Q&A with Anne Devrell, Dementia Friends Champion

Anne Devrell is a Dementia Friends Champion who frequently carries out Information Sessions. Below she talks about her experiences as a Champion, and offers advice to others in a similar position – working hard give people an increased understanding of dementia.

How did you get into being a Dementia Friends Champion? What inspired you to do so?

Having been a carer for my Mum I wanted to find some way of helping others avoid the lack of information, understanding and support that we had experienced. While surfing the internet I stumbled upon the Dementia Friends site where I found the details of local Information Sessions.

After attending the Session I felt that I had the necessary skills and commitment to become a Dementia Friends Champion as one of my ‘personal actions’. Champions are volunteers who encourage others to make a positive difference to people living with dementia in their community. They do this by giving them information about dementia and ideas on how they can turn that understanding in to action.

I received positive feedback at the Champions Training Session and despite feeling nervous, I booked my first Session within a month as I believed that if I didn’t I may lose impetus and confidence. My first session was at my local surgery for practice patients.

Do you have any tactics or tips for facilitating the Sessions and making them as engaging as possible?

In terms of the tactics I apply, I try to be as demonstrative (but not theatrical!) and practical as possible. I typed out the whole Dementia Friends Session for myself using diagrams and colour (I’m a visual learner) and organised it into sections. As I’ve become more experienced I can visualise each section and interact more with the group. I make sure I know I have everything I need at every Session!

As I move around, I try to include all attendees; stepping aside when they share experiences and provide input.

When delivering the ‘bookcase analogy’ I pause for silence at times so that attendees can think things through. I make links with other elements of the Session, and consider the participation of attendees.

When giving my Sessions, I am always at least half an hour early; I do this to set up but also to meet early attendees and strike up a relationship with them. I always encourage input but state clearly that this is not necessary. I smile a lot and use my hands!

You’ve run Dementia Friends Information Sessions to a variety of people, in a variety of environments. Do you tailor your training to your audience in any way, and how do you do that?

I do try to tailor my Sessions. I use the ‘Bingo’ activity for larger groups, and ‘Broken Sentences’ for smaller ones. I do this because I think the broken sentences device creates more discussion between attendees in smaller groups where they could feel under the microscope a little more. By allowing discussion, I’ve found people are more confident to share/discuss something they’ve already aired with a partner.

I don’t want people to feel defensive, I want them to be open to everything and I encourage them to reflect on the position they’re in and what it means for them and the people they might meet who are living with dementia. Sometimes silence and quiet, personal reflection is more powerful than talk.

What has been your most difficult Session so far? Do you have any advice for other Champions on how to deal with these situations?

Memory Cafes have been my most challenging Sessions, but also the most inspiring. I feel humbled and in awe of what they achieve. I think it is here that I’ve worked hardest at completing the whole Session because when those attending are living with dementia their voice has to be heard. I reinforce the 5 key messages more in these Sessions so that they can share them with others.

Could you tell me about your favourite Session so far? What makes a good Session for you?

Among my favourite Sessions are ones where young people have attended, where there are more attendees than expected, where I receive a request from a group who have heard about my Sessions and lastly when I deliver to local Council teams!

How does being a Dementia Friends Champion fit into your daily routine?

It seems like a lot, but in terms of fitting it all in, firstly I’m retired and committed, which means I can give a range of dates and times to find those that suit requests; secondly, the Sessions are only an hour long!

Taking action to help those living with dementia

When Mark Shone, Community Safety Manager at Cheshire Fire and Rescue Service, became a Dementia Friend at work he thought it would give him a better understanding of some of the vulnerabilities they need to take into account when undertaking home safety checks and other fire prevention work. What he didn’t expect was to draw on that learning outside of work:

‘I was enjoying a Sunday afternoon film when there was a knock at my front door. Expecting it to be an electoral canvasser, I reluctantly answered but instead found an elderly lady, clearly very cold and very confused. She said she was looking for a particular street, as her brother lived there. Being local I knew instantly that street didn’t even exist in Chester so asked her what her name was and where she lived. She could recall her name, but not her address or how she’d got to my street. It was clear she had some kind of dementia.

I invited her in and got her a glass of water, while I phoned the police’s 101 number. About 20 minutes later two officers came and they were able to look in her purse for some identifying information. Eventually they established she lived with her daughter and son-in-law some 10 miles away. She had somehow left the house, without them noticing, with coat and overnight bag and we think, by means of a passer-by giving her a lift from their village, got into Chester. They were shocked but grateful she was safe and came immediately to pick her up. They explained she had just begun to start wandering and were already seeking advice from the community mental health team.

