Living well with dementia - my book launch 15th February 2014

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My presentation for my book launch, to be held in Camden on 15 February 2014. The book is about wellbeing in dementia, and how to promote it.

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  • Jane Moore, a carer from Camelford, and Norrms McNamara, who has dementia and was a driving force behind the creation of the first dementia friendly community in the UK, produced the original design.Lynette Richards and Jeff Talbot produced the global version.
  • Published on 3 February 2009.This strategy provides a strategic framework within which local services can:- deliver quality improvements to dementia services and address health inequalities relating to dementia;provide advice and guidance and support for health and social care commissioners and - providers in the planning, development and monitoring of servicesprovide a guide to the content of high-quality services for dementiaDue to run for 5 years.About to be assessed and renewed.
  • BRACE is a registered charity that funds research into Alzheimer’s disease and other forms of dementia.Their role is to help medical science understand the causes of dementia, find ways of diagnosing it earlier and more accurately, and develop more effective treatments. Ultimately, we want to help science beat dementia.They raise funds through voluntary donations, sponsorship, legacies and fundraising events.They spend that money by supporting research at universities in the West of England and South Wales. All the research we support has been peer reviewed and assessed by a committee that includes senior scientists.Filmmakers and scientists came together at this event to increase the public understanding of dementia on 20 Mach 2013..A series of short films about dementia, curated by local filmmaker James Murray-White, preceded a discussion with researchers from the University of Bristol and other institutions supported by BRACE.
  • This viewing of films preceded 8 February 2014: 9.30am - 5.00pmMAKING SENSE OF DEMENTIAPsychoanalytic PerspectivesThis conference is a bid to answer the question “What can psychoanalysis offer in the understanding and treatment of Dementia?” and is addressed to people with dementia, their carers, psychotherapists of all orientations and other health professionals.
  • Beth’s father had vascular dementia for 19 years. It began when Beth was around 12 years old and would go on to dominate my teens and twenties. Beth’s Dad went 10 years without a diagnosis and then spent 9 years in 3 different care homes. Beth passed away in April 2012 aged 85.Beth describes “a myriad of health and social care services that varied from excellent to exceptionally poor. What all of those experiences had in common, however, was what could be learnt from them to improve knowledge, awareness and care for all.”In May 2012 she launched “D4Dementia” blog.
  • “Their message has been very clear – they want to live the best quality of life possible. They want to do the things that they enjoy, to continue to make a contribution to their communities in the way that they decide is important to them.”
  • While I was writing my book, this suddenly happened.Owen Paterson.This quality standard covers the care and support of people with dementia.It applies to all social care settings and services working with and caring for people with dementia.It should be read alongside the NICE Dementia quality standard QS1 which covers care provided by health and social care staff in direct contact with people with dementia in hospital, community, home-based, group care, residential or specialist care.
  • The countries agreed to:set an ambition to identify a cure, or a disease-modifying therapy, for dementia by 2025significantly increase the amount spent on dementia researchincrease the number of people involved in clinical trials and studies on dementiaestablish a new global envoy for dementia innovation, following in the footsteps of global envoys on HIV and Aids and on Climate Changedevelop an international action plan for researchshare information and data from dementia research studies across the G8 countries to work together and get the best return on investment in researchencourage open access to all publicly-funded dementia research to make data and results available for further research as quickly as possible.The dementia challenge is an ambitious programme of work designed to make a real difference to the lives of people with dementia and their families and carers, building on progress made through the National Dementia Strategy. There are 3 dementia challenge champion groups, each focusing on 1 of the main areas for action: driving improvements in health and care, creating dementia friendly communities and improving dementia research.
  • Norman McNamara and me.Madonna.YouTube.A recurrent theme in my talk is listening to person’s views.
  • Norman McNamara from Devon was diagnosed with dementia three years ago when he was just 50.Although his father and grandmother had suffered from the condition, Mr McNamara did not expect it to be part of his future.He said: It was never really in the back of my mind that I might get it."I think it came to a head when I set the kitchen on fire three times."
  • Chris referred to the term "dementia sufferers". “I leave it with you, you write more than me. I suffer more than live well, but that’s just me. Striving to control what’s going on and keeping oneself whole is very trying . But as you say, not always politically correct”Tommy Whitelaw.
  • “I feel a tremendous honour that I have been asked to write a foreword to Shibley’s outstanding book. I am not an academic but I am a nurse, whose wonderful father died of Alzheimer’s in September 2012. Nothing during my training or nursing career could have prepared me for the challenge that came with supporting my mother in my father’s journey with dementia. I have never met Shibley in person, which makes being asked to write this even more special. What we do have in common, however, is real passion for raising profile of dementia and a hope that we can – one day –improve care for all those living with dementia.Many people with dementia will live for many years after their diagnosis, and it should be everyone’s ambition in health and social care to ensure that those living with dementia do so as well as possible for all of the remaining years of their life. Diagnosis is just the start of the journey, and, with that, should come full care and support to allow those with dementia to live where they wish, and with their closest present every step of the way.”
  • In prioritising service user values and experience, says its champions, VbC aims to address the whole person. Value therefore follows - services can offer real value to the service user while also being cost effective for the service they use.“It’s about creating new models of collaborative care, deinstitutionalising patients, and increasing the ability for people to keep their home, their job, their relationship. Rather than focusing on outputs, this is about outcomes. The service should be measured in terms of the wellbeing and quality of life it results in.”
