Tag Archives: Shibley Rahman

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Were ‘dementia friendly communities’ the correct approach after all?

apps

Some time ago, the Alzheimer’s Society embarked on a programme of making a million (then two million etc.) “Dementia Friends”. These “Dementia Friends” were community ambassadors, not specialists in dementia, who went out to explain in standardised 45-minute chunks what dementia is.

To gauge how successful it has been has turned out to be rather difficult. To the best of my constructive knowledge, despite this investment costing millions, there has never been a peer-reviewed publication on the outcomes of that programme which consumed significant public money. The simple fact is, if this had been a project run by a social enterprise, it would have been subject to the most detailed of examination on value-based returns on investment.

I have no ideological beef with the Alzheimer’s Society. Far from it, I think in the last few years they have been uniquely successful in raising the brand awareness and brand identity of themselves and dementia. When the Health and Social Care Act (2012) was torpedoed by parliament, placing an emphasis on competitive tendering (despite much protesting otherwise), this was a useful competitive advantage for a lot of dementia policy.

There are well rehearsed arguments of where “dementia friendly communities” have been criticised, not just for the United Kingdom but in Japan. For example, it has been mooted whether the programme was primarily for the benefit for actual people living with dementia (here defined as people who’ve been diagnosed with dementia, not merely living with someone with dementia), or a carer. Or neither – it might have been primarily for the benefit of a high street shop or bank. Anyway, at the time, the ideology of behavioural insights and Nudge was beginning to gain momentum.

Indeed, Dementia Alliance International and Alzheimer’s Disease International, and indeed I, had some success in changing the vocabulary aware from ‘friendliness’, which for some denoted a rather patronising twang of ‘does he take sugar?’, to one of inclusivity and accessibility.

Where the Dementia Alliance International then had undoubted success, with the work of Kate Swaffer and Peter Mittler predominantly, was having ‘first mover advantage’ in realising the relevance of the United Nations Convention of Rights for People with Disabilities to the lives of people with dementia. I then discussed the importance of this to the World Health Organization’s policy of sustainable development goals, long before others “joined in”.

But I’m tempted now to heat and eat a strong dollop of humble pie. On the one hand, I have argued, quite vociferously, that promoting health must be a component of promoting wellbeing, and it was hard to sustain positive outcomes in dementia friendly communities against a backdrop of austerity or cuts, or a NHS and social care system perceived by many to be struggling to meet demand due to inadequate funding.

But actually, as put forward by the Alzheimer’s Society themselves, the experience of someone living with dementia, and his or her immediate friends or family, does not stop in a GP’s surgery or an acute admission. There is a wider community, where housing and transport could be ‘dementia friendly’.

Apart from a separate argument of whether it is appropriate to address persons in identity by one of their principal diagnoses (a conflict with person-centred approaches), it is evident to me that there is a strong argument for addressing the health assets of all people.

Indeed, as Chris Roberts, a leading campaigner in the UK said, and I hope that I’m not misquoting him, what is likely to be ‘dementia friendly’ is likely to be friendly for everyone. Should there be also  “frailty friends” or “cancer friends” for balance?

Taking a medical model of dementia even characterised by complexity and comorbidity, Chris’ approach is practical. Also, a move towards dealing with health assets would be a direct way of addressing health inequalities or the social determinants of health.

It also attempts to address the question of ‘what makes you healthy?’ as opposed to ‘what makes you ill?’  I feel that you can only measure value but asking people to identify what outcomes matter to them (ask ‘what matters to you?’ rather than ‘what’s the matter with you?’)

I remember first criticising ‘dementia friendly communities’ saying that it should be ‘dementia friendly networks’ (or similar), reflecting a potential online connectivity of all persons. But I am inclined to do a volte face on this too, in that it might not be possible to address all inclusion needs for people living alone with dementia from an app on a smartphone. As it happens, these are exactly the sorts of people who are genuinely ‘seldom heard’ at all – not just in conferences, but seldom heard from the NHS and social care radar until crisis point is sadly reached.

I think it’s now likely a more pro-active approach with advance care planning is needed to promote health assets for older people living with dementia and/or frailty. This is not simply a question of bean-counting, for the avoidance of admissions. This is not simply a question of reducing mortality or reducing morbidity, or being more cost effective. This, I feel, is good common sense?

 

@dr_shibley

 

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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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My first ever podcast for ‘The Dementia Monologues’ – on rights and dementia

human-rights

 

In 2015, I published a chapter in my second book on dementia, entitled ‘Living better with dementia: good practice and innovation for the future’, chapter 13 here. This contains a review of the cu

I am now proud to introduce my first ever podcast in a series which I have called ‘The Dementia Monologues’. It is on the subject of ‘dementia rights’.

 

The text of my podcast is below, in case you’d prefer to read it.

 

My name is Dr Shibley Rahman – and I am an experienced researcher, and a academic physician and academic lawyer by training.

 

This is the first of my series of podcasts which I’ve called “The Dementias Monologues”.

 

I hope you like them.

 

The law can be an ass, and its problem is that it represents only one source of rights.

 

As an advocacy tool, to say you have rights is important. Just look at Rosa Parks.

 

Civil rights activist Rosa Parks refused to surrender her bus seat to a white passenger, spurring the Montgomery boycott and other efforts to end segregation.

 

But it is the case that the law (and, more precisely, the State) considers itself ‘within its rights’ to deprive you of your liberty, under certain circumstances.

 

People beyond a diagnosis and care partners are crucially different in one aspect at least – they are not criminals, but coming to terms with a medical diagnosis.

 

The issue comes when certain features quite unique to dementia, such as loss of decision-making capacity, can interfere with the State’s decision to deprive you of your liberty.

 

And views differ somewhat astonishingly.

 

Like most law, there are nuanced arguments, but it is my contention that placard or shroud waving about rights is not enough at a local level for this, although it is strongly desirable to imbue an ethos of ‘rights activism’.

 

Reading something recently reminded me of how my own late father has been passed up for an opportunity on account of him being “colour-blind”.

 

Visual disabilities are interesting, but these disabilities occupy an unique position at the cusp between physical and mental health.

 

In fact any physical pathology in the visual pathway from retina to cerebral cortex in the brain can lead to an alteration in visual perception.

 

Visual disabilities are therefore interesting as they represent the entire spectrum from the medical model to the social model of disability.

 

Cataracts, or opacities of the lens in the eyes, are entirely peripheral.  Monet’s change in colour styles can be attributed arguably to his development of cataracts.

 

Cataracts can be ‘fixed’ medically as a day case surgery with laser treatment.

 

Compare this on the other hand to a dementia which affects the higher order visual processing in the brain.

 

This could happen, for example, in any dementia such as Alzheimer’s disease, and gets called ‘posterior cortical atrophy’.

 

But that is not the whole story.

 

“Rights based approaches” hardly trips off the tongue, and it took me considerable time to get to the bottom of what it’s all about.

 

The last big thing, a ‘dementia friendly community’, I feel, was wrong at so many levels.

