LGBT and Dementia – Trish O’Hara

There is an estimated 1.2 million Lesbian,  gay,  bisexual transgender (LGBT) older people in the UK, many of which will have dementia with services often failing to meet  the specific needs.

The public sector equality duties require organisations to eliminate discrimination, advance equal opportunity and foster good relationships for all those using services. However so often the opportunity for older people to even ‘mention’ their sexuality is supressed. It is the role of all social care organisations and leaders of services  to raise hidden issues that silently trample on human rights.   It is essential to push boundaries and to enable the people we work with to honestly reflect on their practice.

The subject of sex is too often ignored when thinking of people in their 60’s,  70’s and 80’s plus.  Many practitioners lack the confidence and skills to know how to raise the subject. Whether we were born in the UK or moved here in our lifetime,  we are still terribly ‘British’ when it comes to the subject.

Some people from the LGBT community have already struggled with higher risk of mental ill health, suicidal thoughts, self-harm and substance misuse and a lifetime of waiting for law to catch up with common sense in order for their rights to be upheld.   It was only in 1973 homosexuality was removed as a mental disorder from DSM and 2013 before same sex marriage was recognised in law.

It is estimated that only 53% of people from the LGBT community have ‘come out’ to a health professional – the remainder may include those that feel their lifestyle choices are nobody else’s business,  but it is possible that many may fear discrimination and keep their mouths and closets firmly shut.   How can we ever tailor services to meet the specific needs and preferences of people from the LGBT community, if they do not feel safe to become visible?

For individuals living with dementia memory problems mean that often individuals have to experience ‘coming out’ twice, into services which are often not prepared, willing or skilled enough to support these needs. The vital work in reminiscence can bring a persons’ history to the fore,  often resulting in the person finding themselves as well as others understanding them better.  However what if,  by bringing a person back to a childhood when they were a different gender results in difficult memories?

The rise in HIV in men over 50 continues, with a much later presentation for health care, and a higher mortality rate than their younger counterparts.  Older men reporting that unsafe sex is still common place.  From this we can presume that unsafe sex is as prevalent across all over 50’s and may have an effect on STI’s in the whole community.   It feels necessary to raise this issue as specific health and social care needs arise from this information and not to only associate HIV to the LGBT community, but also to consider safe sex in our older population. More specifically what role do older people services play, or should play in supporting safe sex?

Older people from the LGBT community remain more likely than both heterosexual peers & younger generations and to be single & live alone. They are also less likely to have children, which means they are more likely to have a greater need of formal care & support.  It would also suggest that where a person with children may be less likely to need residential care, and those without may have a greater need and sooner.   So this would mean that out of the estimated figure of 1.2 million of LGBT older people,  many may be living invisibly in our care homes.      In data collected by  CSCI (now CQC) in  2008 only 7% of care homes and  8% of domiciliary care providers reported carrying out specific work around equality for LGBT,  with less than 1% of care homes who had done any specific work around sexual orientation & assessment or care planning.  With no preparedness or any provision to acknowledge LGBT, it seems living in a care home is similar to living in their closet. Clearly much work is needed to advance this practice.

We need more LGBT friendly care homes, or specific care homes that understand what a gender neutral pronoun is. These flag ship services will embrace all people, regardless of their sexual orientation. More broadly much work is needed around older people and sexuality. Challenges faced with being older; ageism, physical and mental frailty pose problems for meeting sexuality and intimacy needs. A basic and fundamental human need for all regardless of age or sexual orientation. This is essentially about coming back to our core social care roots; promoting person centred care, dignity and inclusion.

Good Practice:

  • Include sexuality & gender identity in assessment.
  • Consider marketing strategies: use same sex couple’s photos in marketing.
  • Consider using appropriate language such as gender neutral pronouns.
  • Carry out training in sexuality and older people as standard practice
  • Consider culturally sensitive reminiscence:  Trans gender is different in childhood
  • Appreciate not everyone has conventional model of ‘family’
  • Consider physical building constraints to privacy
  • Put pressure on stakeholders to make LGBT and dementia a research and commissioning priority


Further resources: NATIONAL CARE FORUM, VOLUNTARY ORGANISATIONS DISABILITY GROUP –Dementia Care and LGBT Communities a Good Practice Paper (2016)


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Home Truths to Home Spirit

Last week the Kings Fund and Nuffield Trust produced a report, ‘Home Truths’, demonstrating the impact of the local authority spending cuts over the last six years on social care. The report highlights the combined pressures on services, such as maintaining Fundamental Standards (CQC), working towards achieving the Living Wage, dealing with contract cuts, as well as coping with significant staffing shortages. Cumulatively these pressures have meant that many services have fallen short of demand and for some there have been serious failings. However, for the majority, the shortcomings are visible in delayed discharges from hospital, which has a negative fiscal impact.

The report highlights some of the strategies adopted by services to compensate for these cuts. For example, some providers are relying more heavily on privately funded clients to subside their local authority contracts. Some are actively identifying options for support in the wider communities and using volunteers to bolster their service.

The report warns that the social care sector will not cope against the continued planned cuts and additional sector pressures, and recommends three possible options to address the dismal outlook:


  • achieving more with less
  • a different offer
  • long term reform


Whilst the latter two can be debated over the longer term by politicians and senior social care figures alike, providers need to be getting on with the ‘what can we achieve for less’ more imminently. There is an urgent and critical need to think outside the box about how we can do things differently.

As part of the ongoing strategic review many services have been actively reviewing their resource input against their outputs and outcomes in an attempt to get more for less. Good business strategists understand that the skill lies in leveraging resources effectively to create a comfortable operating profit. This isn’t always about cutting back but rather doing things differently. Training is one example of a resource that can be manipulated for different outcomes. There has been a growing reluctance to spend on training, with more services opting instead to develop independent capabilities or deliver E learning in the hope that this widens the profit margin. However, in reality some of these ‘cutting corner’ decisions can impact on quality, leaving services ill prepared to ‘fire fight’ issues such as safeguarding incidences, health and safety concerns, complaints and/or poor service outcomes. Many of these matters often rear their ugly head at a time when services are logistically challenged, forcing the focus on resources toward just covering the job instead of on maintaining and improving outcomes.