  • Sonya Lyubomirsky – University of CaliforniaTheory and research suggest that people can increase their happiness through simple intentional positive activities, such as expressing gratitude or practicing kindness.Despite evidence suggesting that individual differences in well-being are strongly influenced by genetics , researchers theorize that much of people’s happiness is under their control through intentional activities.Research has been a mess though has been growing in recent decades.However, very early on in the research Ryff and Keyes (1995) identified that ‚the absence of theory-based formulations of well-being is puzzling‛ (pp. 719–720). The question of how wellbeing should be defined (or spelt) still remains largely unresolved, which ‚has given rise to blurred and overly broad definitions of wellbeing‛.As interest in the measurement of wellbeing grows, there is a greater necessity to be clear about what is being measured.
  • Figure 3.1 demonstrates how psychological definitions of subjective wellbeing occupy a grey area, with some viewing psychological wellbeing as synonym- ous with subjective wellbeing, and others seeing it as distinct. While sensing value in models that measure wellbeing in terms of the balance between positive and negative feelings, and affect, Hird (2003) concludes that in practice the distinctions drawn between ‘happiness’, ‘affect’ and ‘life satisfaction’ may not be so important. Economists and sociologists also use data related to individuals’ perception of their circumstances, such as self-rated physical healthiness or whether individu- als think that they have a lot of money or live in a safe neighbourhood. These somewhat disparate approaches to subjective wellbeing reflect the breadth of definitions given to it, and the large number of potential influences upon it.
  • Definition of iPerson : People who are so consumed in their iPod culture that they never are actually seen without earbuds in their ear, and an iPod proudly displayed.
  • Person-centred care is often cited as an aim of gerontological nursing and promotion of personhood is said to be the basis for person-centred care. As such, it forms a cornerstone value for many gerontological nurses, particularly those working in dementia care. Tom Kitwood's ideas and definition of personhood are widely referred to in the literature and used in the dementia care field.
  • With its international approach, the Stroud/ ADI Dementia Quality Framework even has validity across cultures within and between countries. It is intended as a useful aid for the assessment of services and policies for people with dementia and their family carers. The five themes, interestingly, included a ‘supra-national’ and ‘transcedent’. This offers a system- atic way to judge the efficacy of a service and policy, and can be used by the individuals in the service themselves, clients and inspectors. The ‘inner’ ring refers to individual factors of the ‘domains’ of quality of care, health, communication, environment and personhood; the outer ring refers to societal factors of service funding, public attitudes and policy (see Figure 3.2).
  • Pathways to dementia diagnosis: A review of services in the South West of England.Many commissioning organisations in the South West have responded to the challenge of improving the diagnosis of people with dementia by exploring new pathways to diagnosis and a variety of models are now emerging.This project found wide variation on how memory problems or other early signs of dementia were dentified in primary care. Sadly, many people living with dementia in all five areas reported poor experiences in relation to their first contact with a professional (usually a GP) about memory or other relevant problems. They found their concerns were not always taken seriously or treated appropriately, despite persisting.GPs mostly regarded the diagnosis as important but some had ambivalent views. The biggest question was whether or not giving the diagnosis was always the right thing forevery patient, especially if the patient themselves had not sought help, for example if referred via the general hospital..People living with dementia – including carers - had mixed experiences regarding post diagnostic support. Where they had it, they welcomed it.
  • The Memory Assessment Services are run and delivered by strikingly passionate and skilled people, who clearly want to do the best they can for this classically under-served group.But many hoped for more than they were receiving.Where people living with dementia had to wait for assessment and diagnosis, this caused them great distress. A quick response, on the other hand, nearly always came as a relief.What is clear is that people living with an early diagnosis of dementia highly valued information and ongoing support. If they did not have it, they felt very alone, confused about who to call when they needed help, and frequently unconvinced that their own GPs (to whose care most people in the audit were discharged) would be able to help them.
  • A body of work looking at the experiences of LBGT individuals in health and social care contexts and the ways in which they navigate the disclosure of their sexuality to service providers unfortunately confirms the presence of homophobia (irrational fear of, or aversion to, gay or lesbian people) and heterosexism (the assumption that all people are heterosexual and that heterosexuality is the only “permissible” sexuality). Trust therefore becomes a key issue. LGBT individuals and their partners and friends will need reassurance that their rights to privacy will be respected. Dementia may mean a reduction in the ability to conceal and self-censor behaviour and information disclosure.LGBT individuals may also have concerns about confidentiality, uncertain about who may have access to their personal information. As the data sharing drive continues in the NHS, this may become more of a policy issue in the forthcoming years. This fear may be based on previous bad experiences, and may not trust in representatives of authorities, official organisations and institutions.
  • In the case of ‘Making it Real’, the I statements are what older and disabled people, carers and citizens expect to feel and experience when it comes to personalised care and support. They are grouped around six key themes: information and advice active and supportive communities flexible integrated care and support workforcerisk enablementpersonal budgets and self-funding. Whose Shoes?® - Making It Real was created by Gill Phillips based on a previous board game version which helps people understand and engage with the personalisation agenda You will see that they match very closely some main themes of my thesis: quality of life (whole book), health and emotional wellbeing (some health aspects are discussed in Chapters 6 and 8), support networks (and dementia-friendly communities, Chapter 17), choice and control (decision-making, Chapter 11), having a voice (advocacy, Chapter 11, and communication, Chapter 12).
  • The cartoon drawing was created by my colleague - Dr Muna Al Jawad - she is our consultant lead for dementia in our trust but is quite refreshing, even revoutionary in her approach to dementia care - credit must go to her. They were intially created to raise awareness for doctors of our much maligned dementia CQUIN. 
  • However - I realised that that the badges had so much more potential to create more than awareness - they could become part of the fabric of our mantra 'Dementia is everyones business' The aim was to give them out to nurses and other hospital staff, and we gave them out to people completing the dementia education programme.  They were instantly popular.  Lucy then started to take them with me to events, such as the regional dementia collaborative, and they were given out at a conference held in Sussex on life limiting conditions.  The badges have appeared in Scotland, Iceland, Australia.  
