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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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Should we use ‘scare tactics’ in promoting the urgency of dementia?

 

A very fortunate happened yesterday. A London black cabbie had promised me to drive me to the ExCeL centre in London, if I paid him, to attend first day the main conference of the Alzheimer’s Association International Conference.

 

This year, there are no ‘sunny uplands’. There is normally pretty active pre-briefing of the latest phase III trial of a possible cure for dementia. Not this year.

 

But I found the atmosphere of all the junior and senior scientists to be ‘buzzing’. The amount of detail and rigour in scientific method in discovering the neural susbtrates of brain function, of relevance of Alzheimer’s disease, was phenomenal.

 

I last did my Ph.D. in Cambridge between 1997 and 2000 with Prof John Hodges, a world expert in the frontotemporal dementia form of dementia. Frontotemporal dementia is still an important cause of dementia.

 

That black cabbie told me how his mother had been ultimately diagnosed with dementia, although she was first misdiagnosed with dementia in a hospital by a locum doctor when she had a urinary tract infection. She didn’t know what day of the week it was. She thought she was in a hotel. She had heard of Margaret Thatcher though.

 

There is clearly progress being made in the accuracy of diagnosing dementia through biomarkers in cerebrospinal fluid. But I was a junior physician at the National Hospital for Neurology and Neurosurgery, it used to take me at least 30 minutes to get this sample off a patient from using a special needle. And even then that was for inpatients.

 

The aim is with a sophisticated knowledge of the molecular biology of the process causing an individual’s dementia we might be able to slow down its progression more effectively.

 

This is of course partly an admission that the current method of diagnosis by ‘clinical acumen’ is subject to too much error, but the essential issue remains that many in the UK still don’t receive their diagnosis of dementia on time. And the subsequent post diagnostic care and support, for both an individual with dementia and carer, can be not that good.

 

You can’t help feel but proud at the sheer devotion of the scientists around the world, in ‘fighting dementia’, but I on the whole wish they would simply say they love neuroscience. An orange being stripped of its segments and peel, from an advertising company for the Alzheimer’s Research UK, both attracted massive praise and some criticism.

 

Terms such as ‘burden’ still continue to exist with dementia, and there’s no doubt that there are negative aspects to dementia. But I know from close family, who are loved ones, who happen to have dementia, that there’s a lot more to them than the certainty of their diagnoses (or not).

 

 

@dr_shibley

 

 

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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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Dementia means dementia – especially for the dementia industry

££

 

The phrase “Brexit means Brexit” epitomises a political farce of the highest magnitude, as no-one, not least Jean-Claude Juncker, knows what Britain ‘leaving’ the European Union will look like.

 

Brexit could mean leaving the single market altogether, halting involvement with the Customs Union, or even withdrawing from the jurisdiction of the European Court of Justice. No-one knows yet.

 

An equally fatuous assumption in the Prime Minister’s Dementia Challenge, where the Prime Minister in question was David Cameron, was that ‘dementia means dementia’.

 

In a world where the CEO of a dementia charity would now become the most influential person in dementia, not a hardworking FY2 grade working in an overloaded memory clinic in a large teaching hospital, dementia was reborne as a lucrative brand and industry.

 

The boon to PR agencies and marketing gurus was not felt by the managed decline of social care and social work, to all extent airbrushed from all policy documents on dementia from the current administration of the UK.

 

The systematised demise of health and social care systems, where experts were valued not rubbished, ran in parallel with the assumption that ‘there is no magic tree’. But as Noami Klein of ‘shock doctrine’ fame correctly pointed out on the Andrew Marr Show this morning, this myth was well and truly busted with the multi-billion pound recapitalisation of the banks after the global financial crash.

 

Whatever the ‘divorce bill’ for the European Union, we’ll pay it. But – to pay the workforce properly to optimise care and to prevent burnout, hmmm… “Cost neutral” dementia friendly communities, with dementia-friendly mail-order catalogues and obliteration of the supply of social housing, could easily pick up the pieces.

 

The pathway of top directors in dementia charities and social enterprises earning lucrative salaries in the dementia industry is deliverable only if some volunteers with dementia act as ambassadors with their travel expenses. There’s no money left for social work or social care, or for nurses, in Lewisham, but there is miraculously money for research and development in a California-based Pharma start-up.

 

It would then become all too uncommon for specialists in dementia to get routinely omitted from discussions or conferences on dementia, with engagement officers and ambassadors ‘too busy’ networking or promoting their charities and social enterprises to talk to clinicians or practitioners working daily in dementia care.

 

Like there are a hundred and one permutations to leave the European Union, there are over a hundred different causes of dementia. The idea that GPs could simply ask ‘have you had memory problems?’ to diagnose dementia was sadly a bit of fake news which took hold after the Prime Minister’s Dementia Challenge.

 

Every clinician with competence in dementia knew that the visual hallucinations in Lewy body dementia or the profound behavioural changes in frontal dementia would not easily get caught by this particular working definition of dementia, however good the marketing of young onset dementia charities.

 

“Virtue signalling” from dementia charity never has had it so good: loosely defined as “many people say or write things to indicate that they are virtuous”. So, intergenerational dementia might mean sitting together in a heavily branded “dementia friendly church” or teaching 3 year olds how to diagnose dementia in primary school (when senior clinicians have been inexplicably failing for decades), not asking very high-income youngsters to pay their taxes.

 

Of course, given the actual complexity of dementia, it is indeed impossible to talk convincingly of a single cure for dementia, even if the refashioning of existant drugs such as trazodone might be hyped up as the brand new cure somewhat beyond reasonable expectation.

 

But it is this promise of the bright future for dementia, for a ‘world without dementia’ or ‘ending dementia’ as espoused by large charities, which is the promised land. Meanwhile, one is encouraged to right to be resentful to pump money into promoting health and social care, in much the same way you should get rightfully get angry at paying your subsidies to the European Union.

 

Bring on the ‘twiddlemuffs’ and the audio playlists to improve the wellbeing of everyone with dementia. As far as I feel, the cure for dementia was a lie so large it should have been put on the side of a bus, but this is a world where anything goes, including reinforcing tower blocks with combustible cladding to give people council tax rebates.

 

@dr_shibley

 

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