Mental health declines when becoming an unpaid carer
14 November 2023
Researchers call for policy changes so caregivers’ mental health is safeguarded, with a focus on young adults.
The mental health of people comes at a cost when they take on unpaid caring roles for friends and family. That’s according to research from St George’s, University of London and UCL which is published today in The Lancet Public Health.
Becoming a carer was linked to increased psychological distress for carers of every age in the study, including those aged 16-49. Mental health function also declined when becoming a carer in those aged 30-64.
The researchers say this mental health change in carers across the UK should spearhead national changes to the way they are supported to avoid a decline in their own health and wellbeing, not forgetting younger caregivers.
This evidence coincides with publication of a landmark APPG report on young and young adult carers whichreveals the vast numbers of younger carers who are notidentified early enough, with an average waiting time of three years until young carers get linked to any support.
As the UK population ages and the cost-of-living rises, unpaid care of family and friends has become an increasingly important part of care in most countries. The United Nations estimate that unpaid carers meet 75-90% of care needs , and although young adults are often overlooked, they make up at least 376,000 of the carers across the UK .
Previous research has found that the general health of unpaid carers is poorer than non-caregivers. But until now, there has been little research into how people’s mental health changes when they start being a caregiver, and whether this varies by age, gender and the amount of care they provide.
Dr Rebecca Lacey, lead author and Reader in Social and Lifecourse Epidemiology in the Population Health Research Institute at St George’s, University of London said:
“Younger carers are often overlooked as caring is seen as something that older adults do.
“We urge health leaders to take this evidence seriously and ensure that health practitioners quickly identify carers of their patients, including those who are younger adults, so their health can also be reviewed. This is going to be crucial to break the cycle of care need.”
Researchers used data from more than 17,000 peoplein the UK Household Longitudinal Study between 2009 and 2020 to investigate mental and physical health changes around the transition to becoming a caregiver for the first time in adults as young as 16 years of age.
Data was collected on 16,906 people from the General Health Questionnaire (GHQ-12) which measures psychological distress and on 17,909 people from the 12-item Short Form Survey (SF-12) which measures physical and mental functioning . The team looked at the mental and physical health of caregivers eight years before, during, and eight years after becoming a carer, comparing them with non-caregivers who were otherwise similar.
They looked at four different life stages - early adulthood (16-29 years), early mid-adulthood (30-49 years), later mid-adulthood (50-64 years), and later life (65+ years).There were more women than men who became caregivers in every age group, but the effect of becoming a carer on health did not differ for men and women.
Compared to non-caregivers, carers aged 16-29, 30-49 and 50-64 years had the largest increase in psychological distress when becoming a carer with a 0.37, 0.39 and 0.39 point increase in GHQ score, respectively. Carers aged 30-49 and 50-64 had the largest decrease in mental health function, with a 0.54and 0.46 point reduction in the SF-12 score, respectively.
Although these are modest changes, researchers say they unequivocally warrant the need for action to protect the declining mental health of people when becoming caregivers.
The team also found that people who provided a high intensity of care (20 or more hours per week) experienced increased psychological stress and decline in mental health. In carers 30 years of age and above, poorer mental health persisted for several years after becoming a caregiver so early identification is key to preventing long-term mental health effects.
Physical health did not change upon becoming a carer, but there was evidence of poorer physical health prior to caregiving compared to non-caregivers.
Professor Anne McMunn, Professor of Social Epidemiology at UCL, said: “It’s less common for people to become a caregiver in early adulthood when there are likely to be many competing social roles such as post-secondary education and relationships, as well as establishing a career. Early and mid-adult caregivers were likely to be caring for a parent, representing a challenging role reversal. Together these factors could contribute to why psychological distress was higher in these age groups.”
Rohati Chapman, Carers Trust’s Executive Director for Programmes, Policy & Impact, said: “Carers Trust welcomes this much-needed research showing that unpaid carers are at risk of poorer mental health and wellbeing. Our latest adult carer survey found that almost half of unpaid carers are not getting the support they need. This was particularly the case for carers from minoritised ethnic communities, LGB+ carers, older people, women, and those from poorer backgrounds. In a separate Carers Trust survey, young carers also told us that mental health support is their top priority, with many saying the intensity of their caring role is increasing. Unpaid carers are making huge sacrifices to look after family members and friends. It is vital their health and wellbeing should not suffer as a result. They must have access to effective mental health provision in their area and to dedicated carer support when and where they need it. Our network of local carer organisations are ready to help with this but it is clear that support must be ramped up across the board.”
This study was funded by the UK Economic and Social Research Council.
Jordyn, young adult carer, said: “I have experienced a deep-rooted feeling of guilt for prioritising my own mental health over caring for my dad. I was in hospital for my mental health and all I could think about was who would help my dad. Who would do his medication? Who would make him food? Who would help him get up and down stairs? The harsh truth is that us young carers don’t care for ourselves, and it’s tough but we’re not our own priority. We even go as far as to mask our symptoms and struggles because we don’t want to be the problem for someone else. We break down in silence and go longer without getting help because we have someone else that we are responsible for. We carry huge burdens and still go on normally. This needs to change and there has to be better support.”