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.

Advertisements

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

Making Human Rights Ordinary

Related image

By Dr Donald Macaskill, CEO, Scottish Care

This year, we celebrate the 70th anniversary of the establishment of the United Nations Universal Declaration of Human Rights.

The Declaration was the first step in the process of formulating the International Bill of Human Rights. These are the world’s key human rights charters and regulations.

The reason we have our Conventions and laws is that, 70 years ago the world was still waking up from the nightmare of the Second World War. In that obscene period hundreds of thousands of people had their basic rights removed or obliterated – their right to life and health, and to being treated with dignity and as human beings. The women and men who gathered in New York in 1948 to draw up these new laws were not motivated by a desire to develop a complicated legal structure but by the overwhelming passion that humanity could never ever again go back to where it had been in the 1930s and 40s.

Although it’s easy to think that human rights are a complicated legal code or set of rules, they are first and foremost about people. They are in some senses very ordinary.  They are an inherently commonplace set of commitments about how we should live and relate to one another.  They are statements about what it means to be human.

The problem is that we have forgotten the ordinariness of human rights, and we’ve turned them into something which people study, lawyers ponder and politicians debate. We aren’t sure what they are or what they mean.

A few years ago I carried out an exercise in which I asked a group of residents in a care home what they thought of when they heard the words human rights. Their responses were probably reflective of the good and bad press that human rights has wherever you might ask that same question in Scotland today. Some of the responses were negative, others were positive. A not untypical response came from one woman who said – ‘That’s all these rights that stop us from sending terrorists back to their own land.’’ Others were, however, very clear about the relevance of human rights to them. ‘Listen son,’ one older man said. ‘I lost my best friends in a war which was about human rights – though we didn’t use that word then. That’s the world I was fighting for.’ An older woman said to me after some quiet reflection, ‘Human rights – aren’t they about just being human after all.’

It might strike you that human rights aren’t really an issue here in Scotland, that there are very rarely instances where the lives of individuals are under threat, or where they are being abused or oppressed.  But unfortunately there are times when human rights are being restricted or abused right under our own noses, in our own nation and communities.

There are times when, as much by neglect as by design, our human rights are being ignored or downplayed. Such times might include when we grow older, when we develop life limiting conditions or indeed when we move from our own home into hospital, supported accommodation or a care home.

Over the last few years Scotland has led the way in a whole range of efforts to make human rights ordinary, make them the concern of citizens, and in every sense to make them commonplace. One of the really positive developments that has taken place in the last couple of years is the introduction of the National Care Standards. They are a set of practice principles by which every Health and Social Care Service should be delivered. Their emphasis is upon how you, the receiver of care and support, the citizen, should experience and feel about that care. Does it enhance your dignity? Are you being listened to and heard? Are you being treated with respect? Are you able to exercise as much choice and to take as many decisions as you can? These are not always easy questions to answer and not all services are as good as they might be about enabling rights to become real in the delivery of care and support.

Several months ago the Life Changes Trust, in conjunction with Scottish Care, established a £300,000 grant scheme to offer small grants to support care homes to explore how they can better support human rights in the care and support of residents who are living with dementia. Dementia can be a frightening condition, with loss at its heart – loss of identity, loss of confidence, loss of relationships – and it can be all too easy for an individual to lose their sense of being in control, of being able to make choices, of exercising their own human rights. The Making Rights Real project is about turning that on its head. It’s about helping staff in care homes, families and individuals, recognise the role that upholding and advancing human rights can play in supporting and caring for people at very vulnerable points in their lives.

Seven care homes have been selected for the initial phase of this funding. Representing care homes from across Scotland and from very different communities, the projects which have been funded are equally diverse.

What they all have in common is that their work is grounded in human rights. They are about making rights real. They are about making human rights ordinary and commonplace.

People who enter care homes or indeed people in the latter stages of living with dementia do not give up their rights when they grow older. There are still ways in which they continue to contribute to their families and their communities. These exciting projects are about trying to find new, creative and innovative ways in which the human rights of some of our most vulnerable citizens can be better supported and enhanced.

Human rights lie at the heart of quality care and support which puts the individual at the centre of all that happens in a care home. They aren’t about compliance or ticking boxes. They are all about relationships. The work of embedding and realising human rights is about re-orienting the way we care for and support others. How can I get better at hearing from you what it is that you are trying to communicate to me? How can I get better at understanding that you have needs which are unique to you? How can I learn to let you take charge even when you have been diagnosed as having no ‘legal capacity?’ At their best, human rights are a dance, where the carer learns to listen to the rhythm and movement of the music which the person being cared for uniquely creates. This is the stuff of making human rights ordinary and yet, at the same, time extra-ordinary.

