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Essentials of dementia: dementia awareness for professionals and practitioners

Education, training and skills acquisition are a hallmark of good dementia care.

 

Dementia represents one of the biggest global health challenges facing society today. Proposed dementia care pathways involve many disciplines and health sectors, and a global priority is the continuing education of professionals delivering care (World Health Organisation, 2012).

 

In other words – “dementia awareness” should definitely apply to all practitioners and professionals too.

 

The aim is to support all professionals and practitioners to be responsive to the needs of people with dementia, to continue to develop their skills and expertise and to improve the contribution they make to achieving the best outcomes for people with dementia, their carers and families.

 

In England, it is estimated that around 676,000 people have dementia. In the whole of the UK, the number of people with dementia is 850,000.

 

At the heart of the task to improve dementia care is a workforce not sufficiently equipped to work with people with dementia. For example, people with dementia aged over 65 years occupy one quarter of hospital beds at any one time.

 

Key stakeholders are, however, beginning to respond to the agenda.

 

Some time ago, the Alzheimer’s Society “Counting the cost” (2009) report found that people with dementia are staying in hospital longer than those without dementia, with a detrimental impact on the individual’s dementia and physical health.

 

Around the same time, the Department of Health published the National Dementia Strategy for England in 2009, “Living well with dementia”, which committed to developing an informed and effective workforce was identified as key to delivering the Strategy.

 

It is widely believed that, to support people in living well with dementia, we need to continue to make progress on improving awareness and understanding of dementia to transform the way society thinks and acts about dementia. Every organisation and every person who makes up a community has both a role and a responsibility to act.

 

There is substantial interest from all parts of the health and care spectrum with a real demand for knowledge, guidelines and information from prevention to end of life care and everything in between.

 

Dementia Core Skills Education and Training Framework

 

This Dementia Core Skills Education and Training Framework is an extraordinarily useful and helpful resource which details the essential skills and knowledge necessary across the health and social care spectrum.

 

The Dementia Core Skills Education and Training Framework was commissioned and funded by the Department of Health and developed in collaboration by Skills for Health, Health Education England, Skills for Care and an expert advisory group that ensured multi-organisational and multi-stakeholder representation. Launched in October 2015, it is a comprehensive resource which details the essential skills and knowledge necessary for staff across the broad and varied spectrum of health and social care settings and will support organisations to:

 

  • standardise the interpretation of dementia education and training
  • guide the focus and aims of dementia education and training delivery through key learning outcomes
  • ensure the educational relevance of dementia training
  • improve the quality and consistency of education and training provision.

 

It sets out standards needed in dementia education and training including raising dementia awareness, knowledge and skills for those that have regular contact with people affected by dementia and knowledge and skills for those in leadership roles.

 

 

Awareness and ‘social action’

 

Progress has been made on encouraging businesses, local authorities, the wider public sector and civil society to work together to tackle discrimination through dementia friendly communities.

 

Awareness and social action has already been a phenomenal success with over 2 million people becoming Dementia Friends. Dementia awareness and understanding has continued to increase through the creation of an additional 400,000 Dementia Friends and through the launch of Black and Minority Ethnic materials for Dementia Friends.

 

People aged over 65 now account for over two-thirds of patients in general hospitals and 30% of them will have dementia. Many may be diagnosed with dementia for the first time when admitted to hospital for another reason.

 

As such, all hospitals and physicians need to be ready to manage the care of patients with dementia.

 

All staff involved in dementia care need to be informed, skilled and have enough time to care. They need to be fully involved in the “social action” for change.

 

For example:

 

  • Nurses need good quality training and education in dementia that is easy to access, practical and focuses on attitudes/approach and communication.

 

  • Speech and language therapy services should provide equal access to intervention for communication and for swallowing disorders. Early speech and language therapy intervention is crucial so that people with dementia and their carers have their needs met in a timely way.

 

  • Social work is at the heart of empowering people with positive risk taking approaches and making sure their rights are respected and supported (Department of Health, 2014). Social workers seek to build meaningful relationships with people with dementia and their family carers, making sure they remain at the heart of the decision-making process.

 

  • Occupational therapists evaluate persons with dementia to determine their strengths, impairments, and performance areas needing intervention (e.g. Schaber and Lieberman, 2010).

 

  • Likewise, physios can assess problems that restrict a person’s physical activities as well as how able they are to join in with everyday life. The physio can work with the person with dementia and their carers to encourage and promote physical activity and maintain their mobility and independence for as long as possible.

 

 

Dementia awareness and risk reduction

 

To date, there has been limited research concerning public perceptions of brain health and dementia risk reduction. For example, a national survey undertaken in Australia in 2005 found that popular beliefs about dementia risk were weakly aligned with the scientific evidence with a low level of understanding about the association between dementia and cardiovascular factors (Smith, Ali and Quach, 2015).

 

In addition, even if such links are made, such behaviour change is not always easy (O’Donnell et al., 2015).

 

Raising public awareness of how healthy lifestyle choices can reduce personal risk of developing dementia is a priority.  The “NHS Health Check” includes a mandatory dementia awareness raising component for people over the age of 65.

 

But merely providing information about the latest research via educational sessions to health professionals caring for people with dementia may be insufficient to drive change (Goodenough et al., 2016).

 

 

 

 

Exciting developments

 

Commissioners in both health and social care need support to improve their awareness of effective practice in the provision of post diagnostic care and support.

 

Individuals with dementia who may lack the mental capacity to make their own decisions have their rights enshrined in the Mental Capacity Act 2005 (MCA).  Implemented in 2007, the Mental Capacity Act (MCA) provides opportunities for assisting with planning and making decisions on others’ behalf, and may be expected to be entrenched within clinical practice. Jill Manthorpe, Kritika Samsi and Joan Rapaport (2014) conducted follow-up qualitative interviews with 15 community-based dementia nurses to detect changes and developments in views and practices of the MCA. It was striking that some participants were concerned about lack of understanding amongst other professionals and felt more public awareness was required. All providers of care need to be encouraged to make available suitable training materials to their staff.

