Framing the narrative of frailty differently will help to promote wellbeing

Dr Shibley Rahman is currently an academic physician in dementia and frailty. His contribution on the diagnosis of behavioural frontal frontotemporal dementia, published while he was a M.B./Ph.D. student at Cambridge in 1999, is considered widely to be an important contribution to the field even cited in the Oxford Textbook of Medicine. He has a passionate interest in rights-based approaches which he accrued as part of his postgraduate legal training. He tweets at @dr_shibley.

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) stated 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 financial burden 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, along with 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 ill-being, 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 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 be 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  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.