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

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

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

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

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

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

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

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

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

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

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

Table of contents

ToC

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We need to talk sensibly about frailty

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

 

 

 

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

 

For example,

 

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

 

(cited in Manthorpe and Iliffe, 2015)

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

 

 

References

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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My session at the end of life in dementia community of practice

I will on June 14th 2017 present a session on legal and ethical principles in end of life in dementia for a community of practice run for 38 specialists, for Dementia UK and Hospice UK.

Talk 1

I will give a hour one talk on the following topics.

  • Definition of end of life
  • Legal method
  • Introduction to ethical dilemmas
  • Four ethical principles
  • Duty of care
  • Mental capacity
  • Best interests and advocates
  • Advance decisions
  • Abuse and neglect
  • Advance care planning
  • Deprivation of liberty safeguards
  • UN Convention on Rights for Persons with Disabilities
  • Artificial nutrition and hydration
  • Do not attempt resuscitation
  • Assisted suicide and euthanasia

I will then discuss with the group collective responses to eight legal and ethical scenarios.

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Dementia and “the war against information”

data

 

It is perhaps easy to see why there is a session on ‘the war against information’ on today, this the first day of the Bilderberg meeting. The programme was helpfully disseminated by Wikileaks.

Healthwatch England has instigated a number of inquiries in the past over the barriers to poor care in dementia, and poor information has consistently been found to obstruct good care.

Poor information could be interpreted that there is none available to patients and users of dementia services. But this is unlikely to be the case. Due to the ‘internet of things’, you can even “ask Alexa” anything about dementia. Gone are the days where you would even want to quiz your GP on minutiae details over dementia perhaps.

Information does need to have some external standards though. The NHS Information Standard has had some success in maintaining safeguards so that the public can ‘trust’ information about dementia as NHS patients. One cannot help feeling though stopping fake claims about dementia is an impossible task, like King  Canute trying to “stop the tide”.

With so many political actors involved, it is however important to be able to see the wood from the trees. However, the claims are often heavily marketed and branded, and it can be unclear why certain ideologies are more correct than others.

Information is not necessarily the same as knowledge, which in turn not the same as wisdom necessarily. One may indeed wonder what the need for an experienced geriatrician, physician or psychiatrist Is in making a timely diagnosis of dementia, when a giant supercomputer can do.

Indeed, ‘big data’ have been successful at making the genome wide associations in dementia needed to make sense of the complicated inheritance patterns, revealing potential guidance on what sort of people are ‘at risk’ of developing dementia.

It is not however the volume of information which is the matter, but how it is communicated and chosen. This of course is pivotal, for example, if you might be choosing a residential home where you would like to live. Choice and control have been major drivers in the personalisation agenda of recent governments, manifest in a number of areas including personal budgets.

Information has of course to be retained long enough online and be processed appropriately. An inability to do this is part of the definition of where capacity is lost in English law. Capacity at one end is important in safeguarding certain people with dementia from making ‘bad’ decisions. However, it opposes the inalienability and universality of human rights, as specified for example in instruments such as the United Nations Convention on the Rights for Persons with Disabilities.

An over-reliance on software running on the “internet of things” is of course susceptible to a giant cyberattack, and there is worry that external agencies can dump malicious information worming their way into healthcare services. But it is important to embrace risk at all to ‘live well’ – similarly, we can’t be petrified that our computers, some helping with dementia services, are all about to shut down.

Finally, information like dementia friendly communities might seem instantly attract because of the appearance of cost neutrality. Indeed information may be cheap – but lack of wisdom in using it in dementia might be costly.

 

@dr_shibley

 

 

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