 

The World Dementia Council has now been re-formed, with a new Chair and Vice Chair, a refreshed membership and terms of reference and a new more action-focused operating model. Improve awareness of dementia, increase the focus on risk reduction and preventative approaches and diminish the stigma associated with the disease (their work is described here https://worlddementiacouncil.org/our-work/our-vision-and-mission).

 

 

 

About this book

 

For high quality dementia care to be provided, we need a workforce that is not only knowledgeable about dementia but also skilled in the provision of care, and appreciative of its importance.

 

It is striking that other jurisdictions other than the UK have also had difficulties in effectively educating their workforce about dementia.

We hope that, whatever your personal and professional background, however little or much you know about dementia, you will find this book informative, interesting and relevant to your needs.

Please let us know what you think of our book, or how you get on.

Dr Shibley Rahman (Twitter @dr_shibley)

Prof Rob Howard ((Twitter @profrobhoward)

London, August 2017

 

Note:

“Essentials of dementia: dementia awareness for professionals and practitioners” by Shibley Rahman and Rob Howard will be published on January 21, 2018.

 

Contents

 

Foreword (Karen Dening)

Introduction (Kate Swaffer)

 

Preface

 

Chapter 1:

Dementia awareness

 

Chapter 2:

Dementia identification, assessment and diagnosis

 

Chapter 3:

Dementia risk reduction and prevention

 

Chapter 4:

Person-centred dementia care

 

Chapter 5:

Communication, interaction and behaviour in dementia care

 

Chapter 6:

Health and well-being in dementia care

 

Chapter 7:

Pharmacological interventions in dementia care

 

Chapter 8:

Living well with dementia and promoting independence

 

Chapter 9:

Families and carers as partners in dementia care

 

Chapter 10:

Equality diversity and inclusion in dementia care

 

Chapter 11:

Law, ethics and safeguarding in dementia care

 

Chapter 12:

End of life dementia

 

Chapter 13:

Research and evidence-based practice in dementia care

 

Chapter 14:

Leadership in transforming dementia care

 

Afterword

 

Bibliography

 

 

References

 

Alzheimer’s Society (2009) Counting the cost.

 

Department of Health (2009) Living well with dementia: A National Dementia Strategy. Department of Health: Leeds.

 

Department of Health (2014).  A manual for good social work practice. Supporting adults who have dementia.  https://www.gov.uk/government/publications/learning-resource-for-social-work-with-adults-who-have-dementia

 

Department of Health (2016) Prime Minister’s Challenge on Dementia 2020 Implementation Plan, https://www.gov.uk/government/publications/challenge-on-dementia-2020-implementation-plan

 

Goodenough B, Fleming R, Young M, Burns K, Jones C, Forbes F. Raising awareness of research evidence among health professionals delivering dementia care: Are knowledge translation workshops useful? Gerontol Geriatr Educ. 2016 Oct 24:1-15.

 

Manthorpe J, Samsi K, Rapaport J. Dementia nurses’ experience of the Mental Capacity Act 2005: a follow-up study. Dementia (London). 2014 Jan;13(1):131-43.

 

O’Donnell CA, Browne S, Pierce M, McConnachie A, Deckers K, van Boxtel MP, Manera V, Köhler S, Redmond M, Verhey FR, van den Akker M, Power K, Irving K; In-MINDD Team. Reducing dementia risk by targeting modifiable risk factors in mid-life: study protocol for the Innovative Midlife Intervention for Dementia Deterrence (In-MINDD) randomised controlled feasibility trial. Pilot Feasibility Stud. 2015 Nov 17;1:40.

 

Royal College of Nursing (2013). Dementia: Commitment to the care of people with dementia in hospital settings, https://www.rcn.org.uk/professional-development/publications/pub-004235

 

Schaber, P., Lieberman, D. (2010). Occupational therapy practice guidelines for adults with Alzheimer’s disease and related disorders. Bethesda, MD: AOTA Press.

 

Smith BJ, Ali S, Quach H. The motivation and actions of Australians concerning brain health and dementia risk reduction. Health Promot J Austr. 2015 Aug;26(2):115-21.

 

World Health Organisation. (2012). Dementia: A public health priority. Geneva, Switzerland: WHO Press.

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The power of stigma. It was more than a mere balloon.

One of my mum’s ‘favourite books’ is “What the hell happened to my brain?” by her friend Kate Swaffer. Something that none of us predicted that the publisher, Jessica Kingsley Publisher, would arrange for different versions around the world to be produced, but some of the picture covers might get ‘lost in translation’.

The German version was originally somebody holding a balloon to his face. This, it is said, was supposed to signify somebody’s frailty in having dementia.

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Amazingly, despite the legal paperwork of liabilities, third party liabilities and contract law, >500 complaints led to this book cover being withdrawn.

Indeed, with me now writing a book on frailty for Routledge with main forewords by Prof Ken Rockwood and Prof Adam Gordon, I can see how the two areas might have blurred together. Frailty, although no widespread international definition exists, broadly refers to a low resilience to and high vulnerability to stressors or shocks when tend to leave a person not fully recovered. This means that someone with cognitive frailty, for example, might easily get affected by an urinary tract infection to become frankly delirious or show cognition at levels of a severe dementia.

Cultural differences do exist. Indeed, if a charity were to market its logo abroad, for example in selling the brand of ‘dementia friendly communities’, if it had substantial financial resources, it might instruct a branding agency to advise on cultural implications (e.g. colour) of the brand in a foreign jurisdiction.

It is hard for any of us who are not German to understand the precise meaning of why somebody holding a balloon to his face is an accurate and reliable portrayal of dementia. Cultural differences are particularly important in English dementia service provision, for example in respecting equality and diversity for population sub-groups such as black and minority ethnic subgroups or lesbian, gay, bisexual or transgender individuals.

I don’t want to go into half a century of literature on ‘stigma’ which I am reviewing for my book on frailty here. I did briefly go into stigma for my 2nd book ‘Living better with dementia’ in the context of dementia. But I have been struck with how the worlds of ‘stigma’ and ‘prejudice’ often have overlapped.

The word ‘stigma’ originally means “mark”. In frailty, it might be obvious in that someone who looks physically frail might be “recognised when you see it”. But there is still the possibility that someone is actually frail who does not ‘look frail’, as identified for example by the Electronic Frailty Index.

