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.

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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.

 

Champions Boards: Giving young people a voice

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Last week I was lucky enough to be part of a special day in Edinburgh, marking the journey so far of eight different Champions Boards from different parts of Scotland.

Care experienced young people, and staff who are passionate about giving these young people a platform, got together to celebrate the award of funding from the Life Changes Trust. The young people led the day, sharing their experiences of Champions Boards so far and their ideas for the future. The energy, drive and determination in the room was palpable. So was the air of competition, as various folk took part in our giant jenga challenges……

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…and vied with each other over the most outrageous get-up for the photo booth! 

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So what’s all the fuss about? Why do Champions Boards matter so much? On the face of it, Champions Boards themselves might not seem like an especially radical idea. They bring together senior representatives of services and agencies in local areas who have responsibilities for young people who are in care and care leavers, and get them round the table with care experienced young people. The aim is to improve services and supports on the ground, so they have a much better opportunity to achieve their potential. So far, so what?

The thing is, we know that when people who make decisions about budgets and services hear directly from the people on the receiving end of those decisions, magic tends to happen. Issues that might seem abstract suddenly become very real and powerful, when a young person explains the debilitating impact of twenty placement moves or the horror of being separated from a much-loved brother or sister. The sense of apathy and/or fatalism which can pervade the discussion falls away and is replaced with a desire to act.

The stark reality is that young people growing up in care are still very much caught in a system, and systems are not famous for their ability to listen and respond to the needs of individuals. That’s why at the Life Changes Trust we’re excited about the possibilities presented by Champions Boards. We think that done well, they can create a much-needed space for care experienced young people to have a voice, and, just as important, to be properly heard by the people who are responsible for their care and well-being.

Please note the phrase “properly heard”. Listening is a fine art, and we’ve all experienced people in positions of power who haven’t listened to us. The GP who does not take our health concerns seriously; the head teacher who will not agree to a few small adjustments to the school day for a child who is struggling; the boss who moves us to an evening shift even although there’s no transport available in our town to get us to work at that time.

Listening to people, acknowledging their concerns and creating the space for them to be involved in developing a solution takes time and effort. It also takes a particular value system – you have to believe in people.

Anyone who took part in the event last week, and watched the young people doing their thing, could be in no doubt about the potential of Scotland’s care experienced population. However, those who run services and make decisions about budgets are often under huge pressure – they’re supposed to have all of the answers, and to act quickly. We should not underestimate the challenge of changing this culture – working collaboratively, taking the time to genuinely get to know young people and to create opportunities for them to lead is a radically different approach.

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By investing in Champions Boards, we are recognising that not only do care experienced young people need to have many more opportunities to develop their confidence and speak out about issues that matter to them, people in decision-making positions also need to sharpen up their listening skills and remember their accountability to the young people sitting in front of them.

It’s no longer good enough to say that the problem of challenging poor outcomes is too great. There is a huge wealth of talent, experience and passion for change amongst care experienced young people in Scotland. There are also so many people involved in running and delivering services who want things to change. Champions Boards are spaces to harness the collective abilities of young people, staff and senior decision-makers. They have grown out of the belief that things can and must improve, and care experienced young people must be at the heart of creating a new reality.

Carole 2015

Carole Patrick, Programme Manager, Care Experienced Young People Programme

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. 

 

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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…

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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…

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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.

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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.

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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.

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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.

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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.

Is love enough?

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At Scottish Throughcare and Aftercare’s recent Practitioner’s Forum event, Kate Skinner asked delegates a deceptively simple question – is love enough to improve the lives of care experienced young people?

Kate’s speech, which focussed on social pedagogy as one approach to relationship-based practice, really got me thinking. I was prompted to go back to a book I haven’t looked at for a while – Adam Kahane’s Power and Love. The title of the book is inspired by a Martin Luther King quote:

“Power without love is reckless and abusive; and love without power is sentimental and anaemic”

In the book, Kahane explores the importance of combining power and love when working for social change.

His concept of power is based on the need we all have as humans to strive for purpose and growth. Love refers to our need to connect with others, to unify rather than separate. Kahane argues that when we want to tackle complex social problems, it doesn’t work to choose only the power route – attempting to push changes on others (leading to conflict and division) – or the love route – refusing to push at all (which maintains the status quo). Instead, we’re encouraged to understand both impulses, recognise that we all have them, and work creatively to reconcile their differences.

So what’s the connection to care experienced young people, relationship-based practice and social pedagogy?

Anyone who is working around this field will know that relationships are having a bit of a moment. People who directly support young people have always understood the importance of creating a meaningful connection – taking the time to get to know someone on an individual basis. But the systems and procedures that have developed around the care system over time have made a relationship-based approach pretty difficult. The culture around care is tangled up in issues of risk management, boundaries and professionalism. There’s a sense that the tide is turning though, and that culture is being challenged at all levels.

The rise of social pedagogy is one example of that challenge playing out. It’s a horrible term, as Kate acknowledged in her speech, but once you start to unpick it, it starts to sounds very intuitive.

It’s an approach which focuses on how people work rather than a practical checklist of things to do and things to avoid. For me, and I’m only at the beginning of developing an understanding of this, the first step really seems to be recognising the power dynamic in all relationships. Workers or carers or whoever has the opportunity to build a relationship with a young person need to acknowledge their relative power and be prepared to let some of that go.

As human beings, we all have a need to learn and grow throughout our lives, and social pedagogy encourages learning and growth alongside the young person. This calls for openness, not just through sharing something of yourself but also rolling up your sleeves and taking part in creative activities or shared tasks. This could take you out of your comfort zone!