I sometimes think we have lost the power to listen deeply to the unique rhythm of every human being, to listen to the story and song which a person has created throughout their living and to hear the direction and movement an individual wants to take. It is much easier for us to think we know what someone needs, to finish their conversation, to direct them where they should be going.

At its best human rights is a new dance, a new language, a new song – not of law and legislation – but of relationship, where the individual and their humanity, is the centre of our caring and community.

The pioneers who created the United Nations Universal Declaration of Human Rights had a dream of creating a world where human rights would become commonplace and ordinary. The Life Changes Trust grant scheme is a remarkable contribution to making Scotland a place where everyone, regardless of place, condition, background or behaviour, has their rights respected and supported. It will be an enjoyable dance of rights made ordinary.

Image result for donald macaskill#

Dr Donald Macaskill, CEO, Scottish Care

Reading Friends – a new project is coming to life!

This blog is courtesy of Katie Pekacar from the Reading Agency

In June 2016 The Big Lottery Fund awarded The Reading Agency £2.1 million over four years to develop Reading Friends, a new programme designed to reduce loneliness and start conversations with vulnerable and isolated older people through reading.

At the time it seemed almost impossible to imagine that we would be hosting an event in the Library of Birmingham less than one year on, with representatives from six projects ready to launch their reading activities in communities across England, Scotland and Wales. But that is exactly what we did a few weeks ago – and it has been a busy year to get to that point!

The project has been entirely co-produced with older people, including people with dementia, carers and disabled people. At several points we’ve changed our ideas completely as a result of this process – for example, the design of the leaflet, how we describe the programme and even the format of the programme itself, moving from a reading challenge, to a more inclusive befriending model.

We have also developed important partnerships with Literature Wales and Scottish Book Trust, who will help us develop Reading Friends so that it meets the need in those nations. Our partners also include a number of national charities and the network of public libraries across England, Wales and Scotland, to ensure we’re building on existing work and infrastructure.

So last week we all met up and heard from each of our six test projects about their exciting proposals to adapt and deliver Reading Friends to meet the needs in their area over the next 12 months. Although we can’t do justice to all their plans, here are some short examples:

  • In Sheffield, Dementia Action Alliance is working with Sheffield Libraries to start conversations through reading with diverse audiences across the city, including a local Pakistani men’s reading group who are interested in Pakistani heritage and a dementia reading group meeting in an antiques shop
  • In Conwy in Wales, Conwy library service will be working with isolated older farmers, many of whom have Welsh as their first language
  • In Newcastle, Age UK Newcastle and Newcastle Libraries will be working together to bring Reading Friends to an existing befriending service
  • Three different organisations across West Sussex – Age UK Horsham, Dementia Support in Chichester and the Abbeyfield Society in Horsted Keynes – will be trialling a networked approach to Reading Friends with West Sussex Libraries providing the infrastructure support and access to a wide range of digital and assistive technologies
  • In Stirling the library service will be looking at how oral storytelling can be used to engage isolated older people, especially those with Gaelic as a first language
  • Oldham Library service will be using an asset based model to engage deprived and socially isolated communities in Oldham with designing and delivering Reading Friends so that it meets their needs.

The Reading Friends team left the meeting feeling excited by all the brilliant ideas, energy and enthusiasm shown by the test projects. We look forward to continuing the journey of discovering what Reading Friends is and can be together with all our partners and the communities they engage over the next year.

Read more about Reading Friends here: https://readingagency.org.uk/adults/quick-guides/reading-friends/

If you want to find out more about Reading Friends email readingfriends@readingagency.org.uk

Language and Dementia: what’s the problem?

demphd

Today we have a guest blog by Kate Swaffer (@KateSwaffer) on (in)appropriate language use in dementia. Right in time for our #demphd chat today at 11 am British time! Your #demphd team ( Grant, Julie, Paul, Clarissa) 🙂

Dementia is heavily covered in the media. From Dementia Awareness Weeks to national guidelines and documentaries, dementia becomes ever more present in everyday life. With such a heavy media coverage of, it is likely that there are some issues that we people with dementia feel are inappropriate.

The problem is that too often, the rights of many people with dementia are not being respected when it comes to the way we are talked about, or referred to publicly, by people without dementia, such as journalists, health care professionals and care partners.

Yet again, during another two recent Dementia Awareness Weeks, we have been blitzed by articles and stories in the print, radio, television…

View original post 574 more words

A day in the life of a peer mentor

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

MENTOR

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

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

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

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

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

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

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

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

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

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

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

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

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

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