The Importance of Home

What does it mean for a house to be a ‘home’? Is it curling up in your favourite chair at the end of a long day? Sharing a laugh with friends and family? Perhaps it is that feeling you get cooking your favourite meal. While having a place to live is a fundamental need, it can be easy to overlook the importance of feeling ‘at home’. To truly feel ‘at home’, it is not enough to be in a place that meets your needs; there must also be a sense of belonging, a feeling of connection with your community, and the ability to make meaningful choices over your actions and surroundings.

At the Life Changes Trust, we value the expertise of those with lived experience. So when young people with care experience told us it wasn’t enough to live in ‘appropriate accommodation’, we paid attention. In 2018 we introduced the Home and Belonging initiative, which aims to support young people to find a strong sense of home and belonging in their own communities. We knew that young people leaving care had needs that were often not being met, and we knew that having a place to sleep at night was not the same thing as having a home.

We funded this initiative because we believed that young people working alongside practitioners and housing professionals could co-create innovative new solutions to support young people with experience of care to feel safe, secure, and connected in their homes and communities. Funded projects include efforts to create new housing, but also the development of places that can be a ‘home away fae home’ and projects that teach young people how to ‘upcycle’ items and make spaces their own. You can read about each of these projects here.

With COVID-19 and the associated lockdown measures, it has become clear that having a home, not just a place to live, is more important than ever. Whether we’ve been stuck at home during lockdown, working from home, or looking forward to the day when we can once again visit other people’s houses, it’s clear that ‘home’ as a concept has been working overtime. Bedrooms, living rooms, and kitchens are now ‘home offices’.  Whether you are a key worker who has been working intensely since March, someone who is only just getting back to work after being furloughed, or a parent who spent the spring trying to home-school their children, our relationship with the idea of ‘home’ has changed significantly.

This year, we’ve all learned a little bit more about how important it is to have meaningful choices about our surroundings. One young person with care experience recently reflected that the pandemic has given the general public more insight into what being taken into care can feel like:

‘Maybe others (outsiders) can have a bit more of an understanding of what it’s like to be taken into care as a young child and totally against your will…the restrictions somehow feel similar…the zero control over the matter…the lack of routine or the loss of it more like…the loneliness…the lack of stability and the not knowing what’s about to happen…I’m almost having similar feelings as to back then.’ Young Person

More than ever, having control and ownership over your own home and how you engage with your communities is vital for young people with care experience. A one-size-fits-all approach never worked well, but in the COVID-19 context supporting young people to have a say over what their support looks like is absolutely vital. The Trust believes that providing young people with a wider range of housing options and housing support services that they have helped shape should go hand-in-hand with corporate parenting duties around housing and continuing care.

Many projects have found that fostering a sense of belonging both at home and in the wider community during this time has become increasingly important, particularly as socialising and emotional connection now looks very different. Organisations have worked hard to change the support they are giving to young people and are now working in new ways to maintain that connection and feeling of belonging in this new, virtual world.

‘The larger question they [young people] would like to explore is: What creates a sense of belonging in a community? They discussed wanting to be understood and how feeling like they were part of the community could alleviate some of their loneliness and isolation.’ – Staff Member, Barnardo’s

With so much time now spent in the home, it is even more important that young people are supported to fill their homes with furniture and decorations that are chosen by them, and which have personal meaning and are suited to their needs. Engagement in community and support activities likewise need to be tailored to the needs of young people, allowing them to engage in ways they want and dip in and out as necessary.

For some young people, virtual engagement is itself a barrier that projects and professionals have worked hard to overcome. For others, however, the shift to virtual engagement has made this easier. Travel barriers are essentially removed, and they can turn on or off video cameras at will.

‘Normally I would have never gone to the groups but it’s really helped and during the lockdown we’ve all been in touch and chat when we’re down and check in on one another so that’s been good while I’m staying [by] myself.’Young Person, Barnardo’s

What we have already seen again and again is that each person’s needs are specific to them, and supports have to be flexible enough to meet those different and often changing needs. This flexibility is evident in the range of Home and Belonging projects funded by the Trust.

We’re currently evaluating the Home and Belonging initiative and look forward to sharing some interim findings later this year. Some things, however, are already coming through loud and clear. Now more than ever we know it was never just about a place to live.

Celeste Berteau, Evidence and Influencing Co-ordinator
Life Changes Trust

 

 

 

Keep Well Fund – supporting young people with care experience during COVID-19

During lockdown it’s been so interesting to notice the growing awareness that it’s ok to acknowledge our vulnerable moments. At Life Changes Trust, we’re quite a small team and we’re lucky that it’s possible for us all to work from home. It has its benefits, especially in terms of cutting down the time spent commuting (none of us miss overcrowded trains and buses), but in our own different ways we are all missing the human connection that comes from gathering together in an office space.

Those brief conversations waiting for the kettle to boil – holiday news, exercise goals, wedding plans, family achievements, film and book recommendations – these are the things that help us to feel connected to others and to be acknowledged as a human being. Keeping that connection going virtually is harder, but the fact that we all know it’s ok to say that it’s been a tough week is important. Sometimes we all need to feel acknowledged, to know that others both see us and truly hear what we are saying.

For our beneficiaries, tough weeks can be the norm. Young people with care experience are all individuals with unique talents, skills and potential. As a group, they also face significant challenges. At the Trust, we believe that in tackling these challenges it’s important to invest directly in young people and get alongside them.

As a funder, making individual grants available to our beneficiaries has been an important aspect of this. We think young people themselves are best placed to decide what can make a difference to them and we believe that they should have choices.

So, when COVID-19 struck, we worked with our Advisory Group (who all have their own experience of care) to design an individual grants offer which could mitigate the effects of lockdown. The idea was to offer something distinct from emergency funding (although we made contributions to these funds too), with a focus on supporting physical and mental wellbeing during lockdown. We called it the Keep Well Fund.

It’s fair to say that we were inundated. We received well over 800 applications and many of them were tough to read. It was sobering to see the confirmation of much of what we already know – that young people with experience of the care system are affected by inequalities in relation to health, income, digital access, housing and other areas of life. It is vital that we acknowledge this reality and let young people know that we see and hear them. Often they do not have access to the same networks of extended family and community that many of us turn to. The risk is that young people feel invisible.

We have paid close attention to what young people have told us through the Keep Well Fund. It’s been a privilege to have a glimpse into their lives. It’s also been humbling to read about the creativity and determination of young people not to allow the pandemic to pull them under. Almost without exception, young people have been very honest about the impact of lockdown on their mental health. By providing funding for things like fitness equipment, bicycles, tablets, arts materials, garden equipment and musical instruments we know that in a small way we are helping combat the mental health challenges. We also understand that just knowing someone out there is listening and cares enough to make an offer of concrete support can be equally important. We are so appreciative of the funders who stepped forward to demonstrate that they care – the William Grant Foundation, the Cattanach Trust, the Esmee Fairbairn Foundation, Cycling Scotland and Inspiring Scotland all provided funds to help us reach more young people.