On a more strategic level, within our local area some excellent joined up thinking has been going on. Integrated projects have developed, which have been supported by the pooling of NHS funding  (Better Care Fund), aiming  for smarter working through integrated practice. Our organisation has been involved in one of these projects, working with care homes to reduce hospital admissions. Hospitals are very disabling places for people living with dementia, and poor outcomes are typically observed; economic and individual. Clearly there is a lot of work to be done to upskill staff to ensure that there is a timelier reporting of health concerns through better quality observations, and ensuring that preventative measures are put in place to avoid unnecessary admissions.

One of the areas that has seen the largest cut in funding is community based services, such as support at home (homecare). Spending is down a whopping 30% despite policy objectives to support more people in the community. This is a significant cut in comparison to residential and nursing services which were only cut by 4 – 6%. Home care services now are delivering more hours for less money.  So what solutions are there available for our home care services?

This key question has been the driving force behind the development of Home Spirit, a platform developed for home care providers. The platform equips services with the tools to literally think differently, be proactive and add value to their service.


The portal consists of a number of tools. The person centred planning tool has several potential domains which are selected by the client, and are based on their specific identified outcomes. It is easy to use and prints and uploads reports, making sharing easy. It avoids duplication, or having to write anything out so saves time. It can be completed on mobile while at the client’s home, and, with an easy to use navigation system, it has sensory appeal. The tool helps agencies to reduce operational costs in assessment and reporting. It can highlight risks easily, both those that are determined by the individual as well as the care agency. The report can be produced in a shorter version (similar to a one page profile) which informs busy workers in a simple snapshot HOW to provide the support. At £19 per month for as many reports as required, it is also excellent value.

The environment audit is intended to be a proactive tool. It may reduce hospital admission and risk of falls through environment assessment. It can be used by families and individuals to identify potential assistive technologies (a requirement of the NICE Home Care guidelines 2015), which include health monitoring options, safety and activity monitors, and leisure and communication technologies. These technologies now have a much wider scope and can promote human connection and tackle loneliness. Loneliness has been linked to poor health outcomes, leading to additional financial burdens on community and NHS services. Tackling loneliness through supported use of assisted technologies is only one of the many benefits that can be introduced by the tool.  The environment audit tool also makes simple recommendations for environmental adaptation to improve independence. The environment tool will also make recommendations around how an environment can be adapted around a specific task for a person with dementia, and therefore informs and educates, offering a tailored support plan.

The ‘still my life’ post diagnostic tool is completely FREE to access and helps families to plan together to take proactive steps to manage the condition; this aims to reduce anxiety. One of the first questions asks the person to consider the difficulties they face and what actions they plan to put in place to mediate these challenges. The design of the tool aims to encourage people to rehearse their own strategies, helping them recall them with more proficiency, as well as have very clear goals on how to compensate for their difficulties. Another question prompts the person to consider aspects of life that they appreciate and value (positive psychology), this can have a direct therapeutic value. One of the questions guides individuals to complete appropriate legal planning. Local authority resources spent making ‘best interest’ decisions could be avoided by documenting decisions in a timelier manner. The planning tool provides accessible guidance on how these measures can be put into place. The tool also asks individuals to consider early interventions for nutrition and sleep. As 72% of people living with dementia are also living with another condition (co-morbidity), early strategies to support sleep and nutrition can have a positive effect, reducing risks of delirium and inappropriate admissions to hospital. The post diagnostic planning tool can be easily downloaded and completed on paper. This additional tool is potentially an asset to home care providers, as providing access to this resource as part of your service shows that you provide added value. Perhaps more importantly a tool like this provides hope, and motivates families and individuals to think proactively.

The circle of support tool helps to identify communities of support to build upon existing community networks and engender a sense of belonging and affiliation to the wider community.

The learning resources (infographics) available through the portal support staff, through bite-size learning, to observe better, develop better relationships, and improve reporting.  The flexible resource reduces the need for staff to be removed for training at critical pressure times. Community services are now working with higher levels of need and the skills sets required are reflective of this. Appropriate investments need to be made in knowledge management. The resources available on this portal are specifically designed to work well in busy environments.

Therefore, while services are scratching their heads considering their next move to survive this hostile environment, we have been actively developing a solution. The benefits of the Home Spirit tool are potentially far reaching and offer a legitimate opportunity to services to do things differently and to achieve more for less.

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Inspired by Chris and Jayne – Positive Psychology in Dementia Care

Positive Psychology in Dementia Care
Positive Psychology in Dementia Care


After an uplifting few days at Alzheimers Europe it has left me in a reflective mood. After a few very inspirational speeches, the message loud and clear, the importance of human rights. A fundamental aspect to human rights: to be valued and included in society. Yet despite recent policy initiatives we still have a long way to go: our dementia services are stretched to the limit and cuts in funding, coupled with, staggeringly high rates of job vacancies in home care leave services at critical levels. The conversation surrounding dementia is often negative, dismal, and without hope. Conversations often peppered with the notion of ‘burden’. Through the media spectacles we see this impending threat staring us in the face, uttering some threat to our very humanity, and presenting only that promise of a magic cure is imminent. This perspective has impacts upon individuals together with our communities. On an individual level, it’s harder to adapt, develop coping strategies and build resilience where, on a community level, there are missed opportunities to share skills, talents and to learn from one another’s experiences. It is from this place human rights emerge. The stigma associated with dementia can create toxic environments, where exclusion is the norm and loneliness a very real possibility.