 

The word ‘friendly’ was wrong, furthering a sense of oppression in a community which was far from homogenous in the first place.

 

At best it was merely patronising.

 

It further consolidated the notion of people who happened to have been given a diagnosis of dementia as passive recipients of services.

 

The human rights approach is not simply a list of possible ‘nice to have’ legal rights from your local Citizens Advice Bureau.

 

It is a CRITICAL way of holding large healthcare providers to account at one end, in terms of upholding dignity, privacy, and so on, and also in promoting the fundamentals of citizenship.

 

The Law Commission in their recent pamphlet (No 372) entitled “Mental Capacity and Deprivation of Liberty”, I felt, set out rather neatly the various problems with this area highly relevant to people living with dementia.

 

“It is not acceptable to continue with the current system where many people’s rights have become theoretical and illusory.”

 

In European rights convention law, a major instrument governing human right, article 5(1) of the European Convention on Human Rights provides that no-one shall be deprived of liberty unless the deprivation is carried out in accordance with a procedure prescribed by law.

 

It is necessary in a democratic society on one of a number of grounds (including, notably, “unsoundness of mind”).

 

Article 5(4) provides that everyone deprived of their liberty is entitled to take proceedings by which the lawfulness of their detention shall be decided speedily by a court, and their release ordered if the detention is not lawful.

 

In summary then, the underlying aim of Article 5 is to ensure that no one is deprived of liberty arbitrarily.

 

This essential human right belongs to everyone – including, crucially, people living with dementia.

 

I believe therefore in ‘dementia activism’, therefore, there should be practical operation of campaigning for rights.

 

It is true that human rights are universal and inalienable, but also for people in England and Wales nobody is above the law (the ‘rule of law’).

 

This is the practical heart of the issue.

 

For example, on 19 March 2014, the Supreme Court handed down its judgment in “Cheshire West”.

 

Lady Hale, giving the leading judgment, held that human rights are the same for everyone.

 

As Lady Hale put it (at paragraph 33):  “The first and most fundamental question is whether the concept of physical liberty protected by article 5 is the same for everyone, regardless of whether or not they are mentally or physically disabled.”

 

In particular, the judgment undoubtedly “pushes to centre-stage the understanding that human rights are universal and that what it means to be deprived of liberty must be the same for everyone, whether or not a person is disabled“, as indeed stated by the Law Commissioners recently.

 

The nuclear weapon for people with dementia I feel is the UNCRPD.

 

And the nuclear arsenal is completed by two incredibly influential advocates who “mean business”.

 

Prof Peter Mittler CBE and Kate Swaffer of Dementia Alliance International, a powerful advocacy group run by and run for people with dementia, ensured that the UNCRPD rose to the top of the agenda.

 

UNCRPD stands for the ‘United Nations Convention on Rights for People with Disabilities.”

 

There are two articles in the UNCRPD which I think can be used to uphold the rights of people with dementia in the jurisdiction of England and Wales.

 

One of Articles of note is Article 12.

 

Article 12 of the UN Convention on the Rights of Persons with Disabilities provides that disabled people are entitled to legal capacity on an equal basis with others in all areas of life.

 

Crucially, Article 12(3) obliges State Parties to provide access to the support that disabled people may require in exercising their legal capacity

 

Rights are not the only solution, however.

 

If a 55 year-old female with dementia in a wheelchair, also living with multiple sclerosis, finds herself discriminated against, she might also have a valid claim in sex discrimination, age discrimination, or disability, depending on the material facts.

 

But to ignore the impact of inadequately addressing physical and mental health issues, as well as accommodation of disability, are significant barriers to participation in dementia friendly communities.

 

As Lady Hale put it (at paragraph 33):

 

“The first and most fundamental question is whether the concept of physical liberty protected by article 5 is the same for everyone, regardless of whether or not they are mentally or physically disabled.”

 

I feel, particularly, that a rights based advocacy offers a mechanism to campaign as a social movement.

 

People with dementia, numbering 47 million in the world, deserve to be treated as equals, not just to be ‘friendly to’.

 

Victimhood is sometimes unwittingly exacerbated by big corporate fundraisers – which is why we all need to be vigilant.

 

A rights based approach may help to reset the compass on a certain perception of dementia.

 

There’s nothing too small to make a difference.

 

“Anyone who doesn’t believe that small things don’t make a difference obviously has never slept with a mosquito.”

 

That’s from Malcolm Tucker.

 

Yes – for rights based advocacy, it’s important also to ‘sweat the small stuff’.

 

@dr_shibley

 

 

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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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My final book on dementia: on a person-centred approach to enhancing health and wellbeing

The title of the book reflects the fact every person has a human right to health, and that wellbeing is a critical part of wellbeing. It was published earlier this month by Jessica Kingsley Publishers (page including pre-publication reviews here).

 

Many of the issues raised in the book coincidentally have been raised in the draft World Health Organization global ‘draft action plan’, worth a look at here http://apps.who.int/gb/ebwha/pdf_files/EB140/B140_28-en.pdf, published 23 December 2016.  It is felt that while this document is not ‘perfect’ it is a good start. For example, the palliative care approach is specifically signposted in clause (56).

 

People are entitled to the best of care regardless of setting – for example, Dementia Care Mapping™ (DCM™) has been used as an observational tool which has been designed to be used within formal care settings such as care homes, nursing homes, day services and hospitals. This book is, in fact, in part dedicated to Dawn Brooker, and frequent references are made in the text to Tom Kitwood. The book is also dedicated to Martin Rossor, national director for dementia research, for whom I worked in 2003. I do not of course wish to speak about the specialist area of personhood as I feel that would be entirely inappropriate.  An excellent book on this area, however, is “Person-Centred Dementia Care, Second Edition: Making Services Better with the VIPS Framework”, by Dawn Brooker and Isabelle Latham, also published by Jessica Kingsley Publishers https://www.amazon.co.uk/d/Books/Person-Centred-Dementia-Care-Second-Framework/1849056668.

 

 

My book is intensely evidence-based but not in a way, I hope, which is off-putting to the primary audience – who are not commissioners, but persons living with dementia and carers. I certainly believe that it is the primary duty of researchers at least to think about the basic translation of research into practice. Many of the interventions and service developments will ultimately rely on this.

 

Thankfully, there are people in care settings who think very carefully about the environment of care, for example helping carers identify, find solutions and create a care culture to overcome mealtime eating problems in dementia. ‘Working with’ collaboratively not working to patients has been a fundamental change in attitude for organising services and research, and the fundamentals of co-production are intimately linked to citizenship and human rights. And we do need to ensure people get access to the right care at the right time. For example, there can be difficulty seeing your GP, or dementia care is an increasingly important strategic consideration for palliative and end of life care providers, including hospices. It is noteworthy that, through working in partnership with their local community and care providers, hospices can ensure that the best of hospice care is extended to everyone affected by a diagnosis of dementia within their local community.