Through the Keep Well Fund, young people with care experience have communicated their sense of isolation even when living with carers, partners or children. Through our work at the Trust, we know that relationships are fundamental to creating long-term change for young people with care experience. By funding programmes such as mentoring and offering opportunities for young people to get active and creative in their communities we have steadily been working to expand the networks around young people. Our Champions Boards, now active in 21 Local Authority areas across Scotland, reach out to young people and create a variety of opportunities to get engaged. Through our Home and Belonging initiative, we’re learning more about what’s needed not only to make sure young people have a roof over their heads, but also how to help them feel that they belong in their communities.

The global Covid-19 pandemic of 2020 has starkly demonstrated the volatility and uncertainty of our world. It has highlighted the inequalities that continue to stifle potential and limit quality of life – and threatens to deepen these inequalities. It has also showcased the determination of the human spirit and our capacity to care for one another. Young people with care experience have remarkable resilience, creativity and capacity to connect. When this is combined with the commitment and passion of the people around them – carers, key workers, mentors, youth workers, social care staff, health professionals, volunteers – collectively we have the potential to create a powerful human network. Through this network and others like it across society, there is a real opportunity to think afresh about the type of society we want to live in. A society which keeps all of its people well.

 

Carole Patrick
Director of Evidence and Influencing (Care Experienced Young People)

Evaluation of the Life Changes Trust peer support programme

Peer Support

The Life Changes Trust funds five peer support initiatives across Scotland. This funding came about because peer support is something which people living with dementia and unpaid carers say they most value because of the positive impact it has on the person with dementia and unpaid carers. Peer support can help keep people more socially connected, giving them confidence and motivation to participate in their communities. It can also help them to feel valued by being listened to and being able to help others with similar experiences. Peer support builds on the skills and knowledge that already exist in the community. Each project was given five years funding in 2015.

Evaluation Overview

This evaluation, conducted by The University of Stirling, has the following aims and objectives:

  • to determine how peer support benefits both individuals and society
  • to explore what constitutes good practice when delivering peer support
  • to share evidence to promote greater awareness about the benefits of peer support and what works for effective peer support

Researchers at The University of Stirling have reviewed self-evaluation data provided by the five projects, funded by the Life Changes Trust, who deliver peer support.  They are also conducting new research at four of these projects to engage staff, volunteers, people receiving support and partner organisations.

Initial Findings

Peer support enables people with dementia and unpaid carers to live better lives and remain socially connected.  A video has been created to highlight the different ways in which unpaid carers and people with dementia benefit from this social connection – watch it here.  Social connection is layered.  Attending peer support groups helps to build new relationships.

Contributing in these groups builds confidence and helps people to be involved.  Sometimes this involvement extends outside of the peer support group.  Fuller participation and sense of involvement comes from sharing responsibilities and helping to sustain the group.

 Next Stages

In the coming months, we will be investigating these and other benefits through conversations and discussions with people living with dementia and unpaid carers who access the peer support projects.  We are also meeting with staff and volunteers at the projects and staff from partner organisations who have worked with the projects.

This research will enable us to find out how people experience the support and understand what works well, or less well, for them. We want to learn lessons about ‘what works’ and share this information so that peer support can be as successful as possible for people with dementia and unpaid carers in the future.

Participatory Methods

The method adopted by the evaluation has been to recruit several ‘Community Researchers’ who would carry out the fieldwork in conjunction with academic staff at The University of Stirling.  These volunteers were recruited from within the dementia community, being carers or individuals who had some connection to dementia.

Recruitment has not been an easy task, especially retention of volunteers who are actively involved in caring for a person living with dementia.  More will be said about this later.  A range of skills was sought and achieved.  Several of the volunteers were trained researchers who had been involved in previous projects about dementia at The University of Stirling and have skills necessary to carry out the fieldwork.  Others were already volunteering in a dementia-related project and were committed to helping where they could in researching the condition and how life could be improved for those living with dementia.

Each brought with them life skills from previous employment and volunteering such as communication skills, project skills and creative skills.

An initial introductory meeting was arranged and then a follow up meeting, where volunteers gained some knowledge of the project objectives and methods.  Initially there was a high level of commitment but, due to caring commitments and the pandemic which hit in March 2020, there was a level of drop off, particularly among volunteers actively involved in caring.

Fieldwork and the Pandemic

Four projects supported by the Life Changes Trust have been identified for fieldwork.  There was much discussion among the researchers about which creative methods were best to evaluate the effectiveness of peer support in each of the projects and many face-to-face, group and socially inclusive methods were identified.

All of these face-to-face methods were excluded due to self-distancing rules introduced in March 2020.  The project has carried on, however, with researchers meeting online and continuing to identify methods now based on online techniques that can be conducted safely at a distance. (See ‘Lessons Learned’)

A personal observation here was how the project reacted to the pandemic.  What was essentially a project about connection with dementia projects and creative methods for evaluating them became, due to the pandemic, an exercise in remote working both among the volunteers and with the projects.  Essentially the evaluation project did not change but has become different in its methods of engaging people in research.  In addition, we learned a lot about setting up projects like this and making them more robust against unforeseen risk.

Lessons Learned (so far):

(1) It is important to be mindful of existing commitments that community researchers may have at the recruitment stage. This is particularly true where potential researchers are interested in a subject like dementia as a result of personal experience of living with or caring for someone with dementia.  Where a potential researcher does have caring responsibilities or a long term health condition, they must be actively supported to engage with the research in a way that works for them.  Ultimately, though, they may feel they have to step away from the project.

(2) There are lots of creative, non-contact methods available for engaging people at a distance which are available and published on sites such as org. We were particularly impressed with a video by artist Lydia Beilby called “Create Your Own Living Archive” https://www.youtube.com/watch?v=U2Zt-tYC-V8.  The techniques described in the video can be adapted to evaluate peer support within projects using such creative methods.

(3) A risk register can never be too detailed or “out of the box”. We missed the possibility of a pandemic but, at the time the project started, if we had considered it we would have rated the probability very low and impact extremely high and, I am sure, we would have decided to live with the risk.  As it happened, a flexible approach to project methodology has allowed us to react to the pandemic and create new methods to carry on with the project.

(4) One of the major lessons learned is “learn the lessons”. Many of the new methods developed out of necessity will be useful in future research and will be written up, developed and used in future studies regardless of the situation.  We also hope that the methods we use for engaging research participants online will be useful longer-term for the peer support projects who may find the creative resources adopted in the evaluation useful for supporting and delivering peer support at a distance.

Final Thoughts

Carrying out an evaluation during the pandemic will allow us to gather unique insights about the role of peer support and factors influencing its delivery during a period of acute crisis, what this may mean for peer support, and its effect regarding loneliness and social isolation.

Author Information

Dr Paul Lyden is a retired IT consultant and Project Manager.  He became involved with dementia when his oldest friend was diagnosed with the condition.  Paul volunteered with Alzheimer Scotland at an allotment in Dumbarton as he is a keen gardener.  He still works at the allotment (pandemic permitting).  Paul has a background in research and is keen to get involved in research which might help.  He is volunteering as a Community Researcher.