It’s also an approach which is mindful of the little things, and prioritises authentic interaction. The text on the day of an exam; the flowers on the dining room table in the residential home; giving a distressed teenager a  bar of chocolate even when you know they’ve broken all the rules.

Kate questioned if love in itself is enough to change the lives of care experienced young people, recognising that love can be a fluid and changeable concept. Social pedagogy aims to create the conditions where people can be more honest with each other and recognise that love and caring in themselves won’t be enough to create the conditions for young people and the adults around them to be able to genuinely face challenges as equals. We also need to recognise the power dynamic, and be a bit braver in allowing young people to exert themselves, as well as being more open to experiences which put us on an equal footing.

For many of us, this is the true meaning of love, and we recognise that it is hard work. I would say it’s also the most important work we can do.

Carole 2015

Carole Patrick, Programme Manager, Care Experienced Young People Programme

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!”

Scottish Care Leavers Covenant – A Parenting Promise

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Recently I’ve been thinking a lot about people who inspired and encouraged me when I was young. I think most of us can think of people who made a big impression at an early stage in our lives. Parents and family members play a vital role, but their influence is only part of the picture. Inspiration and encouragement can be found both amongst people you know and strangers who achieve incredible things.

For young people leaving care, the core sources of support of parents and family are often missing, and encouragement can be thin on the ground. Their Corporate Parents – bodies such as local authorities, health boards, colleges and universities, the Police – have responsibilities enshrined in law to promote care leavers’ welfare. But the phrase Corporate Parent is a tricky one. It’s not exactly warm and cuddly, is it? At best, the idea of a Corporate Parent feels very impersonal. Where is the individual, the person who is watching your back and making the extra effort? And where is the inspiration, the encouragement to aim high and aspire to be the best possible version of yourself?

The Scottish Care Leavers Covenant was launched in October last year, and it encourages Corporate Parenting agencies to make a promise to young people leaving care. A promise to go beyond the minimum that the law requires, and to put relationships at the heart of their efforts to improve the lives of care leavers. This goes further than the provision of support, and gets into the territory of encouragement and inspiration – something we all need if we are to aspire and achieve.

Produced by an alliance of public and third sector agencies, with the voices of young people at its heart, the Covenant includes an agenda for change, focussing on themes which care leavers have told us are important to them:

  • Health and Wellbeing
  • Housing and Accommodation
  • Education and Training
  • Employment
  • Youth and Criminal Justice
  • Rights and Participation

But what does this mean in reality – will it make a difference? The Covenant makes many practical asks of Corporate Parents, but at its heart it is really a call to each and every individual working in an agency designated as a Corporate Parent to ask themselves “what can I do today to support and encourage a young person leaving care?”

It’s often the little things that make a difference – the teacher who notices the cartoons produced by a pupil and suggests she joins an art club; the coach who drives a couple of miles out of his way to pick up a young person to take him to training because he has no other way of getting there; the housing officer who offers a cup of tea and a biscuit and takes the time to listen to the worries of the young person whose tenancy is not working out. We need big changes too, like better health care, improved housing options, more support in schools – but if those bigger changes don’t come with changes in everyday practice, care leavers will miss out on the encouragement they need to fulfil their promise.

Now I’m a bit older, I find inspiration comes in different forms. I still admire great writers (Donna Tartt made me miss my stop on the train not so long ago). But increasingly I find that inspiration can also be found in more everyday settings, amongst more ordinary people. Take the addictions worker, who had the generosity of spirit to tell a young man she would love him until he was ready to love himself. Or the volunteer who spent Christmas Day cooking to make sure care leavers had somewhere special to go to enjoy a Christmas meal. And the teacher who encourages his pupil to get her maths book out when she’s getting stressed – because he knows it distracts her, and he sees she has talent.

When we tap into our humanity, and take the time to say encouraging words, or give some of our time, we can all have the capacity to inspire others. This is the spirit of the Care Leavers Covenant. The Covenant asks all Corporate Parents to make a promise to hold their care leavers in their thoughts, and to take the time to listen to them.

Please sign up today.

Carole Patrick, Programme Manager, Care Experienced Young People Programme

A festive thank you!

As the festive period is well and truly upon us and another year draws to a close, I wanted to take this opportunity to reflect briefly on our journey over the last twelve months and to thank everyone who has worked with and for the Trust – helping to make it such a successful and rewarding 2015.

Our Annual Review for 2014-15 – which you can find here – highlights what we have already funded and our future funding plans. I hope you share my view that it’s inspiring to read about the benefits already achieved for care experienced young people and people affected by dementia through our funding to date – for example, our two individual award pilot schemes. I also hope you feel as excited as we do about the potential benefits our active and planned future funding awards will bring to our beneficiaries in the years ahead.

We held our first National stakeholder event, in November 2015. The event was called “Connect, Build, Transform” because the Trust believes it is only when we really listen to what people affected by dementia and care experienced young people want and need and empower them to connect and work with others to achieve positive change – that their lives be truly transformed for the better.

The Trust has now been active for two and a half years and, as this year closes, I think we have made good progress on our journey to becoming an effective funder – enabling those we fund to improve the quality of life and well-being of people affected by dementia and care experienced young people across Scotland.

Warmest wishes for a happy and peaceful festive period, and my heartfelt thanks for helping to make 2015 a better year for so many.

Maddy Halliday
CEO
Life Changes Trust

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

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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?