  • Published 18 October 2011Recent research found that 43% of cognitively intact patients (mean age 83.7 years at death) had Alzheimer’s disease at necropsy.Worldwide epidemiological follow-up studies showed that the rates of transition between the earliest detectable memory loss and Alzheimer’s dementia is around 33-50% over three years for the type of memory loss considered most likely to be “pre-Alzheimer’s.”These findings suggest a large potential for false positive diagnoses of Alzheimer’s disease.A correct early diagnosis of Alzheimer’s disease could be valuable since it allows informed planning for the future.However, the consequences in falsely diagnosed cases could be grave. Conferring a diagnostic label is far from neutral
  • The Four Principles, originally devised by Beauchamp and Childress in their textbook Principles of Biomedical Ethics, are considered by many as the standard theoretical framework from which to analyse ethical situations in medicine. While the validity and scope of the principles are often debated, there is no questioning the canonical status of the four principles in the field of Medical Ethics. Briefly, the four principles are,Autonomy – The right for an individual to make his or her own choice.Beneficence – The principle of acting with the best interest of the other in mind.Non-maleficence – The principle that "above all, do no harm," as stated in the Hippocratic Oath.Justice – A concept that emphasizes fairness and equality among individuals.It’s easy to see why the four principles have had such a far-reaching influence in Medical Ethics. The values inherent in the principles clearly resonate with our moral norms, and their practical use in ethical decision making is immediately apparent. As a theoretical framework, the four principles remain as useful today as when they were published over 30 years ago; however, in the same time period, the field has drastically changed.
  • Dr Neil Chadborn is also a strong advocate for involving patients and carers in service improvement, as well as exploring potential for service users to participate in research and evaluation.
  • “The first thing that struck me is how violent the rhetoric suddenly seems. David Cameron and Jeremy Hunt use the language of war: "fight-back", "stealing lives", "explosion", "shock", "timebombs" and so on. They discuss dementia as if it were both news that we were unaware of and that it is somehow our collective fault for being unaware of it. It may well be news to them, but it is certainly not news to, nor the fault of, those of us who have been dealing with dementia in our families, or fundraising, or trying to get decent quality services.”
  • The prevalence of dementia in the population might be subject to change. Factors that might increase prevalence include: rising prevalence of risk factors, such as physical inactivity, obesity, and diabetes; increasing numbers of individuals living beyond 80 years with a shift in distribution of age at death; persistent inequalities in health across the lifecourse; and increased survival after stroke and with heart disease. By contrast, factors that might decrease prevalence include successful primary prevention of heart disease, accounting for half the substantial decrease in vascular mortality,13 and increased early life education, which is associated with reduced risk of dementia. This study provides compelling evidence of a reduction in the prevalence of dementia in the older population over two decades.
  • 14 November 2012 - Jeremy Hunt MP met staff, patients and volunteers during a visit to King’s.He was escorted around the ward’s sensory walk by ward manager, Yamu Njie, Dementia Nurse Specialist, Emma Ouldred and the rest of the team and saw first-hand the ethos and key features that make the ward a safe, comfortable and calming environment for patients.During his visit, Mr Hunt spoke to patients, relatives and staff about the changes to the ward and the special facilities it provides. These include a state-of-the-art sensory room with atomisers, sound and visual equipment, special non-slip flooring to reduce falls and mood lighting to promote calm and relaxation. The ward also includes clearer signage, improved orientation, and a space free of clutter – this makes a huge difference to frightened and confused people with dementia.
  • Prof Manes is an author for the new diagnostic criteria for the behavioral variant of frontotemporal dementia and for the new classification of primary progressive aphasia and its variants proposed by international working groups. He is currently the principal investigator or co-principal investigator on several trials evaluating potential new therapies in Alzheimer’s disease. He is also an International Advisory Committee Member of the Frontotemporal Dementia Association.Co-Chair of World Federation of Neurology, Research/Aphasia research group“I felt that there is much ‘positive energy’ in dementia research around the world. Dementia research is very much a global effort, and many laboratories work in partnership both nationally and internationally, where expertise can be pooled and more progress can be made through collaborative efforts.”
  • The Ebbinghaus illusion or Titchener circles is an optical illusion of relative size perception. Named for its discoverer, the German psychologist Hermann Ebbinghaus (1850–1909), the illusion was popularized in the English-speaking world by Edward B. Titchener in a 1901 textbook of experimental psychology, hence its alternative name "Titchener circles”.In the best-known version of the illusion, two circles of identical size are placed near to each other, and one is surrounded by large circles while the other is surrounded by small circles. As a result of the juxtaposition of circles, the central circle surrounded by large circles appears smaller than the central circle surrounded by small circles.Contextual effects are present at every level, from basic perception to social interaction. This means that we do not perceive objects or process cognitive events in an abstract and universal way. The specific significance of an object, emotion, word, or social situation depends on the contextual effects. During normal cognition, our brains do not process targets and contexts separately; rather, targets are in context.
  • Something that is sadly very common in advanced dementia is the decline of the swallowing reflex. The condition, known as dysphagia, is extremely distressing for both the person affected and those caring for them, and can be fatal, either directly through choking or indirectly by setting up aspiration pneumonia.Developing a good understanding of these issues, combined with care that is personalised and dedicated to the individual, can help to minimise incidents of choking.If your loved one is in a care home, you are relying very heavily on staff being vigilant with adhering to the guidance, but also being confident enough to feed and give enough drinks to your relative and not just avoid doing this for fear of ‘getting it wrong’.“There is a huge drive in dementia care for a high calorie intake, and to this end many people living with dementia are advised to eat full-fat dairy products as often as possible.”Why experience mattersA recurrent theme in my talk.
