Travelling Well with Dementia

This blog was written by Andy Hyde from Upstream, reflecting on their conference ‘Travelling Well With Dementia’, held on the 7th December 2016.

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Planning a journey. We’d all done it in order to arrive that day but maybe not really thought about it too much. We might have put up with a frustrating web site, weighed up cost-versus-convenience or different ways to get to the Festival Theatre. But what if you’re living with dementia and you’ve lost the confidence to even consider such a journey?  This was just one of the topics that we mulled over in discussion groups at Upstream’s Travelling well with Dementia event last week.

In recent months we’ve been bumping into lots of interesting people, hearing about their projects and initiatives and making connections around mobility, transport and travelling with dementia.

So we thought it would be good if Upstream could start joining up some of these conversations, connecting people and start turning talk into action.

Last week’s event at the Edinburgh’s Festival Theatre was our first attempt at doing this. Around 60 people travelled from across the UK to hear about Upstream and more. We’re busy writing up the outputs of the discussions and we’ll share these soon. In the meantime, here’s a brief summary of the day…

As participants arrived we drew our journeys and shared our stories of our trip to the venue – just like we do in our Upstream workshops.  Rich stories emerged about the highs and lows of getting out and about.

Tommy Dunne opened the event with humour, warmth and some hard-hitting truths about travelling with dementia.  After many years working in the transport industry, Tommy now co-chairs the Service Users Reference Forum (SURF) in Liverpool and works with transport operators to help them understand the realities of travelling with dementia, using his own experiences.  Tommy gave us some great context and insight to start the afternoon off, describing his experiences of travelling by train and bus and the need for a greater understanding from operator staff and fellow passengers alike. A key message from Tommy was the need to enable people to travel in order to reduce the very real dangers of loneliness and isolation.

It was stories like this that prompted us to start Upstream. Wendy Mitchell had also written a timely blog post the day before about her experiences of travel – unfortunately Wendy couldn’t join us but we shared some key points from her post with participants.

We shared what we’re learning at Upstream and talked about developing models for shared experiences which allow transport operators to work together with people affected by dementia.  We can only respond to the challenges of travelling if we move from dementia awareness to a deeper understanding of how a service currently works (or not) for people living with dementia and develop a vision for a new reality where transport always acts as an enabler rather than a barrier. Upstream could facilitate the experiences and conversations that can lead to this understanding and then help to make service redesign happen.

Paula Brown from the Arora Dementia Friendly Community based at An Lanntair in Stornoway, touched on the work that we’ve been doing together in the Western Isles, including the workshops at Stornoway airport that might hopefully lead to involving people affected by dementia in reviewing airport services. Oh, and some of those remote bus stops we’d visited on Lewis…

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Similarly, Sarah Geoghegan from Alzheimer Scotland reflected on Upstream workshops in Aberdeen and our connections with Aberdeen airport. We have engaged with a range of staff there and, following an Upstream workshop and several Dementia Friends sessions, the airport terminal management are interested to explore how we can involve people affected by dementia in reviewing airport services.

Lee Glen from Dementia Friendly Dunbar gave some personal reflections on the shared journey we took with Virgin Trains from Dunbar to Waverley Station and noted how several people in the group had learned a good deal about the assistance that is available to them when travelling by train.

James McKillop told us about an experiendriving-with-dementia-front-pagece that we encounter on a regular basis in our workshops and discussions – giving up driving. James drove for a number of years after a diagnosis of dementia but after his application for an extension to his licence was refused he experienced a difficult time coming to terms with not being able to legally drive even though he felt capable.

He told of his experience of eventually driving again, under controlled conditions.

It was a powerful story, emotional and yet hopeful. You can read more about James’ story here.

We were lucky enough to have Samantha Berry from OCS at Gatwick Airport join us to talk about their lanyard scheme, an option for passengers with hidden disabilities to discretely alert airport staff to their need for a little more time or help. As Samantha pointed out, so many people at the airport wear a lanyard that another doesn’t really stand out although it’s distinctive design is known to staff. It seems as if the scheme is popular and there are plans for trying the lanyard in other airports. Samantha also pointed us to Challenging for Change – an OCS report on disabled passengers’ experience of air travel – and the imminent publication of the Civil Aviation Authority’s new guidelines on making air travel more accessible for passengers with hidden disabilities.

