Advice for other carers

This Talking Point is about carers’ advice for other carers. It includes advice about how to better communicate with the person being cared for and with mental health practitioners, as well as particular advice for new carers, carers of young people, and older carers. Finally, there are suggestions for how carers can better care for the person being cared for and themselves. (See also Advice for mental health practitioners and Supporting treatment decisions.)

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Improving communication with practitioners and the person being cared for
New carers
Carers of young people
Older carers
Choosing to care and caring for oneself


Marta described the importance for carers of being ‘well-informed’ in order to gain confidence to ‘speak up’ and initiate ‘discussions’ with practitioners about the treatment the person being cared for received.

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Improving communication with practitioners and the person being cared for

Many people talked about the importance of improving communication between carers, practitioners and the people being cared for, some describing how clearer communication could better support decision making about treatment (see also How to increase carers’ participation in supporting treatment decisions). Some carers outlined what they thought improving communication required of carers. Marta and Alexia talked about how they had initially lacked, as Alexia put it, ‘a voice’ in treatment settings, and described how they had learned to, in Marta’s words, ‘speak up’ to practitioners. Mike emphasised the importance of reciprocal ‘relationship building’ between carers and practitioners. Rowan said this could foster ‘rapport’ that would assist treatment decisions.

Rowan said carers can’t expect to ‘just develop rapport’ with practitioners. He gave advice about how carers could go about earning practitioners’ ‘trust’.

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Lisa said ‘a big thing’ that was ‘currently lacking’ was education and resources for carers and the people being cared for to inform them about supported decision making mechanisms.

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Some people we talked with described the role of carers in promoting honesty, trust, patience and respect in their relationship with their loved ones, which could support discussions about treatment in both voluntary and compulsory treatment settings.

Elizabeth said she and her son had over time developed trust, honesty and patience in their ‘great relationship’. This meant Elizabeth could ‘connect’ with his psychiatrist to support his ‘journey’ to be ‘fairly smooth’.

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New carers

Many carers expressed concern about the lack of guidance provided for new or ‘novice’ carers of people diagnosed with severe mental health problems. Julie described what she felt she had needed, in hindsight: ‘I needed a personal contact, I think, is what I needed. I needed somebody to talk to. Because a lot of [mental health internet resource] is perhaps focused on the person that’s suffering from depression. Not so much on the carer. That’s what I was looking for – how could you help a carer?’

Lisa encouraged new carers to be ‘open’ and ‘honest’ about their experiences in the mental health system and to keep a record in case they needed to make use of the Mental Health Complaints Commission.

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Bronwyn, a carer in a regional area, described what she thought new carers needed to be told from their ‘first port of call’.

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Carers of young people

Two carers we spoke to, Julie and Christene, were caring for children under the age of 18 (minors) and described symptoms of mental health problems in young people. Christene described how a paediatrician she had known for 33 years was teaching her how ‘the brain works … and affects your behaviour’. As she explained: ‘We all learn, righto, kid’s naughty, send him to your room. No … you don’t do that with a child with attachment disorder. It’s – “You’re having trouble playing at the moment, come here to me and let’s have a talk about this”. It’s like opposite’.

Ballagh, whose now adult son was diagnosed at age 10 with ‘deep depression’ advised that ‘depression in children does not come out like it does with [adults]’. She said, ‘They get naughty and they don’t sleep well or they sleep too much or don’t take care of themselves. They don’t have a shower if you don’t make them’. Similarly, Julie said she had thought that someone who was depressed was ‘sad all the time’. As a result, she had not ‘quite understood’ when her then 15-year-old daughter said she felt depressed because she seemed to be ‘functioning as normal’.

A few carers, like James and Rosemary gave advice about the importance of early recognition and treatment of mental health problems in young children and adolescents (see Carers’ experiences of person cared for first becoming unwell). Julie identified ‘stigma’ as an obstacle to early recognition of possible developing mental health problems amongst adolescents.

Julie said educating parents of adolescents about ‘what to look out for’ as symptoms of depression was essential for early recognition and treatment.

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Older carers

A common theme among older carers like James and Bev was their worry about who would support the person cared for when they died. Iris said becoming ‘too old’ to care for an adult child at home was a key challenge for older carers: ‘… it’s become a real problem because now [the person cared for is] in their possibly forties, fifties and … it’s too late for them to move out on their own’. Iris advised that older carers: ‘really should talk about accommodation … earlier rather than later to the carer consultant. Not wait until it might get to a critical point and they get more set in their ways and it’s more difficult’. (See also Supporting quality of life of person cared for.)

Elena offered some suggestions to help carers and family of people diagnosed with severe mental health problems to ‘encourage’ the person being cared for to be independent rather than co-dependent in the home.

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Choosing to care and caring for oneself

A few carers emphasised the importance for carers of knowing that they had a choice to be a carer. Tracey said she had made the decision to support her partner based on her feeling that she was ‘happy to ride the good times and the bad times’. However, she thought a lot of people would not make a conscious decision to care but would stay because they felt ‘too guilty to leave’. Tracey and Rich talked about the need to, as Tracey put it, ‘look after yourself’, once a person decided to be a carer. (See also Carers’ experiences of caring for themselves.)

Rich advised male carers that ‘equally as important’ as the commitment to being a carer was the need for them to care for themselves. He suggested what self-care might entail for male carers.

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Mike described finding ‘little things’ he shared with his children and wife as an important part of caring for himself and motivating his commitment to continue caring.

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