  • You may need to be more aware of non-verbal messages, such as facial expressions and body language. You may have to use more physical contact, such as reassuring pats on the arm, or smile as well as speaking. Gerard Egan defined the acronym SOLER as part of his “Skilled Helper” staged approach to active listening.
  • Also Social Care Institute for ExcellenceChoice and control are key defining aspects of dignity.Withdrawal of respect inhibits choice and control. Treat people as equals, ensuring they remain in control of what happens to them.Empower people by making sure they have access to jargon-free information about services when they want or need it.Identify areas where people’s independence is being undermined in the service and look for ways to redress the balance.
  • “I became frustrated when trying to find information and resources about dementia when my mother was finally diagnosed with dementia four years ago. So many sites, so much stuff to read!”Lee is specifically mentioned by Anna Hepburn (2013), Digital Communications Manager for Social Care, in an article entitled ‘Digital engagement on dementia’ on the Department of Health website. “One of the #dementiachallengers, Lee (@dragonmisery) has set up the Dementia Challengers site to signpost online resources for people caring for someone with dementia. Nothing dem- onstrates better how the Dementia Challenge is more than a government initiative – and how it has its own digital life – than people who care about dementia creating their own digital community and helping others.”  
  • Thank Jo for coming today.The term ‘family carer’ as used in this briefing implies a person or people identified by the person with dementia (if possible) as important to them, and is intended to cover a spouse, partner, child, other relative or friend and supporter.Care staff may find it difficult to raise the subject of end of life care, but training and support will help them become more confident.Making treatment decisions on behalf of another person places an emotional burden on family carers, but care staff can help by informing them about what is happening and what to expect. Good communication with staff is highly valued by family carers.
  • Tommy gave up an established career to become the sole carer for his mother in the five years she had dementia right up until her death in September 2012. While he was looking after his mum he began campaigning on behalf of dementia sufferers and their carers.
  • With support from The Alliance (Health and Social Care Alliance) undertook a marathon walk across Scotland in 2011, ‘Tommy on Tour’, attempting to raise awareness, inviting carers across the nation to contact him with their stories, and lobbying politicians and influential people. He made excellent use of a daily blog to publicise his tour and carers’ stories, which he intends to continue. He created and promoted a DVD – ‘It’s okay to ask for help.’
  • It was Tommy's dream to put on a concert with a specially invited audience of carers to thank them and celebrate the wonderful part they play in our society.The venue is the Glasgow Royal Concert Hall. It's all part of Celtic Connections.
  • Songstress Eddi Reader and indie folk five-piece Admiral Fallow were among the artists who took to the stage on Monday 20th January for a unique concert to celebrate the work of the 660,000 carers in Scotland and those who support them.   Joining them on the bill for the ‘Letters, Life and Love Stories’ Concert organised by the ALLIANCE, Regular Music and Celtic Connections were Emma Pollock accompanied by the Cairn String Quartet, Horse McDonald, Hue & Cry, Kassidy, Tommy Reilly, Joe Nisbet Jr, Siobhan Wilson and Little Fire. The special concert, paying tribute to those who play a caring role was brought to an end in a fitting manner when all of the acts returned to the stage for a group performance of ‘Lean On Me.”Tommy is the Project Engagement Lead with the ALLIANCE’s Dementia Carer Voices Project, he speaks to carer groups, health and social care professionals and students as well as key decision-makers who have influence over the lives of people affected by dementia.
  • Most care for people with dementia is provided by family and friends -‘carers'. It is estimated that the UK has 670,000 primary carers of people with dementia, and these carers save the UK £8 billion a year
  • Five key aimsCarers of people with dementia:have recognition of their unique experience - 'given the character of the illness, people with dementia deserve and need special
consideration... that meet their and their caregivers needs' (WorldAlzheimer Report 2013 Journey of Caring)are recognised as essential partners in care - valuing their knowledge and the support they provide to enable the person with dementia to live wellhave access to expertise in dementia care for personalised information, advice, support and co-ordination of care for the person with dementiahave assessments and support to identify the on-going and changing needs to maintain their own health and well-beinghave confidence that they are able to access good quality care, support and respite services that are flexible, culturally appropriate, timely and provided by skilled staff for both the carer and the person for whom they care
  • “Since 2007 I have been providing front line post diagnostic, psycho-social support to people living with dementia at home. In six and a half years I have accumulated more than 2,500+ individual home visits. This has provided me with a fascinating insight into the everyday lived experience of dementia within the context of the home and wider community.”“In April 2013 I set up my own dementia care blog. Remarkably after just eight months I beat a number of national media heavyweights including The Guardian, The Times, BBC1’s Panorama and Channel4’s Dispatches to be crowned winner of winners in the prestigious Older People in the Media Awards 2013 winning both ‘Best Factual New Media Content about Older People’s Issues’ and ‘Best Overall Contribution to the debate on Older People’s Issues’.”
  • The philosophy of this blog is ‘making dementia care personal’. It presumes that dementia care is just not personal enough, not for people living with dementia, their families or even front line professionals like me.  Institutional barriers.Pervasive concern of my thesis.
  • Michael White, a fellow Director of “Sporting Memories” hit upon the idea of taking his vast image archive along, spreading the photos out on a table and working with smaller, focused groups.Recounting the positive impact this approach had at a conference, in 2009 the Scottish Football Reminiscence Project was born. A small joint project with Alzheimer Scotland and the Scottish Football Museum was established and evaluated. The evaluation by Glasgow Caledonian University in 2010 concluded that football reminiscence has the potential to contribute to the wellbeing of men with dementia in terms of enhancing their self- confidence, self-expression, sociability and sense of enjoyment.The benefits of offering football reminiscence to older men with dementia quickly became apparent. Here was an activity that re-captured not only the passion of supporting a team, but all that came with that. Images passed around not only invoked memories of the great players and teams, of matches won and lost, but also of routines and traditions within communities before and after games.