Without my Dementia Friends awareness I doubt I’d have understood why the lady was so immaculately dressed, why she could recall her name and that of her brother and why she knew precisely where she needed to get to (her childhood home)…but at the same time didn’t know how to get there and was unable to tell me where she now lived. I also recalled how people with dementia may not remember the detail of a recent encounter, but would nevertheless retain the feelings and emotions from it. For that reason, I had the confidence to stay calm, friendly and patient with her.’

Guest blog: A dementia-friendly theatre performance

Nicky Taylor, Community Development Manager at West Yorkshire Playhouse and Dementia Friends Champion, tells us about the dementia-friendly performance they recently ran at the Leeds theatre.

Going to the theatre is an experience many of us look forward to. In my role as Community Development Manager at West Yorkshire Playhouse in Leeds I have seen the profound impact a visit to the theatre can have on people living with dementia and their families. For the past 5 years I’ve been leading creative activities for people with a diagnosis of dementia and through these participatory projects I have supported many people living with dementia to see theatre shows. Starting with preparatory themed workshops, we also explore the set and costumes and meet the actors, to enhance their theatre experience.

A pre-show singing session where attendees learnt songs from the musical together. Those attending the dementia-friendly performance were encouraged to sing along during the show if they wished.

The positive responses I noticed in terms of concentration, communication, creative expression and laughter convinced me that a dementia-friendly performance was the natural next step. In early 2014 at West Yorkshire Playhouse, we started to explore what a performance of this nature might entail, consulting with people living with dementia and those who support them. How might individual experiences of dementia challenge us to re-think sound and lighting cues, or the actors’ performances? What is it like to arrive at our venue if you have issues with visuospatial perception? How could we make adaptations to support people who find it difficult to be in a busy environment? And how could we convince people to leave the house if they haven’t attempted to in months?

Fast-forward a year and with an enormous commitment from everyone involved, we have now staged our first dementia-friendly performance. Over 400 people came to see it. Our company of actors were profoundly moved by the connection they made with their audience. Some said it was the most special performance of their careers. A team of over 40 staff and volunteers committed to meeting and greeting, assisting people to their seats, manning a quiet space, guiding people in an unfamiliar environment, and most importantly, understanding some of the challenges of living with dementia. In this, my role as a Dementia Friends Champion was key. I led 4 Dementia Friends sessions in advance of this event, for staff and volunteers, for students from a local college and a local primary school. Sessions enhanced people’s understanding of dementia and impacted directly on how they approached their roles on the day. Participants commented on the clarity of the Dementia Friends information and how empowered they felt. One volunteer in her 70s, commented that the event was ‘the best thing I have been involved in in my entire life’, which was incredibly humbling.

Seeing so many people wearing their Dementia Friends badges on the day gave me an enormous sense of pride and reassurance, and this understanding clearly translated to the interactions people had on the day. As a member of the Leeds Dementia Action Alliance, West Yorkshire Playhouse is continually developing as a dementia-friendly organisation, and Dementia Friends is key to this. We have over 80 staff who are Dementia Friends, and are planning more dementia-friendly performances. The demand is there and the feedback has been wonderful. As one audience member said ‘you have made my Christmas!’

Dementia Friends Champions: Ask your RSO

Ask your RSOEach month, one of our RSOs (Regional Support Officers) answer your Dementia Friends Champions questions. Hannah Piekarski, RSO for London and the South, answers this month’s question:

Dear RSO

I know that the end of March 2015 marked the end of government funding for Dementia Friends. It’s great news that Alzheimer’s Society has decided to continue the programme, but what does this mean for me as a Champion? Will I have to deliver my Session any differently?

Anonymous Champion

Dear Champion

I’d first like to thank you for helping us reach our first big Dementia Friends milestone of creating one million Dementia Friends – this success would simply not have been possible without you!

As you know, Dementia Friends was first funded by the Cabinet Office and Department of Health for England until the end of March 2015.  But don’t worry because Dementia Friends won’t stop there!  We have already started the next phase of our programme and I wanted to tell you a little more about this.

Our new goal

Now that we’ve hit our first milestone, Alzheimer’s Society has committed to reaching a further 3 million Dementia Friends over the next 5 years – creating a new target of 4 million Dementia Friends by 2020! We would love for you to continue to help us with this by running Information Sessions so that one day, everyone will be a Dementia Friend.

Our funding

As our government funding finished at the end of March 2015, Dementia Friends is now funded by voluntary donations made to the Alzheimer’s Society.