However, what if we were to take a different view of dementia? What does dementia bring to individuals and communities? How can we reframe ‘loss’ as an opportunity? What can we learn about the positive power of vulnerability? Do diminishing cognitive skills lead to not being ruled by reason, but instead the heart, and if so what benefits might that bring? What of living in the moment, and what insights and opportunities does this bring? What personal resources are available to individuals to challenge the standard paradigm in dementia? Some of the negative connotations associated with dementia stifle opportunities. What if we had a more inclusive society, and how might that facilitate opportunities in individuals to develop personal resources and capacities?
Aristole believed there was a unique daimon, or spirit within everyone which acts as a guide. Many religions talk of the power within to change, such as the power and importance of forgiveness. That by letting go of anger, we make things right within ourselves. Similarly, religions talk of the importance of gratitude; ‘counting your blessings’. When we express our gratitude to someone, we strengthen our relationship with them, as well as elicit positive emotions within ourselves. So, whilst these ideas have been around for many years, they are not universally adopted or applied. However, this is changing as ‘positive psychology’ is adopted and researched within our scientific communities. Backed by scientific evidence and embodied in what is known as ‘positive psychology’ (Martin Seligman). Although ‘positive psychology’ was introduced by Martin Seligman it was influenced by many great thinkers before him. Positive psychology is a branch of psychology which focuses on the capacities within individuals to flourish. Positive psychology is more than the study of happiness, but instead recognises that purpose and meaning are all as equally important. However, it’s application in dementia care is relatively new.
Since policy has stimulated timely diagnosis, more people are being diagnosed at the earlier stages of their condition where they can draw upon cognitive resources to sense make, take control and to develop coping strategies. With a timely diagnosis, more opportunities are available to individuals living with dementia for treatments, including ‘positive psychology’. Potentially offering a low cost intervention free from side effects. Positive psychology may also have further impact on physical health, as most people living with dementia are also living with another physical condition. Positive psychology may impact upon our immune system, and health.
One of the main areas of emerging research is looking at how much positive psychology can offer resilience. Resilience is having the ability to adapt in the face of adversity. How much does hope and optimism, impact on one’s ability to develop resilience? Having hope enables us to have goals, and without goals what is there? In the context of dementia this may not be a hope for a cure but rather a hope for a society that values and accepts people with dementia.
Growing older is a constant state of change, and adaptation within the world around us. Many positive changes happen psychologically as we age. As a person ages, we learn to regulate our emotions better, and we tend to reduce our social networks concentrating on those that are likely to provide positive emotions. We may become less concerned with material gain and more concerned with giving to others. This may be because as we age we see time narrowing (Socioemotional Selectivity Theory – Laura Carstensen). This is a natural growth, as we age. However what emotional growth comes from having a diagnosis of dementia? How does it change a person? Is there a natural reappraisal of goals? and how can, and does that work within the individual to develop personal resources, and resilience?

Should we then ask not how do you COPE with dementia, but rather how do you flourish? At the recent conference, I had the pleasure of spending time with Jayne Goodrick, wife to Chris Roberts, both activists in dementia rights, campaigning to challenge the current model in dementia. Jayne shared with me at the conference ‘since his diagnosis I SEE him like I have never SEEN him before, I have always known that I loved him but I never really saw how intelligent and strong he is, until he got his diagnosis of dementia.’ This highlights that for some dementia can bring fresh perspectives a new purpose, and a renewed life role.

However, this is not the case for everyone, and for many the words ‘living well with dementia’ can illicit anger and frustration and society’s lack of ability to connect with the true experience of dementia. Individuals differ, but how much of this is fixed? How much can we influence the physical and social environments around a person living with dementia to nurture the process of adaptation in a positive way? For example, what role does positive relationships play in building resilience? How do we support a person’s self-identity, and how might this impact upon their sense of self? How might positive psychology play a role in strengthening and supporting informal carer relationships?

Over the years training in dementia care I have had to deconstruct this notion of ‘bio-psycho-social’ approach to a more accessible language. Accessible so that front line staff can grasp, and commit to this notion of the experience of ‘dementia’ as a complex one: not only effected by medical factors but also by a powerful social environment. The way we make people feel, impacts on their ability to develop personal resources. The social care mandate is to empower and facilitate change in the individual, achieved by nurturing self-esteem and creating opportunities for autonomy and self-determination. Yet in older people’s services the task-based care driven culture would have us believe that our role is one of ‘maintenance’. However, our role is not the ‘maintain’ the status quo but to actively ‘rehabilitate’ and improve the lives we support. Therefore, positive psychology in dementia offers the social care workforce ‘tools’ for its toolbox to nurture the relationship with positive outcomes.

Seligman, M.E.P. (2011) Flourish: A new understanding of happiness and well-being – and how to achieve them. London: Nicholas Brealey Publishing.
Boniwell, I. (2012) Positive psychology in a nutshell: The science of happiness. 3rd edn. Maidenhead, Berkshire: Open University Press.
Clarke, C. and Wolverson, E. (eds.) (2016) Positive psychology approaches to dementia. United Kingdom: Jessica Kingsley Publishers
Schaie, W.K., Carstensen, L.L. and Schaie, K. (2006) Social structures, aging, and self-regulation in the elderly. New York: Springer Publishing Co
Bartlett, R., O’Connor, D. and Mann, J. (2010) Broadening the dementia debate: Towards social citizenship. Portland, OR: Policy Press.
Wolverson, E., Clarke, C. and Moniz-Cook, E. (2015) ‘Living positively with dementia: A systematic review and synthesis of the qualitative literature’, Aging & mental health., 20(7), pp. 676–99.

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What Makes an Effective Dementia Care Trainer?

Since the first Dementia UK report in 2007 on the economic impact of dementia there has been a slow, but more recently accelerated, awakening on the potential impact of dementia on our communities, with some liking it to the threat of global warning. As a result, there has been increasing investment in research. With this has come a growing evidence base for the application of non-pharmacological treatments, accelerating opportunities to improve practice and individual outcomes. However, bringing this new research, ideas and practices to front line staff has been a slow burning process. Although I am pleased to say that many of our clients have moved beyond the realms of ‘dementia awareness’ as the only training staff get.

Very early in my career as a social worker I was thrust into the depths of dementia diagnosis. Newly qualified, I was eager, motivated and interested to learn, to forge my sense of professional identity. I quickly got a job in Islington with a team known at the time as ‘Mental Health Care of Older People’.  Based in the hospital, and led by a confident and dynamic psychiatrist, I sat amongst a very diverse (multi-disciplinary) group of professionals. What I learnt very quickly is that dementia is a fascinating and complex condition that requires a multiple perspective in order to truly get it’s measure. I couldn’t help feeling, though, that in this group I struggled to find an identity, to understand my professional worth; and truly the worth of the social model. I felt at the time (about 20 years ago!) there was a strong leaning towards medical interventions, some effective, and some fraught with difficulty and undesirable side effects. At this time there was a limited evidence base for non-pharmacological treatments, so many looked to medical treatments.