Jill Mulholland told us about the development of the Scottish Government’s Accessible Travel Framework ‘Going Further’, working with people with a range of conditions to set out a roadmap for mobility operators to include people with disabilities in the design of new transport services.

We then discussed a range of topics that can be a challenge when travelling with dementia. In addition to planning a journey, we considered going to a hospital appointment, making a connecting (flight/taxi/bus/train…), buying a ticket, going on holiday and others.

To finish up we heard from Chris McCoy, Head of the Accessible Tourism Programme, at VisitScotland followed by Terry Dunn CEO of the ESP Group. Both Chris and Terry reminded us that people want to continue to travel to visit friends, family and destinations. They want to continue to take a holiday … this is a market that transport operators and related organisations have an opportunity to develop products and services for. The key to creating sustainable businesses will be to work closely with people living with dementia to truly understand the challenges and develop solutions using an inclusive design approach.

We think this was the first time that people from transport, health, government, design, the third sector and more had gathered to consider the range of issues that are emerging around the need to enable people affected by dementia to continue to travel well. However, as Agnes Houston reminded us via Twitter that morning, it’s good to talk and listen but we need to turn our words into action if we’re to make a real impact.

This is the key aim for Upstream and, we hope, for those that joined us last week.

 

Summer baking at Solas

This week we welcome guest blogger Paula Brown, Dementia Friendly Communities Project Co-Ordinator at an Lanntair.  an Lanntair run dementia friendly projects in the Western Isles that are funded by the Life Changes Trust.  That means we get a free scone!

Summer Baking at Solas 2

We did a spot of summer baking at Solas Day Centre today.  Strawberries and clotted cream over fresh, warm scones.

I was quite surprised at how dementia strips confidence – I heard so many worries about feeling incapable. ‘Oh no, I can’t.’ ‘I used to but not now.’ ‘Oh no, you do it.’ ‘My hands can’t do it.’

But gently making a start, asking about how to do it – ‘do we add salt?’ ‘Should we mix the butter and sugar together first or rub the butter into the flour?’ – I found myself taking a step back as everyone joined in with quips ‘There’s a cow out back for the milk!’ and I played along with ‘I couldn’t catch the cow so I had to buy a pint of milk’.

Three ladies joined in with me weighing, measuring, discussing recipes, rolling, cutting, brushing with egg and the scones baked up perfectly so everyone could enjoy eating them. The conversation went into baking and fruit growing and it was a natural collaborative effort to clean up and wash up.

The recipe was (we made 17)

Summer Baking at Solas

  • 1lb (450g) SR flour
  • 4oz (125g) butter, a pinch of salt
  • 2pz (50g) caster sugar
  • we measured 350ml of milk but only used about 320ml of it
  • You need a soft dough that isn’t too sticky
  • 1 beaten egg to glaze

We rubbed the butter into the flour, stirred in the sugar and salt and mixed in the milk. We dusted the table with a little flour and gently flattened the dough to around an inch deep and then cut out rounds with a cookie cutter. A quick brush with beaten egg and they were in the oven for about 15 minutes.

They were not even cold before they were all gone!

Summer Baking at Solas 3

Living well with dementia: diagnosis is key

Magnifying glass

Today kicks off Dementia Awareness Week in Scotland. Richard Baker, Team Leader of the Age Scotland Early Stage Dementia Project, which is funded by the Life Changes Trust, talks about tackling the stigma and how early diagnosis is key to living well with dementia.

This week Age Scotland will be joining Alzheimer Scotland and other organisations working for better support for people with dementia to promote the need for better support and early diagnosis.

This is a key concern for Age Scotland through the work of our Early Stage Dementia Project, supported by the Life Changes Trust. Early diagnosis for someone with dementia can make a huge difference to their ability to live well with the condition. The Scottish Government has made dementia a national priority, and as part of this has introduced a commitment to provide one year’s support for everybody who has been diagnosed with dementia for a year after their diagnosis. This support is provided by link workers who help people with dementia understand the illness, manage symptoms, maintain their connections with their local community and help them make plans for their future.

However, while there is a huge amount of work going on to raise dementia awareness and tackle stigma around the illness, there is still a huge amount to do. Depending on the measure used, either a third or a half of people who have dementia in Scotland have not yet received a diagnosis. A UK survey by the Alzheimer Society found that more than half of people seeking a diagnosis for dementia have delayed going to their GP by at least a year and nearly two-thirds of people fear a diagnosis would mean that their life is over.

