In the second in a series of blog posts on the experience of living with frailty, we discuss research findings on how people acknowledge and adjust to changes in their health and capacity.
Age UK set out to better understand the lived experience of people living with frailty. We worked with Ipsos MORI to spend time with older people to hear and see the challenges they face and what in their lives was most important to them.
One of the key themes that came out from the research was the different ways in which people acknowledged frailty. As we said in our blog post last week, older people generally rejected the term frailty, particularly when using it to refer to their own circumstances.
However, many still communicated a sense of “slowing down”. Some of the participants felt that some things were becoming more difficult or that they were frequently dealing with pain or fatigue.
A BEFORE AND AFTER
Others spoke of an event – an operation, for example, or a fall – which acted as a reference point. Less a case of slowing down, but a sense of a before and after.
“Not so easy since I got a bit, you know, not so easy since then”.
This meant that a change, and potentially the chance to adapt, was easier to acknowledge but perhaps came with a greater sense of loss for how they were before.
How people and the families respond at this moment can have significant implications for their longer-term wellbeing.
One participant, Haydn, put frailty in terms of aids and assistance. “Is it when you pick these up [touches walking stick] that you become frail? I don’t think so. I think it’s assistance really – don’t think it’s anything to do with frail”.
Hayden had a large support network around him, allowing him to remain active and engaged in his community. Seeing frailty through the lens of assistance, the impact becomes less about a lack of capability and more about a lack of support. This is familiar territory for the social model of disability.
FRAILTY IS DIFFERENT FOR EVERYONE
These distinctions are important. People will not arrive in a state typically thought of as “frail” in the same way. Frailty is not relative to an age you reach or a set of identical circumstances.
Equally, how people respond will be different. For some, acknowledging frailty and making changes could mean they can remain independent for longer. For others, supporting sudden transitions will be important in establishing a new way of living, and this will often mean providing psychological and social support.
The default for health and care services faced with someone with complex needs is to identify only deficits. One man we spoke to reacted angrily to discharge notes provided for his wife when she left hospital:
“The report said ‘a frail old lady of 88’. I said this is lies! She’s got more willpower and determination in her body than anybody I ever knew!”
Approaching care that acknowledges a person’s very personal journey to living with frailty and basing it on what they can do rather than the things they cannot will be a crucial first step in improving the care of people living with frailty.
Next week we will look at independence and control.