My occupational training in Islington compelled me to learn more, so I began personally to pursue the possibilities for good dementia support. For the first few years I read widely; I’m ashamed to say in the last 20 years I have never once picked up a novel. I am fascinated instead by the challenges and opportunities available in good dementia support; things like, the way the condition and the battle against it humanise us, connect us, and teach us the importance of meaningful connection. It also reminds us of the dangers of disconnection, demonstrates to us that there are strong correlations between our mental wellbeing and our physical health. The interplay between neurological challenges and the social world has always fascinated me, and the creative ways we can communicate and connect. After grappling with the topic for a number of years I soon started training in dementia care, and was soon asked to author a training manual for the first ever dementia care knowledge sets. By this time, I had a much firmer idea of my professional identity, and the role and power of the bio-psycho-social model of support that had challenged me in my earlier years.

For a while my learning went down a rather formal route; I studied at Bradford, which was a great way to benchmark my ideas and my work. However, I learn most from ordinary experiences, feedback from my training groups, and what I see in my own limited direct practice experience. There is a growing collective consciousness of the experience of dementia, led by many people living with dementia like the brilliant Tommy Dunne @TommyTommytee18, and Chris Roberts @mason4233. This has added another dimension to what we believe the possibilities are. This is tacking stigma and showcasing HOPE. Whilst learning about the lived experience of dementia is critical, dementia does not happen in a vacuum, it touches lives and services in so many ways. Therefore, to be a good dementia care educator we must widen our radar. It’s important to learn from all of those people, not just the academics or people living with dementia, but also family carers, front line support staff and other trainers who are often the catalyst for change. Teaching and training in dementia care and support opens you to all that and good trainers will use those opportunities to refine and enhance their message.

Having a good grounding in your subject, the practical underpinned with the theoretical, is a good start but you now have to convey the message in an effective manner and target the training appropriately. All organisations differ and individual group skills levels differ. A good dementia care trainer will ask not ‘these are the courses I can offer’, but will instead say ‘let’s have a look at what is happening in your organisation and see how we can work together to fill the gaps’. It’s about working together, combining skills, and celebrating successes.

Regulation is important in our society, and organisations like CQC work hard to ensure that staff are appropriately trained. However, their legacy has left a box-ticking approach to mandatory training. CQC make clear in their standards now that prescriptive mandatory training is no longer a requirement but rather staff should receive the training appropriate to their role. Despite this, many organisations lack the ability to audit skills and plan training based on need. Done incorrectly it can become a very expensive business. Troubled with poor staff retention, and persistent cuts, our sector needs targeted and fit-for-purpose training.

So the challenge is developing a course that will have an impact. In my years doing this I feel I have developed a recipe.

  1. Knowing the sector and wider policy drivers is important, and understanding relevant occupational standards to scoping a course that is properly benchmarked.
  2. Ensuring that your content is evidence-based ensures that the course is credible.
  3. Knowing how to share human experience in a powerful way that people relate to; often this means bringing in experts by experience.
  4. Understanding how to weave the key underpinning factors in social care: human rights, communication and recording, safeguarding, dignity, positive risk taking and safety. Person centred planning is critical in getting transition from classroom to practice.
  5. Developing good accessible learning resources. Despite the commercial sensitivity I think it’s always good to share.
  6. Develop content that encourages collaborative, integrative work with health. Giving people the opportunity to contrast medical and social interventions in scenarios helps us to identify which is appropriate, and to value each intervention. Sometimes medical interventions are required so that social interventions are made possible and vice versa.
  7. Providing practical tools that help to bridge the gap between research and practice.
  8. Using case studies that reflect the diverse society in which we live and ask the right questions to push boundaries.
  9. Using the right language. Inappropriate language gives poor messages. For example, ‘wandering’, ‘challenging behaviour’, ‘suffering with dementia’.
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Art, Dementia. Communication, Connection and the Community

The umbrella term of ‘the arts’ comprises of a wide range of activities and outcomes, and art may be interpreted differently by people. Art may be passive or participatory. For example, passive forms of art may include listening to music, or looking at, and appreciating, a piece of art. Participatory forms of art can include visual based arts, theatre, music, dance, poetry and time slips. Time slips are a form of storytelling art, in which the person literally imagines the story. The aim is to alleviate the pressure of remembering a story, enabling a person to use their imagination. Different versions of time slips have developed over time. At Alzheimer’s Europe 2015, I heard about a project in Switzerland that used time slips to ‘awaken the story within’; during this project people living with dementia were given an image and asked to tell the story, or rather to ‘awaken the story within’ – a delightful, imaginative and accessible project, enjoyed by many. Time slips, like other tangible art activities have a legacy, as they can be enjoyed by others within the community, providing a lasting sense of collaboration, integration and interconnection within communities, as we move from individual support planning to true citizenship for individuals living with dementia with our society.

Visual based arts may be used therapeutically for people with dementia, but the term ‘Art Therapy’ could be off-putting; some may not consider themselves good at art; others may comment that they don’t need therapy. Therefore, recognising, and supporting, personal expectations and objectives is key to the success of any art group. Individuals may join art groups for various reasons; to make friends; to develop new skills; perhaps in pursuit of the satisfaction of producing a piece of art. The self-perceived outcomes will influence individual benefits gained from the sessions.
There is potential for art groups to deliver benefits across several domains; to alleviate some of the symptoms caused by dementia (medical); to provide people an opportunity to meaningfully participate (human rights); to provide the opportunity to develop new relationships (social); and to work collaboratively in communities, developing and contributing to community artwork (arts).

Art appreciation encompasses emotional and visual skills, most of which are preserved, to a degree, in people with dementia. At later stages in some types of dementia such as PCA, a variant of AD, the individual with dementia can experience some difficulties with visual spatial function. However, in the world of art some of these difficulties can be attributes, as abstract pieces can be highly regarded, both individually and collectively. Disordered and distinctive art can be appealing to many.

As the dementia progresses an individual may lose certain skills; for example, memory, language, judgement and planning. What art activities seeks to do is overcome these difficulties by utilising the preserved capacities of the person. Preserved motor and sensory skills enables a person to engage with art, and for many, art can become a powerful form of expression where language skills are lost.