But people can and do live well with dementia, and support in the early stages is crucial to ensuring this can happen. That is why it is so important to tackle myths and stigma around dementia and make more people aware of the benefits of early diagnosis. At Age Scotland we meet people with dementia who are still contributing to their communities and are the leading voices campaigning for improved dementia services. Their example shows that if people take early action if they are worried about their memory or struggling with other activities, they can still have a rewarding life even if they do receive a dementia diagnosis. Dementia Awareness Week is a great opportunity to highlight this message, and it is vital the work to make all our communities dementia friendly and dementia aware continues all year round.

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Age Scotland’s Early Stage Dementia Team

To find out more about Age Scotland’s work around Early Stage Dementia visit their website or contact Richard Baker at Richard.Baker@agescotland.org.uk

Age Scotland

 

A day in the life of a peer mentor co-ordinator

A few weeks ago, we posted a blog which described a day in the life of a volunteer peer mentor with VOCAL (Voice of Carers Across Lothian).  This blog describes a day in the life of by Hazel Waddell, who co-ordinates the peer mentors for VOCAL. VOCAL provide peer support to carers of people with dementia. This service is one of the Trust’s 12 funded dementia peer support and befriending projects.

Image hands 2

My role at VOCAL is quite complex as I wear a few hats as Carer Support Worker.

One of the newest bits of work I am involved with is VOCAL’s peer mentoring project.  We had a very small pilot of this kind of work about 18 months ago and have relatively recently been awarded Life Changes Trust funding to further develop this work to support a much larger number of carers of people with dementia.

The pilot was led by my line manager and we are working together to develop the work further. Today we met to plan the recruitment of a few more carers to become mentors.  We have already trained a group and as they are settling well into their roles well we are looking to expand the team to make it as diverse as possible.  While there is lots of common ground in people’s stories, we are keen to ensure we have a good mix of male and female, ages and caring relationships and experiences to ensure the best possible service for clients.  At today’s meeting we discussed approaching a few carers who have used VOCAL’s services previously to ask if they would be interested in sharing their stories in this way.

Next on my peer mentoring to-do list is to log in to our case management system to see if my Carers Support Worker colleagues have made a referral for a mentor.  There are two referrals waiting for me which is not too much of a surprise as everyone in the team is able to see the benefits to carers of being mentored by someone who has lived experience of caring for a family member with dementia.

MENTOR

The Carers Support Workers who have made the referrals have read the mentor profiles and suggested the mentor they think would be the best fit for their client’s needs and have listed the times that suit their client the best.  This is great and it means I can make contact with the mentors to see if they are free to meet (as always checking that the carer and mentor don’t live too close together or know each other in other parts of their life) and book a room here at the Carers Centre (the mentors and carers always meet at the Carers Centre for their first meeting and then after that meet in cafes).  I send the mentors emails and wait for replies.  This should not take too long as they are very good at responding (once again I think how helpful smart phones are to our work!).

Next I switch hats and contact some of the clients I am working with as a Carers Support Worker. I really enjoy the carer support work and I think it really helps me with my peer mentor coordinator role as the work, while different to the mentoring role, has some similar lessons, pleasures and challenges, all of which I can use to support the peer mentors.

By the end of the day I have heard back from both mentors and have scheduled their meetings for next week.  I have also checked the case management system and am pleased to see that all the mentoring meetings for last week took place and I can see from the case notes the mentors have made that there were no issues that they are seeking my support with.

VOCAL’s Training Officer will be pleased that one of the mentoring clients is also interested in attending one of our stress management courses and that the mentor has booked them a place.

I draft a few notes for next weeks mentors team meeting and head home, happy in the knowledge that the work we do helps provide vital support to carers from someone who has walked in their shoes.

 

North by North West – travelling with dementia on the Isle of Lewis

This post was written by Andy Hyde from Upstream, an organisation which aims to bring people affected by dementia together with those providing mobility services, to share their experiences, insights and ideas to develop and deliver new training experiences for mobility service providers in Scotland. 

 

Stone bus shelter

It’s a bus shelter. No, seriously, it is.