Contact Information

Dr Jane Robertson, Lecturer in Dementia Studies in the Faculty of Social Sciences at The University of Stirling, is leading this project. For further information about the evaluation, please contact Jane at j.m.robertson@stir.ac.uk

 

Dementia, human rights and COVID-19

For the past six years, the Life Changes Trust has worked with people with dementia, unpaid carers, organisations and individuals to promote a whole life approach to dementia. A ‘whole life approach’ means looking more closely at all the different aspects of a person’s life that are important to them and doing everything that can be done to ensure these do not disappear with a diagnosis of dementia.

We have also advocated for a stronger human rights-based approach to dementia, that puts flesh on the legal and policy framework in Scotland in order to bring it to life. We are pushing the boundaries of the human rights-based approach so that people with dementia and unpaid carers can clearly see their rights being fulfilled in practice.

On 22 June 2020 we will publish a suite of documents entitled ‘Dementia: A Whole Life Approach’. This is a resource for anyone looking to learn more about dementia, human rights and community. It features the work of many organisations across Scotland and will, we trust, inspire more good work.

A key feature of our approach has been reframing discussion and language about dementia. We have emphasised the fact that people with dementia are citizens and rights holders, not just patients or service users. When the Life Changes Trust was first established, a medical model of dementia was still predominant and people were exploring more actively what a social model of dementia should look like.

In 2015, the Trust funded a series of workshops with the Joseph Rowntree Foundation which became known as the VERDe Network. This network was fundamental to the development of the DEEP (Dementia Engagement and Empowerment Network) in the UK. As people with dementia met and spoke together they agreed that they wanted to live hopefully, be treated well and with respect regardless of age or ability, be able to give and receive support, and participate as fully as possible in their community.

Since then we have seen many of these hopes become reality for thousands of people living with dementia across Scotland. We commissioned independent evaluation of the impact of work funded by the Trust and will provide multiple opportunities over the next few years for people to share in that learning.

Then, in spring of this year, there was COVID-19.

The dementia ‘world’ has been significantly impacted by the pandemic, and will continue to be so for a long time to come. On the one hand it has been astounding to see how quickly communities and many organisations have adapted to meet needs, nurture relationships and provide support in new ways.

On the other, some of the media narrative around people with dementia and COVID-19 threatens to take us back to a medical model that focuses on the condition more than the person, labelling people living with dementia (and older people) as ‘the vulnerable’ regardless of the state of their general health.

We understand why the government has restricted some of our human rights, e.g. right to liberty and right to respect for private and family life. It is clear that these are for reasons of public safety and to secure the right to life.

There is, however, some real apprehension about what the longer term will hold for people with dementia and unpaid carers as we work through the phases of easing lockdown restrictions. For some there is a fear that they will be labelled ‘the vulnerable’ and treated differently from the rest of the adult population.

What can we do to address some of these fears?

Be careful with the language we use

We have become familiar with phrases such as ‘protecting the vulnerable’. When we talk about ‘the vulnerable’ or ‘the elderly’ or ‘the disabled’ we are treading on dangerous ground because we risk stereotyping and making assumptions. This can be disempowering and may unwittingly create distinctions that are unhelpful: the vulnerable and the strong; the protected and the protector; those who sacrifice and those who are saved.

The reality is that, while there are some people who may be more vulnerable to the effects of COVID-19, any one of us could find ourselves in a position of vulnerability due to the virus. Therefore, it is better to use language that talks about the collective steps we are taking to protect our community from the impact of COVID-19. This language is more inclusive and frames the conversation in a different way. It makes COVID-19 a community matter rather than a problem for some more than others.

Restrict human rights only where absolutely necessary

There is a reason why the European Convention on Human Rights protects respect for private and family life. Personal identity, friendships and family can help anchor us. If our ability to access these aspects of life in a meaningful way is disrupted for too long – even for the best of reasons – our perception of self and our abilities can be severely affected.

It is encouraging to see that the Scottish Government has been using the phrase ‘physical distancing’ as opposed to ‘social distancing’. If anything, COVID-19 has increased the need for social connection and this has been borne out by the number of people who have contacted helplines run by organisations such as Age Scotland and Alzheimer Scotland.

One common theme in all of the work funded by the Life Changes Trust is the importance of relationships for people with dementia and unpaid carers. Relationships help restore lost identity, recognise shared humanity and create the conditions needed for a person to thrive. People with dementia and unpaid carers have a right to these relationships and as we move into the next phases of easing restrictions we must do four things. We must:

  1. listen to what people with dementia and carers are telling us about how they are feeling;
  2. listen to their suggestions and proposed solutions;
  3. after listening, fully consider and implement ways of working around necessary restrictions or requirements;
  4. challenge unnecessary restrictions or requirements.

Focus on enablement more than risk

Enablement and risk management are two sides of the same coin.  However, people with dementia and unpaid carers need us to focus more on enablement or, in some cases, reablement. We are seeing first hand the effects of lockdown on people with dementia who are usually out and about and involved in dementia activism. They are noticing the difference themselves and are concerned that their dementia is becoming worse. They are afraid that their confidence has gone and will not return.

An enabling rights-based approach says ‘you have a right to quality of life and deserve to do more than merely exist before, during and after COVID-19’. There are many initiatives across Scotland doing just that. They are helping people with dementia and carers navigate the restrictions of COVID-19 by teaching them to master online meeting spaces; providing telephone befriending and opportunities for peer support; sending (and receiving) handwritten letters; delivering arts and craft materials; chatting at a distance through the window; creating safe opportunities for singing or reminiscing or taking part in virtual walks; or starting each day with dementia-friendly exercises.

 

 

 

 

 

 

 

 

A number of project leaders that we have spoken with say that COVID-19 is increasing the variety of ways that people with dementia can be engaged and enabled. Their work is growing and developing rather than shrinking during lockdown. This is particularly the case where communities are pooling their resources and working together in new ways.

 We must make time to reflect and learn from COVID-19

COVID-19 is providing us with an opportunity to test how strong the roots of our human rights-based approach to dementia in Scotland actually are. After all, trees need strong winds to help them mature and grow stronger.

We have seen some excellent examples of rights-based practice in action, and also some examples of rights being set to one side in the name of expediency. This is a real opportunity for learning and growth, which occurs at a good time when the Scottish Government is looking at refreshing its National Dementia Strategy and a number of local dementia strategies are being drafted by Integration Joint Boards.

A number of the evaluation reports for Life Changes Trust funded projects will now also examine how projects, people with dementia and unpaid carers were affected by, and responded to, COVID-19.

As we all gather the valuable evidence we have and reflect upon it, we will be in a position to share learning and strengthen our human rights-based approach in Scotland for the future. It is unlikely we will have an opportunity like this again in our lifetime.

 

 

 

 

Anna Buchanan, CEO, Life Changes Trust

De-mystifying Technology

It’s not unusual for people to feel a little bit wary of the word ‘technology’, especially as we live in a world where there seems to be something new and ‘wonderful’ coming to the market every day.  It’s difficult to keep up.

It would also be easy to be sceptical of the idea that technology is something that can help and support older people, including those living with dementia, to stay connected, yet independent and able to live in their own home safely and for as long as is possible.

But what do we mean by technology?  Yes, some of it sounds complex but some ‘technology’ is simply adaptations of things we use in our daily lives.