 

 

Responding to the challenge

 

The NHS Five Year Forward View, the current strategic ‘masterplan’ of the NHS, emphasises integration, personalisation and empowerment:

 

There is broad consensus on what the future needs to be. It is a future that empowers patients to take much more control over their own care and treatment. It is a future that dissolves the classic divide, set almost in stone since 1948, between family doctors and hospitals, between physical and mental health, between health and social care, between prevention and treatment.”

 

Chapter 1, Five Year Forward View, 2014 (https://www.england.nhs.uk/ourwork/futurenhs/nhs-five-year-forward-view-web-version/5yfv-ch1/)

 

Dementia has been the target of much stigma from society, and despite the rhetoric of ‘parity of esteem’, much more can be done to understand the physical and mental health needs of persons living with dementia.  Recent initiatives such as ‘dementia friendly communities’ have identified that dementia is unlikely to be the only medical condition a person might live with long-term, and all that communities should be inclusive and accessible. Preventing certain people from being lonely and isolated has immeasurable social and well-being benefits for the individual. There are some amazing ‘dementia friendly’ initiatives – for example, a visit to the theatre can have a profound impact on people living with dementia and their families. It is crucial that all initiatives are culturally inclusive too, including raising awareness and promoting understanding of dementia within culturally diverse communities, which might mean physically visiting day centres, community groups and religious centres to talk about dementia and tackling the stigma that surrounds dementia.

 

Dementia is thought to be the most feared condition in adulthood, and this can affect diagnosis-seeking behaviours as well as the message that ‘nothing can be done’ after a diagnosis. A person never receives a diagnosis of dementia alone; so, understanding how the diagnosis impacts on that person and those closest to him or her is of fundamental importance. What happens after a diagnosis can be incredibly complex, and we need health and social care systems which are flexible, adaptable, and correctly resourced to cope. Interventions for living well, supporting well or caring well are not just medical, but can also be psychological (cognitive or behavioural) – and might prevent further decline. Professionals can unfortunately instil a feeling of helplessness in a person diagnosed with dementia, referred to within Kate Swaffer’s construct of ‘prescribed disengagement’™.

 

I propose in the book that there are key demands of integrated care which I picture in the Preface as spokes of an umbrella.

umbrella

 

‘Responding’ to a new diagnosis of dementia needs new, flexible ways of adapting.

 

Take for example the description of Wendy Mitchell – living with dementia:

 

However, I’m also hoping I can convey that, although we’ve been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. Living well with dementia is all about adapting. Adapting to new ways to enable us to live better for longer with dementia.”

 

(Wendy Mitchell’s blog – “Which me am I today?” https://whichmeamitoday.wordpress.com)

 

Dementia is a prevalent condition, but trends are complicated due to the effect of risk reduction work, the numbers of our ageing population and improved rates of diagnosis nationally. There are approximately about 900,000 people currently living in the UK with dementia. However, the nature of the condition means that managing it can pose unique and sometimes difficult issues, both in the community and in other care settings, and “dementia is everybody’s business” meaning that this is a widespread societal concern, not just the caring professions.

 

With the right support and opportunities, people with dementia and carers can successfully communicate, engage, participate and continue to be part of relationships and communities, and this is no matter how advanced their dementia.

 

This third book provides some of the ingredients to a recipe providing the change for people living with dementia and carers would be supported in a holistic, person-centred way. It is impossible to deliver person-centred care in an exceptional way, without staff feeling properly supported and empowered to fulfil their roles. The language we use is a critical aspect to this. Notwithstanding, there is a strong sense of interconnectedness in the ‘dementia’ sphere, and people in person-centred integrated care tend to be aligned to certain values of openness, trust, valuing difference, innovation and collaboration.

 

There have been enormous strides in how people living with dementia are supported, however there is always more to be done. Technology now embraces telehealth, telecare, mobile health, telemedicine, e-health, smart home technologies and Internet of Things, but is increasingly including informatics (including electronic health and care records), big data, artificial intelligence as well as health and care robotics. Digital technology and social networks provide some of the most powerful tools available today for building a sense of belonging, support and sharing among groups of people with similar interests and concerns.

 

Despite the lack of ‘caring well’ in the NHS Transformation Network, presumably subsumed under ‘living well’ and ‘supporting well’, my book is worth reading with their construct in mind. It can be viewed on this hyperlink: https://www.england.nhs.uk/mentalhealth/wp-content/uploads/sites/29/2016/03/dementia-well-pathway.pdf.

 

dementia-well-pathway

 

Cost pressures are requiring providers to find new ways of developing a compassionate, capable and competent, yet affordable workforce. Furthermore, both specialist and generic services can struggle to cope with the increased demand upon services. We know there’s a ‘funding gap’ referred to the ‘Five Year Forward View’. But this should be the driver behind transformation plans. Many people involved in dementia care feel there’s also a ‘time gap’ – people with dementia need more of it and hospitals don’t seem to have any. The experience of someone with dementia is often affected by how well the discharge out of hospital goes. For example, a specialist occupational therapist to make sure we got the discharge process right for dementia patients and focussed on safe transfer of care from hospital into the community. Many would like to give a commitment to really making time for residents in its care homes and houses allows all to be treated as individuals, as this provides an environment where residents who are living with dementia can improve their quality of life.

 

The pressures on residential care are enormous. Some care homes face insolvency. A person with dementia is an individual with individual needs and changes to the environment can affect that person, and these could include the health and wellbeing of staff.  The potential problem with framing promoting wellbeing as ‘activities’ is that the focus instead of being on the person becomes focused on the task. Promoting wellbeing might advance ‘life skills’ and improve mental condition, helping and inspiring participants to reminisce and rediscover aspects of their lives. Ideally then all ‘activities’ would be based on the interests, desires and wishes of our residents, and might include tai chi, massage, cream tea, arts, singing, flower arranging, or music. We know that communication is incredible important. Stories can strengthen emotional links between generations, and help to mitigate against negative effects of the combination of dementia, depression and loneliness in communities.

 

We live in exciting times.

 

 

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A design for dementia friendly communities to benefit the tyranny of the majority?

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Nobody lives with dementia on its own. Many people living with dementia live with at least a few other conditions. Their health needs are complex, particularly since ‘dementia’ embraces itself more than a hundred different conditions manifest in often very different ways.

At the time of the Prime Minister Dementia Challenge (2012), the Alzheimer’s Society found an instant magic way of getting people to volunteer into promoting dementia awareness. It would be naïve not to expect that some of them would become brand ambassadors for the Alzheimer’s Society, even though the Alzheimer’s Society claimed not to be the same as Dementia Friends (despite the owner of the trademark being the Alzheimer’s Society, the use of the same corporate font FS Albert, the copious mention of Alzheimer’s Society in press releases and press reports.)

Far from promoting diversity, “dementia friendly communities” in England seems to be channeled through some weird dystopic corporate capture, including favoured outcomes for grant applications with the term ‘dementia friendly community’ in it, official award ceremonies, and regulatory capture through the official ‘recognition process‘.

