We need to talk about loneliness

Dr Shibley Rahman is an academic physician interested mainly in dementia and frailty. He tweets at @dr_shibley

This was my first ever BGS conference, just down the road from me, at the Wellcome Collection, London. The day was spent discussing ‘Loneliness in older people and its impact on health’ chaired by Professor Tahir Masud (@TashMasud), President-Elect of the British Geriatrics Society.

In a recent paper by Utz and colleagues (2014), the following is offered:

“The term loneliness is often equated with social isolation or social participation. However, seminal work attempted to distinguish loneliness from these constructs by defining it as the cognitive or psychological appraisal of social relationships and activities. For example, loneliness has been conceptualized as the lack of “meaningful” social relationships or “incongruence” between actual and desired levels of social interaction.”

Actually, that paper was all about spousal bereavement.

The CEO of “The Silver Line”, Sophie Andrews, presented a very moving film about this in the afternoon.

Overall, I ‘get’ the effective campaigning device to ‘end loneliness’ but I wonder whether this is possible. And it’s great that there is now a new Minister for Loneliness, so there is a clear need for the BGS to be part of forming the political agenda.

I don’t wish to deprive people of hope, but, if you were to feel lonely still at the end of the campaign, are you a failure? I’m reminded of the #EndAlz hashtag and the meme ‘a world without dementia’. So – then – what about the people who will continue to live with dementia or loneliness?

I was relieved to hear speakers on occasion embrace the idea that ‘loneliness’ potentially could engender a sense of “otherness” or outright stigma. As I have previously argued for frailty, indeed here on the BGS blog (see my blogpost 25 June 2017), such negative labelling could be a powerful barrier to people actually engaging with positive approaches.

One of the speakers spoke of ‘reciprocity’ with people who are lonely, but my experience with frailty and dementia is that good intentions can inadvertently or intentionally promote ‘victimhood’. We might be better off in framing loneliness not as something to eradicated like polio but something to be ‘lived better with’ or survived.

On that note, I felt generally uncomfortable of quite subtle manoeuvres to shoe-horn loneliness into the medical model. For example, one might talk of single interventions to prevent or ‘treat’ loneliness, utterly ignoring the complexity surrounding the life course of an individual person.

I agree “social prescribing” is an attractive alternative to a simple pharmacological pill, but equally I must say that I am concerned about social prescribing being seen as a simple ‘magic bullet’. Too easily, the focus can become on activities such as gardening or football rather than the plethora of person-centred benefits, such as exercise, social interactions, and so on.

I wouldn’t have been particularly surprised if somebody wishing a ‘quick fix’ to loneliness would calculate an ‘electronic loneliness index’, drawn from deficits on a database (e.g. osteoporosis, osteoarthritis.)  And then we might be ‘case finding’ or ‘diagnosing’ loneliness, possibly on ward rounds, rather than having a simple conversation starting with ‘What matters to you?’

An intriguing eruption happened during the conference how one of the people introduced by Professor Helen Stokes-Lampard (@HelenRCGP), “Enid”, was thought about in terms of having her needs addressed for loneliness, rather than being treated for depression. [“Enid” is also described in a conference speech here.] A Doctor in the audience confessed she might have treated “Enid” for depression. And here’s the rub for medical doctors. There was an overwhelming preponderance  for clinicians to view ‘loneliness’ solely through “patient factors”, rather than other social or environmental factors which could matter as much, if not more, to a person (e.g. social care, housing, community assets.)

Throughout the whole day was a lack of clarity on assets component to the problem (social health) or the deficits component (loneliness).

Loneliness is clearly an issue which might survive the integrative processes of re-organising the NHS, possibly through its own APPG or ‘national loneliness strategy’. But I think clearly conversations with non-statutory services now have to be started before ACOs see the light of day (see the recent Health Select Committee report on integrated care). Otherwise, loneliness will literally become registries, preventive and proactive care, being treated purely through the medical lens as a long-term condition.

One final note. Before I got involved with frailty, my big academic focus was in dementia. So, listening to a superb speech by Professor Alistair Burns, CBE, felt like a re-union. I know the NHS England “Well pathway for dementia” policy well, and I’m minded of the centrality of carers to this.

With the NHS currently seeking to draft the next steps to the ‘Five Year Forward’ view soon, the case must be made also for how people who are lonely access and use NHS and social care services. This, for me, takes loneliness out of the ‘nice to have’ box in policy and puts it firmly in the ‘essential’ box for the NHS. There is woefully little research on what happens to people with dementia, dementia, or frailty, as ‘patients’ or ‘service users’, if there are literally no friends, family or paid carers around to give a corroborative account?