Image result for large button phones

To start with some quite sophisticated examples, recent news reports tell us about technology that is developing to help people living with dementia, such as PARO, the robot seal from Japan.  PARO is said to have potential to be a companion and empower people to be more socially interactive.

Robear is a nursing robot touted as a gentle bear that is also strong enough to lift an elderly person.

Developed in Sweden, ‘Giraff’ is a human-sized, mobile telepresence robot that enables people outside the home (or care home) to interact virtually with people they know but who are not physically present.

Closer to home, the virtual reality (VR) social enterprise Viarama uses VR to help care home residents enjoy experiences they would not otherwise be able to participate in, such as exploring under the ocean or climbing a mountain. Connecting Communities’ ‘Windows to the World’ project uses linked, interactive screens to connect dementia friendly communities across the Highlands so that, together and separately, they can access a range of creative pursuits and therapeutic interventions.

Image result for virtual reality headset

These are examples of relatively complex technology, yet they are reported to be having enormous benefits for people living with dementia.

Of course, there are more simple examples, and these are the things that more people could be taking advantage of, as many of them are adapted from items we use in everyday life.

Many of us know about Tele-care for use in the home such as GPS trackers that enable people to get out and about, talking clocks, motion sensors, call blockers, ipads, MP3 players (Playlist for Life) – and the list goes on.

Ron Coleman, who has mild cognitive impairment and lives in the Western Isles, has found Amazon’s Alexa to be immensely helpful. So much so, that he is writing a peer-to-peer resource – ‘Alexa and Me’ – to assist people living with dementia so they can benefit from Alexa too (due to be published by the Trust later this year).

Yet there are still many families living with dementia who are in the dark about the benefits – and ethical implications – inherent in these increasing opportunities to use technology to improve lives.

In 2019, the Life Changes Trust published a ‘Dementia and Technology’ report, commissioned and funded by the William Grant Foundation. The purpose of this report was to a) publish findings on the evidence base for assistive technology for people with dementia and their families living in the community; and b) provide feedback from focus groups with people with dementia and unpaid carers on how they are using technology and what the perceived barriers might be. The full report is available here.

The report found that the academic evidence base is weak, partly due to the number of studies and partly to the sample sizes. Unsurprisingly, the focus group research showed that no two people with dementia had the same technological needs. Participants had both positive and negative views about assistive devices and overall the groups were very open to the idea of using technology.

However, several barriers to uptake were identified: lack of knowledge and familiarity with technology; stage of dementia; cost; lack of time; denial of dementia symptoms; complexity; confidence in abilities; lack of support; and past technology engagement.

The most prominent reasons for non-engagement with technology were lack of information about the available products and lack of support. People wanted to be shown what to do and supported longer term with the product. As one carer said:

“…it’s incredibly difficult if you’re on the phone trying to discuss a technological problem. It’s very, very difficult. You really need to sit down with somebody and hold the piece of technology…”.

Dementia Circle is an excellent project funded by Alzheimer Scotland which supports people to test products and report on their experience. This has led to the development of a product list of recommended products and apps.

Scotland’s Technology Charter for People Living with Dementia is clear that technology should augment, but not replace, human intervention. Many people are concerned that ‘PARO’, ‘Giraff’ and similar technological solutions are a substitute for much-needed face-to-face interaction.

Scottish Care has led work developing a human rights-based Charter for Technology and Digital in Social Care. This is important and very necessary work as we grapple with the ethics of technology. The hope is that human-rights-based principles can provide some definition in a world that is becoming increasingly blurry in respect of privacy, choice and human relationships.

Image result for human rights wood

The work – which included developers and designers, providers and practitioners, residents and citizens who use social care supports – resulted in the recently published Guidance Document for Human Rights Charter for Technology and Digital in Social Care. This Guidance outlines 17 human-rights-based statements and suggests how they can be used to support the human rights of individuals and communities in the use of technology and digital in social care. They have been designed to foster discussion and to promote further reflection.

Following the publication of the ‘Dementia and Technology’ report, the Life Changes Trust and the William Grant Foundation are holding a conference in Glasgow in partnership with Alzheimer Scotland and Scottish Care. If the matters outlined in this short blog are of interest to you, then please sign up for this free conference where you will have the opportunity to further explore and consider them.  This event is delivered in collaboration with William Grant Foundation, Alzheimer Scotland and HammondCare,

The conference will comprise of a number of short plenary presentations and practical workshops. There will be plenty of time to explore exhibits and at the end of the day a technology competition, funded by the William Grant Foundation, will be launched.

For more information and to book, see Eventbrite here

Anna Buchanan, CEO, Life Changes Trust

The carer’s voice – why it matters

In 2005, ten years after my mother was diagnosed with dementia, I started to write a blog.

At the time, I was self-employed, juggling jet lag, two small children, an irascible but loving husband, a cat, two rats, and the care of a matching pair of demented grandmothers. To take on another commitment was a little daunting. But it was a metaphorical spit in the eye of dementia; an attempt to ‘do’ dementia, rather than let dementia ‘do’ us. And I wanted to write a testament to Mum.

The first entry of ‘The Dandelion Clock’  read:

“The Dandelion’s puffball can tell you the time, but it is a fickle instrument. Time is dependent on how hard you puff and how quickly the seedlings fly away. The one thing that is constant, is that in the end, all the seedlings are gone. Dents de lion and pissenlit – it’s all the same in dementia.” It wasn’t particularly an original analogy, but it seemed to encapsulate the disintegration of a fine mind combined with a pollination of all the young minds that Mum had nurtured in her past.

Happily, that puffball defied two decades of dementia to remain joyfully and raggedly intact. Throughout, the guiding principle for me and my small band of carers was that Mum was living with dementia, not dying from it. A week before she died, I had persuaded Stagecoach to make a small detour to their publicised route, so that we could host a bus party for all, replete with mocktails, balloons and streamers. Our mantra “where there is no cure, there is always care” had a subtext of fun. Care meant living to the max and it looked something like this:

  • Good care requires carers first and foremost, to be experts in the person and secondly, the illness; this is the only route to person-centred care.
  • Good care is a two-way street, just like communication. Listening and receiving are as important as saying and doing. The goal is to enhance sense of self and self-esteem.
  • Good care means helping someone to stay connected to the place/people/things that matter.
  • Mental and physical wellbeing are inseparable. You cannot nurture one without the other.
  • Good care is like conducting an orchestra. You don’t need all the players all the time but you have to be able to read the score and know who does what.
  • Celebrate all that is achievable and do-able today: learn to work around the things that are lost.
  • Plan for ‘What if..?’ Carers are adept at crisis management but even chaos has a theory.
  • Accept that no-one will care as much as you do. About the person you care for or about you.

From the beginning I knew that, as a carer, I had to speak up and speak out. I agreed to become a founding member of Alzheimer Scotland’s Dementia Action Group in the hope that we might spark a discussion with Social Services to improve local support. I’ve spoken to medical students and nurses at the Universities of Stirling and Abertay, at DSDC and at the invitation of Alzheimer Scotland, Social Services and at carers conferences. I’ve spoken about our interpretation of best practice and about the impact of caring. And for the last four years, I’ve been privileged to represent all carers in my role as one of the carer reps sitting on the Executive Committee of the College.