And the age old question of ‘what does a person with dementia look like?’ might be relevant here. A person with dementia might not have two heads and four feet, for example. This may seem like a ludicrously defensive statement, but the statement is still often made around the world: “But you don’t look like a person with dementia.”

Stigma is problematic as it can create a sense of “otherness”, at worst a different class or even subclass of “human beings”. This might get inadvertently exacerbated if that class gets their own award ceremonies (“most exceptional person with dementia”) or be the subject of accolades (“awards for dementia friendly communities”).

Unfortunately, what can be somebody’s stigma can be another person’s well intended brand. But the sense of ‘otherness’, or being different, is definitely one to watch out for, as it can engender a sense of inferiority. Stigma, for example, is enough for people with mental health issues such as schizophrenia and psychotic delusions to stop engaging with health and social care services.

Arguably, the sense of ‘otherness’ and ‘differentness’ is not particularly helped when a CEO of an international dementia charity excitedly tweets on a person with dementia speaking, “you could hear a pin drop”, as if that person with dementia is a tenth wonder of the world but not in a good sense.

The significance of stigma for me is that it can lead to individuals being labelled with an overriding narrative of power dynamics, whether from powerful charities or clinicians. This is worth looking out for, whoever you are.

 

@dr_shibley

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My book ‘Frailty: from assets and deficits to resilience’ will be published in early 2018

I am pleased to announce that my book ‘Frailty: from assets and deficits to resilience’ will be published early next year. I am honoured that the two main forewords to the book will be by Prof Kenneth Rockwood and Prof Adam Gordon. Both Rockwood and Gordon have contributed excellence in research. It is not inappropriate to describe Rockwood as a world leader, whose research into frailty has ranged from mathematical modelling of deficit accumulation to social vulnerability and inequality.

For me – the discussion which must be aired generally is “What makes us healthy?”, as well as “What makes us ill?”

Unfortunately, this discussion appears to have been rather muted thus far for frailty.

“Frailty” generally describes how our bodies gradually lose their in-built reserves, leaving us less resilient and much more vulnerable to dramatic, sudden changes in health triggered by seemingly small events such as a minor infection or a change in medication or environment. Epidemiology suggests that as many as ¼ of people above the age of 80 could be classified as ‘frail’ in the UK, which means that there is a material risk of pathologising ageing. In medicine, frailty tends to refer to a group of older people who are at highest risk of adverse outcomes such as falls, infections, disability, admission to hospital, or the need for long-term care. There are important nuances in how frailty is defined, and there is a discussion now to be had whether the perception of frailty is necessarily all negative in keeping with a pathogenic medical model. This means framing the rather specialised field of frailty within health and social care with much more meticulous detail, where scientific progress is not divorced from the wider discourse of ageing. I intend that this book will be a thought-provoking original contribution to the literature, and will stimulate much needed debate by all stakeholders.

I feel a new book is desperately needed, given that a large part of care of the elderly service provision in the NHS and social care is currently being oriented towards persons living with frailty. There are virtually no books available at all in this important subject area. Conversely, there has been in recent years a huge volume of guidance from the NHS and various agencies on frailty.

The topic of frailty is not an issue of concern only for the medical profession – other professionals, practitioners and academics have important views too, as well as patients themselves self-managing the condition and carers. By fixating on all the deficits might lead to an error where insufficient attention is given to building up strengths (e.g. good bone strength, nutrition, exercise). Unpacking biases in this debate leads to a rather different view of frailty to the one we currently have.

At the current state of play, frailty is in a danger of being inadequately discussed by both health and social care of what it actually means for whole systems and ethical attitudes towards those persons who are frail. Frailty has been notoriously difficult to identify accurately, although progress has been made in relation to measuring it and also in relation to quality of life. Building up strengths is fundamental to the ‘assets based approach’ pivotal to promoting wellbeing in frailty care, and empowering people with frailty using this construct might also go some way to the stigma generated by a frailty label. This approach puts emphasis on building on what people can do (rather than cannot do), and gets out of the attitude that patients once declined are effectively put into an irreversible ‘downward spiral of decline’. In fact, I successfully argued such an approach in a previous book ‘Living well with dementia’ (CRC Press, 2014), which won “Best Book of the Year Award” for the BMJ Book Awards 2015.

There seems to me, contemporaneously, a real gap in the book market for a competitively priced book on frailty, suitable for anyone interested in this subject, which draws on cutting-edge multidisciplinary strands, which also gives due attention to political and ethical concerns. The book will address this gap, and reflect latest state of the art clinical research and service provision on frailty at the time of publication.  Furthermore, this book would mark an innovative, original contribution to the current literature in not placing the discussion so firmly placed on deficits. I wish to re-orient the narrative towards wellbeing, and the interaction between personhood and the environment, and how different approaches such as advocating human rights or co-production might see better engagement of persons who are frail with the health and care services.

Key features (for example, why is the book unique, well suited to the needs of readers?)

  • Critical evaluation and analysis of current worldwide literature on frailty.
  • Frailty framed originally in the context of salutogenesis in promoting wellbeing, whilst building on the latest biomedical evidence.
  • Will be a useful read for all professionals and practitioners wishing an introduction to the field.
  • Overview of the whole academic and practitioner field of frailty – not solely confined to a particular subject area, e.g. ‘survival analysis’ or ‘sarcopenia’.
  • Written in an easily accessible and inclusive style
  • Not simply seeing ‘frailty’ through a medical prism, i.e. focused on deficits, but a more holistic approach emphasising assets and resilience, consideration of the society, the social model of disability and sociological principles.
  • A focus heavily emphasising personhood and the environment.
  • Use of figures and tables to make reading the text enjoyable.
  • “Key points”/ “pointers”
  • Written by an experienced researcher in care of the elderly medicine with a proven record of outstanding academic books.

Table of contents

ToC

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We need to talk sensibly about frailty

My book on frailty will be published next year. I intend to review the current global peer-reviewed literature on frailty, and argue that  the account as is takes to fail into consideration adequately a narrative based on health assets and fails to address the stigma and labelling considerations either.

 

 

 

It’s great that frailty as a ‘brand’ is getting so much publicity, but is it all the right kind of publicity?

