Little help for family carers suffering 'hidden harm', expert warns

Carers want to protect relatives vulnerable due to dementia, living with disabilities or suffering mental ill-health. 

Some family carers suffer “hidden harm” including being hit, threatened with knives, or emotionally abused, but there is little help available, a social work expert has warned.

This is not widely known as carers want to protect relatives vulnerable due to dementia, living with disabilities or suffering mental ill-health. 

An estimated one in seven people in Ireland are now carers.

“There is generally a perception that this topic is taboo or very sensitive by carers, so carers are reluctant to talk about it,” said Dr Sarah Donnelly of the School of Social Policy in University College Dublin and lead author on new Irish research in this area.

Abuse can include “shouting, screaming, damage and destruction of personal possessions or the family home”, she said.

Some people experienced "a significant level of physical violence", she added. 

One dementia carer said: “Things spiralled out of control. 

"I think it was a kind of psychotic episode where she started threatening us with knives and she was taking the knives with her in the car when she was going out.” 

One person talked about “that sense of guilt, failure”.

An carer said of their situation: “This is not wilful abuse, like it’s abuse but within the context of [that person’s] autism and responsive behaviours.” 

Another person said: “The community mental health team immediately put her on anti-psychotics. 

"We didn’t get any tips on how we could deal with her behaviour.” 

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Ms Donnelly said evidence is emerging of “significant long-term negative impact” on the health of carers experiencing harm.

“There have been numerous calls for all stakeholders to work more proactively with families when care and harm do intersect,” she said.

One person described her shock when a professional carer reported her father who had dementia to gardaí.

A mother described how she struggled to get help caring for a child with autism.

“I ended up in A&E with bruises and four broken ribs and 'C' was taken in by the guards on a Section 12 [order]. 

"This is how C ended up in voluntary care,” she said.

“The poor guards, they know C inside out, and they even have said to me that 'it’s so unfair that you have no other choice but to ring us'.” 

Ms Donnelly spoke of the “very hidden nature of the behaviour” and the ongoing “significant impact” of services drawing back during the pandemic.

Her interest in this area arose from previous work partnering with Family Carers Ireland.

The research team advised “a range of intersecting enforceable legal rights” would help protect carers.

The carer and the person they care for should be entitled to an assessment of need, with a statutory entitlement to any services identified. 

They also advised “proactive support from a social worker” is needed.

Ms Donnelly presented the findings at a seminar on Wednesday. 

She spoke alongside British researchers who raised similar concerns for carers and their families in their countries

Exploring unintentional ‘carer harm’ Insights from family carers and professionals: An Irish case study is published in The British Journal of Social Work.