Sitting in a low-ceilinged, sardine-tin of a room from two to five on a wintry afternoon takes dedication. Members travel from far afield to attend and rarely miss that quarterly meeting. Carers and service users contribute on equal terms with our medical colleagues. We feel like equal partners in care. We have true parity of esteem. I applaud and am humbled by the Committee’s recognition of carers and service users – it is rarer than they know.

 In the beginning, blogging gave me the freedom to speak my mind, about what was happening to me, to my family and the difficulties in piecing together support that encompassed the right balance of fun, compassion, respect and safeguarding. And blogging gave me a platform to write about the evolution of statutory care under the guise of “improvement” to service users and clients. In those days, the carers’ voice was not as sought-after as it is today.

That was then

If medication, and the review and tweaking of medication, is integral to some mental health care (less so in dementia), the careful construction of a social/community network with Social Service support is its important counterpart. And that remains as true today as it was over a decade ago.

I was not the only carer and writer to notice an imperceptible shift in social care provision around 2004. For us, it came in under the guise of ‘the flexible delivery of service to clients’. Our team of three carers mushroomed to twenty, thirty. Continuity and routine collapsed, Mum stopped eating and depression cast its long shadow.

The odd thing was that the more services were driven by financial imperative, the more fuzzy, buzzy phrases infiltrated service-speak. Thirty years down the Kitwood line and we had a slick lexicon to de-stigmatise and re-define mental health and those of us in its orbit.

Suddenly, carers were on “journeys”. Unwittingly, I had embarked (apparently) on a ‘career’ that might span years or perhaps decades. Meanwhile, the NHS and Social Services had clients, service-users and customers. And while I respect the wish of anyone who is living with a mental health issue not to be shoe-horned into the role of victim, we’re not talking Tesco’s or Apple Genius bars. ‘Patient’, from the Latin patior (to suffer), sometimes is the word. There is real suffering – and it’s not disrespectful to acknowledge that.

Re-vamping the branding doesn’t fool anyone, if the product on offer is pared to the bone. Eighteen months after Mum died, I wrote a letter to the First Minister. In it, I detailed my experiences as a carer and offered suggestions as to how things might be improved. I wrote about the nonsensical protocols that straightjacketed competent professionals into solutions that failed the very people whom they sought to serve. Solutions that were designed for bean-counters but which left even the most dedicated health practitioner demoralised and demotivated.

I asked about that much-publicised switch to care in the community. Surely that’s an objective to unite us all? Offering the prospect of cheaper care, no more silos, greater social acceptance. But as care needs amplify, I wondered how individuals were to access hospital beds, variable airflow mattresses, bath aids, stand aids, rise and recline chairs and wheelchairs? And if you are fortunate enough to fast-track those forms in duplicate and triplicate to get the equipment at a time when you needed it, how do you manoeuvre the hoist over carpets, get it through doorways and under the divan?

What about tax relief on care items no longer funded by the NHS or Social Services? On paid care so that you can continue to work in tandem with caring? What if carers with a proven track record of caring were allowed to claim against the estate to fund the costs of retraining and re-skilling in order to re-enter the workforce?

Eventually I got a reply, expressing condolences on the loss of my father.

This is now

Today, there are more mental health initiatives than ever before. Scotland boasts a Third Dementia Strategy, a Mental Health Strategy, a Carers’ Act, Frank’s Law, Self-Directed Support – but it amounts to diddly-squat without the commitment and the people to carry it through.

Legislative changes have put carers on the political agenda so why do so many carers report that their lives are harder than before?

Telling your life-story has become a little like old repeats on TV without the corny jokes or the punch-line. Ironically, carers in Scotland feel the contraction in services more than their counterparts in the rest of the UK. Self-Directed Support (2014) and the Carers Act (2018) might look good on paper but both are badly under-funded and poorly and unevenly implemented region to region. Local authorities and Social Services have faced swingeing cuts in staff and budgets.

The core issues remain the same as those that we were writing about in 2005 but life seems even harder for today’s carers. Only a small percentage are able to access support that is appropriate to them and the person whom they care for. Only 10%+/- of carers receive Carers’ Allowance and the Carers’ Annual Supplement. The quality of paid care is widely reported to be below par, while respite, even when available, is rarely tailored to age or condition. Inappropriate care and care settings are particularly pertinent in mental health care across the ages.

The State of Caring Report (2018: Carers UK) showed that conditions for carers have deteriorated even since 2016-2017. Caring brings financial hardship; it impacts on job, status, retirement, self-esteem and life opportunities; and it brings social isolation and dislocation. In the UK, 72% of carers suffer mental ill health as a result of caring. In Scotland, mental ill health affects 75% of carers.

What have carers got to do with the College?

Self-management of mental ill health and self-care to uphold mental wellbeing is surely the optimum. There are peer support groups, community projects and online programmes that are excellent – and we are getting better. But the reality is that so often, whether it’s just once or for a lifetime, support is needed from a family member or a close friend. And that’s where carers come in.

Recently, I attended a Carers’ Forum for which the main topic was desirable outcomes from the Third Dementia Strategy within the broader remit of the Mental Health Strategy (Is that the Strategy in which carers barely get a mention? Yes, dear Reader, the very same). Yet again, carers’ wishes were for befriending; the restoration of day care; better access to respite; the need for solutions and packages that were bespoke and person-centred. Every concern was noted but it became apparent that the focus of the Partnership was Telecare.

I’m not against Telecare. I quite fancy having my own care robot, a Dobby with interchangeable heads. I’d be hard pressed to choose Alan Garner or Joanna Lumley. But we are so far from that. And the idea that the most cost-effective human contact substitute is a disembodied voice channelled via a box on the wall because we cannot afford better, is depressing and dystopian.

My mother thought that the neighbours talked about her via her radiators. For weeks, she sidled along the walls so as not to wake the forces contained in those magnolia panels.

It’s people, it’s always been people, who can make a difference. And that means all of us – you, me, the psychiatrists, GPs, nurse practitioners, CPNs, pharmacists, psychotherapists, service users and carers – all of us playing the right notes in the right order- we’re the people who can make a difference.

Get a diagnosis and you have a chance of accessing financial and management support. Advances in medication combined with psychotherapeutic intervention augur well for successful self-management. And when self-management falters, carers with commitment and compassion and old–fashioned love are the backstop.

Some fifty years ago, Edward Lorenz theorised that the fluttering of a butterfly’s wings multiplied a thousand times would trigger changes in the atmosphere that could alter the course of a tornado. None of us can do it alone. Together we are so close to opening doors, to giving people a real chance to choose life, not just existence.

Those who have the privilege to help others transform their lives, often find that is actually their own lives that are most transformed in the process.

“There is no passion to be found in playing small – in settling for a life that is less than the one you are capable of living.” Nelson Mandela

Katharyn Barnett

Katharyn was originally invited to write this article by the Chairman of the Executive Committee of the Royal College of Psychiatrists in Scotland to mark the end of a four-year term serving on the Executive Committee as carer representative. The item appeared on the Royal College of Psychiatrists’ Scotland webpage as a guest contributor to the College’s blog. Having left the Carers Centre earlier this year, Katharyn is now engaged as a Dementia Link Worker in the Forth Valley team.

