making positive noise about dementia. It’s a stupendous effort as a community to be personally accountable & we are in awe of the courage shared by our groups with their stories & personal experiences.

Our latest victory has been to tie up with Napa challenge & we are holding our 6th dementia friend’s session at our home.  We have challenged ourselves to hold it for a unique group of attendees from varied backgrounds, varying from taxi companies to police constables & win the challenge for our home.

Our next Dementia Friends information session is running on 25 September in Chichester. The session starts at 11am, please come along and help to create a dementia friendly Chichester. 

Augusta Court Dementia Friends Champions – Simanti Nandi, Sue Townend , Sharon Grobelaar & Deirdre Johnson.

Guest Blog: My Dementia Awareness Week by Adam Hayward

 

Adam Hayward Image

“Can you write a blog for us Adam?” they said.  “About how Dementia Awareness week went and how I ran my Dementia Friends Sessions?”, “Yeah, no problem!” was my immediate response on the telephone.  Then I turned to my wife, George, “So, what’s a ‘blog’?”

I have been a nurse for 8 years now, mainly looking after older people in hospital settings.  Somewhere between Christmas and New Year I decide that I was going to say “yes” to as many opportunities that came my way and see where life took me.  Not so much a New Years resolution, more a personal experiment in positive thinking.

One such opportunity arose during a meeting in Nottingham with the Dementia Action Alliance.  It was mid April and Dementia Awareness Week was rapidly approaching.  I realised the potential that the Dementia Friends programme has for raising awareness and making dementia friendly communities a reality.  My grand idea was to deliver short sessions during work breaks, with a light, interesting but enjoyable approach to as many people as I could.

First I had to become a Dementia Friends Champion, something I achieved one showery Friday in Milton Keynes Library.  It was a great day that filled me with ideas about what to do next.  I decided that the best way to sign up as many people as possible to the Dementia Friends programme would be to book a room within my hospitals education centre and advertise the sessions as soon as possible.  I booked two rooms on each day for the whole week (ten sessions in total) and advertised the sessions via the Dementia Friends website and on my works bulletin board.  Not really expecting much response, I got on with ‘business as usual’ and half forgot about it.

The week before Dementia Awareness week, I practiced my Dementia Friends session on George and my sister, Ann.  We all stood around a laptop in our kitchen, stirred dinner, drank a beer, drew some pictures of a penny and talked about dementia.  After 30 minutes, dinner was ready, and I had signed up my first two Dementia Friends!

Monday

I’ve never really been a fan of Monday, even less so lately.  Our two boys, Thomas (5) and Nathan (2), insist on waking at 5:30 for their daily monster hunt around our bedroom before charging downstairs to continue their 120 decibel demolition derby.  At least I have no need for an alarm clock anymore!  After the breakfast club and nursery drop off, it was a cup of tea on the run before meetings and a look at my overfull voicemail and email inboxes. By far, the highlight of my working day was the Dementia Friends sessions!  Informal and chatty, both sessions over-ran the allotted 35 minutes, but it was great to see people discussing dementia and what it means to them.  Mainly attended by staff from the hospital, it was also nice to see a group of volunteers.  I really enjoyed dishing out the badges, though working during my breaks left no room for lunch!  This was rectified with a sausage and mash mountain for tea. 

Tuesday

The breakfast club and nursery run again, then a full days work. I’d decided to include a short video in the sessions.  I found myself needing something to break up the session a little, especially if the group was quiet.  I used a video I found on the Alzheimer’s Society YouTube account (the one with Fiona Philips) and it worked well (it also gave me a couple of minutes to eat some lunch).  The sessions were better attended than I anticipated, I even had to find a couple of extra chairs!  A small group of local solicitors came to the session in the afternoon.

Wednesday

By far the busiest day of the week.  The sessions were great and I felt much more confident in my delivery.  A few more solicitors attended, though I’m not sure what they made of it all (they were a bit quiet).  I introduced the ‘who is right’ game into the sessions to get people moving, most people are keen, though a few didn’t like the idea of leaving their seats and walking about.

Thursday

After two well attended sessions I signed up my boys to be dementia friends.  Their pledge is to visit their Great Grandmother more often as her dementia disappears when sings and plays with them at her care home.  Thursday was finished off with an evening sat in front of the computer, putting the finishing touches to an assignment for my degree module.  I was glad to see my bed that night!

Friday

The morning session was well attended.  A group of physiotherapists came, though they were a little shy.  The afternoon session had only a few people turn up.  It was by far the longest session, running over by nearly 45 minutes.  The discussions were interesting, emotional and funny.  I was proud to be signing up such committed, selfless people to be Dementia Friends.  If these people are the foundation of our dementia friendly communities, we are on our way to making real change for people living with dementia!