What this means for you

The changes described above should not mean any major changes to your volunteer role. Please continue running Information Sessions just as you have been and making Dementia Friends, just like before.

However, there are a few things that we would like you to be aware of:

Information Session content: During the ‘What is Dementia Friends?’ part of the Information Session, you will no longer need to explain that the programme is funded by the Cabinet Office and Department of Health for England.

Resources: We will be updating all of our resources in due course. Please continue to use the infocards, action mailers, Dementia Friends badges and the resources on the website, just as before. Don’t worry that some of your resources may still refer to government funding.

Website: We will be updating the website over the coming month, so the front page will look a little different from mid-April. 

Donations: Please continue not accepting any donations in return for running a Dementia Friends Information Session. However, if people would like to donate money to Dementia Friends, please direct them to the Alzheimer’s Society.

It is fantastic to have you on board as we embark on the next exciting phase of the Dementia Friends initiative.  Please do let do not hesitate to your RSO if you have any questions or concerns about the changes above or anything else.

Get inspired to #DoSomethingNew for Dementia Awareness Week 2015

For Dementia Awareness Week 2015 (17-23 May), we are encouraging all our Dementia Friends Champions to #DoSomethingNew – it could be that you run your first outdoor Session at the local park, do a Session in the middle of the night or run a Session for a group you’ve never delivered to before.

Lots of our Champions are already running interesting and unusual Sessions across the country, such as Mandy Rowlands who ran a Session at a city farm in Southampton. The farm was looking to run farm experience days for people with dementia and so Mandy stepped in to help.

‘The staff were keen to have a little more understanding of dementia and so we invited their staff to become Dementia Friends and I ran the session for them at the farm. It was great as they introduced me to all the small animals including a sugar glider!’

Val Mathewson ran a Session for her brother on his canal boat

Val Mathewson took the chance to hone her Champions skills by delivering a Session for her brother on his canal boat. She said the chance came about as her brother was in the area after ‘cruising around the canals for the previous eight months or so.’

‘We were talking about our mum and my volunteering as a Dementia Friend Champion and how it is possible to support people to live well and break down stigma.  He said he would like to complete a session, so we followed the session plan and carried out the bingo and bookcase activities to deepen his understanding which he really enjoyed.’

Using an informal, relaxed setting is a great way to gain confidence as a Champion and practice the Sessions. This is exactly what Debbie Hewitt did when she spent a weekend camping with her friends.

Debbie Hewitt delivered a Session whilst on a camping holiday.

‘We all came together in a semi-circle in the middle of the grass areas, it was a nice warm day and we had drinks and nibbles. Despite the relaxed atmosphere, everyone took it seriously, asked questions and enjoyed the activities. The ‘who’s right’ activity in particular created a good debate.’

The possibilities are endless for fun, interesting and informative Sessions, so start thinking about what you can do for Dementia Awareness Week 2015.

Taking Dementia Friends into schools

Dementia Friends Champion Emma has been delivering Information Sessions in schools. Here she tells us what the response has been like from the children and gives us some top tips…

“I wanted to run Dementia Friends Sessions in schools from the word go. I love the way children soak up everything like sponges, unlike adults, they have no pre-conceived ideas about dementia. Maybe they just see it as Grandma being funny but they never see it as a bad thing. I have worked with year 4 children upwards – every age group has got something out of it. Even when you think they’re not listening it seems to go in!

I try to make it as light hearted and funny as possible for the young primary school children. Making it as visual as possible helps the children remember the points I’m trying to get across. The activity with the ball of wool is a real winner. I print off some pictures of clothes and give them out all jumbled (it’s quite amazing how many children want the pants picture). When I come along as ‘dementia’ with my scissors to snip the wool, I get shouted at and booed like a pantomime baddy!

The responses from parents whose children have taken part say that the children have loved the Session and have told everyone who’s been within hearing distance about dementia. Job jobbed and I am a happy Champion!

My main bit of advice is that it’s all about making it fun and interesting for the young children and then treat the older ones like grown-ups. They all ‘get it’ more than we give them credit for. Also, just be prepared for some unusual questions!”

If you’re a Dementia Friends Champion and are interested in running Information Sessions for young people, we’ve loads of resources on the Dementia Friends website. Just login and go to ‘Session Resources’.

Dementia Friends Champions: Ask your RSO

Ask your RSOEach month, one of our RSOs (Regional Support Officers) answer your Dementia Friends Champions questions. Hannah Piekarski, RSO for London and the South, answers this month’s question:

Question: Dear RSO

I am hoping to deliver the young people’s Dementia Friends Information Session but I’m unsure about using the Action Mailers, can we use those for all ages or are there issues around collecting data of children? How can I evidence their actions?