In the real world, dementia care is on its knees. Social care has never had it so bad, with its funding having not been protected since 2010. The vast majority of NHS Trusts are now in financial distress due to gross underfunding and the sequelae of private finance initiatives, meaning that people with dementia are stuck in hospital through no fault of their own. It’s all very well allowing carers to visit outside visiting hours, but this is not an adequate solution to the needs of carers, whose psychological resilience needs protecting to avoid premature illness of carers or premature transfer into acute hospital or residential care of people with dementia.

At every possible juncture, the undeniable value of clinical specialist nurses, dementia advocacy services, or respite care services have been consistently rubbished, culminating in the airbrushing of ‘caring well’ from the NHS Transformation Network for living with dementia altogether.

dementia-well-pathway

[Reproduced under then Open Government license.]

The English dementia strategy was not renewed in 2014, and its lack of direction, apart from promoting the corporate branding of the Alzheimer’s Society, arguably has become a huge embarrassment to many professionals and practitioners specialising in the field, who can see health and social care systems at breaking point. The phrase “tyranny of the majority” (or “tyranny of the masses”) re-surfaced in interpretation of the #Brexit vote, and had been used in discussing an inherent weakness in the system of pure direct democracy and majority rule. Tyranny of the majority involves a scenario in which a majority of an electorate places its own interests above, and at the expense and to the detriment of, those in the minority, where by that detriment constitutes active oppression comparable to that of a tyrant or despot.

Nobody as such voted for ‘dementia friends’ or ‘dementia friendly communities’, and yet millions of pounds have been pumped into this initiative, with no official report as yet about outcome measures. Newspaper headlines are still littered with phrases such as ‘dementia sufferers’ and ‘dementia victims’, despite a nirvana of grants being awarded for empowerment, engagement and language in dementia – while enhancing health and social care in dementia is on its knees. “Advocates” call cheerfully, amidst their conference appearances, for greater GP training, while not seeming to appreciate that GPs have gone way beyond breaking point e.g. weeks to get a routine GP appointment, no more than a few minutes to see each patient with multiple co-morbidities. Potentially, through tyranny of the majority, a disliked or unfavored ethnic, religious, political, or racial group may be deliberately targeted for oppression by the majority element acting through the democratic process.

Part of achieving a ‘tyranny of the majority’ is through a “centralisation excess” when the centralised power of a federation make a decision that should be local, breaking with the commitment to the subsidiarity principle. In other words, your dementia friendly community is fine, and can be ‘badged’, so long as it conforms with ‘our’ vision. The new trademark for the Alzheimer’s Society (UK00003172674) was entered officially on the UK trademark register in November 2016, including even Class 18 (for trunks and travelling bags; handbags, rucksacks, umbrellas, parasols and walking sticks). The word mark is “United against dementia”, but with the airbrushing of clinical specialist nurses in high quality care in dementia, or without any effort at adequate resourcing of the social care profession, the three words are at danger of being entirely vacuous.*

In a parallel universe, in other words of academic research, professionals and practitioners there has been real progress in the definition of health to promote ‘social wellbeing’, towards a more dynamic one based on the ability to adapt and self-manage. Three domains of health are now characterised by the World Health Organisation: the physical, mental and social domains. Physical health was characterised as being capable of maintaining physiological homoeostasis through changing circumstances. Mental health as a sense of coherence, which contributes to the capacity to successfully cope and recover from psychological stress. Social health was characterized by three dimensions: (1) having the capacity to fulfil one’s potential and obligations; (2) the ability to manage life with some degree of independence, despite a medical condition; and (3) participation in social activities including work (Huber et al., 2011). These domains are fundamental to WHO’s community based rehabilitation where enhancing health and wellbeing in dementia is more than a mere corporate marketing exercise for ‘dementia friendly communities’. It engages and empowers specialists with years of experience, such as physiotherapists, occupational therapists and community nurses, promoting human rights and social value. We should be looking for excellent islets of excellence abroad for inspiration for best practice (e.g. Buurtzorg), as well as some of the excellent examples in the ‘enhancing health in care homes’ project from NHS England.

According to Vernooij-Dassen and Jeon (2016), the added value of the concept of social health lies in various core features. It is an umbrella for an array of concepts reflecting human capacities to participate in social life, such as reciprocity and dignity, and resilience; and yet it is explicitly said in the pre-scripted patter of ‘Dementia Friends’ that Dementia Friends are not supposed to befriend people with dementia, a departure from the Japanese ‘caravan’ scheme on which Dementia Friends is meant to be loosely based. Social health is, rather, clear overarching concept facilitating communication between the psychological, social and biomedical sciences; it does not focus on deficits but on remaining capacities, and more importantly, it relates to normalcy. The new concept of social health proposed by Huber and colleagues, is in line with the social model of disability, which places an obligation to value what people can do rather cannot do, but likewise imposes an obligation to make reasonable adjustments for the things which people cannot do (e.g. memory aids for memory problems).

In the past few decades, research among people living with dementia has addressed several aspects of social health based on a variety of theories. This has resulted in a useful, but somewhat fragmented knowledge base in this field. For example, more than 40 years ago Lawton and Nahemow (1973) described the environmental docility hypothesis which relates to the first dimension of social health, focusing on the capacity to fulfil one’s potential within enabling or disabling environments. And indeed we can see the seeds of this in the WHO Aged Cities and RSA Connected Communities, which predate ‘dementia friendly communities’ from the Alzheimer’s Society. The NHS and social care infrastructure has a critical rôle to play in self-care and self-management, or “hospital at home”, highlighting the remaining ability to manage life, despite a medical condition, provided that improved resources for community services are front loaded prior to any savage hospital cuts. Based on such evidence, and building on remaining cognitive skills, several interventions have been developed in dementia care such as the home environmental skill building program, cognitive rehabilitation, and cognitive stimulation therapy. These would have been natural bed fellows of the dementia friendly communities approach, save for the issue that funding for psychological therapies has crashed too.

The concept of personhood (being a person in relation to others) primarily emphasises the importance of social participation for people with dementia. Interventions focusing on maintaining or improving social relationships with people living with dementia, e.g. person-centred care and reminiscence, appear to not only have beneficial effects on social interactions, but also improve mood and cognitive function, reduce the use of antipsychotics, and enhance the quality of life of people with dementia in residential care settings. Having dementia communities framed by a tyranny of the majority, for example the Alzheimer’s Society and Alzheimer’s disease International, cannot possibly allow enhancing health and wellbeing in dementia to flourish. Being ‘united’ in dementia would mean substantial funds from national societies directly to the world stakeholder group of people living with dementia, Dementia Alliance International (DAI), rather than national societies being rather obstructive in this cause? As an impartial independent observer, I can only say that DAI must be for the benefit of people living with dementia primarily rather than for the benefit of Big Charity.

The system though has been designed to cascade down a particular ‘vision’ of dementia friendly communities, where brand ambassadors can locally affect local economies through ‘badging’ dementia friendliness – this might include getting a chain of high street banks to say they’re ‘dementia friendly’, whatever the actual reality of the boots on the ground. The whole deception comes from the appearance of localisation despite strong central influences. This is understood best through the notion of “swarm intelligence” (SI) is the collective behaviour of decentralised, self-organised systems, natural or artificial. The concept is employed in work on artificial intelligence. The expression was introduced by Gerardo Beni and Jing Wang in 1989, in the context of cellular robotic systems.