 

 

Systems Change, Relationships and Love

When I was asked if I fancied writing a blog for Care Experienced Week, it wasn’t a tough decision. I enjoy putting pen to paper, because I like to reflect and writing helps me to do that. At Life Changes Trust we put a lot of effort into being a learning organisation, but at the same time we are often juggling lots of competing work demands and so reflection time can be squeezed.

Whether I’m putting a blog together, crafting a Tweet or creating a short journal entry, writing helps me to carve out time and space to take a step back and try to make sense of the world in some small way. I suppose it’s a form of storytelling, and unsurprisingly I’m a big reader too. One of my friends gave me a framed Louisa May Alcott quote that gives a bit of insight into what folk think about me:

“She is too fond of books, and it has turned her brain”

I’m ok with this image of me as someone who lives in her own head a bit, as it has some truth, but isn’t the whole truth. The human brain is wired to think in stories – stories helped our distant ancestors share knowledge about how to survive in a hostile environment and became an essential element in the survival and development of our species.

In our work, we have found that giving people the tools to express themselves and tell their own story offers a route to a deeper understanding of what matters to young people with care experience, people living with dementia and unpaid carers. For anyone interested in designing services and supports that focus on what people need and want to live their lives well, this is vital territory.

A couple of years ago the Trust delivered a leadership programme for people who have important connections with the workforce and carers of young people with care experience. The programme was focused on systems change, in recognition that many of the challenges young people with care experience face are caused by system factors such as organisational and service behaviours, public attitudes, market forces and policy decisions and policy implementation.

The leadership programme was set a challenge by the Trust’s Advisory Group, a challenge which spoke to all of the above system dimensions, namely, “how do we put love and relationships at the heart of the care system?”

 

This challenge grounded the programme and set us off on a quest to start writing a fresh story about the care system with young people who have lived it.

 

The Advisory Group is made up of young people with their own unique experience of growing up in the care system, and for three years now we have been building relationships with them, both as individuals and as a group. I now realise that a lot of this has been about being alongside the group as they have developed their story. At the same time, it has been important that we share aspects of our own stories, both as people and as representatives of the Life Changes Trust.

We knew straight away that the group was going to be much more than the sum of its collective care experience, albeit that the perspective of the members, which is grounded in the often harsh realities of life growing up in the care of the state, has been invaluable to us as we have tried to design funding initiatives and create collaborations which truly have the potential to create lasting positive change.

We have learned that as individuals they have multi-faceted identities – including those of loyal friends, hard-working students, loving parents, passionate campaigners, talented creatives, thoughtful citizens and proud brothers and sisters. Their honesty and openness in sharing their experiences and perspectives has constantly inspired us as staff members to open up and connect as human beings as well as people with a job to do.

We took this ethos into the leadership programme and challenged participants to ask some searching questions of themselves – were they really ready to promote a relationship-based approach amongst the staff and carers they lead and represent? If staff and carers who get alongside young people every day are to show caring, loving behaviours, it is essential for organisations to show care for those same staff members and carers.

The leadership approach needed to create the kind of environment where people feel safe and supported to act with empathy and kindness, calls for different qualities to those we may traditionally associate with leadership.

Top down approaches are not helpful, because strong relationships require us to be present in the moment, to be self-aware and alert to the needs of others. In other words, people need autonomy and leaders need to be open to distributing their power. This type of leadership also calls for people to put their organisational competitiveness to the side. Tackling systems challenges requires us to work across organisational and service boundaries while keeping the focus on what young people need and want.

We held a residential as part of the systems leadership programme, and in the first day we got straight into some of this challenging territory. We found that the spirit of openness and honesty which had been present with the Advisory Group from day one was much more difficult to foster in a group of people with decades of professional experience behind them. There were some scary moments when we worried that the whole enterprise was doomed to failure. And of course some of these moments have now become the stuff of legend – stories that we dust off when we meet new people and want to let them know what we’re all about, or stories that lift us when we have doubts.

Ultimately, despite the rocky start, the programme proved to be influential in a number of ways. Rosie Moore, a former member of the Advisory Group which set the love and relationships challenge, was nominated by a member of the programme to take part in the Journey phase of the Independent Care Review, and has gone on to be a Co-Chair of the Love Group. New collaborations have developed, for example between Staf (Scottish Throughcare and Aftercare Forum) and CYCJ (the Centre for Youth and Criminal Justice) in relation to participation for young people with youth justice experience and trauma-informed approaches. Care Inspectorate standards were influenced – with a focus on inspectors assessing the quality of relationships available to young people in care settings. Internally, at the Life Changes Trust, we designed new application processes which privileged both relationships and the perspective of young people.

Perhaps more importantly than all of that, however, is the impact on individuals and the way they approach not only their work but their lives. By challenging us to open up and be honest about our personal traits, the programme gave us a small taste of what it must be like to be a young person who is constantly expected to share sensitive personal aspects of their lives with strangers. It also made us think about the ways young people try to take control of their own narrative and reflect on events as a means of reaching out to others – by knowing ourselves, we have greater potential to know others and build lasting relationships.

At the Life Changes Trust, we believe much of the legacy for the work we have been doing lies in people. Creating better lives is not a mission for someone else – it sits with all of us, every day, as we have the potential to build relationships. Not relationships with stakeholders, or potential partners, or people with lived experience, or funders or anyone else who we may think can help us advance a short-term agenda – but open relationships with other human beings, without judgement or assumption.

This is the true work of long-term system change, and young people with care experience are showing us the way.

Carole Patrick, Director of Evidence and Influencing, Young People with Care Experience Programme

Dementia: Managing loss and addressing stigma in the journey to residential care: Part 2

I’ve been talking about managing loss and the transition into residential care for people with dementia, and how we can support their journeys.  I wanted to now talk about dementia friendly communities such as those funded by the Life Changes Trust.

Dementia Friendly Communities are first and foremost about inclusion.  For example, the Trust funded an allotment and community garden project in West Dunbartonshire, which offers a safe place for those affected by dementia to socialise and work alongside other people in the community.

By providing opportunities for people to contribute and volunteer within the allotments, the projects are continually providing ways to break down preconceptions and beliefs that many people hold about people affected by dementia. This allotment is also attended by members of the local care home, who thrive in the environment of the outdoors, where they can participate in gardening and growing fruit and vegetables.

Sporting Memories groups are another example of a Life Changes Trust supported project that helps to break down societal stigma and discrimination. The programme is run across Scotland and helps to promote both the physical and mental well-being of people affected by dementia. By meeting both in public and sporting venues, as well as holding meetings in care homes themselves, this helps to break down any negative attitudes towards people with dementia by showcasing that individuals are still perfectly capable of socialising and having fun with others.

 

Expanding into care homes also helps to ensure that residential care doesn’t limit or exclude anyone from continuing to participate in social activities and groups that they enjoy, while also providing other residents with the opportunity to attend as well, who may not be as able to commit to any external activities. This avoids both discrimination and exclusion of anyone who wants to attend, by ‘bringing the group to them’ and not depending on staff or family availability to accompany the person if needed.