Anonymous Champion

Hannah’s answer: Dear Champion,

Great question and you are absolutely correct to be cautious about children’s data. The answer depends on the age of the group; please see below for the appropriate option:

For 6-10 year olds:

Please download our ‘tell us your action’ slips for 6-10 year olds from the website and hand these out. Encourage the children to write/draw their action(s) on these slips.

For the 11 – 13 year olds:

Use the ‘tell us about your action’ slips for 11 – 13 year olds, also on the website. These include some suggested actions.

Both of these slips are not to be posted to the Dementia Friends team but we still want to gather evidence of the impact your sessions are having. So at the end of the session please take a photo of the slips laid out on a table (at a resolution that we can read them!), or make a list of the names, age, and actions and pop them in an email to your RSO.

For the over 13 year olds:

In most cases the normal Action Mailers can be used, but this depends on which version of the Action Mailer you have.

Where you cannot use the Action mailer, please substitute with the 11-13 year old slips.

There are 3 different versions in circulation, here’s what they are and what you should do if you have that version:

  1. V1 Includes a ‘Text us your action’ section and makes no reference to age – Only hand out to young people 16 and above
  2. V2 Text us your action has been replaced with ‘if you are under the age of 16 please check this box and do not complete the personal details section below’ – Hand out to young people 14 and above
  3. V3 Asks if the person is under 18 and if so to provide their date of birth – Hand out to young people 14 and above

Return completed Action Mailers to us in the usual way within the freepost envelope.

For more detail I’d recommend reading the guideline “Children’s Action Mailer instructions” which you can find on the website under Session Resources>Session Planning.  If you are not sure what resource to use with gathering and recording action please contact your RSO!

Creating a more dementia-friendly NHS

Sisters and Dementia Friends Champions Jude Andrews & Di Roberts have set themselves the impressive task of running 26 Dementia Friends Information Sessions over eight weeks for staff at the Royal Derby Hospital, including four Sessions on NHS Change Day on the 11th March.

Jude and Di attended Champions training in December 2013. After taking a short break from running Information Sessions, they took part in the Getting Started webinar which helped them to re-energise and come up with the idea for their challenge. We spoke to Jude and Di to find out why they became Dementia Friends Champions and how they’ve been rolling out the Information Sessions to hospital staff:

What inspired you to become Dementia Friends Champions?

We cared for our Mum with Alzheimer’s for 11 years.  We had to fight every inch of the way with every aspect of her care. If we can make this journey easier for one person living with dementia then that would make it worthwhile. The most rewarding thing about being a Dementia Friends Champion is knowing that, in however small a way, we could be helping other people.

And why do you think it is important for hospital staff specifically to become Dementia Friends?

It’s important for staff to have some understanding & compassion towards families living with dementia. The staff have been really keen to get involved and attend a Session. Di works in the pharmacy at the Royal Derby Hospital and at their annual meeting 95% of the staff voted to attend a Dementia Friends Information Session. The Therapies department then requested to participate making a total of around 700 staff. And staff have been allowed time out of their working day to attend the Sessions.

Have there been any challenges in organising the Sessions? Or running them?

There have been some challenges in promoting the Sessions to staff including the fact that a lot of hospital staff have mandatory dementia training and they thought this was a repeat of what they had already attended.* We’ve also had times when the Sessions have been communicated as ‘training’ despite our instructions, so we’ve had to clarify that it is about raising awareness and reducing stigma, not formal training!

Do you have any top tips for other Champions who are looking to run Sessions in their workplace?

Make sure they are well communicated; don’t assume colleagues will, or won’t, want to attend. Don’t be nervous, it’s fun! Engage eye contact and smile :)

We’ll catch up with Jude and Di in a few weeks’ time to find out how they’ve been getting on.

If you’re interested in becoming a Dementia Friends Champion, visit dementiafriends.org.uk

*We are aware of the mandatory training that NHS staff are being asked to complete and we are working with Health Education England to find ways of including Dementia Friends as part of the NHS training.

Champion’s advice: How to get local businesses engaged with Dementia Friends

Dementia Friends Champion Rosemary Farr has had some brilliant success in approaching local organisations and getting them engaged with Dementia Friends. Here she talks about her experience and gives some invaluable advice for other Champions out there who are looking to connect with local businesses.