It’s called a Four Winds shelter and when you see it standing in a wind-swept spot, in the middle of the Isle of Lewis, you begin to see why. No matter what direction the wind blows from (and it can really blow) you’ll find a sheltered spot somewhere in there.

Paula Brown, who was taking me on this tour of the Island’s more remote transport links, leads the Life Changes Trust Dementia Friendly Communities project at Stornoway’s arts hub An Lanntair.  Among many other things, they are using creative approaches and ‘…co-designing techniques for engaging with people living with dementia, their carers and the wider community’.  One of the related projects involves primary school children mapping and exploring their routes to school. Some visiting artists had recently travelled the island’s bus routes and they are currently developing art installations for these very bus shelters…

We had already visited Staran, a community interest company that provides all kinds of services locally including gardening and transport. They have an impressive fleet of minibuses and adapted vehicles. One of the volunteer drivers Ken was just off to the local care home, so he offered me a lift and we chatted about how Staran transport was increasingly being used to take older and disabled people to medical appointments as well as errands around town and social outings too.

At Blar Buidhe care home, just on the outskirts of town, Ken met his passengers and Paula introduced me to Peter the care home manager. Peter has a wealth of experience in keeping the residents active and connected with Island life. We talked about mobility in older age and the challenges of simply getting in and out of vehicles. We heard that the home’s minibus is a lifeline and in constant use – and yet, some aspects of adapted vehicles could be better. Those yellow strips showing the edges of steps might be a perceptual problem for some people with dementia. Perhaps a solid block of yellow might be better? Could minibus adaptation include design, creating a better environment to travel in? We weren’t sure…

I had a go on the wheelchair lift into the back of a bus … those yellow stripes again.

minibus adaptation

The Alzheimer Scotland resource centre in town was the next stop – this is where a group gathers regularly to share information, have a cup of tea and generally tap into local support. We had some lovely conversations and noticed a taxi or two pulling up outside. We briefly chatted with one of the drivers  – yes, they regularly drop off here but no, not aware of guidance on the needs of people travelling with dementia. We need to point them to the SDWG film...  (Travelling with Dementia).

Alzheimer office

And now we were heading north and west of Stornoway, stopping at bus stops and taking pictures…

Bus Bus stop1 bus stop 2 busstop 3

Some of them are pretty remote and we were wondering – why no timetables? Not even a bus number in some cases. Somebody else had been wondering too…

where is the timetable

Back at Lanntair we chatted these things through with David Smart, the local council’s Transport Manager. Clearly it’s a challenge, keeping information updated across a large, remote region. We learned that local minibuses provide short, circular services from remote locations, connecting people with more major island bus routes. Some of these are demand-responsive – you call and book them, so there is no timetable.

David told us about the HI Trans Thistle Assistance card and the Ferry User-Group meetings. We talked about concessionary travel and wondered if a diagnosis of dementia leads to a travel concessionary card? The answer, it seems, is ‘it’s complicated’.  Alzheimer Scotland has useful advice on driving and dementia which has guidance on free bus travel ‘If you are 60 or over you will definitely qualify. If you are under 60, you might qualify – some local authorities include people with dementia and some don’t’.

There are clearly many aspects of Island travelling with dementia to explore. Many people and organisations play a role and we need to find ways of including them in our conversations. There’s also a vast amount of local knowledge for us to tap into and maybe a different, more personal side to travelling that we might not find in other areas – drivers and passengers often know each other.

So, head buzzing with thoughts and ideas we headed back to the airport and one last bus-stop.

bus stop 4

Thanks to Paula for a day of thought-provoking conversations and sights – it has got us thinking about the similarities and differences we might find as we explore travelling with dementia in different areas.

With thanks to Andy Hyde.

A day in the life of a peer mentor

This blog was written by Nicky Gavin, a volunteer peer mentor with VOCAL (Voice of Carers Across Lothian).  VOCAL provide both one-to-one and group peer support to carers of people with dementia. This service is one of the Trust’s 13 funded dementia peer support and befriending projects.

MENTOR

Today, as I am looking after my granddaughter (which I do every Friday to allow my daughter-in-law to work), I find myself thinking about the past week.

I have been volunteering with VOCAL – Voice of Carers Across Lothian – for a year now and this has been my busiest week with them so far.