Priority one of the Life Changes Trust is to enable people affected by dementia to live in a place that suits them and their needs. In a residential setting, talking to the individual about what they need and want for a good quality of life, what is still possible for them to achieve and encouraging them to redefine their goals will help them to discover new ways in which to enjoy themselves and highlight activities for them to look forward to.

The second priority of the Life Changes Trust is to protect and promote the independence of people affected by dementia. Maintaining and promoting the confidence of people is crucial to encouraging them to remain as independent in residential care as they can, minimising the risks of loneliness and boredom. A continuing sense of self throughout the transition into residential care can help to promote and maintain an individual’s confidence and dignity.

The third priority of the Trust is to support work that will guarantee that people affected by dementia get the help they need, when they need it. Providing choices and opportunities for people to voice their preferences and opinions, allows an individual to maintain a level of individuality, promoting their dignity and independence. Staff who adhere to these principles work with people affected by dementia in a person-centred manner.

Priority 4 of the Life Changes Trust is to create a culture in Scotland where people affected by dementia feel safe, listened to, valued and respected. Maintaining pride, resilience and a fighting spirit are crucial for an individual affected by dementia to feel involved and valued both as a person and as a resident.

The fifth priority of the Trust is to empower people affected by dementia to do the things that are important to them.  Taking the time to learn about a person’s life and what roles are important to them, can allow a care home to facilitate the continuation of some of these roles and maintain their pride, dignity and purpose.

The transition into residential care is a massive adjustment for everyone, including the care home staff. In order to deliver personalised and person-centred care, staff need to take the time to get to know the person, discovering their likes and dislikes, what motivates them and what they enjoy. Well planned therapeutic activities that reflect the person’s interests can be a good way to build up relationships. Taking the time to plan something for a new resident can make them feel listened to and valued, while simultaneously involving them in activities, and help them to settle in and readjust.

Keeping people active and engaged with a range of different activities is vital to preserve a person’s cognitive and social abilities. Interactive activities with visitors to the care home is a great way to get people involved, make new friends and maintain old relationships with friends and family outside of the care home. Creative arts, music, cooking and baking workshops are all examples of ways in which care homes can provide fun and interactive ways for residents to preserve their skills while enjoying themselves at the same time.

Resident-led timetables and classes will ensure that people are offered a choice and an opportunity to voice their preferences, for example allowing them to choose the times and days of the classes, along with what they would like to do within the sessions. This provides the best possible chance that people will enjoy and attend the sessions as it is catered for their preferences, whilst maintaining their sense of dignity, independence and remaining person centred.

 

Being made to feel like your opinion matters makes a person feel valued, respected and involved, all resilience building qualities that can help to improve a person’s experience of residential care and improve their quality of life.

But there is still work to be done.

A report by the Alzheimer’s Society in 2007 found that the biggest areas in need of work are the provision of activities and occupation, treating residents with dementia with dignity and respect, and the relationships between care home and relatives/friends.

And almost a quarter of those asked were unhappy with the level of their involvement in decision making about the care of their relative and over a quarter of carers felt that they did not receive enough information and updates about the care and treatment of the person they cared for.

These findings clearly show the gap between good quality practice and meeting the needs and desires of those affected by dementia, giving a focus for continuing work around improving the experiences of the transition into care for individuals and their families.

Recently, the Life Changes Trust invested £135,000 to ensure that the rights of people living with dementia in care homes are recognised and respected. Care homes across Scotland will benefit from the funding, and will use it to support the inclusion and participation of residents with dementia in a meaningful way, so that residents have a genuine say in their own day to day lives.  This will hopefully provide a precedent for future practice within care homes, transforming how people with dementia experience the transition into a residential setting.

 

Within this blog, I have tried to highlighted some of the current issues and areas for improvement facing people affected by dementia and their transition into residential care. All of the projects funded by the Life Changes Trust are undertaking transformational work with people affected by dementia all across Scotland. Dementia is not the end of someone’s life, it is merely the beginning of a different, and hopefully a more supported one.

Dementia: Managing loss and addressing stigma in the journey to residential care

Over 90,000 people in Scotland are estimated to be living with dementia, and between 2006 and 2016, the number of adults with dementia in residential care increased by around 30%.

The transition into residential care can affect more than the individual with dementia, as most people have friends and/or family around them that will also have to readjust to their move. Carers can find themselves with a smaller role and less responsibilities for the individual and so can also struggle with the readjustment of the transition.

Such a significant change in a person’s life results in many losses, such as the loss of one’s home, daily routine and freedom (to some extent). Loss of identity is also a big issue for people living with dementia in residential care homes – to go from being a homeowner, a wife or husband, to a care home resident is a massive shift in self-identity.

There are also many stigmas associated with a diagnosis of dementia, such as dementia being the ‘end’ of someone’s life (either literally or socially) or that those with dementia in residential care are there because they are ‘hard to manage’. Carers, friends and family are also sometimes unfairly stigmatised as having ‘given up on the person’ and having ‘got rid of them to a care home’.

There is also a lack of understanding around the impact and causes of some of the more inconspicuous or ‘unresolved’ losses involved with a move to a care home which can affect both individuals with dementia and their carers.

Kenneth Doka, a Professor of Gerontology, first introduced the concept of ‘disenfranchised grief’ in 1989. He defined it as ‘grief that is experienced when a loss cannot be openly acknowledged, socially sanctioned, or publicly mourned’. Put simply, disenfranchised grief isn’t automatically recognised and doesn’t hold the obvious need for mourning, such as the death of a loved one. For example, losing one’s identity after living with family for a large part of your life can trigger grief that can often go unrecognised or belittled, leading to unresolved, disenfranchised grief, which in turn can lead to a vast array of problems, such as a decline in mental health or the onset of depression.

For a spouse who may have been caring for their partner for years, the sudden loss of responsibility and their caring role can be a massive shock. Not only will their daily routine change, but the absence of the person will be significantly notable.

Pauline Boss from the University of Minnesota describes this experience as someone being ‘psychologically present but physically absent’.

Another threat to the well-being of individuals with dementia and their families is the risk of entering ‘anticipatory grief’.  Clinical Psychologist Therese Rando believes that this can form from an individual accumulating all of their previous related losses, developing a negative attitude towards the future, and focusing mainly upon all of the losses yet to come. For example, a person living with dementia who is transitioning into residential care might think of all of their previous losses – their decline in cognitive ability, their potential reduction of social freedom – and so begin to think mainly of further future losses. For a person about to enter residential care, they may easily presume that this means the imminent loss of their freedom, dignity and social life.

Another factor that can increase the risk of disenfranchised grief is the sudden exposure to the deaths of other residents. While individuals are likely to have experienced the death of one or two people outside of residential care, their exposure to death will suddenly increase. This may inhibit individuals from being able to acknowledge and respond appropriately to each loss.  Care staff are more likely ‘to be used to’ dealing with the death of residents, but for a new resident this can be overwhelming and scary.

So what can we do to ensure the general and mental well-being of all individuals transitioning into residential care, as well as that of their friends and family?

