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.

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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.

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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.

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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.

 

 

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.

Shinkansen!

This post is courtesy of Andy Hyde, and was originally published on the Upstream website.  Upstream works with people affected by dementia to improve mobility services. Andy was part of a Scottish delegation to attend the Alzheimer Disease International (ADI) Conference in Kyoto in April/May 2017.

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After the great evening with the Dementia Friendly Japan Initiative the sharing continued with another gathering a few days later, this time in Tokyo. Thanks to arrangements made by Makoto along with Atsushi Matusbara and Daisuke Sawada at the Foundation for Promoting Personal Mobility and Ecological Transportation (or the “Eco-Mo Foundation”), I was invited to talk at a meeting of transport operators, academics, designers, and representatives from various disability groups.

EcoMo is working on a range of projects to achieve ‘barrier-free’ transport and environmental transport measures that they describe as ‘… activities to create a social environment that is friendly both to humans and to the earth’. Who could argue with that?

The day started with a trip on the Bullet Train or Shinkansen to Tokyo which was a real highlight! A fantastic experience …although it started with confusion as you have to put both tickets (travel ticket and seat reservation) in the machine at the same time – took me a few goes and a hurried conversation to work this out. It was a good reminder that travel is complicated if you don’t know the rules…

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But the trains are smooth, quiet, on schedule, super-frequent, accessible … and very fast.

 I liked the information on each seat – made it clear where you are, what’s nearby and where you’re going!

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Daisuke Sawada met me at Shinagawa, one stop before central Tokyo, and took me to the Kokuyo office which was hosting the event. The rooftop garden office and pool was slightly different to the usual Upstream workshop environment.

I felt very welcomed and an honoured guest. Around 60 participants came along – transportation professionals, academics, people with disabilities, architects, designers … a great mixture of experience and skills.

Atsushi Matsubara started off, presenting results from a survey that EcoMo had carried out to discover the thoughts of people affected by dementia regarding transport and travel services. Around 4.4 million people are living with dementia in Japan. Of the 380 people contacted, 190 responded and some key messages were:

  • 80% had faced a situation where confusion had made travelling difficult
  • a number of people reported that that they often mistakenly travel without money
  • access to public toilets during a journey is a major issue

Some transport operators had responded:

  • 11 reported that they had training materials for staff around disability/dementia, 3 of them had created materials themselves
  • 12 companies reported that they would welcome opportunities to learn more about dementia

There is recognition that there are many passengers travelling with dementia and also that transport for people living in care homes could be more appropriate too. There was talk of accreditation for employees and also the value of recognising their own personal experiences. This was all sounding very familiar and Atsushi shared his experience of witnessing support available for people affected by dementia in the UK… then it was my turn.

And a few minutes later 60 people were doing the Upstream thing, drawing their journeys through Tokyo and talking animatedly with each other about their different experiences … these pictures include some from Dementia Friendly Japan Initiative

After describing the project (with fantastic translation from Taka) we had a Q & A session where participants asked about driving with dementia, the problems with tickets, the colour of ramps that help people get onto buses, the inequalities of travelling with dementia and more. There was particular interest in the Gatwick Airport lanyard, and it was interesting to note that in the ADI conference pack there was a luggage tag that promoted a similar idea – to identify people who might require some assistance, or a seat. This seemed to be more widely known – a few people at the workshop had them tied to their bags and I’d noticed signs about these on Kyoto buses the day before. So it looks like quite a comprehensive approach although I’m not sure what operator training is part of the arrangement… [update – more information about this from the Kyoto Prefecture website]

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There was much more to talk about but we ran out of time. It was another great chance to exchange ideas, to learn from each other and to explore how we might work together. Again, Upstream’s approach was well received. In summarising, Atsushi Matsubara noted that the biggest message for him was the importance of involving people affected by dementia and that this approach was something to work towards in Japan. It made me think about how lucky we are in the UK to have a network of groups and individuals who are willing to give their time, energy and insights to helping projects like Upstream.

It’s easy to talk about collaboration and sharing but it truly felt as though Upstream, the Dementia Friendly Japan Initiative, the EcoMo Foundation, Fujitso laboratories and others are using similar language and have similar aspirations – to work towards inclusive design and service improvement to enable people affected by dementia and others who may need assistance to travel with confidence. We parted as new friends, talking right up to the Shinkansen departure gates, wondering how to turn our animated conversations into collaborative action in the future.

IMG_6873.jpgThanks again to Makoto, Atsushi Matsubara and Daisuke Sawada for their enthusiasm, collaboration and warm welcome!

 With thanks to Andy Hyde.

Hello Kyoto! An evening with the Dementia Friendly Japan Initiative

This post is courtesy of Andy Hyde, and was originally published on the Upstream website.  Upstream works with people affected by dementia to improve mobility services. Andy was part of a Scottish delegation to attend the Alzheimer Disease International (ADI) Conference in Kyoto in April/May 2017.