I had so much support from VOCAL when I was new to caring for my father, that I was really keen to give something back.  Then Jane Greenacre, who is VOCAL’s Assistant Director and peer mentor co-ordinator, approached me to get involved as a volunteer. We discussed a few roles and I did try working in the carers centre for a bit, which I enjoyed, but when the mentoring project was mentioned, I knew it would be better for me.

I learned so much caring for my Dad and consider myself a people person so it felt a good fit.  Going through the training programme, I grew more confident that peer mentoring was something I wanted to do as I would not be giving advice (which I don’t feel qualified to do – what was right for me and Dad might not be right for others), but telling my story, letting others take the things they want to from it, and sharing experiences.

Last week was particularly busy, as I am currently mentoring two different people and we also had a team meeting. On Wednesday, I had my final meeting with a person I have been mentoring for a while.  We met in the same quiet cafe we have used for our previous meetings and, at her request, our meeting focussed on my role as my Dad’s power of attorney, so I shared quite a lot about the practicalities of this but also how I felt doing it.

This is something I always try to do, as often my mentees have a good understanding of processes but find it difficult to use them due to the intense emotions involved.  Saying our goodbyes was quite difficult as I will not see her again, but I left feeling upbeat as she kindly thanked me for my time and told me that it had been really useful to talk to someone who has been though the same thing as she had – none of her friends had been carers before.

On Thursday I had a first meeting with a new mentee so we met in the Carers Centre (first meetings are always in the VOCAL offices). I got there a bit early to make sure I had the kettle boiled to ensure a warm welcome.  My new client was particularly interested in behavioural changes and how I coped with them.

When I talk about this, I always think back to my training and am mindful of identifying the learning from my story, the positives, and the things I would do differently.  It might not be too helpful to share all the struggles I had without providing some light at the end of the tunnel!

The meeting went well and I was pleased that said she would like to meet me again.  She had been unsure that we would have enough in common as she was caring for her husband, and I was a carer for my Dad, but she found it useful and we scheduled a meeting for two weeks time and she seemed to head off a little lighter than she came in.  A number of new clients have been concerned that my Dad’s dementia was different from their own experiences with a loved one.  That’s true, but what is common are some of the challenges that we face as families.

The team meeting was good as always. I like going to the Centre and catching up with the staff but the peer mentor team meetings are the only time I see the other mentors.

I like these meetings, as we really got on well as a group when we did our training, but also as it gives me a chance to learn from their work too. The meetings are quite structured by Hazel (the carers support worker who manages us) but she always allows us time to catch up as well and it gives us all time to reflect on how we do our work.

My mentoring journey has so far been really rewarding, and I am glad that it’s a journey I chose to embark on.

With thanks to Nicky Gavin, volunteer peer mentor with VOCAL (Voice of Carers Across Lothian)

Dementia Friendly Theatres

Creating enabling environments in historic buildings – the challenges and the benefits.

Inside theatre 2

Many of us love going to the theatre and the arts, but what happens when people who may have enjoyed theatre all their lives find themselves living with dementia? Our staff at the King’s and Festival Theatres in Edinburgh started to notice this happening. Friends of the theatre who had been avid supporters over many years suddenly stopped visiting. After contacting them it was discovered that they had had a diagnosis of dementia and no longer felt confident coming to see shows. So the theatres starting asking the question ‘Is there something that we can do so that people can still come to the theatre?’ As a result last year the Festival City Theatres Trust applied for Life Changes Trust funding and were awarded £320,000 over three years to explore how our venues could become dementia friendly communities.

‘What makes a theatre dementia friendly?’

Many venues around the UK are now offering dementia friendly events and shows as a part of their programme, adapting their procedures for these shows; putting up extra signage; having more frontline staff and/or volunteers working in key areas front of house and in the auditorium. Some venues now offer adapted dementia friendly performances of major touring productions as a part of their programming. We started to ask ourselves is this something we can do all the time? Could we adapt our venues and procedures and enable our buildings to be more accessible and user friendly 24/7?