The Life Changes Trust has 5 main priorities relating to their dementia programme, based on what people with dementia and carers told them was important to them. They provide a solid base to begin to answer the above question. They are:

  • I live in a place that suits me and my needs
  • I am able to be as independent as possible
  • I get the help I need when I need it
  • I feel safe, listened to, valued and respected
  • I am empowered to do the things that are important to me

Another of the Trust’s areas of work is challenging societal stigmas and negative discourses surrounding people affected by dementia. One of the best ways to break down barriers and stigmas of those affected by dementia is by finding ways in which they can continue to play a role and have a visible presence in local communities and projects.

By integrating those affected by dementia with the general population, we can begin to challenge any preconceptions that people may hold, such as the belief that those with dementia are unable to function independently anymore, or are unable to continue with everyday life and activities despite their diagnosis.

Dementia friendly communities such as those funded by the Life Changes Trust, allow a safe place for those affected by dementia to socialise and work alongside other people in the community.

They also continually provide ways to break down preconceptions and beliefs that many people hold about people affected by dementia, both in and out of care settings.

I’ll talk in more detail about the Life Changes Trust funding for dementia friendly communities in part two of this blog.

Post Diagnostic Support

close-up-medical-equipment-stethoscope-161489

By Anna Buchanan, CEO, Life Changes Trust

In 2013 the Scottish Government made this commitment:

“…by 2015/16, all people newly diagnosed with dementia will have a minimum of one year’s worth of post-diagnostic support coordinated by a Link Worker, including the building of a person-centred support plan”.

Recently published Scottish NHS Board Performance data reports that in 2016/17, three in five people newly diagnosed with dementia did not receive the minimum one year of support promised by the Scottish Government. The same was true in 2015/16.

An article in the Evening Express (7/2/2019) picked up on the fact that just 18.6% of newly diagnosed patients were referred for support across the NHS Grampian area in 2016-17. When asked about these statistics, a spokesperson for NHS Grampian explained that not everyone chooses to take the package of support. This supposes it was offered to everyone and that 81.4% of those people turned the offer down. If this is indeed the case, there are some questions that need to be asked and answered.

  1. Why do people feel they do not want the support?
  2. Is it perhaps being offered at the wrong time when people may still be coming to terms with their very recent diagnosis?
  3. Would it be better if support was offered on further occasions as well as immediately after diagnosis?
  4. Where else are people finding support in the community post-diagnosis?
  5. Should there be multiple points of access to post-diagnostic support?

However, the NHS statistics do not tell the whole story. If Grampian, for example, were to look at the ways in which people with dementia and carers access support in other ways, that is, not commissioned post-diagnostic support, we may see a more expansive picture. It would be a more complex picture, but it may be a more hopeful one that also gives a better idea of the reasons why people may not want to engage with what appears to be a formal service strongly correlated with a medical diagnosis.

The Life Changes Trust has invested around £800,000 in Grampian over the past four years and through this investment has, to date, reached upwards of 1,200 people with dementia and 800 unpaid carers through various types of support. Some attend health walks, art classes, and fitness sessions, others may join carers groups, or find peer support amongst other people with dementia in their local area. There are many other organisations, not funded by the Trust, delivering similar work throughout Grampian.

This may not seem like ‘post diagnostic support’ in the traditional sense at first, but when we consider what many of these community-based projects are providing by way of advice and information it certainly is support that is provided post-diagnosis. It is a less formal way of accessing post-diagnostic support, with the access point being through an interest or a familiar place.

For example, for someone with dementia who has a lifelong loyalty to Aberdeen FC, what better way to receive information, advice and support than by attending dementia friendly walking football or a health walk at Pittodrie? The work done by Aberdeen FC Community Trust provides a community of support and opportunities for respite, but they also refer people on to other organisations for more specific support.

If a person has dementia and English is not their first language, they may need extra support to find information and advice in their own language (which should be provided free of charge by statutory agencies). The Aberdeen Council for Voluntary Organisations is currently working to make sure that people living with dementia, and who are from European Ethnic Minority backgrounds, can receive the support they are entitled to. There are many Black and Minority Ethnic communities that need this extra support but who find it easier to accept when explained and delivered in their own peer group and in their own language.

‘HOME’

housing

A significant pilot project has run in Aberdeen since early 2016 – the Dementia Enablement Project run through Castlehill Housing Association’s Care and Repair service. Fully trained dementia enablement staff meet with people with dementia and carers in their own homes to talk about small changes that might be made in the home to help them stay there for as long as possible.

This is because dementia is not just about loss of memory, it can also lead to significant sensory challenges, where the brain may misinterpret information and cause disorientation. For example, a highly patterned carpet may make someone feel dizzy; or a mirror that reflects passers-by may cause a person to think that a stranger is in the house. Fear and loss of confidence can result in a person staying indoors and not exercising, which can lead to an increased risk of falls. Loss of short term memory can mean that medication is forgotten or taps are left running. When these things happen, carers may lose confidence in their ability to care sufficiently and feel they must look for a care home placement earlier than expected. Care and Repair offers a number of solutions to these issues, for free.

Care and Repair

By making small changes in the home at an early stage (early intervention) many people with dementia in Aberdeen are living more confidently in their homes for longer and carers are relieved of a certain amount of worry. The average cost per person assisted currently stands at £243, but is likely to be lower once the project has been completed. Statutory services do not fund a service like this at present, though the cost savings to the public purse of keeping people out of hospital and care homes is obvious.

The dementia enablement staff have come across many people living with dementia who have had a fairly recent diagnosis but who have never seen a Link Worker. Some were not offered the service or are on a waiting list. Dementia enablement staff have discovered that some people did not take up the offer of support because they did not feel ready for it at that time or did not understand what was being offered.

Care and Repair is able to access homes through a practical offer of support that focuses on the home. Link Workers also carry out most of their valuable work by visiting people in the home – but if a person has previously said they do not want post-diagnostic support then Link Workers have no authority to cross the threshold.  Care and Repair’s staff enter on a different basis and, once trusted, are able to offer information and advice, and make referrals to other agencies. In Aberdeen many people with dementia and unpaid carers have been supported by the dementia enablement staff to claim benefits they are entitled to, amounting to more than £300,000 to date, which is almost equal to the amount invested in the project by the Trust.

The pilot project, which operates in four areas across Scotland, is being evaluated and an interim report will be available in early spring 2019.

This is not a suggestion that Link Workers should be replaced or removed; we do, in fact, need more of them. However, we also need a broader understanding of the variety of ways in which post-diagnostic support might be provided across the community. The recent statistics show that around 10,500 people newly diagnosed with dementia in Scotland in 2016/17 did not receive the one year’s support to which they were entitled and, of these, around 9,300 were not referred for support at all, for whatever reason. We should reflect on this and consider the value of those organisations that are providing good quality, but less formal, post-diagnostic support.

Integration Joint Boards should consider how they invest in these organisations, which provide excellent value for money. They should look at more than one model for the delivery of post-diagnostic support and explore more deeply the ways in which people with dementia would prefer to receive that support in the first 12 months and beyond. The value of peer support is under-explored. In time, IJBs may wish to consider accreditation for organisations that can provide high quality, highly localised post-diagnostic support in creative ways that help people engage more meaningfully with the offer.

Anna Buchanan, CEO, Life Changes Trust

Anna Buchanan _colour Jan 2018_Fotor