  • Our vision is to roll out the use of Sports Reminiscence across the UK and beyond, demonstrating its potential not only for improving the wellbeing of people with dementia but also for those who are experiencing or at risk of depression, social isolation or who have been recently bereaved or indeed been made redundant and are struggling with maintaining a role or identity within their community.
  • Dr Guzmán García, who now works at the Dementia Research Centre, North East London NHS Foundation Trust, said: “While dancing is often considered entertainment in care homes, I believe that it can be useful practice. I found that these dance classes helped calm agitation and improved mood and quality of life for people with dementia. There are also obvious advantages in terms of physical fitness.Residents were introduced to some simple steps allowing them to dance together to uplifting Danzón music. The lessons brought together cognitive, behavioural and emotional functions and also enabled residents to enjoy the music and the social interaction.“I witnessed the joy people got from taking part in the dancing and for residents who were watching, the laughter and happy memories it generated.”Gardening is a physical activity that provides an opportunity to get outdoors and is enjoyed by many people. The activity can be varied to suit the person's abilities - from general tidying to weeding, raking up leaves and watering the plants. There is also the satisfaction of watching the plants grow and enjoying their colours, smells and textures. Gardening can be an enjoyable activity for people at all stages of dementia. If the person does not have a garden, tending to indoor plants or flowers can be enjoyable as well.
  • The term 'assistive technology' refers to 'any device or system that allows an individual to perform a task that they would otherwise be unable to do, or increases the ease and safety with which the task can be performed' (Royal Commission on Long Term Care, 1999).
  • Professor Orpwood recently retired as Director of the Bath Institute of Medical Engineering (BIME) after a career in engineering design and research, initially in Industry, and then in academia and the health service. His work at BIME ranged from surgical devices to disability equipment, and in the later years had a strong focus on supporting people with dementia, ranging from simple memory aids to autonomous smart homes.Professor at University of BathHis original background however was in the neurosciences, and he has always maintained that interest through a modest programme applying engineering modelling tools to the behaviour of neural tissues. Professor Roger Orpwood (2009) has been instrumental in mapping out a new design methodology for assistive technologies in dementia. Orpwood (2009) highlights that the designer needs to make close observations about how the user has reacted, and in some cases make measurements of their responses. Having tested an initial prototype, Orpwood proposes that the design can then be amended to take into account any problems or concerns that arose, with the testing repeated. This is shown schematically in Figure 14.1.
  • Chapter 15.An ‘ambient assisted living’ (AAL) system is seen to have potential benefits for monitoring a range of alert situations – for example, critical events requiring immediate intervention (e.g. heart attack) to non-critical situations requiring longer-term preventive interventions (e.g. exacerbations of a chronic illness). How can one best respond to an individual’s desire to ‘age-in-place’? How can one improve services and enhance people’s independence and quality of life? How can one best respond to these challenges in the context of limited resources? It is in this context that advances in the area of AAL may play a crucial rôle. AAL services and technologies are designed to help extend the time that older people can live at home by ‘increasing their autonomy and assisting them in carrying out activities of daily life’ (Wojciechowski and Xiong, 2008).
  • COACH: the five essential steps of handwashing – successful activity completion was considered to be any sequence of steps that took the participant from start to finish; as the long-term care facility’s guidelines required the use of liquid soap, wetting one’s hands before getting the soap was not considered an essential step in the activity, therefore the ‘water on’ and ‘soap used’ steps are interchangeable (adapted from Mihailidis et al., 2008)
  • COACH: motion tracker– a flow diagram of COACH components–images from the camera are translated into hand and towel positions by the tracking system; these are passed to the belief monitor, which calculates the probability distribution over the possible states; this belief state is passed to the policy, which selects an action for COACH to take (i.e. prompt, observe user, or call caregiver) (adapted from Mihailidis et al., 2008)
  • The Telecare LIN is the national network supporting local service redesign through the application of telecare and telehealth to aid the delivery of housing, health, social care and support services for older and vulnerable people.
  • Dementia Dog, one of the five innovative solutions developed through the Living Well with Dementia Design Challenge, is a service providing assistance dogs to people with dementia, helping them lead more fulfilled, independent and stress-free lives.The dogs are taught to support existing patterns of waking, sleeping and eating for people with dementia. Through responding to sound alerts they can also help with regular hydration, medication and toilet use. In the early stages, reminders may not be necessary, but if they begin immediately it will mean the routine is established when the need arises. Dogs can also be trained to provide orientation outside the home.The social and emotional benefits are potentially huge. Dogs are naturally loving presences and extensive anecdotal evidence suggests they can have a transformative effect on people with dementia’s alertness and mood. Outside the home, dogs can be great ice-breakers, initiating conversations in which memory need not be a factor. Just by being able to get out more, the person with dementia can widen his or her circle of support.
  • The term built environment refers to the human-made surroundings that provide the setting for human activity, ranging in scale from buildings and parks or green space to neighbourhoods and cities that can often include their supporting infrastructure, such as water supply, or energy networksDementia-related problems often make it more difficult to understand and navigate the built environments. Dementia-friendly environments should compensate for impairments in order to maximise independence and quality of life
  • In light of our ageing population and rapid expansion of the oldest-old group (age >85)  it is important that the urban environment is easily accessible. As part of ‘inclusive design’ policies, tactile ‘blister’ paving was designed to provide guidance for visually impaired and blind people at sites such as pedestrian crossings. However, a report by the UK Health & Safety  Laboratory questioned whether tactile blister paving may lead to trips in older adults due to the height of the blisters. Tactile paving may be considered as man-made uneven ground, and it is known that walking on uneven ground is associated with falls.Participants with balance problems told them that they often felt unsafe walking on tactile paving and, in our laboratory, it affected the rhythm of our subjects’ gait, indicating that their balance was challenged. Many people found the ‘blisters’ uncomfortable and regarded them as a slip hazard when laid on a steep slope, or when wet or icy; when tested, we found that brass and steel studs had a high slip potential.