 

For example,

 

Our treatment of the frail elderly is a national scandal”, Sunday Express, 8 March 2011

 

(cited in Manthorpe and Iliffe, 2015)

 

But some of the copy has been to generate a “moral panic”, defined as a feeling of fear spread among a large number of people that some evil threatens the well-being of society.

 

Stanley Cohen (1973) states that moral panic happens when “a condition, episode, person or group of persons emerges to become defined as a threat to societal values and interests”.  You can sometimes feel this with the reported crushing burden financially of ‘frail elders’ on the NHS and social care.

 

It is generally agreed that frailty is characterised by increased vulnerability to stress due to decline in homeostatic reserve secondary to dysregulation in various multiple interrelated systems. Frailty is a multifactorial syndrome that represents a reduction in physiological reserve and in the ability to resist environmental stressors. Age-related frailty is related to adverse health outcomes.

 

But framing ‘frailty’ entirely through deficits is arguably problematic even if somewhat convenient for medical profession. I wish to look at this in my blogpost, but also two issues which I feel are rarely mentioned: (a) the stigma of frailty, (b) frailty with an assets-based approach.

 

Too often, individuals can be reduced to a “list of problems” to be solved very quickly. Because of a mutual drive for certainty despite complexity, the heuristic, often deployed on the general medical take, is to decide whether a patient is frail – or not. This is of course partly at the whim of diagnostic criteria in operation at any one time. For example, Fried and colleagues (2001) have defined the presence of the frailty phenotype based on the presence of three or more of the following physical criteria: weight loss, exhaustion, physical activity, walking time, and grip strength. People are classified as frail if they meet three or more of these features, pre-frail if they meet one or two, and non-frail if they do not meet any of the criteria.

 

But in reality –  frailty is not really an all or nothing phenomenon.

 

As elegantly argued by Romano-Ortuno and O’Shea (2013), it can be difficult to place people on the ‘frailty continuum’. Whilst wellbeing is not simply the absence of illbeing, according to the current quality of life research anyway, it is reasonable to view people as lying on a continuum between ‘fitness’ and ‘frailty’. It seems that the rate of increase in the accumulation of deficits is an estimate of the rate of aging, and, in general, the “frailty index” characterises individual health across the fitness-frailty continuum from the fittest (those who compared to others at their age, have accumulated just a few health problems) to the frailest people who, having accumulated many more problems than have others of their age, are the most vulnerable to stresses (Mitnitski, Song and Rockwood, 2013).

 

The word ‘frailty’, though, itself is interesting.

 

The word ‘frailty’ is defined in the Oxford English dictionary as “the condition of being weak and delicate”. A comment is made that the word in part derives from the Middle English (in the sense ‘weakness in morals’): from Old French frailete, from Latin fragilitas, from fragilis (see fragile). The modern idea of stigma owes a great deal to the seminal work of Erwin Goffman.  According to Goffman (1963, p. 3), stigma is an attribute that extensively discredits an individual, reducing him or her “from a whole and usual person to a tainted, discounted one.”  Stigmatising “stereotypes” are generally widely shared and well known among members of a culture, and they become a basis for excluding or avoiding members of the stereotyped category. This sense of otherness is a barrier to societal inclusion.

 

An aim of encouraging health in frailty is to build up physiological resilience, broadly defined as the ability of an organism to cope with a challenge, and return to normal baseline function following the pertubation. Common challenges include surgical stress or bone fractures. Engaging or “activating” patients is currently a policy priority. It is crucial for positive living and enhanced quality of life. It also motivates patients to assume the management of their own health. But the experience is from other conditions, including HIV and dementia, is that stigma can be a significant barrier to self-management,

 

In the recent study from Puts and colleagues (2017), it was mentioned that stakeholders spoke about the stigma regarding frailty and suggested it should addressed; as very few people want to be labelled as ‘frail’, which makes inviting them into possible programmes to prevent frailty even more difficult. Recent stakeholder research published by Age UK in conjunction with the British Geriatrics Society  (Age UK, 2015) noted that respondents universally regarded the word ‘frail’ as a negative label. Older people described frailty as something they could recognise in others but which they would never use to describe themselves.  Furthermore, a qualitative study of 29 older people aged 66–98 years found that ‘most participants actively resented the identity’, even those who could be classified as frail using objective criteria (Warmoth et al., 2015). The frailty label may be rejected or resisted as individuals struggle to maintain a positive self and postpone an identity crisis (Fillit and Butler, 2009).

 

To balance the narrative regarding frailty, I think it’s imperative that assets must be given due weight. Assets can be described as the collective resources which individuals and communities have at their disposal, which protect against negative health outcomes and promote health status.  An asset based approach makes visible and values the skills, knowledge, connections and potential in a community. It promotes capacity, connectedness and social capital.  Asset based approaches emphasise the need to redress the balance between meeting needs and nurturing the strengths and resources of people and communities.

 

One “asset” might be to reduce the “fear of falling” which leads to a decline in daily physical activity, quality of life, a change in gait parameters, an increased risk of falling and a loss of self-confidence, which in turn may lead to a complete loss of independence. This could be achieved through psychological therapies aimed at building confidence. Recent evidence confirms the importance of both quantitative (energy intake) and qualitative (nutrient quality) factors of nutrition in the development of frailty syndrome in older adults (Lorenzo-López et al., 2017).  Boosting nutritional assets through “prehabilitation” might build up resilience sufficiently for a frail person to avoid delirium after a general anaesthetic. Finally, the psychological benefits of social integration potentially have the capacity to displace money as a source of status and self-worth (Richards, 2016).

 

The irony is, that in the supposed promotion of person-centred care, there has been an explosion of initiatives focused on diseases, such as “frailty care pathways”, “frailty units” and “frailty checklists”. And this approach might inadvertently exacerbate ‘otherness’ or lack of inclusion. But if patients don’t feel happy with their brand identity as frail due to stigma, it might prevent them from engaging optimally with health and social care services. By focusing on assets too will take the narrative away from one solely to do with deficits, and I feel that this can only be a good thing.