Some of the more abstract pieces of art could be expression of the person’s tethering from the concrete world, which may be illustrated within William Utermohlen’s series of drawings over the period of his progressive disease. In his works can be seen visual representation of the organic challenges the brain encounters; difficulties with memory, recognition and distinction of colours and recognition of faces, or the experience of having a symmetrical view, possibly caused by visual field loss. There is also evidence that relational shapes and sizes are disordered as perceptions becomes more obscure, and where there is a loss of definition related to depth perception and colour contrast; there is a distortion in spatial awareness and a flattening of perspective. As the pieces here progress we see there may also have been a loss in motor skills, evidenced in the brush stroke and depth of application.

When I first glanced at these drawings, however, it was not the organic challenges that struck me, nor did I dwell unnecessarily on the difference between the reality and the abstract as evidence of cognitive decline; I felt an emotional connection to this man’s experience through the lens of dementia, his experiences communicated through metaphor and colour. To me the work of art had become a very powerful means by which William Utermohlen communicated his inner feelings and subjective experience, and a means through which one hopes he achieved some sense of release or relief. In his pictures I see a slow, evolving disconnection with a sense of self, an erosion of sense of identity, linked possibly to a loss of life role or sense of autonomy. I see a struggle to connect meaningfully with the environment, and to maintain an ‘attachment’ to the world, and to one’s own identity within. In the middle pictures I see a fluctuating sense of being, between an inner and outer world. The pictures highlight to me how important it is to foster meaningful connections, to create a physical and social environment which supports, reaffirms and reminds the person of who they are.

Often, when a person with dementia experiences a strong feeling, such as anger, frustration and/or embarrassment, complex cognitive skills are required to work through and resolve those emotions. For example, if a person loses their keys, which may lead to feelings of frustration and anger, one way to resolve this might be to draw upon memory, or language skills. If, as a result of damage to the brain these skills are not available, then the person may be left with negative and strong emotions. One way of externalising strong emotions may be to tell someone, however difficulties with language may hinder this, and instead the communication may be achieved physically or aggressively; this may then be unhelpfully labelled ‘challenging behaviour’, and in some cases may lead to exclusion or the inappropriate use of sedative drugs. Visual based arts may, in part, prevent inappropriate interventions by offering an alternative means of expressing these emotions that others can comprehend more deeply, and with which others can engage. Art need not be a detailed replication of what the eye can actually see, but can be abstract and symbolic, highlighting deeper meaning or altered perspective.

The aim of my training work is get people to recognise the emotional struggle experienced by some people living with dementia. In doing so, we can aim to identify the right interventions that create a safe space in which to support a person to remember who they are, to feel again connected, and to retain a sense of ‘attachment’. Art activities not only provide a mechanism for expressing one’s emotion, but also provide a platform for community engagement and citizenship, for giving and doing together. In art activities there is a potential for a sense of achievement, ownership, belonging and connection to a community.

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Sleep and Dementia

Many individuals may struggle with sleep at various points in their lives and impaired sleep may impact upon quality of life. Less understood is the long-term impact of prolonged sleep deprivation. Sleep serves a restorative function in the brain, and has a critical role in our ability to process information and think clearly. However, could there be potentially more harmful and longer-term impacts of sleep deprivation? Alzheimer’s Disease International (ADI) published a report last year on potential modifiable risk factors relating to the onset of dementia; the report suggested decreased sleep may be a potential risk factor for cognitive decline, but indicated in the summary that these studies were limited and had a short follow time (WHO Dementia and Risk Reduction 2014). More generally, lack of sleep has been associated with poorer cognitive performance (Tworoger SS et al 2006) and increased rates of mortality (Gallicchio & Kalesan 2008).


Evidence suggests that there may be a number of complex neural processes at play which impact on the long term function of the brain. One theory suggests that lack of sleep may increase the risk of amyloid plaque formation (Holtzman et al 2013), which is part of the pathology of Alzheimer’s disease. Another study found that daytime sleepiness may be correlated with the onset of vascular dementia (Elwood et al 2011). Research in this area suggests that where causal relationships can be determined interventions may be possible to aid and encourage sleep, in order to delay the possible onset of dementia. Despite these individual research papers, the jury is still out on a definitive correlation between lack of sleep and the onset of dementia.

Whilst the research on the long term impact of poor quality sleep is interesting, the priority of services is the daily management of sleep difficulties, particularly for people with a level of cognitive decline or dementia, where sleep difficulties exasperate their difficulties. Where there are cognitive demands, lack of sleep only adds to the disorientation. Therefore, sleep can impact significantly on quality of life, can increase emotional distress, and can in some cases lead to transition to residential care (Pollak et al 1990). For many services working with people with dementia who experience sleep difficulties, it has become an expensive problem, often requiring higher levels of staffing during the night, or staff manpower to review increasing incidences of emotional distress and challenging behaviour during the day.


There are a number of different sleep disorders, and, whilst the prevalence of these disorders remains unclear, there has been some correlations between the type of disorder and the type of dementia (figure 1). One study showed that up to 70% – 80% of residents that live in a long-term facility experience sleep apnoea (Ancoli-Israel S 2006). Sleep apnoea is a sleep disorder which is characterised by disrupted breathing. There are other forms of sleep disorders experienced by people living with dementia, such as Restless Legs Syndrome, REM Behaviour Disorder and Periodic Limb Movement Disorder.


Figure 1 (Clin Geriatr Med. 2008 Feb; 24(1): 39–vi.)


Sleep disorders
Alzheimer’s disease Sleep Disordered Breathing
Dementia with Lewy Bodies Restless Legs Syndrome
REM behaviour disorder: this is part of diagnostic criteria – a suggestive feature – can occur years prior to onset.
Periodic Limb Movement Disorder
Parkinson’s disease with dementia Restless Legs Syndrome
REM Behaviour Disorder
Periodic Limb Movement Disorder
Sleep Disordered Breathing
Vascular dementia Sleep Disordered Breathing


Restless Legs Syndrome is where an individual experiences discomfort in their legs, relieved by moving them; it may cause difficulties in falling asleep.