  • Supportive communities are well known in Japan.  For example, Fureai kippu (in Japanese ふれあい切符 :Caring Relationship Tickets) is a Japanese currency created in 1995 by the Sawayaka Welfare Foundation so that people could earn credits helping seniors in their  community.The basic unit of account is an hour of service to an elderly person. Sometimes seniors help each other and earn the credits, other times family members in other communities earn credits and transfer them to their parents who live elsewhere.In Japan, there’s a strong ethos and established history of ‘befriending’, and English policy has emulated that. Imitation is the best form of flattery, but not when it comes to intellectual property law.This is the Purple Angel symbol co-designed by Jane Moore from Camelford and Norman McNamara from Torbay.
  • Place – how do the physical environment, housing, neighbourhood and transport support people with dementia?People – how do carers, families, friends, neighbours, health and social care professionals (especially GPs) and the wider community respond to and support people with dementia?Resources – are there sufficient services and facilities for people with dementia and are these appropriate to their needs and supportive of their capabilities? How well can people use the ordinary resources of the community?Networks – do those who support people with dementia communicate, collaborate and plan together sufficiently well to provide the best support and to use people’s own ‘assets’ well?
  • Healthy Living Club StockwellThe group meets for 4 hours each week for a programme of activities developed to alleviate the symptoms of dementia and to promote the mental and physical wellbeing of those people with the illness. Each meeting is run as a social event, which people attend to meet each other, have a good time and share experiences. The Club is run with a team of volunteers and some sessional contributors, led by a paid co-ordinator. It is seen as a blue-print for future dementia care in the community.Local people with dementia and their carers have a social focus every week, often in place of isolation. The Club is self-governing and adapts to the changing needs of its members as their condition progresses.
  • Advocacy is, according to the Advocacy Charter: "…taking action to help people say what they want, secure their rights, represent their interests and obtain services they need. Advocates and advocacy schemes work in partnership with the people they support and take their side. Advocacy promotes social inclusion, equality and social justice”Advocacy schemes work in partnership with the people they support and take their side in a dispute. Advocacy can empower people who can feel very powerless indeed, especially when dealing with professionals and large powerful organisations.
  • Dementia Alliance International is a non-profit group of people with dementia from the USA, Canada, Australia and other countries that seek to represent, support, and educate others living with the disease, and an organization that will provide a unified voice of strength, advocacy and support in the fight for individual autonomy and improved quality of life.Their first major goal is to raise funds for attendance of people with dementia at the next Alzheimer’s Disease International conference in May 2014.
  • Living well with dementia - my book launch 15th February 2014

    1. 1. This version does not include the personal messages by Kate Swaffer nor Norman McNamara to my guests. It otherwise is a faithful record of the talks to be given in Camden on 15 February 2014.
    2. 2. Introduction to Dr Shibley Rahman Queen‟s Scholar BA(1st) MA MB BChir PhD (Cambridge) MRCP(UK) LLB(Hons) LLM MBA FRSA BPP Diploma in Professional Legal Practice February 15th 2014
    3. 3. 3.00 pm Registration 3.20 pm Presentation 1 What do we mean by 'living well with dementia‟? 4.05 pm Coffee and other refreshments 4.30 pm Presentation 2 Strategies for 'living well with dementia‟ 5.15 pm Discussion session 7 pm dinner
    4. 4. Part 1 What do we mean by 'living well with dementia'?
    5. 5. 1. The need to raise awareness of the dementias 2. Forewords 3. Contents of the book 4. What is wellbeing? What is personhood? What is dementia? 5. Practical issues about wellbeing 6. Promoting wellbeing 7. Contemporary challenges e.g. wandering
    6. 6. 1. The need to raise awareness of the dementias
    7. 7. James Murray-White – raising awareness of the dementias
    8. 8. Beth Britton – D4Dementia blog
    9. 9. Personal experience of Beth Britton https://www.youtube.com/watch?v=hT7HtCvwmq4
    10. 10. NICE QS30: Quality standard for supporting people to live well with dementia It applies to all social care settings and services working with and caring for people with dementia. It should be read alongside the NICE Dementia quality standard QS1.
    11. 11. The “Dementia Challenge” There are 3 dementia challenge champion groups, each focusing on 1 of the main areas for action: driving improvements in health and care, creating dementia friendly communities and improving dementia research. and #G8dementia • • • • • • significantly increase the amount spent on dementia research increase the number of people involved in clinical trials and studies on dementia establish a new global envoy for dementia innovation develop an international action plan for research share information and data from dementia research studies across the G8 countries encourage open access to all publicly-funded dementia research to make data and results available for further research as quickly as possible
    12. 12. 2. Forewords by Prof Hodges (Professor of Behavioural Neurology, University of Cambridge UK), Prof Facundo Manes – Vice Chair of the research group for cognitive and aphasias for the World Federation of Neurology (and the University of Favorolo, Argentina) and Sally Marciano (UK)
    13. 13. Prof Hodges
    14. 14. Thanks enormously to Sally Marciano for her Foreword too.