 

 

 

References

 

Age UK. (2015) The British Geriatrics Society, Britain Thinks. Frailty: Language and Perceptions. A report prepared by BritainThinks on behalf of Age UK and the British Geriatrics Society https://www.nursingtimes.net/Journals/2015/07/23/o/e/e/Age-UK—BGS—Frailty-Final-Report.pdf.

 

Cohen, S. (1973). Folk Devils and Moral Panics: The Creation of the Mods and Rockers. Paladin.

 

Fillit, H., Butler, R. (2009), “The frailty identity crisis”, Journal of the American Geriatric Society, Vol. 57, No. 2, pp. 348-352.

 

Fried LP, Tangen CM, Walston J, Newman AB, Hirsch C, Gottdiener J, et al. Frailty in older adults: evidence for a phenotype. J Gerontol A Biol Sci Med Sci. 2001;56(3):146–156. doi: 10.1093/gerona/56.3.M146.

 

Goffman, E. (1963) Stigma, London: Penguin Books.

 

Lorenzo-López L, Maseda A, de Labra C, Regueiro-Folgueira L, Rodríguez-Villamil JL, Millán-Calenti JC. Nutritional determinants of frailty in older adults: A systematic review.  BMC Geriatr. 2017 May 15;17(1):108. doi: 10.1186/s12877-017-0496-2.

 

Manthorpe, J, Iliffe, S. (2015) Frailty – from bedside to buzzword, Journal of Integrated Care Vol. 23 No. 3, pp. 120-128.

 

Mitnitski A, Song X, Rockwood K. Assessing biological aging: the origin of deficit accumulation. Biogerontology. 2013 Dec;14(6):709-17. doi: 10.1007/s10522-013-9446-3. Epub 2013 Jul 17.

 

Puts MT, Toubasi S, Andrew MK, Ashe MC, Ploeg J, Atkinson E, Ayala AP, Roy A, Rodríguez Monforte M, Bergman H, McGilton K. Interventions to prevent or reduce the level of frailty in community dwelling older adults: a scoping review of the literature and international policies. Age Ageing. 2017 Jan 6. doi: 10.1093/ageing/afw247. [Epub ahead of print]

 

Romero-Ortuno, R, O’Shea, D. Fitness and frailty: opposite ends of a challenging continuum! Will the end of age discrimination make frailty assessments an imperative? Age Ageing (2013) 42 (3): 279-280. DOI: https://doi.org/10.1093/ageing/afs189.

 

Warmoth, K, Lang, A, Phoenix, C, Abraham, C. (2016) ‘Thinking you’re old and frail: a qualitative study of frailty in older adults, volume 36, Issue 7, pp. 1483-1500.

 

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I will co-author my 3rd book on dementia with Prof Rob Howard

Essentials of dementia
Shibley Rahman and Rob Howard
Jessica Kingsley Publishers 2018

There are about 900,000 people living with dementia in the UK.mThe Royal Colleges of Physicians have estimated that people with dementia can sometimes end up comprising even 25% of the acute medical take.

This short, inexpensive book, to be published early 2018 by Jessica Kingsley Publishers, will be a lively and informative quick reference guide for contemporary students and teachers of dementia covering all the essentials about dementia in a clear, jargon-free, sensible way as they negotiate their busy working life, as well as a concise guide to effectivestudy skills.

The recently published Dementia Core Skills Education and Training Framework is an extraordinarily usefulresource which  details the essential skills and knowledge necessary across the health and social care spectrum. Education, training and skills acquisition are all agreed to be a  hallmark of good dementia care.

This document should act as a landmark resource for anyone who is concerned, directly or indirectly, with educational aspects of dementia care. It should inform curricula, provision of educational courses and the development of projects in dementia

This original new title, my third book with Jessica Kingsley Publishers (but my fourth book overall), will be invaluable for anyone with an active interest in or responsible for courses in core skills and knowledge about dementia, for the purposes of further study or research, to access excellent guidance at his or her fingertips.

The book will consider why dementia awareness is important and why a timely diagnosis is so important, how principles in person-centred care are pervasive in all areas of dementia care such as communication or end of life, the importance of family carers, equality, diversity and inclusion in dementia care, and contemporary approaches in law, ethics and safeguarding.

With the workforce in mind, in particular social workers with an interest in mental health, nursing specialists in dementia, physicians and psychiatrists in training, as well as general practitioners, this book will be an up-to-date evidence-based review of the current field. The book will also help practitioners and professionals who wish to develop their skills in research and evidence-based practice, as well as leadership in transforming dementia care.

The text makes reference to best practice including current NICE guidelines and BPS advice on psychological therapy, and will consider also the current-state-of-play in the range of pharmacological interventions in particular cognitive enhancers and antipsychotics and potential for the development of new drugs.

This “all you need to know” new text will also provide practical support for anyone living with or caring for dementia, reflecting best practice in person-centred care promoting the person at the centre of living and care.

I’ve decided to invite Karen Dening, Head of Research and Publications at Dementia UK and member of INTERDEM, to write the foreword – and I am glad to say Karen has accepted.

The book will be co-authored by Prof Rob Howard. After undergraduate study at Cambridge and St Bartholomew’s Hospital in London, Rob joined the Maudsley Hospital in 1988 and became Professor of Old Age Psychiatry and Psychopathology at King’s College London in 2002. In 2015, he moved to the Division of Psychiatry at University College London, where is currently Professor of Old Age Psychiatry.

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An emphasis on outcomes not process is now much needed for dementia

Today was a pretty disastrous day for me as a member of the army of million unpaid family carers. Yes, I merely ultimately burnt dinner for us which I had slaved for for hours.

But I am enormously grateful to be in a loving relationship where it can be hard work – and I will definitely  still miss it.

I am trained as an academic physician in dementia, with both a research and professional, and personal, interest in the subject. Just ask anyone who has known me well for the last 25 years or so.

As an unpaid carer, but one of many, I don’t feel the aggrandisement of the words ’empowerment’ and ‘engagement’ are what I particularly want, though I think these interrelated concepts, popular with professional grant applicants, are very important.

As not a member of the ‘conference class’, I do not in any way resent those with the power, influence or ‘deep pockets’ fronting yet again conferences where the greatest and good can exchange best practice with one another.