Periodic Limb Movement Disorder is when a person’s arms and legs move about during sleep. Often movements are repetitive and can be every 20 to 40 seconds, so can significantly disrupt sleep for the individual and family carer.

REM Behaviour Disorder is a condition in which individuals physically act out dreams during REM sleep, particularly in the second half of the night (Boeve BF 2004). This occurs because the normal mechanism for paralysis during sleep is disrupted. This can be dangerous and frightening for the individual with dementia, as well as a significant safety concern for families. It can lead to injuries at night. REM Behaviour Disorder can occur years prior to the onset of Lewy Body Dementia.

Sleep apnoea is part of a group of difficulties called Sleep Disordered Breathing. It is where your breathing is disrupted, with one or more pauses of breathing.

A common challenge for services is ‘Sundowning’.  Sundowning may be caused by states being between sleep and wakefulness, possibly caused by sleep deprivation (Klaffke & Staedt 2006). The person may become agitated and disorientated. Presenting changes in behaviour may also be as a consequence of changing light levels, which triggers a reaction to the environmental clues. For example, a change in light levels may indicate to a person that it is time to finish work and return home; the person may then become agitated, particularly when they find it difficult to return home. When considering interventions to minimise agitation, this should always be done in the context of the person’s reality.

If the environment is too hot or too cold; too light or too dark; if the environment is unfamiliar (potentially as a consequence of transitions in care, or as a consequence of memory problems), this can be distressing, and cause significant anxiety impacting on a person’s ability to fall asleep. Night time may also be a lonely experience for many people with dementia.

Some of the main interventions to treat sleep disorders are pharmacological. However, side effects of medications can exasperate cognitive difficulties and increase the risk of adverse outcomes such as falls (Aviden et al 2005). There has been some research linking the use of benzodiazepine to an increased risk of Alzheimer’s disease (Sophie Billioti de Gage et al 2014). Commonly used medications like Donezepil can stimulate the cholinergic nervous system increasing the risk of disturbed dreams (Kitabayashi 2006).  Medication prescribed for a number of co-morbid conditions can also interfere with sleep.


There are a number of other factors which may impact on the quality of sleep: pain, depression, anxiety, diabetes, depression, arthritis and renal failure. A medical review of co-morbid conditions may help to address some concerns. 72% of people living with dementia also live with another condition.


Research carried out in a community setting in New Zealand (Gibson, Gander and Jones 2014) found that there were 3 main areas for developing coping strategies: 1) strategies related to the sleeping environment 2) safety issues surrounding sleep and night time waking 3) techniques to relax at night and stay awake during the day. Services could benefit from distinguishing these categories as a useful framework for possible interventions.


Another area of interest in the treatment and support of sleep disorders is the use of ‘bright light therapy’. The mechanism that controls the wake-night cycle is called the circadian rhythm; the daily light–dark cycle is the primary synchronizer responsible for supporting the circadian rhythms to the 24-hour day. Light helps to maintain the circadian rhythm and can be introduced artificially to help reset those rhythms. Bright light therapy has been well researched in the area of dementia care and sleep. One study found favourable results when combined with the use of melatonin (Dowling et al 2007). Melatonin decreases when a person develops Alzheimer’s disease (Liu RY et al 1999). Simple environmental changes can be also be made to ensure that an individual has more access to light during the day; ensuring that there is adequate outdoor space, ensuring that curtains are pulled back during the day and the light fittings are the appropriate strength. Other simple mechanisms include relaxation therapy or having a quiet time before bed. Exercise has also been found to improve sleep (Baehr 2003) and could be potentially used as an effective treatment. A vast range of assistive technologies which enhance safety at night are now widely available.


Support services need to have in place a holistic management plan to respond to sleep disorders; a strategy to not only ensure improvements in quality of life, but also reduce the costs of responding to behavioural disturbances.



Things that you can do:


Environmental adaptations, such as noise and light levels

Assistive technologies which help with safety at night

Bright light therapy

Melatonin supplements

Increased activity in the day


Sleep hygiene

Avoiding caffeine and alcohol

Pain management

Review of life history

Environmental adaptations to support orientation

Provide night time activities programme




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Polypharmacy and Dementia

As health and social care trainers we straddle the medical and social model, and believe whole heartedly, holistic, and integrated practice is required to enable positive outcomes, and well-being within our communities. Within each realm of medical and social perspective, many factors which may be viewed in isolation maybe interdependently linked: manipulating one factor, may impact upon others. We need to take a balanced approach, informed by consent, and at times, pharmacological strategies are warranted, and at others times we should consider non-pharmacological approaches.
It is our responsibility, within training sessions, to encourage staff to reflect upon their clients and the complex nature of the conditions, to equip them with skills to observe, report and signpost. One subject raised within sessions is polypharmacy. Many of the services we train are commonly working with comorbidity, and complexities around fluctuating sates, often resulting in competing care and treatment strategies. To support discussions relating to polypharmacy, we developed some resources with the aim to get people to think and reflect more broadly about the topic.

Inappropriate polypharmacy is a very real and present threat, as many prescribing practitioners face tensions between treating common conditions and the risks associated with polypharmacy.

Many people with dementia, together with older population are affected by polypharmacy. Older people generally will have multiple health conditions which require medication. However, given the potential communication difficulties presented with dementia, particularly around problematic pain management, it is possible that there is a higher prevalence of polypharmacy in this group.
There is no clear definition for Polypharmacy: Sometimes numerical: for example greater than 6. Accepting a numerical definition of polypharmacy has the disadvantage: does not recognise that in some cases the combination use of certain medications is beneficial to the older person. Inappropriate polypharmacy is when the person takes more drugs than are clinically indicated.
Polypharmacy is a concern in this group because there are age-related physiological changes that alter the ways in which drugs are handled by the body. This may include:

• Reduced renal function
• Reduced liver function
• Reduced ratio of body fat to water
• Delayed stomach emptying

There are substantial risks of polypharmacy: for example, there may be severe side effects, some of which further compound cognitive challenges. There may also be drug-drug interactions and drug-disease interactions. The impact can be far reaching; Side effects may cause drowsiness leading to an increased risk of falls. There may be impacts on appetite and poor nutrition leading to multiple problems, not least a compromised immune system. Further than a physiological level, for example certain medications may impact on changes to sexual drive, impacting on identity and ultimately self-esteem. Changes in mood caused by the medication, coupled with cognitive difficulties may lead to emotional distress and challenging communication. In some instances the inappropriate use of medication can create the very problem that it is trying to solve.