SI systems consist typically of a population of simple agents or “boids” interacting locally with one another and with their environment.  The agents follow very simple rules, and although there is no centralised control structure actually dictating how individual agents should behave, local and to a certain degree random interactions between such agents lead to the emergence of “intelligent” global behavior, unknown to the individual agents. Examples in natural systems of SI include ant colonies, bird flocking, animal herding, bacterial growth, fish schooling and microbial intelligence.

Critical to this are the ‘dementia friend champions’, known in corporate world as the “brand ambassador”, a person who is hired by an organisation or company to represent a brand in a positive light and by doing so help to increase brand awareness and sales. The brand ambassador is meant to embody the corporate identity in appearance, demeanor, values and ethics. The key element of brand ambassadors is their ability to use promotional strategies that will strengthen the customer-product-service relationship and influence a large audience to buy and consume more. Predominantly, a brand ambassador is known as a positive spokesperson, an opinion leader or a community influencer, appointed as an agent to boost product or service sales and create brand awareness.  Big Charity is not concerned with ‘sales’ as such, though it appears to have been unhealthily obsessed with fund raising for the sake of it, and excessive use branding and public relations.

The term “brand ambassador” loosely refers to a commodity which covers all types of event staff, varying between trade show hosts, in store promotional members and street teams. The fashion industry however, solely rely on celebrity clientele in order to remain brand ambassadors. Furthermore, brand ambassadors are considered to be the key salesperson for a product or service on offer. Critical in the functioning of Big Charity has been the engagement of a super-breed of highly articulate and experienced “celebrity persons living with dementia”, adding the “authentic voice”, even if a consequence is to drown out professionals and practitioners who also want to make health and social care systems succeed.  It has become excruciatingly embarrassing to read that the outcome of ‘organic’ “involvement and engagement events” conclude with the advocacy of dementia support workers and dementia friendly communities, both high vis products of the Alzheimer’s Society, while the NHS and social care systems are on their knees? But be in no doubt the real patient carer voices are extremely important, but often a third party (e.g. social enterprise, university grant recipient) benefits too these days, and certain things might become lost in translation thus.

But when policy goes awry, it is the moral responsibility of people to say so, even if grants depend on it. As the great parliamentarian Edmund Burke said, “The only thing necessary for the triumph of evil is for good men to do nothing.”

References

Huber M, Knottnerus JA, Green L, van der Horst H, Jadad AR, Kromhout D, Leonard B, Lorig K, Loureiro MI, van der Meer JW, Schnabel P, Smith R, van Weel C, Smid H. How should we define health? BMJ. 2011 Jul 26;343:d4163. doi: 10.1136/bmj.d4163.

Dröes RM, Chattat R, Diaz A, Gove D, Graff M, Murphy K, Verbeek H, Vernooij-Dassen M, Clare L, Johannessen A, Roes M, Verhey F, Charras K, The Interdem Social Health Taskforce. Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging Ment Health. 2016 Nov 21:1-14. [Epub ahead of print]

Lawton, M.P., Nahemow, L. (1973). Ecology and the aging process. In C. Eisdorfer & M.P. Lawton (Eds.), The psychology of adult development and aging (6th ed.) (pp. 619–674). Washington, DC: American Psychological Association.

Vernooij-Dassen, M., Jeon, Y.H. (2016). Social Health and Dementia: The power of human capabilities International Psychogeriatrics, 28(5), 701–703. doi: 10.1017/S1041610216000260

 

* Please note that the publication of the trademark is in the public domain, and therefore under the law of equity I am fully entitled to publish a link to it under English law.

 

@dr_shibley

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Enhancing health and wellbeing in dementia: a person-centred integrated approach, reviews

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This is a book all about a possible integrated care pathway for dementia. It places at the heart of the narrative a person who’s received a diagnosis of dementia and the people who care for him or her, so nobody is left behind.

Thanks to the following for their pre-publication comments for my book to be published on 19 January 2017. I should like to thank all of the people below for considering the whole manuscript before offering the following responses.

The abbreviated comments are also provided on the Amazon UK page for my third book on dementia.

 

‘This important book continues our journey of what it means to see the person beyond their diagnosis of dementia, with a fresh focus on freedom, dignity and human rights. Dr Shibley challenges the idea that nothing can be done to improve dementia care. He brings practical thinking around how we can move towards truly integrated, person-centred ways of working – making a timely and valuable contribution to our collective understanding.’

– Dr Helen Sanderson, author of Person-Centred Thinking with Older People

 

“There can be no doubt that ‘Enhancing Health and Wellbeing in Dementia’ should be essential reading for anyone with an interest in improving the lives, and rights, of people living with dementia. It is an important book which is both comprehensive and practical – no easy matter to achieve! His encyclopaedic span concludes appropriately with the primacy of person-centred approaches, the importance of dignity, quality and leadership – yes, yes, yes!”

– Des Kelly OBE, Chair, The Centre for Policy on Ageing

 

 

“Shibley’s voice has emerged as an important one to take notice of within dementia care. His ability to draw together a huge range of knowledge from many different spheres of research, practice and policy and to use it to light our way rather than confuse us further is unique.”

– Prof Dawn Brooker, Director of the Association for Dementia Studies at the Worcester University, UK

 

“An absolute gem of a book. Through his career, Shibley Raman has been sequentially academic neurologist, service user, family carer and blogging activist. His learning and wisdom have been distilled into a highly readable, comprehensively referenced and bang up-to-date companion for anyone who needs to learn and understand about people with dementia and what can be done to help them, their families and professional carers to get the very best out of life.”

– Prof Robert Howard. Division of Psychiatry, University College London

 

“Practitioners, family carers and people with dementia looking for a comprehensive resource about dementia need look no further. Few books combine detailed explanations about clinical aspects of dementia with policy analysis and yet remain so centred on people’s individual experiences. This is an important resource for anyone who wants to understand more about providing better dementia support.”

– Jo Moriarty, Senior Research Fellow and Deputy Director, SCWRU, King’s College London

 

“The third of Rahman’s books on issues relating to dementia. Another must-read text that discusses the many and varied elements of what is required to enhance the lives and wellbeing of people with dementia. I particularly like his style of telling us what we can expect to learn from each section and suggestions for further reading.  This, as well as the first two books from the author, is an essential read for all health and social care students in gaining an overview of caring in dementia.”

Dr Karen Harrison Dening, Head of Research & Evaluation, Dementia UK

 

“This is a complex and difficult journey and Dr Rahman’s book is like having an informed, interested, intelligent and profoundly humane friend by your side on the journey through. This book is a friend that is encyclopaedic in knowledge and who is not afraid to have opinions and to express them. We are part-way along the journey, we have come a long way but we have far to go. This book helps us reflect on where we are and the road we have travelled, all the better to plan and travel the road ahead.”

