A powerful session at the recent Royal Australian and New Zealand College of Psychiatrists’ Congress in Cairns focused on loneliness and its part in mental illness, mental health care, and recovery.
Titled ‘The value of connectedness: lived experiences of loneliness and isolation in our communities’, it was run by the RANZCP’s Community Collaboration Committee (CCC), made up of people with lived experience of mental illness and their carers and psychiatrists who treat mental illness.
As well as powerful insights about loneliness and from consumers and carers, it gave glimpses of programs and places that are tackling these issues.
They include Trieste in north east Italy – where the rights of citizenship, including social relationships and social inclusion, for people with serious mental illness are facilitated and enhanced, in Melbourne via local citizen assemblies, and in Auckland where cross-sectoral initiatives are working to ensure homelessness for single mothers is “rare, brief and non-recurring”.
In the #LongRead below, CCC Chair Associate Professor Simon Stafrace, who is the Alfred Health Program Director of Mental and Addiction Health in Melbourne’s inner south, reflects on the session and how the RANZCP can contribute to an interdisciplinary approach that connects clinicians, people with lived experience, and experts in mental health, service design, urban planning and community development.
His article is the latest in our #RANZCP2019 conference reporting series.
Simon Stafrace writes:
In 2018 the Conservative Government in the United Kingdom appointed a Minister for Loneliness for the first time ever.
It followed a report that found that more than nine million people in Britain (about 14 per cent of the population) often or always feel lonely and prompted an upsurge in interest in programs aimed at tackling what has been referred to as the “growing problem of loneliness” and a “public health epidemic”.
So what is loneliness and why does it matter?
And why would the Community Collaboration Committee (CCC) of the Royal Australian & New Zealand College of Psychiatrists (RANZCP) – made up of people with lived experience of mental illness and their carers and psychiatrists who treat mental illness – want to hold a symposium at the 2019 Congress in Cairns to explore its impact and ask whether mental health advocates should actively promote action on this issue in Australia and New Zealand?
Emerging from the discrepancy between desired and actual social relationships, loneliness is a multifaceted and subjective experience.
Williams’ character said:
“I used to think that the worst thing in life was to end up all alone. It’s not. …(it’s) ending up with people who make you feel all alone.”
When loneliness is long-standing & pervasive
Loneliness is fundamentally aversive, unlike solitude, which can be both sought after and welcomed. As a signal to motivate behaviour change and re-establish social connections, loneliness can have both purpose and utility. But what if loneliness becomes long-standing and pervasive, as is a reality for thousands of Australians and New Zealanders?
It would be fair to say that the causes of loneliness are complex, and that the risk factors identified are multifactorial and bi-directional.
In this way, loneliness appears more prevalent in people with depression, schizophrenia and social anxiety and with personality styles characterised by neurotic, introverted and conscientious traits.
It is associated with unhelpful beliefs about social relationships and coping styles that are overwhelmed by strong emotional responses as opposed to problem solving techniques.
Triggers can include illness, relationship breakdown, unemployment or bereavement.
Research also tells us that heritable biological factors link a propensity to feel lonely and a susceptibility to some mental disorders.
And then there are connections to the social determinants of health, as indicated by studies showing links between loneliness and high unemployment, poor access to healthcare, lower income, poor public transport & quality of residential neighbourhoods including access to places that are green, active, pro-social and safe (see also this Anglo-Dutch comparison).
Longitudinal studies suggest that loneliness is itself associated with a range of health consequences, including:
- changes to mood (dysphoria, despair, and boredom)
- behaviour (smoking, increased consumption of alcohol, poor nutrition, lack of exercise)
- changes in thinking (undervaluing self, catastrophising) and cognitive ability (inattention, memory impairment & cognitive decline)
- biological (sleep problems, immune and hormone effects, changes to brain activation), and
- social impacts (relationships, employment status).
Loneliness predicts increased mortality and morbidity, including physical health problems, such as hypertension, insomnia, obesity and coronary heart disease and increased mental health complications including depression, anxiety, suicidal thoughts.
The short- and long-term consequences of loneliness amplify the experience of loneliness, and so the cycle is reinforced and extended.
Prevalence of loneliness
Measuring loneliness is difficult. There is no standardised measure used consistently across studies and sampling methods differ substantially.
Nevertheless, there are useful estimates of the prevalence of loneliness in our communities including from the Household, Income & Labour Dynamics in Australia (HILDA) Survey conducted between 2001-09.
Analysis of that for The Australia Institute found that about 9 per cent of people experienced loneliness in any given year and that people living in lone person or lone parent households were twice as likely to experience loneliness as those living in couple households.
It also described important gender differences, with loneliness being more commonly reported in the survey period among men (36 per cent) than women (29 per cent), although this is not a consistent finding with other studies finding loneliness to be more common in women.
In a similar vein, the Australian Psychological Society’s Australian Loneliness Report described an online survey of 1,678 people, of whom 28 per cent described feeling lonely three or more days a week. This was associated with a worse health status and a higher likelihood of being depressed or anxious about social interaction.
The situation among people suffering from mental illness and their carers is even more concerning.
While loneliness is not an inevitable consequence of the experience of being a carer, caring can restrict the social networks of informal caregivers, who can experience both covert or overt forms of exclusion from others in the community as well as “affiliate stigma”, the experience of self-stigmatisation that arises among family members of targeted minorities, including people with mental illness.
Carers of people with psychosis are especially vulnerable, and studies indicate they are up to 10 times more isolated than non-carers and significantly more socially isolated than carers of people with other health conditions.
The Australian National Survey of Psychosis studied 1,642 people with schizophrenia and found that 80 per cent endorsed feeling lonely in the previous 12 months. Social isolation was nominated by 41 per cent of GPs and 37 per cent of participant-patients as one of the top three barriers to recovery, together with financial problems and unemployment.