There are many possible causes of inappropriate polypharmacy:
• Multiple physicians
• Self-medicating
• Over the counter medicines including herbal preparations
• Medicine dependent culture
• Medication administration errors
• Treating medication side effects with other medications: e.g. a medication may cause constipation, may then be prescribed a laxative. Alternatively maybe appropriate to consider non drug approach: diet.

When the side effects of medication are misdiagnosed as symptoms of another condition. Further medication is prescribed (Cascade prescribing), further side effects and unanticipated drug interactions may present. Older people with dementia who take a cholinesterase inhibitor and who experience urinary incontinence are more likely to receive an anticholinergic medicine to manage their symptoms
Drugs including some antidepressants, muscle relaxants, antispasmodics, and antihistamines may have anticholinergic effects and, therefore, may cause confusion, blurred vision, dry mouth, light-headedness, constipation, and difficulty with urination and/or loss of bladder control causing additional difficulties for a PWD.

Some examples from research:

In a prospective cohort study of 294 older people 22% percent of patients taking 5 or less medications were found to have impaired cognition as opposed to 33% of patients taking 6-9 medications and 54% in patients taking 10 or more medications.
Also in this paper: Polypharmacy affected patient’s nutritional status. A prospective cohort study found that 50% of those taking 10 or more medications were found to be malnourished or at risk of malnourishment
Jyrkka J, Enlund H, Lavikainen P, et al. Association of polypharmacy with nutritional status, functional ability and cognitive capacity over a three-year period in an elderly population. Pharmacoepidemiol Drug Saf. 2010;20:514–522. [PubMed]
A study in elderly patients with dementia reported that those patients who reported a fall had an increased prevalence of polypharmacy
Lee CY, Chen LK, Lo YK, et al. Urinary incontinence: an under-recognized risk factor for falls among elderly dementia patients. Neurourol Urodyn. 2011;30:1286–90. [PubMed]
American study
Two-thirds of hospitalisations for adverse events involved four medicines or classes — warfarin, insulins, oral antiplatelet agents or oral hypoglycaemic agents — taken alone or in combination
Budnitz DS, Lovegrove MC, Shehab N, et al. Emergency hospitalizations for adverse drug events in older Americans. N Engl J Med 2011;365:2002–12. [PubMed]

All Party Parliamentary Group on Dementia (2008) Always a last resort: inquiry into the prescription of antipsychotic drugs to people with dementia living in care homes. Alzheimer’s Society. London.
Kleijer BC, van Marum RJ, Egberts AC, Jansen PA, Knol W, Heerdink ER. (2009). Risk of cerebrovascular events in elderly users of antipsychotics. J Psychopharmacol. Nov;23(8):909-14. Epub 2008 Jul 17.
NHS Information Centre (2012) National Dementia and Antipsychotic Prescribing Audit.
Gill SS, Mamdani M, Naglie G, et al. A prescribing cascade involving cholinesterase inhibitors and anticholinergic drugs. Archives of internal medicine 2005;165:808–13. [PubMed]

Helen Behrens and Caroline Bartle

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Deprivation of Liberty – Are we spending public monies wisely?

Deprivation of Liberty – Are we spending public monies wisely?    Trish O’Hara April 2015

I for one, am fully aware of the necessity of adhering to Article 5 of the ECHR and delighted that Lady Hale pointed out that however golden the cage, it is still a cage.
But, the new threshold following the Cheshire West ruling :-
Continuous supervision and
Lacking capacity to consent to remaining
And how it falls within the Human Rights legislation:
The objective element: i.e. that the person is confined to a particular restricted place for a non-negligible period of time;

The subjective element, i.e. that the person does not consent (or cannot, because they do not have the capacity to do so) to that confinement;

State imputability: i.e. that the deprivation of liberty can be said to be one for which the State is responsible.

seems to have created an unprecedented amount of paperwork for those who, perhaps, need to be focused on emergency situations in hospital.

I am fully behind the new ruling for those living in residential care homes, nursing homes and hospices but am not sure this is money well spent on those in Intensive Care Units and in transportation from one hospital to another. It seems to me that those completing the assessments – such as Section 12 doctors and Best Interest Assessors are in the lucrative situation of charging £250 or so to assess people who are sick in hospital for a week or so. The nursing staff having to make applications, to spend time with the assessors – all of which is time away from using their expertise in keeping the person alive. I am aware that on many occasions, assessors have gone out to complete an assessment and the person has either gained capacity or indeed died or been discharged. I expect the assessors are still paid for their time and yet more public money is swallowed by this over-zealous interpretation of the ruling.

Of course, when a patient is resisting treatment and needing restraint, there needs to be protocols in place to ensure it is to maintain the life of the person, but can this not be regulated within ordinary hospital procedures?

Public monies are a dwindling resource as services face further cuts. Surely, there needs to be a common sense approach to deprivation and when it is necessary to authorise it.

I understand that new guidance is due to be published in 2017 which I hope recognises the paper driven exercise that often seems both pointless and expensive.

Yes, all patients should be informed and asked to sign consent for a time when they may not have capacity, following an operation and yes the MCA is a wonderful piece of law that protects the rights of all of us. But, the idea that a person who has suffered perhaps a head injury in a road accident  and needs to take an ambulance for numerous hours to a specialist hospital needs a DOLs seems to me to be wasting peoples time and money.

I am not sure there is enough emphasis yet on getting this right where it needs more attention, time and money spent.

Are there enough home care providers who are involved in supporting a deprivation in a persons own home, not registered, trained in understanding liberty?

Do families understand that deprivation of liberty may be seen as false imprisonment?

Do enough care homes understand the right for people with capacity to make unwise decisions?

Do enough supported living services realise that they may need to apply to the court of protection if they are depriving a person of their liberty?

Surely, these are the areas of real concern. And where assessment and monitoring is most needed.

I await 2017 publication with much anticipation.


