In health care, the word ‘frailty’ carries a lot of baggage. In its most positive sense, it is a phrase used by older people’s specialists to describe a particular state of health, usually characterised by multiple or complex physical and mental health and social needs.
This can then be a gateway to proactive care and support joined-up around the individual.
At the less positive end, it is a shorthand for older people in later old age, with multiple long-term conditions that are almost too difficult to manage. In this case the so-called ‘frail elderly’ may be recognised for having high needs but thought of as almost beyond help and given little support.
It is well known that older people do not identify with the word ‘frailty’. This was a strong finding from research we carried out in 2013.
However, we wanted to understand in more detail how older people felt about being referred to as “frail” and whether or not this could impact on their engagement with services.
At the same time, we wanted to understand how health professionals that do not specialise in older people’s care felt about the term and how this might impact on how they perceive older people.
A headline finding was that not only did the older people we spoke to not identify with the word “frailty”, they actually had a very strongly negative reaction to it.
Instead of seeing it as a potential gateway to services such as physio and occupational therapy, assessment in a falls clinic or mental health support, they perceived it as referring to ‘someone who can’t do anything, who’s wasting away’, as one participant put it.
This perception was mirrored, in many ways, by the health professionals we spoke to, and one GP described a person living with frailty as ‘someone skinny and likely to break, at an end of life state’.
For the older people involved, it was far more natural to speak of changes and threats to their independence rather than a set of specific physical or mental health needs.
As one participant said: ‘I switched to a smaller hoover but now even that is too much for me to push around on most days. It’s made me realise that I do need to let my daughters do things for me.’
Many used an illustrative scale of ‘independence’ where the bottom of the scale was almost total independence and the top, ‘perceived’ total dependence (e.g. living in a care home, being admitted to hospital). In the middle of this scale, there was usually a moment where their status quo was first challenged in a substantial way.
In the case above, it was realising they could no longer clean the house in the way they wanted to. For another research participant, it was not being able to meet with friends and socialise because they could no longer get out independently.
Some minor adaptations were often accepted as part of growing older, but losing the capability to do something you’ve always done represented a major turning point. Crucially, this turning point was seen almost as a point of no return and of rapid decline.
Possibly, the attitudes of some health professionals are a factor in this, where the moment to intervene is missed either because the options for support are limited or because these changes are just not picked up in a clinical setting.
One person made this point clear when they said: ‘Why on Earth would I tell my GP it’s taking me longer to do the ironing and I can’t get out into the garden anymore?!’ Yet this could be a crucial indicator of underlying problems.
Older people must be able to expect support that helps them through changes in their health and social needs. This must start with supporting people to have confidence that something can always be done.
The NHS must work to take the best elements of practice around clinical ‘frailty’, such as improving the availability of comprehensive geriatric assessment, and consider how to change the attitudes of those professionals who resort to thinking there’s nothing they can do.