    15. 15. “I am not an academic but I am a nurse, whose wonderful father died of Alzheimer’s in September 2012. Nothing during my training or nursing career could have prepared me for the challenge that came with supporting my mother in my father’s journey with dementia.” Sally Marciano [Foreword]
    16. 16. 3. Contents of the book
    17. 17. Dedication Acknowledgements Foreword by Professor John Hodges Foreword by Sally Ann Marciano Foreword by Professor Facundo Manes Introduction What is „living well with dementia‟? Measuring living well with dementia Socio-economic arguments for promoting living well with dementia
    18. 18. A public health perspective on living well in dementia, and the debate over screening The relevance of the person for living well with dementia Leisure activities and living well with dementia Maintaining wellbeing in end-of-life care for living well with dementia Living well with specific types of dementia: a cognitive neurology perspective General activities which encourage wellbeing
    19. 19. Decision-making, capacity and advocacy in living well with dementia Communication and living well with dementia Home and ward design to promote living well with dementia Assistive technology and living well with dementia Ambient-assisted living and innovation culture The importance of built environments for living well with dementia
    20. 20. Dementia-friendly communities and living well with dementia Conclusion
    21. 21. 4. What is wellbeing? What is personhood? What is dementia?
    22. 22. “The real value of values-based commissioning” 7 JUNE 2013 | BY EMMA DENT
    23. 23. OUTCOMES NOT OUTPUTS
    24. 24. What is wellbeing?
    25. 25. 1937-1998
    26. 26. Personhood : A standing or a status that is bestowed upon one human being, by others, in the context of relationship and social being. It implies recognition and trust. “We need professionals to work with us, not exclude us and realise we are often the key to understanding the person with dementia” Uniting Carers, Dementia UK SCIE personalisation Whole person care Individualised budgets
    27. 27. Edana Minghella: Pathways to Dementia Diagnosis – “Dementia partnerships” Concerns often not taken seriously Poor experiences in first clinical encounter Some GPs had “ambivalent views” Mixed experiences in postdiagnostic support
    28. 28. Person-centred approaches “Whose Shoes” by Gill Phillips
    29. 29. “I don't believe anyone has any particular "authority" on dementia, apart from the persons who are living with dementia and the people who care for them. Nobody has all "the right answers" in research.” Whose Shoes blogpost Published today.
    30. 30. Lucy Jane Marsters Dr Muna Al Jawad The badges have appeared in Scotland, Iceland, Australia.
    31. 31. Lucy Jane Marsters
    32. 32. Dementia: the diagnosis
    33. 33. Dr Peter Gordon – Consultant Psychiatrist * the discussion of the “timely diagnosis”
    34. 34. Peter‟s message https://vimeo.com/86599504
    35. 35. Dr Neil Chadborn Dr Peter Gordon Dr Avinash Sharma
    36. 36. Prof Richard Ashcroft
    37. 37. “The first thing that struck me is how violent the rhetoric suddenly seems. David Cameron and Jeremy Hunt use the language of war: "fight-back", "stealing lives", "explosion", "shock", "timebombs" and so on.”
    38. 38. “They discuss dementia as if it were both news that we were unaware of and that it is somehow our collective fault for being unaware of it. It may well be news to them, but it is certainly not news to, nor the fault of, those of us who have been dealing with dementia in our families, or fundraising, or trying to get decent quality services.”
    39. 39. Dementia: a medical „window of opportunity‟ for the vascular dementias?
    40. 40. Dementia: a cognitive neurology perspective
    41. 41. Hippocampus/surrounding areas in temporal lobe (Braak & Braak) : significance for dementia of Alz type
    42. 42. Signage for dementia of Alz type
    43. 43. The cognitive neuropsychology of bvFTD (Rahman et al. 1999 Brain)
    44. 44. Prof Facundo Manes, Buenos Aires, Argentina
    45. 45. The „Ebbinghaus Illusion‟ and bvFTD
    46. 46. 1. The need to raise awareness of the dementias 2. Forewords 3. Contents of the book 4. What is wellbeing? What is personhood? What is dementia? 5. Practical issues about wellbeing 6. Promoting wellbeing 7. Contemporary challenges e.g. wandering
    47. 47. End of part 1
    48. 48. Part 2 Strategies for 'living well with dementia'
    49. 49. 4.05 – 4.30 pm Break
    50. 50. 1. The need to raise awareness of the dementias 2. Forewords 3. Contents of the book 4. What is wellbeing? What is personhood? What is dementia? 5. Practical issues about wellbeing 6. Promoting wellbeing 7. Contemporary challenges e.g. wandering
    51. 51. 5. Practical issues about wellbeing
    52. 52. Swallowing
    53. 53. Problems swallowing – Beth Britton D4Dementia blog “The other key factor in dysphagia management is the consistency of all the foods, drinks and liquid medications given to the person with the condition. Powder thickeners are often prescribed to help with this, but it must be remembered that having things too thick is as dangerous as too thin. Too thick and our experience was that it would stick in dad’s mouth/throat, causing coughing.” [From “Hard to swallow” 12 September 2012 http://d4dementia.blogspot.co.uk/2012/09/hard-toswallow.html]
    54. 54. Communication
    55. 55. 6. Promoting wellbeing
    56. 56. Choice and control
    57. 57. Social Care Institute for Excellence • Choice and control are key defining aspects of dignity. • • Withdrawal of respect inhibits choice and control. • Treat people as equals, ensuring they remain in control of what happens to them. • Empower people by making sure they have access to jargon-free information about services when they want or need it.
    58. 58. “Dementia challengers” Lee
    59. 59. End-of-life / SCIE: Jo Moriarty
    60. 60. • Care staff may find it difficult to raise the subject of end of life care, but training and support will help them become more confident. • Making treatment decisions on behalf of another person places an emotional burden on family carers, but care staff can help by informing them about what is happening and what to expect.