Key to any of this work has been and will continue to be the inclusion of the voices of people living with dementia, their carers and our wider audience as well. We also took the decision to have our buildings audited by the DSDC to give us a clear indication of the task ahead. So over the course of two days last September Chief Architect Lesley Palmer from DSDC visited the Studio Theatre and the Festival Theatre. One of the main challenges here is the age of the buildings and their differing levels of accessibility. The Festival theatre was rebuilt in 1994 with its iconic open glass frontage while retaining the original Milburn Brothers 1928 auditorium. The Studio theatre opened in 2013 and is the most accessible of our buildings. Our sister venue The King’s Theatre is a grade A listed building and opened in 1906 and is the least accessible building with its own set of challenges. So for this article we’ll focus on the Festival Theatre.

Armed with our DSDC building audit we invited our first groups of people living with dementia for a walk around the Festival Theatre foyer spaces and corridors.  It became clear very quickly that it was the environment that was the disabling element in the equation. Not necessarily the person’s dementia. As we walked round and I was explaining some of what we were proposing to do, like improving signage one lady said, ‘so you’re just making it better for everyone then?’

The process of adapting our buildings for people living with dementia will ultimately make them friendlier and more supported environments for many more people. The comprehensive audit from DSDC identified seven key areas for adapting the Festival Theatre and three areas for the newer Studio Theatre.

The café at the Festival Theatre was already due for a refurbishment before the project began and was number seven on the audit hit list. Not a huge priority but it gave us a great opportunity to implement some of the findings from the audit before taking on the bigger chunks.

Theatre cafe 1

Here is the café as it was. There are lots of hard surfaces on the back and front of the bar which coupled with the slate flooring made the space very noisy even with just a few folk in and even more so with a sell-out show and 1915 people milling around the foyers. The lights were old fashioned directional spot lights that at night threw confusing shadows around the space and onto the tables and chairs. The tables were also quite reflective and the seating, with its grey seats and black backs which were contrasting in tone there wasn’t a  sufficient contrast between the chair seats and the black flooring for them to be as visible as they could be for people with dementia and also people with visual impairments.

The Director of Operations at the theatres, Brian Loudon, was able to liaise with appetite direct, the company who run the café, their designers and come up with a design that fulfilled the cafes desire to have a stylish environment for diners to enjoy their food and drink in and at the same time fulfilled our desire that the space should be as supportive as possible for a broad range of customers, but particularly those elements highlighted in the audit to support a more dementia friendly design.

Theatre cafe 2

The new space has improved lighting, wooden surfaces on the bars to help deaden the acoustics, along with drapes and a new sofa style seating area to extend the café capacity and provide a more social seating area that has proved very popular with wheelchair users and some of our larger consultation groups with the dementia friendly project. It is a much more accessible space and the confusing menu written on the back of the bar wall has gone and has been replaced by a large glass fridge so that you can see the food before making a decision what to eat.

As the project moves forward we will continue to work with our consultation groups on the implementation of the building audits and the group will now be assisting with the formal audit of the King’s Theatre this year. We want our theatres to be as welcoming and as supportive an environment as is possible for all our audiences. Not just our current audiences and for our future audiences as well.

Paul Hudson is the co-ordinator for Forget Me Not at the Festival & Kings Theatres.  

Paul Hudson

This project has been funded by the Life Changes Trust and is supporting the Festival & King’s Theatres in making Dementia Friendly Communities. This includes programming events and performances which are suitable for people living with dementia and their carer’s.

This blog first appeared on the Stirling University Dementia Centre website.

We all have a voice and every experience counts

Gia Alexander

Gina Alexander is the Director of Patient Opinion Scotland.  Here is her blog on receiving £100,000 Life Changes Trust funding for an innovative new partnership project with Talking Mats.  Together they will develop a pioneering tool to help people affected by dementia use their own voice to share their experiences of health and social care, and make real differences to relationships, services and culture.

“We’re thrilled to finally be able to spill the beans on our exciting new project.

“We are going to be working in partnership with Talking Mats, linking our two innovative technologies to bring the experiences and feedback of people affected by dementia into view alongside the feedback of others.

“Like Patient Opinion, Talking Mats Limited is a not for profit social enterprise. Their vision is to improve the lives of people with communication difficulties, and those close to them, by increasing their capacity to communicate effectively about things that matter to them. The award-winning Talking Mats communication framework is based on extensive research and designed by Speech and Language Therapists. It uses unique, specially designed symbols that are attractive to all ages and communication abilities and is used by clinical practitioners, carers and support workers in a wide range of health, social work, residential and education settings.