“After training as a Dementia Friends Champion, I was keen to start organizing some Information Sessions and thought that local community organizations would be a good place to start. However a number of email enquiries went unanswered and I asked my Regional Support Officer (RSO) for help. I was put in touch with some other Champions in my area and began to get some feedback and more ideas. Through one connection I discovered that there was a county-wide dementia awareness programme including a Dementia Action Alliance (DAA), and also that a branch of the charity Mind were working with the County Council to help make the area more dementia-friendly. These were key discoveries and contacting Mind and the DAA enabled me to be part of a much bigger picture and to deliver Dementia Friends Sessions in places that I had never imagined.”

“I helped to contact lots of the shops and businesses in my local town and then me and other Champions would deliver Dementia Friends Information Sessions to staff in shops and other customer-facing outlets in town, e.g. library, dentists, hairdressers. Often, as they were small businesses, I had to conduct Sessions during the shop working day and sometimes on the shop floor! The dental surgery held their Session in the staff lunch hour, with everyone munching on sandwiches whilst doing the games and activities! The hairdressing salon blocked out appointments for the last half hour of the day to enable staff to attend the Session. It was amazing to see the enthusiasm of the whole town to get on board a dementia-friendly community initiative and the Sessions were always well received. People attending the Sessions always learnt something new. I had to push some personal boundaries to have the courage to start delivering these Sessions but once I had done a few it became very easy and the positive aim of the programme helped to spur me on.”

My top tips:

• take some time to research DAAs in your area. Look on the website of your local county council to see if any initiatives are underway. Ask your regional AS office if they know of any other organisations that are involved

• it’s easily possible to approach small shops and businesses in your high-street and if you start small you might then be able to work up to larger organisations

• you might be able to team up with other Champions in your area

• think of the benefits of become Dementia Friends for customer-facing businesses and sell it to them (our new ‘Local Business Engagement Tool Kit’ can help!)

• One of the challenges in delivering Sessions to shops is finding times that staff can attend. The same was true for speaking to volunteer-based organisations. However even talking to some of the staff is better than none! Or you could offer open Sessions at shop closing times for businesses to come together

• You can do this without the support of a wider initiative – don’t be afraid to make the initial approaches

• I contacted businesses by telephone and email at times but often a personal visit really does the trick. Have some information on a handout as to what the awareness Sessions are about and leave your contact details. Follow up if you don’t hear from people. If shops know that others are doing it too, they will want to join in

Thank you Rosemary for sharing this great advice! If you are a Champion and are looking to engage with local businesses, download our ‘Local Business Engagement Toolkit’ from the Champions dashboard.

Meet Sara Miles, Relationship Development Manager – Dementia Friends

am the Relationship Development Manager at Dementia Friends which means that my role is to support businesses and large employers to roll out Dementia Friends across their organisation. Myself and my colleague Ravina will also proactively contact organisations to talk to them about what a great initiative Dementia Friends is and how they can be involved.

So how do we decide who to contact?
Well we want everyone to be involved so our net is spread pretty wide. However, there are only 2 of us so we have had to reign ourselves in a little! We have looked across different sectors such as travel, retail, banking and health to help us have some focus.

If you imagine a typical journey to go to your local high street and do some shopping. Who do you see? What staff do you come into contact with?
We want the bus driver who takes you to the high street to be a Dementia Friend. The member of staff helping you to find what you want in Argos, the barista in Starbucks and the bank clerk in Lloyds….we want them all to be Dementia Friends.

How do organisations get involved?
There are different ways that organisations can get involved. This includes staff attending public Champions training sessions and running as many Information Sessions internally as possible, an existing local Champion running a large session for them at conferences or meetings, or by hosting the Dementia Friends videos on their own e-learning systems or intranets for staff to engage with. Generally we have found most use a mixture of these ways in order to reach as many staff as possible in a variety of roles.

What sort of things are happening?
Lloyds Banking Group booked staff in their call centre time off the phone during Dementia Awareness Week in May and made 4,000 Friends through face to face sessions delivered.
Societe Generale are about to host a Dementia Friends dinner which they are inviting their suppliers to and will be encouraging all of the to take Dementia Friends back to their organisations Marks & Spencer’s have created nearly 80,000 Friends with all staff taking part in group sessions to watch the videos

How can Champions help?
Whereas we’re focussing on large organisations operating on a national level, engaging local businesses with Dementia Friends is vital when trying to build more dementia-friendly communities –and that’s where Dementia Friends Champions are indispensable! By having local connections and face-to-face interaction with businesses in their communities, Champions can have a real impact. The new Local Business Engagement Toolkit we have put together is designed to support Champions in doing this.

Download the toolkit from your Champions resources.