The importance of these findings is reinforced by a further analysis of the same dataset that feeling lonely is significantly associated with metabolic syndrome and dyslipidaemia in people with psychotic disorders.
Looking through a frosted window
Experiences of loneliness among people with mental ill-health were described in one study as “looking at the world through a frosted window.” This metaphor resonated with members of the RANZCP CCC, who shared their lived experience at the #RANZCP2019 symposium held on 15 May 2019.
One participant described the experience of becoming (mentally) unwell:
“It is an isolating experience…. people react differently to you than they would in “normal” circumstances. Often an exacerbating feature for me when I am unwell is being asked to explain what is going on. How come I am like this? Personally, I find it overwhelming…”.
In a moving account, another participant talked about how the caring role can impede intimacy, which then leads to an internalised sense of loneliness and disconnection. Carers can lose sight of themselves and suppress their own needs and this can have unintended consequences that make them feel worse and more burdened.
While providing care to a family member or friend can provide psychological benefits, carers can feel isolated in bearing this responsibility, particularly when governments and/services fail in their role to support the person with a mental illness and the carer.
The carer then can respond to their situation in a variety of ways. Some carers are drawn to advocacy for connection and meaning, and others seek the support of peers, identifying with the shared experience which helps overcome the feelings of self-stigma, isolation and “otherness.”
A third participant at the symposium shared the experience of a friend who sought to die by suicide. She highlighted the discrepancy between a healthcare model that emphasises personal responsibility, diagnosis and a clinical approach to treatment of mood and behaviour and the personal experience which cries out to be heard and understood, of being “assessed but not listened to”.
The person with mental health problems will mentally “check out” of a treatment setting in which she feels she cannot be helped to make sense of her behaviour and feelings.
“I was dying to tell you how lonely I was feeling… (I needed you to) believe my reality, my perception of loneliness as being real and horrific.”
So how should mental health professionals respond?
Clinicians can take an interest in the social experience of the patient, of course, and make enquiries about the experience of loneliness and its impact.
There are individual and group treatments. The most effective are the cognitive therapies, which address maladaptive social cognitions or the unhelpful ways in which people can think about their social world.
Many other therapies intended to help individuals experiencing chronic loneliness have been studied, including an online adaptation of a Friendship Enrichment Program as well as interventions to create opportunities to meet others, to increase social support and to teach social skills.
But their effectiveness is limited because, as Robin Williams’ character implied so powerfully, loneliness is mediated by the quality of contacts and not just their quantity. Meaningful relationships depend on mutuality and not merely support, and gains are typically short-lived and do not generalise beyond the setting of the intervention.
Also lacking are psychosocial interventions that specifically target loneliness in psychosis, and that account for additional barriers such as difficulties with social interactions, impoverished social networks and negative symptoms (Lim et al, 2018).
Health service design can play a critical role in enhancing social connections.
We heard at the symposium that the mental health system in Trieste in Italy is a lead World Health Organisation (WHO) Collaborating Centre for Service Development.
It has adopted a bold strategy of de-emphasising hierarchical power and hospital care in favour of community services in which the rights of citizenship, including social relationships and social inclusion for people with serious mental illness, are facilitated and enhanced.
The Trieste model demonstrates that tackling loneliness and social exclusion depends on community ownership and acceptance, as well as financial and legislative support from local and regional government.
Barriers to adopting a similar model in Australia include the fragmentation of Commonwealth and State responsibilities, healthcare models that do not integrate clinical and psychosocial services, funding models that drive activity and not outcomes, and community fear and stigma.
Local governments and NGOs can also contribute and a number are collaborating with academic institutions in the Australian Coalition to End Loneliness.
There are other cross-disciplinary pathways towards change. The Inner South East Metropolitan Partnership in Melbourne (ISEMP) is a State Government initiative in Victoria that brings together community and business members, including myself, and representatives of state and local government to advise state government on what matters in their region.
Citizen assemblies held by ISEMP in 2017 and 2018 identified connectedness, inclusion and social interaction as key concerns.
In 2018, the Victorian Government allocated funding to enable the ISEMP to work with an evaluation and program design consulting group and consult with content experts and people with lived experience. Three cohorts will be targeted- youth, older people and parents of young children.
An exciting outcome of this work will be the development of journey maps that describe the pathway into loneliness described by people in these three cohorts. These will inform the development of an asset-based map of services in the region to tackle loneliness.
A similar methodology has been used by the Auckland Council to deliver collaborative, cross sectoral initiatives for the Auckland region to ensure homelessness for single mothers is rare, brief and non-recurring.
The symposium made it clear that loneliness is a public health issue with impacts upon quality of life, health and service utilisation.
It is also a central experience for many people with severe mental illness and their families.
Solutions to loneliness can be clinical, peer-led, social, or embedded in the experience and design of places, communities and services.
Medical colleges, including the RANZCP, can draw attention to this element of human experience and contribute to an interdisciplinary approach that connects clinicians, people with lived experience, and experts in mental health, service design, urban planning and community development.
Thanks to members of the RANZCP CCC Committee including De Backman-Hoyle, Brian Vickers, Sharon Lawn, Helen McGowan, Daniela Vecchio, and the Victorian Government Department of Jobs, Precincts & Regions ISEMP Advisory group, chaired by Alicia Darvall, who all contributed material and editing advice.
Associate Professor Simon Stafrace is the Alfred Health Program Director of Mental & Addiction Health in Melbourne’s inner south. He has been a psychiatrist in the private and public sectors for over 25 years.
The session via Twitter at #RANZCP2019
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