As an unpaid carer, I think what I really desire are “dignity”, “time” and “space”. Of course these are not words which trip off the tongue of professional wonks or conference organisers, as they suffer from the perceived lack of ‘measurable outcomes’.

The managerial adage ‘if you value it, measure it’ unfortunately comes with some operational baggage, ‘if you don’t value it, don’t measure it.” To say I was alarmed at the lack of ‘caring well’ in “The Well Pathway for Dementia”, despite the consultation events which undoubtedly were seen to happen, is a mild understatement.

I don’t care about myself, but I do think it’s a kick in the teeth to those who are, or who are concerned with, unpaid carers, paid carers with parlous employment rights, clinical nursing specialists providing high quality care (including in end of life and palliative care), respite care (day centres, for example), care at home, and so on.

At the start of this year, I was able to celebrate with close friends and colleagues the launch of my third book on dementia, published by Jessica Kingsley Publishers, entitled “Enhancing health and wellbeing in dementia: a person-centred integrated care approach.”

My first book “Living well with dementia: the importance of the person and the environment”, written around the NICE Quality Standard 30, was published in 2014, and won best health and social care book of the year award for the BMJ Book Awards in 2015.

My second book, “Living better with dementia: good practice and innovation for the future” published in 2015, the first of mine to be published by Jessica Kingsley Publishers, with main foreword by Kate Swaffer was the one where I confronted eating well, incontinence, GPS ‘tracking’, whole person care, delirium, ‘sporting memories’, antipsychotics and diversity, to name but a few.

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Thanks to all my close friends who came to support me on this important day for me. All the speakers and all the delegates attended entirely free of charge – it was an amazing afternoon, I thought.

This third (and not the last) book reviewed extremely well from a wide range of interested parties. In this book, I considered what I perceived to be what elements of the integrated care pathway might need to be present.

After the diagnosis of dementia, which also can come with a sense of relief that there finally exists an explanation for a whole series of ‘difficulties’, many people describe their journey through the NHS and social care as baffling, perplexing and stressful.

At my launch event, I was lucky to be joined about a number of great speakers, who don’t often tour the conference circuit despite being heavily involved with aspects of topics which interest me in dementia.

I’d like to thank Majidur Rahman, a friend of mine from when I did my MBA 2011-3. Majidur meticulously archived the event in the film below in his rôle at Aleph Productions. Whilst it comes in at about 200 minutes, I hope you agree it provides a wonderful, illustration of what can happen when people come together with individual concerns and hopes.

I’d also like to thank Kate Swaffer, who kindly gave up time to see us all and to lead the discussion at the end of the day. Kate is CEO of Dementia Alliance International, the partner group of Alzheimer’s Disease International. For me, too much of what is not good in commissioning dementia is the obsession with unsound metrics. For example, whether or not you change hearts or minds in newspaper articles by saying or not ‘dementia victims’ in large font as the headline might not be covered with the overall number of ‘Dementia Friends’.

And special thanks to Lisa Rodrigues CBE – personal friend, personal inspirational mentor, fierce advocate for health – who hosted the whole afternoon for me brilliantly.

I agree with the need for public education about dementia, articulated well in the only English dementia strategy ‘Living well with dementia’ (Department of Health, 2009). I do, however, think it inappropriate to equate a multi-million pound intensely professionally marketed product, where the scripting of sessions is not only inflexible but also intransigent, with a ‘social movement’.

Measuring the wrong outcome is of course, whisper it, a cardinal sin. The ‘impact’ of dementia rights is not how many placards you can hold up saying you ‘like rights’ (in no way reversing the closure of law centres which happened around the time of the David Cameron Dementia Challenge 2012). It would, however, be relevant whether the national government listens to professional concerns over the alleged offences in the United Nations Convention on Rights for People with Disabilities (UNCRPD). Or whether the Care Quality Commission cares seriously about abuses in degrading treatment, privacy or liberty as actionable abuses of human rights.

I would like to suggest something now deeply politically incorrect now. You do need ‘experts’ to help make the case that ‘supported decision making’ for dementia might be abuse of the UNCRPD. Such arguments could be and should be coming from DAI as they negotiate policy at the world stage viz United Nations or World Health Organization.

Likewise, the success of empowerment and engagement cannot be necessarily gauged by the number of local groups run, the number of policy groups ‘influenced’ or the number of harmonised facilitation sessions executed according to strict guidelines. This for me is a triumph of market-led process over outcomes leading to the potential of high quality care.

I hope that you can find time to listen to our video above. It wasn’t “commissioned”, or “budgeted for”, and does not have “outcomes” which need “evaluating”, but it does convey the notion that some things fall outside of the scope of a dementia industry.

I have no doubt about the ‘feel good factor’ for these annual conferences. And I think it’s terrific that the #Dementia2020 organisers went out of their way a number of free places available. But these are the same speakers with the same tired messages with the same glaring omissions – for me only, but everyone’s different.

Here’s to a happy time for me earlier this year.

 

Enjoy!

Go, figure.

 

@dr_shibley

 

 

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Could educating the workforce in dementia become a real ‘social movement’?

social movement

 

Something extremely odd happened with “Dementia Friends”. Its growth rate was rather sluggish, until the floodgates to Dementia Friends Scotland suddenly opened, and then it became online so that you could become a ‘Dementia Friend’ through a quickie online click.

Call me old-fashioned, but this is not a social movement. This is clever marketing. Likewise if you market ‘Dementia Friends’ through the power of international marketing, and your friends in Big Charity abroad, that is not the same as creating a “global” social movement. That is called international marketing.

The beauty with homogenising ‘Dementia Friends’ into a McDonalds style Big Mac product, where everyone receives the same patties and cheese-based sauce, is that it is easy for bite size chunks about dementia to become propagated – perfect for a broad brush public awareness campaign. And it doesn’t need to be done by specialists, who are in the new post Brexit age overrated anyway.

This confusion about the limitations of ‘Dementia Friends’ has become a big problem for the propensity of some people to call ‘Dementia Friends’ “training”. It is categorically not training. It is not regulated by any of the clinical regulators. To sell ‘Dementia Friends’ as training is a mis-sell. To give the Alzheimer’s Society credit, they never themselves purport “Dementia Friends” as training.