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‘Oiling the Cogs of the Brain’

Last year the Care Act became law signifying the government’s intention to overhaul the care system. With an ageing population, our dementia care costs are a staggering £23 billion pounds per year. The Care Act aims to do things smarter and is underpinned by some driving political ideologies; society cohesion and the power of prevention. Both of these ideologies align with the trends that we are seeing in research and practice in dementia care. For example:  over the last few years, there has a shift from searching for a cure by researching dementia in the later stages to some focus on prevention over a ‘life course view’ , exploring risk factors to determine the nature, and cause of onset. The Care Act echoes this from crisis management to prevention, however in this context it is far more about preventative measures in the social environment; the powerful application of psychosocial therapies in dementia to maintain skills, manage symptoms and in some bolder aspects, to foster some level of cognitive rehabilitation. It is about the power of self-determination, person centred support and education.

There is much interest politically on how such interventions can reduce the economic burden by both delaying the admission to residential care and improving wellbeing. For me, COGS (a day service model based on CST) provides an almost perfect solution to the objectives of the Care Act in meeting the needs of people with dementia. One of the key themes from the Care Act is prevention. COGS may potentially delay the progression of the disease by stimulating the mind, by building cognitive reserve, whilst at the same time providing valuable respite care to family members (another key goal of the Care Act). So why, why why has this service not been taken up by the masses?? The answer to this continues to baffle me.  This may be because behind this ambitious vision is a single person, working alongside the good and the great to muster together just enough resources to get the initiative of the ground. The lack of take up may also be because it has not been supported by the powerhouse of the universities, who are able to bank roll research to ensure its evidence base, and worthiness of funding. However, there are many services operating out there, very successfully without such support. Despite the steady growth of the project, the slowly evolving nature of COGS has enabled the creator to protect its core values, fight for what is right which in turn has ensured good outcomes from the project. The core essence of a promising social enterprise can be lost, in the rush to turn the profit, when developing it to a national scale.

Many of my days are spent reading around different areas of research and practice in dementia care. Every once in a while I will come across something very interesting, that starts to fire off my brain cells in a sort of frenzy of excitement. Something that I call a ‘light bulb’ moment, where I start to draw the links between isolated research papers, the stories I have been told in training and the gaps I see and hear about daily in service provision. One of these moments was when I met and got to know Jackie Tuppen the creator of COGS. COGS is day service model that has been developed from Cognitive Stimulation Therapy (CST).

Jackie Tuppen is an Admiral Nurse who could see in her past practice that there were many people left abandoned, without hope following a diagnosis. Whilst there were patches of CST available in memory clinics these services are time limited, restricted by funding. Jackie herself is always cautious to make the point that CST has an evidence base, and is therapeutic whereas COGS has no such evidence base, is not therapy but instead stimulation. I beg to differ, her humble attitude has always made me value her even more for her amazing achievements. I am hoping that this blog makes its way to a potential PhD student to consider one day to take up her project to help build the evidence of its impact. I have always suggested to Jackie that she undertakes some level of cognitive testing prior to and after the clubs, however she has always insisted that the only measure of effectiveness she seeks is that of wellbeing and upon reflection she is right. The small scale qualitative work that she has completed on the project shows remarkable outcomes.

Members: “Happy”, “improved my concentration”, “more relaxed“, “company with other people equal to myself”, “keeps my mind active”, “I’m aware what is coming up”

COGS has its origins in Cognitive Stimulation Therapy, or CST which was developed by Aimee Spector and Martin Orrell and their team at UCL in 2003. A systematic review was carried out of the evidence for psycho-social treatments that worked and the identified interventions were utilised in the development of CST and thus, as an intervention it has its origin from  a broad framework. Some of the interventions incorporated include reality orientation, music therapy, validation and reminiscence. CST is not just about what is delivered but also how it is delivered with Person Centred Care being the central theme, evident in its principles. The ‘how’ and ‘what’ is delivered are inter- linked, and dependent on each other. In 2006 National Institute for Clinical Excellence in the UK – NICE, recommended that CST should be offered to all people in mild to moderate stages of the condition. In 2012 the World Alzheimer’s Report recognised and publically advocated the use of CST. The CST model is delivered over fourteen session delivered over two hours a week whereas COGS is designed to work over  a longer period of time: The day runs from 10am to 3pm, every week, for as long as a member can benefit from the stimulation. It provides the opportunity for them to recall or develop new skills in activities. It also provides the family/carer/significant other with five hours of valuable respite. The five hours respite, whilst their relative attends the Cogs Club, has been described as “a lifeline”.

Facilitators of the COGS groups receive training and on-going mentoring from Jackie herself. The approach used by the COGS club, is a skilled approach, fostering and nurturing a positive environment where everyone feels included. Having the right social environment is critical for the learning to take place. Individuals are welcomed by name and through an activity individuals are encouraged to consider the aims of the session. Fostering these intrinsic goals are central to wellbeing, much like instilling hope is. CST has a number of other ‘guiding principles’ that must be adhered to, which are whole heartedly adopted by the COGS clubs.  These principles draw on the vast range of different, evidenced based non-medical therapies noted above, but also includes what we know about memory, cognitive function, neuroplasticity and learning theory (explicit and implicit learning). The therapy surely should be congratulated for the breadth of its framework, drawing from very extensive research in a number of fields. As a practitioner, becoming trained and competent in CST and COGS ultimately leads to truly embracing the bio-psychosocial sphere of dementia care; understanding how also we can effect change on a physical level through the development of new neural pathways simply by the way we treat people, and the opportunities we give them. Some might argue that this is an over-simplistic view, however it is testament to the power of the social model of care, and our understanding of the interplay between both medical and social models, and that this may hold the key to the most effective treatments for dementia care available to us today

So I write this blog as an appeal to all of the commissioners out there. Get savvy, and use the COGS model to start to meet the demands of the Care Act for individuals living with dementia. The COGS model costs between £12 – £30 per person, which is a cost saving on similar projects. The costs vary, as is dependent on the variables such as venue. However I truly believe that with some joined up thinking and collaborative work these costs could be sustainable in a large scale project.

I am very excited to take this model with me to New Zealand in a couple of weeks. I am hoping that they might embrace the philosophy and spirit of the COGS brand.

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