Prof Sube Banerjee, Chair of Dementia Studies at Brighton and Sussex Medical School, co-author of the English dementia strategy (2009) “Living well with dementia”

 

“‘Great book on integrated, person-centred dementia care. Clearly identifies issues often overlooked: importance of relationships in delivering good care; pivotal role of care homes in caring for people with dementia; and value of addressing staff needs so they can be in good relationship with others. It’s not rocket science!’”

— Prof Julienne Meyer, CBE, Professor of Nursing: Care for Older People and Executive Director: My Home Life, City University London

 

“This is a wonderful book, for students, health professionals, researchers, policy makers, politicians and families, and for people who may be in the early stages of one of the diseases that causes dementia. This is a book that challenges but also gives hope. Which I think is the greatest gift of all.”

—Lisa Rodrigues, CBE, writer, coach and mental health campaigner, www.LisaSaysThis.com

 

‘Shibley Rahman’s last book in his trilogy on dementia represents a comprehensive and thought provoking tour de force through the subject matter – great reading for any health and social care professional, academic and interested lay person. Here is a perspective from an author who in himself integrates academic qualifications in medicine, law and management with a lived experience of disability. A unique read!’

— Reinhard Guss, Chair, Faculty of the Psychology of Older People, British Psychological Society

 

“What they all have in common is a need for health and social care professionals to come into their lives with understanding, and a recognition of the need for the diseases that cause dementia symptoms to be understood, so that the person or their carer never feels they are being led blindly through our health and social care systems. They don’t need us all to be experts in the scientific constructs of dementia, but they need us to know enough to respond sensitively and with confidence.

A better understanding of what person-centred care is, in the context of dementia, is what will help us to achieve this. I am hopeful that this book will  appeal to specialists and non-specialists alike, and that it will inform and influence professionals who support people living with a dementia.

This book is an important milestone in Dementia Care literature as it provides information to help us answer the difficult questions we face as professionals helping to support people and families. The different types of dementia all have in common that they cause a person to have needs around changing health and wellbeing. The discussion flowing through this book, points to where the answers are to improving how we meet those needs.”

— Lucy Frost

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Much unites us than divides us on integrated care in dementia

One of the many advantages of not being invited to conferences or not having to apply for any funding or grants is that I am able to think about how policy actually gains meaning (or not) for people on the ground. I am not interested in the marketing of ‘patient opinion’, or the goldfishonomics of telling platitudes to power. The fact is that the NHS and social care pressure points do exist; some ‘leaders’ are milking the system for their own careers and effectively fiddling while Rome burns.

For months, I’ve been writing (completely unpaid, of course) a new book to be published by Jessica Kingsley Publishers on 20 January 2017. The book ‘Enhancing health and wellbeing in dementia: a person-centred care approach” does exactly what it says on the tin, and maintains that promoting health and wellbeing should be no.1 irrespective of setting, such as care home, hospice, hospital or at home.

This week, Health Education England published a very important document. The Dementia Generic Service Interventions Competency Framework is intended to support the development of a competent and confident workforce across the West Midlands Region, all disciplines and sectors, in order to provide an effective, quality service to meet the needs of the people with living with dementia, carers and families, in all settings, including those providing acute care or in the community.

It is divided into nine sections/pathway points which include statements of activities, skills and knowledge required to work effectively at each pathway point with the focal point of the framework is the individual. These are described in relation to my work below.

West Midlands Dementia Competency Framework - Sept 2016 FINAL-5

This framework was commissioned and funded by Health Education England – West Midlands as part of a dementia innovation programme hosted by North Staffordshire Combined Healthcare NHS Trust. It was developed in collaboration with Skills for Health, steered by a multi-disciplinary group of professionals from medicine, nursing, dental, education and academia backgrounds working in primary, acute and mental health settings. The group also engaged with colleagues from social care and 3rd sector organisations and most importantly people living with dementia and carers of people living with dementia. Key contributors included Dr Karim Saad (@KarimS3D) – Project team 1 chair, The people living with dementia and carers who have provided expert reference, advice and guidance, and Chris Malvern (@NHSCMalvern) – MHI LETC Workforce Development Specialist.

With increasing opportunities for risk reduction, tackling stigma and discrimination, defining and setting standards of post-diagnostic support, and developing a sustainable approach to dementia inclusive communities, this means that care providers must now expand the skills of their workforce, ensuring that those living with dementia can benefit from a fit for purpose, integrated, evidence-based dynamic dementia pathway. This is of course much easier said than done, and one of the most frustrating things for me has been that – for years – people have said repeatedly that ‘people are lost in the system’, with a massive reluctance to put down the essentials of the ‘care pathway’. There are of course good reasons not to set in stone signposting to services which no longer exist due to swingeing cuts, but it would be helpful for many people with dementia and their closest to have an idea of what to expect.

In 2008, people with dementia in the West Midlands together with their carers and a multidisciplinary group of clinicians recognised that, despite the worrying demographics of dementia in this region and the projected dwindling numbers of carers, there were no overarching, proactive dementia services. Their vision was to develop a West Midlands Integrated Dementia Pathway to enable anyone with a suspected or confirmed diagnosis of dementia to access an integrated, seamless, proactive and high quality locality based service that encompasses all the expertise to meet the needs of the people with dementia and those of their carers. Likewise, earlier this year I wished to write an inclusive book, educating commissioners as well as helping current practitioners and professionals, but which could be read by friends and families of people living with a dementia diagnosis.

I in the end settled on some specific strands

Multimorbidity

Dementia rarely travels alone.

Interoperability

At its most primitive level, this means data can be free flowing between different parts of the system, such as care home, health and social care.

Rights

Rights give you permission to do something or not to have do something. Whether or not you wish to spend time, effort and money discussing whether international instruments put people with dementia within the disability sphere, the vast majority of people with dementia and carers want to know what rights exist which are meaningful to them in their locality – and how to access them and use them.

Health

Irrespective of care setting, a person with dementia always fundamentally has a right to health. This can be enabled or compromised by healthcare systems. Wherever you are, and this includes care homes, there has been acknowledgement of the need to  promote physical health to maintain mobility and independence, and to do this in a way which maximises someone’s dignity and continuity of care (such as through ‘life story’).

Enablement

Like reasonable adjustments for physical disability, enablement conveys the notion that there are ways to help people with dementia with particular difficulties (say in memory) with help to improve quality of life, health and independence. But it is so much more than what happens in the health and social care sectors (important though that is) – appropriate housing can support a safe environment and using assistive technology can help support choices. It’s important that people are actively involved in care pathway options, where necessary, for example moving to a supported housing situation while able to establish new routines, or a move to residential care if deemed desirable. But there are wider issues indeed, for example the importance of enabling individuals to remain in employment, and the importance of employer support to enable people to remain in employment.