Talking Mats

“The successful outcome of this work will see improved access to Patient Opinion and Care Opinion platform using the digital Talking Mats communication framework, where people affected by dementia can use their own voice to share their experiences and make real differences to relationships, services and culture, just as many others are already doing across health and care.

“We expect that this work will also result in greater inclusivity and empower others with communication or cognitive difficulties to share their experiences and be heard in an open and transparent way.

“This ground breaking work is being funded and supported by Life Changes Trust, People Affected by Dementia programme. The Big Lottery funded programme is committed to working with people living with dementia and those who care for them, investing resources so that individuals are more able to face the challenges before them, and can exercise more choice and control in their own lives.

“We expect the project to take 18 months to complete, and plan to include people affected by dementia, their families and experienced health and care professionals in the design, development and implementation stages. We’ll be looking for people and places to help us test and refine our process and we’d be delighted to hear from you if are interested in getting involved in that.

“We are so delighted to have this opportunity to be make further progress in making our platforms as accessible as they can be for people who want to share their experiences and feedback.

We’re also looking forward to working with the good folks from Talking Mats: we’ve had lots of fun on the journey so far!”

Women affected by dementia have valuable evidence: we ignore it at our peril

Word Drawing 2 resized

Recently, I have had separate conversations with three women who are utterly passionate about improving the lives of those who care for people living with dementia. They are women who are inspirational, strong and articulate. They are also women who are living on the edge emotionally because of their experiences and who cannot understand why policy makers do not ‘get it’. Thankfully, all three are seeking out ways to channel their emotion into positive action.

One said that despite being involved in several policy-type groups she feels her contribution is reduced to second-rate evidence, a case study to embellish the ‘real’ evidence. What can be more real than living the evidence?

In the past few weeks we have seen the launch of two reports which state that women are disproportionately affected by dementia and that their voices are missing from discussions that determine policy.

‘Dementia – through the eyes of women’* published by the Joseph Rowntree Foundation found, amongst other things, that:

  • there is often a resistance to talking about dementia as a women’s issue;
  • research does not focus as much as it could on the voices, experiences and perceptions of women affected by dementia;
  • there needs to be more attention given to issues specific to women living with dementia;
  • women whose lives are affected by dementia in some way are a marginalised majority.

The Dementia Services Development Centre, Stirling, recently published findings from its ‘Big Ask’* survey which highlighted differences in male and female attitudes to dementia. In its conclusions, the publication states that “there are questions to be asked about the extent to which dementia policy in the UK is dominated by a ‘typically male’ outlook that does not reflect the reality of caring”.

One area in which women affected by dementia are very much impacted is in the working world. The Scottish Commission on Older Women (SCOW)* recently published a report on older women and work which emphasised the disproportionate number of women aged 50 to 64 who provide unpaid care in one context or another. The issue is not just that these women provide care but that they may absorb a disproportionate amount of caring responsibility – caring for older relatives, partners, children and/or grandchildren. Some caring may be manageable, but if caring responsibilities pile up then tipping point is reached and the carer will no longer be able to cope. Similarly, if social or statutory support diminishes the burden becomes too heavy to bear. The result is that something has to ‘give’ and usually that is paid work, which can be hugely detrimental.

Many women over the age of 50 need more flexible working arrangements in order to provide care and earn but this is rarely available – even in those workplaces with shiny awards for investing in the workforce. Requests for flexible working, part-time working or additional leave can be very hard to negotiate when the caring does not involve parenting. All too often women leave the workplace in order to manage caring responsibilities, which can have a devastating effect on their financial situation – both in the present and in the future. Where a woman leaves work to care for a partner with dementia, it is likely that the family unit will have lost two salaries in a relatively short space of time.

Of course, women do not just leave the workplace because they are carers; they may leave because they themselves have dementia. In these circumstances, people diagnosed with dementia report being almost immediately earmarked for ‘the scrap heap’.  A Joseph Rowntree Report* which explores how society should adjust to dementia outlines a number of reasons why workplaces do not accept people living with dementia, ranging from failure to understand the condition through to being directly disrespectful or even abusive.

What is the answer? We can start by really listening to women whose lives are affected day to day, minute to minute, by dementia. They will tell you what needs to change and how it can change. They are not dreamers or seeking Utopia; they just want to ensure that they have some money in their bank account, that they get a good night’s sleep and that their life still has a sense of value, meaning and purpose.