I think it is more than a ‘big problem’ in fact. I think this has opened the floodgates to where Dementia Friends has been used as an inexpensive alternative to real training for staff in care homes who do need to be educated to a competent level, as far as a regulator is concerned, in dementia.

We, in the workforce, need to be crystal clear that social care and NHS are on its knees. It’s no good squirrelling away this money in the Budget for grammar schools, or a Brexit slush fund, when all clinicians need to be transparent and speak out openly against the dangerous cuts in care.

All this leads to me to say that clinicians and practitioners in dementia of whatever background, physiotherapy, speech and language therapy, occupational therapy, social care/mental health, physician or psychiatrist, should help in educating each other, about evidence-based good practice in dementia.

I think we should not wait to be selected as ‘special’ from Health Education England, or the such like, but we should use new media to educate the workforce as the situation demands it.

I’ve decided to get the ball rolling by publishing a free 100 page document on ‘Signposts to dementia care’ which sets out the major topics in the new Dementia Core Skills for Learning and Training Framework.

You can download my free document here.

I have produced this book without any funding or commissions at all. I suggest that if you have the time, you can help build a social movement where the workforce can become more dementia-literate in such a way that is not dependent on big corporate sponsorship. Many of us are simply sick of the growth of dementia being sold as a ‘product’ with more emphasis on where the next grant is coming from or the latest brand or PR stunt. There are powerful principles of health equity and universal coverage at stake.

 

@dr_shibley

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The need to match high quality services in dementia with education and training

maze

 

You can of course be forgiven for thinking you live in a ‘parallel universe’ as the NHS and social care get put under the Brexit bus as ‘there’s no money left’ tomorrow in the annual Budget.

 

I’ve just published a free online guide for current practitioners and professionals to help them in their learning about dementia.

 

http://dementiasoc.org.uk/wp-content/uploads/2017/03/V2-Signposts-to-dementia-care-Shibley-Rahman.pdf

 

This is not intended to replace, or to compete with, other platforms of learning. It’s simply to provide a perspective on the current aspirations in education and training in dementia, which may not be immediately obvious to people trained outside of the field of dementia.

 

The guide points to what I think is important about the current literature, but is based on the ‘Dementia Core Skills and Learning Framework’ published last year.

 

http://www.skillsforhealth.org.uk/services/item/176-dementia-core-skills-education-and-training-framework

 

This was commissioned and funded by the Department of Health and developed in collaboration by Skills for Health and Health Education England (HEE) in partnership with Skills for Care. Development of the framework was guided by an Expert Group including a wide range of health and social care organisations, relevant Royal Colleges and education providers.

 

Putting together this guide made it immediately obvious to me that the needs of people with dementia in ‘dementia friendly health and social care settings’ are often not met by traditional professional training, but coincide almost exactly with reports of needs elsewhere.

 

The Alzheimer’s Society is about to launch their updated ‘I’ statements. The original National Dementia Declaration described seven outcomes that people living with dementia and their carers would like to see in their lives.

 

A list of them is provided at

 

http://www.dementiaaction.org.uk/nationaldementiadeclaration.

 

Two examples are “I have the knowledge and know-how to get what I need” and “I live in an enabling and supportive environment where I feel valued and understood.”

 

Reflected in my guide, I give an account of the type of information currently available to persons with dementia who come into contact with health and social care services, including research. I think it’s important for practitioners and professionals to know what is out there, in order to be able to signpost to these resources effectively.

 

And dementia friendly environments are not simply wards which have had a lick of paint. In my guide, I signpost to the substantial evidence to what makes an environment ‘dementia friendly’, which might include staff culture or other person-centred behaviours.

 

I’m also struck by how this converges with the findings from Healthwatch, in a report “What do people think of dementia services?” from 19 January 2017.

 

http://www.healthwatch.co.uk/news/what-do-people-think-dementia-services

 

Healthwatch found that the availability and type of information regarding services and support following diagnosis helps to set the tone for the experiences of those with dementia and their carers.

 

They also found that more work needs to be done to make public spaces dementia-friendly by improving elements such as lighting and signage.

 

These findings indeed come from a substantial sample. Since the beginning of 2015, more than 1,000 people across the country have spoken to local Healthwatch about their experiences of dementia care – from the help provided by GPs to the support offered through hospitals and social care.

 

The most troubling Healthwatch finding, I felt, was that more generally, many people felt that the quality of services themselves was inconsistent, sometimes within the same locality.

 

Indeed, it js a stated learning objective of the guide for professionals and practitioners to know how to signpost to high quality services, including hospices and clinical specialist nurses, locally, including an awareness of multi-agency collaboration.

 

It is for me very pleasing to see a rights-based consciousness begin to embed itself from persons living with dementia and care partners. The international work promoting the United Nationals Convention of Rights of People with Dementia has been a big part of this.

 

But it is important that we ensure equality and equity in service provision, and while human rights are universal and inalienable, ‘I statements’ can all too often be driven from the perspective of the consumer and market.

 

And, of course, the overriding objective of the daily work in health and social care sectors will be that professional values, behaviours and skills will to provide the best care and support possible for persons with dementia and care partners to live as effectively as possible. In a person-centred integrated care approach, persons should be both enabled and protected in the right way, in the right place, and at the right time.

 

 

@dr_shibley

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Signposts to dementia care: core themes for learning

Download here.

There is little doubt, whatever your views on the current provision of dementia care in England, that ‘dementia’ is much more in the public’s consciousness compared to 2012 when the Dementia Challenge was launched by the then Prime Minister of the UK. The current ‘Prime Minister’s Challenge on Dementia 2020’, referred to several times in this booklet, can be found at https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/414344/pm-dementia2020.pdf. There is critically a need to align the success of the ‘Dementia Friends’ social movement (https://www.dementiafriends.org.uk),  spearheaded by the UK Alzheimer’s Society, with an improved consciousness of wider issues to do with dementia in healthcare settings beyond the traditional medical model. Putting ‘dementia friendly health and social care settings’ into practice necessitates a workforce which is literate in the key contemporary issues of dementia care beyond the biology, often identified in cutting edge research, and it is essential that all the members of the workforce are able to cut across their traditional subject interests, whether in physical health, social care, mental health, or otherwise.