    61. 61. Impact on carers – Thomas Whitelaw
    62. 62. http://www.youtube.com/watch?v=36_Y_3y0yXM&sns=tw
    63. 63. Margaret Kilby - carers’ experiences Matter. 670000 primary carers £8 billion
    64. 64. “Dementia UK”/Jessica Kingsley Publishers
    65. 65. Five key aims Carers of people with dementia: • have recognition of their unique experience • are recognised as essential partners in care • have access to expertise in dementia care for personalised information, advice, support and coordination of care for the person with dementia • have assessments and support to identify the on-going and changing needs to maintain their own health and well-being • have confidence that they are able to access good quality care, support and respite services that are flexible, culturally appropriate, timely and provided by skilled staff for both the carer and the person for whom they care
    66. 66. @yeweestoater
    67. 67. Darren Gormley 2,500+ home visits in 6½ years. “Older people in the media” awards - “Best factual new media content about older people‟s issues‟ - „Best overall contribution to the debate on older people‟s issues‟
    68. 68. Sporting Memories Network Tony Jameson-Allen 2009 Scottish Football Reminiscence Project 2010 Glasgow Caledonian University (contribution to wellbeing, including self-confidence, self-expression, sociability nad enjoyment)
    69. 69. "As Prime Minister, I was lucky enough to attend a number of events at both the Olympic and Paralympic Games and my memories of cheering on our competitors will, I hope, remain with me forever. This is the very reason that initiatives such as the Sporting Memories Network are so valuable and I thank you for your work in this area” David Cameron Prime Minister
    70. 70. Neural substrates?
    71. 71. Episodic recollection of personal events from one‟s own life is referred to as autobiographical memory. During autobiographical recall, spatially and temporally bound information is retrieved and the relevant scene vividly reconstructed. This is accompanied by a feeling of reminiscence, where the self being remembered is the same self engaged in recollection, and the re-experiencing of these memories may elicit strong emotions. (Nathan Spreng, Mar and Kim 2008 Journal of Cognitive Neuroscience 21:3, pp. 489–510)
    72. 72. Smith AP, Henson RN, Dolan RJ, Rugg MD. (2004) fMRI correlates of the episodic retrieval of emotional contexts. Neuroimage. Jun;22(2):868-78.
    73. 73. Music – “Playlist for life” http://www.playlistforlife.org.uk
    74. 74. “Mum sang anything and everything. She was brilliant at harmonising, coming in below the melody and swooping around, and before you knew it you were partaking of something rather fun.” “Mamie Baird Magnusson was a dab hand with the mouth organ too, coming from a time and place where people made their own entertainment. In her Rutherglen council house her dad had a violin and there was an inherited organ too.” [The Scotsman, 2 February 2014]
    75. 75. Dancing - e.g. Dr Guzmán García, improvements in mood and quality of life Gardening - e.g. enjoyable, enables people to enjoy outside spaces, sensory stimulation
    76. 76. Fronto-striatal loops
    77. 77. Innovation
    78. 78. Adoption of innovations (classical diffusion theory of Rogers)
    79. 79. Assistive technology The term 'assistive technology' refers to 'any device or system that allows an individual to perform a task that they would otherwise be unable to do, or increases the ease and safety with which the task can be performed' (Royal Commission on Long Term Care, 1999).
    80. 80. Ambient assisted living “Age in place” „increasing their autonomy and assisting them in carrying out activities of daily life‟ (Wojciechowski and Xiong, 2008)
    81. 81. Mike Clark http://www.telecarelin.org.uk - telehealth to aid the delivery of housing, health, social care and support services for older and vulnerable people.
    82. 82. Design
    83. 83. Dementia dogs (Design Council)
    84. 84. Design of wards and homes e.g. gardens
    85. 85. Quality of life improves with an outdoor space or garden giving people the chance to: • be physically active • feel unrestrained • be more in touch with nature • be alone if they want to be • socialise if they want to • do meaningful things that make them feel at home.
    86. 86. A dementia-friendly facility aims to support independence and mobility in a safe and secure environment. Many familiar activities take place in gardens and outside spaces and are a normal part of everyday life, e.g. hanging out washing. Older people want design features that make up for physical impairment and support safe passage. Recreational gardening can be social and private. Gardening spots of privacy and reflection are important in shared living environments.
    87. 87. Charmaine Hardy
    88. 88. Thanks to Charmaine Hardy for giving us permission to use the photograph of the poppy on the front cover of the book.
    89. 89. Built environments
    90. 90. Inclusivity The British Standards Institute (2005) defines inclusive design as "The design of mainstream products and/or services that are accessible to, and usable by, as many people as reasonably possible ... without the need for special adaptation or specialised design.”
    91. 91. Tactile paving – Prof Marcus Ormerod (Salford)
    92. 92. Dementia friendly communities
    93. 93. Julie Line Jane Moore Kim Pennock Kim Hudson
    94. 94. RAISING AWARENESS AROUND THE WORLD
    95. 95. e.g. ふれあい切符 Bruges
    96. 96. Healthy Living Club Stockwell – Simona Florio
    97. 97. Access to justice: non-statutory advocacy
    98. 98. Advocacy is, according to the Advocacy Charter: "…taking action to help people say what they want, secure their rights, represent their interests and obtain services they need. Advocates and advocacy schemes work in partnership with the people they support and take their side. Advocacy promotes social inclusion, equality and social justice”
    99. 99. 7. Contemporary challenges e.g. wandering
    100. 100. 1. The need to raise awareness of the dementias 2. Forewords 3. Contents of the book 4. What is wellbeing? What is personhood? What is dementia? 5. Practical issues about wellbeing 6. Promoting wellbeing 7. Contemporary challenges e.g. wandering
    101. 101. What could and should be done internationally?
    102. 102. A real need to include people with dementia in service/policy design and the direction of research (which might include wellbeing as well as neuropharmacological approaches.)
    103. 103. Kate Swaffer (@KateSwaffer) in Adelaide
    104. 104. “Dementia Alliance International” http://www.dementiaallianceinternational.org
    105. 105. End of part 2 (and end of both sessions)
    106. 106. Discussion

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