We also need more research into the specific needs of women whose lives are affected by dementia and we must actively include them in policy making. Public policy makers have not made sufficient effort to keep up with the increasingly complex lives of women and the caring demands placed upon them; these women are helping hold our society together and deserve better.

Public sector organisations have a particular role in setting an example in how women affected by dementia should be supported, particularly in light of the Equality Act 2010 (Specific Duties) (Scotland) Regulations 2012. Perhaps the third Dementia Strategy for Scotland should remind public bodies of these duties.

The matters raised in this blog are nothing to do with a feminist perspective – they are a response to statistics that tell us that dementia does disproportionately affect women. Men affected by dementia also have specific dementia-related issues that are lost in the generalities; these too must be explored as we develop a more nuanced narrative about dementia.

We must listen intently to women who are living the evidence today if we are to make changes for generations to come.

Anna Buchanan, Director, People Affected by Dementia Programme

*Find the reports here:

‘Dementia – through the eyes of women’

The Big Ask survey

Older Women and Work – Scottish Commission on Older Women

How can and should UK society adjust to dementia?

Making it personal

PABD Individual Awadrs Report cover_Page_1

Making it personal

You may not know this, but today is World Alzheimer’s Day, the pinnacle of World Alzheimer’s Month. The month of September is devoted globally to raising awareness about the challenges that people living with dementia and their families face and, as importantly, the need for governments and policy-makers to do everything within their power to address these challenges because they will not be disappearing any time in the near future.

Also today, the Life Changes Trust is publishing an important evaluation report that gives deeper insight into some of the day-to-day challenges that affect the lives and well-being of people with dementia and their carers. The report talks about the impact of an Individual Awards Pilot Scheme, funded by the Trust, which aimed to create better lives for a number of people living in Argyll & Bute and Edinburgh. The Scheme allowed people living with dementia or unpaid carers to apply for an Award of up to £500 to do something that mattered to them, which they believed would make a difference to them, and which they would not otherwise have been able to afford.

This was a highly personalised approach which allowed individuals to decide how the money would be spent. The criteria for receiving an Award were deliberately left as wide open as possible to maximise choice and control, and the scheme gave individuals as much support as they needed to make the application and spend the money. This support was provided by tireless partner organisations on the ground who did a marvellous job, going above and beyond on several occasions.

I could give you numerous examples of how the Award money was spent and tell you stories that will make you laugh – and maybe even cry – but it is better that you read it in the report, which reflects the first-hand feedback of the 438 people who received an Award. The report can be found here.

If, once you have read the evaluation report, you have thoughts on the Pilot Scheme that you would like to share, I am happy to hear those thoughts if they are constructive in nature; you can email me on anna.buchanan@lifechangestrust.org.uk

Some people are critical of highly personalised support or allowing individuals to control money to which they are entitled. For example, just a few short weeks ago we were greeted at breakfast with the BBC headline “NHS personal health budgets spent on ‘treats’ for patients” (1 September 2015). The fact that ‘thousands’ of pounds had been spent on art classes, massage and the like had been gained through the one-dimensional method of a Freedom of Information request and then splashed across the headlines. No links were provided to some of the evidence that underpins the approach (see the Nuffield Trust website) nor the fact that the budget is allocated for health AND social care needs. The tirade of comments from readers of the BBC article demonstrated yet again the problem of imbalanced media reporting which polarises people, most of whom are not in full possession of all the facts.

Highly personalised support can come in many forms: employing the paid carers you would really like to have; a Sky+ box so a person can watch programmes from the country of their birth and reminisce; a massage once a fortnight for an exhausted carer; a cinema pass for a couple who just want to forget about dementia for a while and reclaim some of what they used to do together (but can no longer do because they have both had to give up work); or a personalised playlist of music that helps a person with advanced dementia retain some sense of identity. These things are personal – and that is why they are so meaningful and can restore a sense of well-being and wholeness, which is what ‘taking a holistic approach’ is all about really, isn’t it?

I will leave you with a quote shared with me by one of the Trust’s advisors who lives with dementia, James McKillop:

“A visit may be forgotten quickly, but the emotions and well-being created by the visit may stay behind, long after you have left.”

Anna Buchanan, Director, People Affected by Dementia Programme