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Visiting the ADI conference gave me opportunities to reach out to see who I could connect while there and was lucky enough to be introduced to Makoto Okada, Director of the Co-Creative Social Ecosystem Project at Fujitsu Laboratories and also a leading figure in the Dementia Friendly Japan Initiative (DFJI).

We discovered a mutual interest in improving transport for people affected by dementia as DFJI has a special interest group focusing on transport. Makoto was kind enough to organise an evening gathering in Kyoto, coinciding with the conference, bringing together a group of around 30 people to learn about work in Scotland and Japan and to exchange ideas. Participants included occupational therapists, GPs and researchers.

Mr. Matsumoto, manager at Kyoto’s Regional Comprehensive Support Centre spoke about “Planning and managing SOS exercises using the bus in Kyoto.” described his work coordinating local transport providers to assist with people affected by dementia who are becoming lost when travelling around the city. By providing a central service that puts calls out to all transport providers, people are found quickly reducing the anxiety of all concerned. The crucial link here is that they have provided information and training to all parties concerned including the police. We saw a short video showing the system in action.

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Pictures from Dementia Friendly japan on facebook 

Luckily, a number of friends of Upstream were also at the conference – Philly Hare from Innovations in Dementia, James and Maureen McKillop along with Elizabeth from Life Changes Trust and so they were all able to join us for the evening too. So, in addition to me sharing what Upstream has been up to, we heard from Philly about other work in the UK, from Elizabeth from a funder’s perspective and importantly from James about his own experiences of travelling with dementia.

This all made for a lively group discussion as we compared experiences and different project approaches. Perhaps one of the most notable points was the extent to which people affected by dementia are getting involved in projects in the UK. The network of peer support groups such as DEEP groups that we have been lucky to work with is a precious resource that is, as yet, isn’t so established in Japan.

Equally, those of us from the UK noted the coordinated approach that Mr Matsumato had taken in training all the parties concerned. This should be a goal for us – engaging with all the unusual suspects as we sometimes call them – the many different players that contribute to travelling well with dementia.

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Championing the rights of people living with dementia – the VERDe project

This blog was first published on the Mental Health Foundation’s website by Dr Antonis Kousoulis, Assistant Director of Development Programmes at the MHF. 

Antonis Kousoulis

In the past ten years, the landscape has changed significantly and the profile of dementia has risen in policy, research and practice. The Prime Minister’s challenge on dementia 2020 gave a further boost to the interest in dementia care across the country.

Certain organisations, including ourselves at the Mental Health Foundation, have also advocated for a more preventative approach to dementia, especially in relation to the inequalities faced by people living with dementia and the significant co-morbidity with mental ill health. A growing focus on the links between public health and dementia is promising in reflecting how dementia is beginning to be seen through lenses that go beyond the traditional medical model. But we are not there yet.

Progress in dementia has stalled for too long because of a substantial but narrow focus on developing new pharmacological treatments, confusion around the understanding of the wider public of the range of conditions involved under the umbrella term, and lack of systematic application of human rights approaches in the relevant practice and research.

Thus, we are still facing considerable challenges in taking dementia into wider policy spheres, which is why a focus on fundamental values, equality principles and human rights is still urgently needed. We have tried to address this gap with the VERDe project.

The Values, Equalities, Rights and Dementia network (VERDe) has connected people with dementia, carers, practitioners, policy makers, services, organisations and communities across the UK. Through a series of events, VERDe has aimed at increasing awareness and understanding about how values, rights and equalities affect people with dementia and can help improve dementia policy and practice.

VERDe

VERDe has enabled productive conversations between experts by background and experts by experience. We have:

  • facilitated the sharing of positive stories of empowerment and hope
  • explored ways to support people in their transitions (e.g. into care homes)
  • recognised that people living with dementia should be treated as persons, not just patients
  • advocated for cross-agency communication and national policies informed by people
  • explained the human rights deficit that exists in dementia and how supported decision-making works.

But our collaboration and network does not stop here. We will keep working with our partners, including Innovations in Dementia and the Dementia Engagement and Empowerment Project to champion the voice of lived experience and help sustain this active community.

Above all, we will strive to remember what one of our dementia activists stated: that people diagnosed with dementia are humans and the people who care for those with dementia are humans too. Therefore, a lot of the issues we want to discuss are, above all, human rights issues. And we know how human rights issues can impact on people’s mental health.

“Taking Local Action”

So, the simplest intervention we can start with is to make sure that the human contact and emotional support for people living with dementia is always there.

VERDe has been coordinated by the Mental Health Foundation, supported by Innovations in Dementia, and funded by the Joseph Rowntree Foundation and the Life Changes Trust (which is funded by the Big Lottery Fund).

Travelling Well with Dementia

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Summer baking at Solas

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

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

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

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

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

The recipe was (we made 17)

Summer Baking at Solas

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

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

They were not even cold before they were all gone!

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Living well with dementia: diagnosis is key

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

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

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

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

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

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Age Scotland’s Early Stage Dementia Team

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

Age Scotland