 

In all of my dementia books, I have tried to cross traditional subject boundaries to draw on appropriate knowledge from other academic disciplines to reflect critically on the application of a strengths based person-centred approach to supporting the daily life of people with dementia. The HEDN (“A Curriculum for UK Dementia Education”) is an open forum for those who teach or manage courses related to dementia care based within Universities in the UK. As part of its commitment to improve professional education in dementia care, HEDN developed a Curriculum for Dementia Education.  This curriculum was designed to guide Higher Education providers in the key areas for inclusion in courses related to dementia care, at both pre-registration and post-qualifying levels, and is underpinned by a number of essential values and themes (https://www.dementiauk.org/for-healthcare-professionals/free-resources/download-the-curriculum-for-demenita-education/). I feel that Admiral nurses, from the leading charity Dementia UK, have been pivotal in educating the workforce, regardless of care setting, ranging from hospitals to hospices.

 

This booklet is designed to parallel another educational contribution as well. The “Dementia Core Skills Education and Training Framework” was originally commissioned and funded by the Department of Health and developed in collaboration by Skills for Health and Health Education England in partnership with Skills for Care (see for an overview http://www.skillsforhealth.org.uk/services/item/176-dementia-core-skills-education-and-training-framework). My main concern is that people who don’t work in dementia or meet people living beyond a diagnosis of dementia routinely may not be able to see ‘the wood from the trees’ in understanding dementia. This could be due to a plethora of reasons – not least for not having time or resources to attend expensive conferences on the subject. It is essential that research and services are not built around the needs of researchers and institutions, and failure to recognise this can easily explain why some professionals and practitioners operate in a mindset that people with dementia and care partners are passive recipients not active partners of care. My ‘signposts’ in this booklet are not commissioned by anyone for any money. So, therefore, I feel I’ve been able to speak my mind about what’s best in current practice and research. I have done this work out of goodwill entirely pro bono.

 

 

The potential target audiences differ according to different ‘tiers’:

 

Tier 2: Health and social care staff who regularly work with people living with dementia including staff providing direct care and support.

 

Tier 3: Key staff (experts) who regularly work with people living with dementia and who provide leadership in transforming care including social care managers and leaders. A recurrent goal is for the learner to be able to contribute to the development of practices and services that meet the needs of families and carers.

 

I should, however, like to include in this “experts” who live beyond a diagnosis or are care partners. You could do little better, as a professional or practitioner, for example than to read the blog of ‘Dementia Alliance International’, a stakeholder group of people living beyond a diagnosis of dementia and non-profit organisation.

 

I cannot take responsibility for the content in third party hyperlinks or papers, and this document is not to be taken as professional advice. You are strongly recommended to use this brief document as a resource of ‘signposts’ alongside any other learning you are participating in.

 

I have written about many of the topics one way or other in my three books on dementia, listed below:

 

Rahman, S. (2014) Living well with dementia: the importance of the person and the environment, Oxford: CRC Press.

Rahman, S. (2015) Living better with dementia: good practice and innovation for the future, London: Jessica Kingsley Publishers.

Rahman, S. (2017) Enhancing health and wellbeing in dementia: a person-centred integrated care approach, London: Jessica Kingsley Publishers.

 

The free information provided through the Alzheimer’s Society is excellent, and meets the standard for the NHS Information Standard (https://www.alzheimers.org.uk/homepage/250/publications_about_dementia )

 

There are additional ways of keeping up with innovations in dementia service education and learnong: for example, “Dementia Pathfinders” http://dementiapathfinders.org.  I should like you especially to use this booklet as a ‘launchpad’ for your further studies into what dementia is, its significance for people living with dementia, friends and family. Whatever your specialty, I should strongly urge you to seek further education in dementia, in whatever form that takes. Please feel free to evaluate critically what you read here to improve the quality of discourse.

 

London, March 2017

 

 

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Enhancing health and wellbeing in dementia. Book launch in the Arlington Centre, Camden.

When all is said and done, I am not a big fan of the social care and NHS services being run down, with the reassurance that if you did deep into your pockets and promote a certain type of research into dementia there might possibly be a cure for dementia by 2025.

I’d like to thank @MrTopple, Steve Topple, for this outstanding article in “the Canary” explaining my motivation behind writing a trilogy of books on dementia.

The third, and final book, I felt built on my two previous books on dementia in providing an overview of what the overall care pathway might look like. The book was published by Jessica Kingsley Publishers on 19 January 2017, and is entitled “Enhancing health and wellbeing in dementia: a person-centred integrated care approach.”

Thanks enormously to my publishers, Jessica Kingsley Publishers, for great support in providing a selection of dementia books including mine for the afternoon.

The book follows the following ‘planks’.

Six themes

Thanks very much to the Arlington Centre, Camden, for hosting this third book launch. I was pleased we had a great mix of around fifty people there, including Prof Dawn Brooker who has written extensively on person-centred care in dementia.

Kate Swaffer led the discussion at the end of the programme of talks, in response to the topics covered.

Photos of the event

failure in person centred care

haha

Lisa and Dig Dog

ripal 2

Nicky Ripaljeet

Gina2

Gina 1

Jo

wellbeing

Yvonne and Jo

Another Reinhard

Lisa Kate and Marian

what goes look like

Lucy cost 0

Sarah

Kate and Lisa

Kate

Reinhard and Hilary

Angela and Hazel

M S robot

shibley signing

Disc

Reinhard

Terrific afternoon

andy tysoe

shirley

some books

group

hilary alan jo

maneesh

more books

andy and ripaljeet

andy rebecca

rebecca

ripaljeet

ripaljeet andy

suzie and kate

Presentations

Enhancing health and wellbeing in dementia

Enhancing health and wellbeing in dementia from Shibley Rahman on Vimeo.

Discussion extract (chaired by Kate Swaffer)

Promoting wellbeing in care homes: Yvonne Manson and Joe Walker, Balhouise Care

Preventing excess disability in dementia through psychological therapies, Reinhard Guss

Living alone with dementia, Jo Moriarty

Person-centred care in acute hospitals: a clinical specialist nurse’s view. Lucy Frost

Supporting well in dementia care in the future, talk by Maneesh Juneja

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