In a nutshell, that was my dementia awareness week.  I’m planning to deliver more sessions in the near future, though I’ll space them out a little more.  I have the local Women’s Institute booked in for October, and I am doing a session at our annual family barbeque in August (let’s hope the sun shines!).  I am also finalising a British Sign Language interpreted Dementia Friends session to deliver to the deaf community in the midlands in the next few weeks.

 

Meet Nathan Jelf-Mannion – Dementia Friends Digital and Marketing Manager

Image of Nathan Jelf-MannionMy name is Nathan Jelf-Mannion and I am the new Digital and Marketing Manager for Dementia Friends.

I am very excited to be part of such an important initiative to really change the way people think, talk and act about dementia in England. With over 4850 Dementia Friends already, we know we can bring about a step change within communities, improving the lives significantly of people affected by dementia

It was great to start working at Dementia Friends before Dementia Awareness Week and follow the activity Dementia Friends and Dementia Friends Champions were doing across England before, during and after the week. I’ve connected with our Dementia Friends and Dementia Friends Champions via social media and seen how they network and communicate with one another.

Lots of you are really engaging with us and each other on social media: we now have 5361 likes on Facebook and 3187 followers on Twitter.  Please do follow us on Twitter or like our Facebook page as they really help us all share tips and build the Dementia Friends network.

I recently became a Dementia Friends Champion. It was inspiring to meet other newly trained Dementia Friends Champions and talk to them about their motivations and experiences in taking on the role. Everyone’s keen to see how they can build local networks with other Champions, and I’ll be working on straightforward guidance for using social media to support this.

Another area of my work involves the development of the Dementia Friends website. As some of you who have been following Dementia Friends for a while will know, we launched the site quickly, to make sure that people could register with the initiative and sign up as a Friend or Champion.

We’ve just completed the first set of improvements following the launch.  They have been based on your feedback and usability testing, and aim to make the website easier to use. The most recent changes include: better accessibility; improved navigation and functionality of dashboards for Dementia Friends and Dementia Friends Champions; and improved FAQs area.

We have also made a change to allow people who are a Dementia Friend or who have set up a Dementia Friends account to convert it to a Dementia Friends Champion’s account by using the dashboard in their log in area, if they have decided that they would like to take on the Champions’ role and help spread the message more widely in their communities. Find out more about these changes.

Finally we are always looking for good stories from Dementia Friends and Dementia Friends Champions so why not get in touch on Facebook, Twitter or email us.

Nathan Jelf-Mannion, Dementia Friends – Digital and Marketing Manager

Meet Dementia Friends Champion Ali Harrison

Ali Harrison image

Ali Harrison image

Ali Harrison applied to be a Dementia Friends Champion while on holiday – and has not looked back since. She explains why she is getting so much out of Dementia Friends.

My late mum had vascular dementia. While I was going on that journey with mum I had to learn by doing – there were no resources I could readily turn to.

I am now at a crossroads in my life and am about to retire so I’m looking for things that I feel really passionate about. I signed up to the first Dementia Friends Champions’ training session I could – even though it was in London and I live in Macclesfield.

I’ve run two Dementia Friends information sessions for people at work and am about to run my first ‘open’ session in my local church hall. It’s a little scary and I’ve learnt from each session but you get such a buzz afterwards. It really builds your confidence and I’m learning which of the Dementia Friends resources work best in different groups.

My personal favourite is the bingo exercise and I jazz it up a bit. For the session I ran close to Easter, I had people rolling chocolate eggs down the table as they called out numbers.

So far I’ve had some great reactions after the Dementia Friends’ sessions. One colleague was going to take her daughter with her when she next visited a neighbour so the neighbour with dementia could interact with younger people – she’d read in the Dementia Friends hand-out that that could be helpful. And I’ve had people ask questions they were too scared to ask before, such as if they were more at risk from dementia. It is really empowering to be able to signpost people to the information they need with confidence.

I’ve linked up with my local Alzheimer’s branch and met the manager. I wanted to talk to her and feel confident about signposting. It’s one of the things I’m most enjoying is making links in my local community. I met two women at a business meeting recently who were keen to know more so I connected with them through LinkedIn. There’s lots of networks people are already part of that you can use.

I don’t particularly like to admit it but I’m a little bit competitive. I’d like to think I could develop a niche of Dementia Friends up here in Macclesfield and turn this area into a really dementia friendly community. It’s an absolutely fabulous opportunity.

If you would like to volunteer as a Dementia Friends Champion please read more then set up an account. You can then search for training sessions.