Complexity

Dementia is not simple at all. Catering for any needs of persons with dementia and their nearest needs acknowledgement of the complexity of the relationships between different people and organisations, and needs a system which can make sense out of what appears as chaos at first sight. It’s therefore all the more important to  provide specialist supervision and consultation to individuals and teams on how best to support and manage someone with complex health needs, and to provide dementia specific guidance and consultation to individuals and teams where people need complex and non-routine care for physical health.

Care planning

As such, any journey you make requires you to go from A to B, but planning the journey not only involves some idea of where you might be going but also requires you know what you’ll need to travel successfully. interpret and use information from assessments to develop a meaningful care plan. I hope my book will encourage people to see a benefit of carrying out integrated care planning. There’s been over years, with varying degrees of success, a turn around from people being passive recipients of services to people who are actively and organically breathing life into services so that they stay relevant. Care planning is all about creating and managing relationships with other services, individuals and families, and there are clear advantages to forward planning to avoid crisis, e.g. accommodation and health needs. The person-centred integrated care plan to incorporate wellbeing for the carer and family is a therefore a very significant development.

Independence and interdependence

The ideal would be that the person who “takes control” is the person with dementia himself or herself, but suitable tools are needed for this, such as bespoke genomics information, information about care and services, budgets, etc. But the paradox is that it is not possible to do things alone – because of the complexity of the system the principal actors are involved in a system as a whole and are highly dependent on each other. Take for example the promotion of physical and mental health for people with dementia in a care home – ideally a multidisciplinary team might be involved, for example occupational therapist, social worker, falls prevention service, or geriatrician, but we all know sadly the realities of service provision at present. Post-diagnostic support in this prism is therefore an active process, and individuals might be encouraged, for example,  to inform pharmacist, dentist, podiatrist etc. of a timely diagnosis of dementia.

Promotion of wellbeing

Dementia awareness has helped enormously in raising in terms of knowledge skills attitudes for all those working in health and care. The Care Act (s.1(1)) imposes a statutory duty to ‘promote wellbeing’, and a problem with the word ‘activity’ as applied to care homes is that it puts the focus on the task not the person – promoting wellbeing though is a pervasive aspiration that lives across different care settings, and which could be made available across all care settings through social prescribing.

Person-centred approaches

Concentrating on a person does not mean, of course, to the deteriment of not concentrating on friends, family or other important relationships. It’s important now for us to develop services that provide person-centred care, but pivotal to this is workforce planning, right skills, values based recruitment, fostering values based cultures, bringing activities to people.

Some key points from the generic competences framework relevant to my thesis are provided below.

circles

Access to safe, coordinated care

  • the need to ensure that the health and wellbeing needs of the person with dementia are being taken care of during the discharge and transition process
  • awareness of the common causes of dementia, dementia, and that dementia may be expressed in different ways, for example fear of new people or situations
  • provide specialist supervision and consultation to individuals and teams on how best to support and manage someone with complex needs
  • provide specialist consultation to ensure that the maximum effectiveness of the multi-disciplinary team
  • identify when crisis/emergency planning should take place, ensuring people are prepared in advance, before any crisis occurs

Timely accurate diagnosis and treatment planning

  • the importance of a full medical history, laboratory tests, imaging, physical examination, characteristic changes in cognition function and behavior, in diagnosing dementia.
  • provide specialist supervision and consultation on how to identify hard to recognize or rare manifestations of dementia
    assess complex presentations of behaviour and plan a multifactorial response
  • plan treatment for palliative care/ advance care planning with individual concerned and multidisciplinary team
  •  take into account longer term housing options to reduce transitions, including assistive

Enabling Wellbeing, Care, Choices and Preferences

  • the benefits of a healthy diet/ exercise, dancing, theatre, shopping, other hobbies and interests
  • how environmental improvements to services enhance access and delivery of services e.g. pictorial signage, quiet waiting room
    documents that record personal information about and history of a person e.g. All About Me

Therapeutic care

  • how to make people feel safe and secure in an environment
  •  the importance and significance of essential care to maintain fluid intake and nutrition to avoid harm e.g. falls, infections, continence management and skin care to avoid tissue damage
  • the importance and significance of exercise to sustain fitness, balance and mobility
  • assess specific healthcare risk of people with dementia including sensory needs
  • provide specialist advice and consultation to those providing and managing a person with dementia’s end of life care pathway
  • the benefits of cognitive stimulation and meaningful activity
     the range of meaningful and purposeful activities available to meet the spectrum and level of need, memory games and group activities, reminiscence on IPods/MP3 players, magic touch screen, IPad/tablets, painting, string, texture, music, dementia cafes, peer facilitators/leaders
  • the value of peer support e.g. dementia cafe
  • carry out a poly-pharmacy assessment, identifying physical health care issues, e.g. dental problems as a result of some medications
  •  medications optimisation, arrange/carry out regular medication reviews and interaction, this may involve pharmacists, GPs, registrars, nurse matrons, continence teams, advocacy service, district nurses, other prescribers
  •  review previous medication when prescribing new medications

Person-centred Care

  • sexuality, sexual behaviours, loss of inhibitions and sexual health
     where support groups are and how to signpost to these
  • the contribution that can be made by spiritual care/religious and cultural organisations
  • develop organizational policy to enable timley and ease of access to person centered activity and personal budget
  • advise organisation on their strategy for assistive technology
  •  identify areas for future development
  •  contribute to new and innovate technology
  •  plan implementations and strategies
  •  design and deliver user experience evaluations

Family/Carer needs

  • encourage and support the carer in their caring role, including planning respite care
  • give information and education to family and carers about assistive technology
  • how carers passport and mechanisms such as open visiting, involvement pre -operation, assistance with parking, reduce cost of meals can support carers
  • how befriending and neighbourhood schemes help to support carers
  • the importance of enabling carers to remain in employment
    the importance of employer support to enable carers to remain in employment
  • support families, carers and the person with dementia with managing loss and grief.
  • support families using a range of initiatives: dementia surgeries, nurse specialist, Admiral nurses, help lines, crisis management and on line forum

Accommodation and Welfare Support

  • the importance of good, safe, warm accommodation on an individual’s health and wellbeing
  • the importance of sufficient income to meet personal needs and the impact on an individual’s health and wellbeing

Innovation and Improvement

  • utilise research findings to inform practice/share good practice
  • enhancing the knowledge skills and attitudes for key staff (experts) working with people living with dementia designed to support them to play leadership roles

Monitoring and Measurement

  • how to approach and communicate with a person with dementia in order to undertake physical health observations
  • promote lifestyle and behavioural changes that will improve wellbeing
  • knowledge and understanding of dementia care mapping observations, and other tools designed to assess and/or monitor care
  • how and why a positive risk assessment for people at risk of hospital admission should take place
  •  how to minimise risk and take a least restrictive approach

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Dementia health care and wellbeing – a person-centred integrated approach. My book for April 2017.

before editing

Dr Shibley Rahman

Queen’s Scholar BA (1st Class) MA PhD (all Cambridge); MRCP(UK) LLM MBA

Forewords by

Prof Sube Banerjee

Lisa Rodrigues

Lucy Frost

For publication: March 20th 2017 Jessica Kingsley Publishers

About this book:

This book brings different strands in dementia bang up to date. It coincides with the publication of the new NICE guidance “Assessment, management and support for people living with dementia and the carers” to be published in November 2017, as well as publication of the “Dementia Core Skills Education and Training Framework”. It is a coherent evidence-based synthesis of the importance of a person-centred integrated approach, and discusses how integrated care pathways might facilitate this. It is sometimes forgotten that a fundamental right to health underpins wellbeing across all settings, including in care homes (and nursing homes), at home and in hospices, but it is often forgotten that physical health is an important component of wellbeing. This book therefore covers a diverse range of topics including also mental health in care homes, meaningful activities in residential settings, the whole health and social care ecosystem including getting into and out of hospital in a timely manner, as well as enablement through targeted support. Key themes such as dignity in health, care and wellbeing straddle key strands in personhood, human rights and the biomedical approach, and these themes are of critical prominence in service improvement through research, regulation and nurturing of staff. The book will be of help to people living with dementia, carers, dementia leads, care home managers, commissioners, professionals and practitioners, and academics, as well as interested members of the public.

Contents:

Chapter 1

Preventing well and diagnosing well

Chapter 2

Overview of caring well

Chapter 3

Caring well: physical health and medication reviews

Chapter 4

Caring well: mental health

Chapter 5

Cognitive stimulation, cognitive rehabilitation and life story

Chapter 6

Oral health and swallowing difficulties

Chapter 7

Promoting wellbeing

Chapter 8

Sexuality and spirituality

Chapter 9

Research, regulation and staff

Chapter 10

Care homes and integrated care

Chapter 11

Supporting well and independence

Chapter 12

Dying well and end of life

Chapter 13

Living well at home

Chapter 14

Conclusion

 

Dedication

It is my great pleasure to dedicate this book to two people.

First, I am thankful to Prof Martin Rossor. I worked for Prof Rossor in 2002 as a junior at the National Hospital for Neurology and Neurosurgery, Queen Square. His contribution to clinical care and research in dementia has been exceptional.

Second, I would like to give special thanks to Prof Dawn Brooker. Whilst I have never personally worked for Prof Brooker, her contribution in personhood and dementia has been remarkable against the reality of the NHS, and she personally has been inspirational for many leaders in dementia around the world.

I should like to thank especially Prof Sube Banerjee, Lisa Rodrigues and Lucy Frost for kindly writing forewords to this book. And finally, I should like to thank enormously Chris Roberts for giving me the idea to write this book, the third in fact in my ‘trilogy’.

 

 

 

Dr Shibley Rahman

London, September 2016

 

 

 

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“Young onset dementia” – a label too far?

 

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“Will you still need me when I’m 64?”

Many younger people can think they will live forever.

When I was at Chelsea and Westminster Hospital yesterday, a senior clinician in care of the elderly joked that this teenage children define ‘old people’ as ‘five years older than my dad’.

The definition of ‘young onset dementia’, referring to people living with dementia below the age of  65, I feel is arbitrary. I think it defies a general wish not to define people by a diagnosis or a label. I don’t live with young onset dementia so my views are compromised, but I believe the phrase ‘young onset dementia’ is potentially compounding a stigma potentially provided by the word ‘dementia’.

I suppose my biggest problem is the cliff-edge phenomenon which comes with such a definition. This can mean you are living with ‘young onset dementia’, but the following day with ‘dementia’.

This can mean totally different funding mechanisms, and subsequent organisation of your care. I know somebody who said to a man with young onset dementia last week, ‘Strictly speaking, I’m not supposed to look after you next week, as your CPN, as you no longer have ‘young onset dementia’ but ‘dementia’.”

She then, as it happens, then promised to carry on visiting, which pleased that person living with dementia no end. With over hundred different diagnostic causes of dementia, it is unwise to generalise, but many people with dementia can find themselves very disorientated very easily. This matters too from the organisation of good quality of care, in other words the need to mitigate against discontinuities in care.

But why especially produce a class of ‘young onset dementia’?

A key message is “Dementia is not just about old people”.  But does distinguishing a group of “young onset dementia” reinforce or compromise this key message?

Members of the public aren’t on the whole aware of “young onset” other conditions, e.g. cancer, where the syndromes may affect a diverse range of people. One hears of ‘juvenile arthritis’ but this is rather different. Of course it is reasonable to identify a group of patients from a certain age, such as department of medicine of the elderly, if specific ‘needs’ of such patients can be addressed such as co-morbidity, polypharmacy, increased likelihood of falls, increased prevalence of dementia or frailty. But it’s worth thinking that 30-40% of an acute medical take routinely involves people aged 65 or above, and if you go onto any general medical ward the bay can resemble a bay of ‘geriatric patients’.

The age of 65 might be considered a completely arbitrary cut-off from a number of perspectives. For example, most of us can think of spritely 90 year-olds who look no older than 48 year-olds living with several long term conditions (indeed might look younger). And one wonders whether this cut off has taken on board other trends in society, such as trends for increased retirement or pension ages, or general trends in longevity?

‘Young onset dementia’ tends to be younger patients with dementia which normally presents in the older age group such as Alzheimer’s disease or vascular dementia, or older people with conditions normally associated with younger people e.g. Down’s syndrome or Niemann-Pick. An argument for catering for specific ‘needs’ in young onset dementia, such as genetic counselling where there is a strong clear pattern of inheritance for the leukodystrophies, is feasible. But this wanders into tricky ground if you argue that people with ‘young onset dementia’ demand special consideration because of ’employment and family’ – older people of course have concerns too about employment and family.

The ‘catering for needs’ argument is pivotal to lobbying and charities. But there might be inadvertent consequences if, say, you argue that younger people with dementia are entitled to supported living with special housing and assistive technology, whereas older people ‘ought to be in care homes’. There are very good clinical reasons for why younger patients might benefit from residential settings, such as complex medical history or repeated falls. There is a problem if is a societal expectation that older patients in care are seen rather as ‘warehoused’, a particularly real concern if such persons were inappropriated prescribed psychotics to keep them quiet.

I personally would much rather speak with a 76 year-old worldly man with life histories to share and wisdom to impart, than spend time with a 45 year-old racist, sexist bigoted arsehole. Everyone is entitled to the highest quality of care and support in dementia, and, quite frankly, ageism in either direction can be found as indirect discrimination in procedures, policies or processes which act to the detriment of a class of people under the Equality Act. This potentially is amenable to judicial review.

Finally, I do wonder whether the term is actively misleading. That is, people think of ‘young onset dementia’ as clinically comprising a totally different set of conditions – but which are quite homogenous in pattern, time course and outcome. I meet quite a lot of people who don’t realise that many of the conditions which cause young onset dementia also cause late onset dementia, such as Alzheimer’s disease or vascular dementia.

I really feel that there should be constructive scrutiny of the term ‘young onset dementia’. As with all labels, one feel intuitively it should be enabling rather disabling. Some people will approve of the label; others won’t. But it’s a debate I feel we should have in the open?

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