Carers’ views on medication

This Talking Point is about how the carers we interviewed said they supported the person being cared for in relation to take medication. Many carers talked about helping the person cared for to find medication he or she was comfortable taking, and about supporting the person cared for by monitoring the side effects of medication. Carers’ experiences of when the person cared for reduced or stopped medication are also discussed.

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Finding medication to support the person being cared for
Monitoring medication
Reducing or stopping medication

Finding medication to support the person being cared for

Most carers we spoke to said they thought helping the person being cared for to find medication that best supported him or her was central to their role as a carer. Many carers said they believed that finding the right medication could support the person cared for’s independence and capacity to live a more meaningful life.

Bronwyn learned through caring for her son that it was possible for her son, with ‘appropriate medication and care’, to live well as part of the community.

Kate saw a significant ‘difference’ in her brother after he started taking medication.

Most carers commented that supporting the person being cared for to find medication he or she was comfortable with could be a long process of trial and error. Many medications took a long time to take effect. Some people diagnosed with mental health problems commenced medications in hospital, which meant easy access to doctors and prompt changes could be made to medication if necessary. However, some carers felt they were not sufficiently consulted about medication by practitioners when the person cared for was hospitalised.

Elizabeth was glad her son started medication in hospital because the new medication caused side effects that would have been difficult to deal with at home.

Monitoring medication

Many carers described how they monitored the person cared for’s responses to medication after they had left hospital. Some talked about a ‘balancing act’ between achieving good results and minimising side effects of medication.

Sue found her son could function well with a reduced dose of his medication.

Interpreting the effect of medication on the person being cared for could be challenging for carers. Many said they often found it difficult to distinguish a side effect of a medication from the other problems experienced by the person cared for. Many carers said that deciding on a tolerable level of side effects for the person they cared for and learning how to support the person cared for to deal with them was central to their role as carer.

Saskia found it difficult at times to distinguish between the ‘symptoms of the illness’, the ‘side effects of the medication’ and the ‘real person’ that is her sister.

Most carers described common side effects of medication that the person cared for was taking. These included fatigue, lethargy and weight gain and such behavioural side effects as depression, suicidal or paranoid thoughts, reduced motivation and personality changes. Carers noticed that some side effects could be, as George put it, ’embarrassing’ for them and the people they cared for, such as uncontrolled salivating, which made people reluctant to go out in public. This could lead to low self-confidence of the person cared for and contribute to his or her social isolation.

Giving feedback to mental health practitioners about effects of medication was said by most carers to be extremely important for alerting practitioners to medication that was not working. One carer, Elizabeth, had an arrangement whereby she could contact her son’s psychiatrist when she thought her son had stopped taking medication. This made her feel she had ‘back up’ in her caring role. Some carers, like Rowan, said they started keeping detailed records so they could answer questions health practitioners asked about medication.

Bev observed her son’s medication side effects before deciding that he was ‘overdosed’ on the prescribed amount, which she communicated to his doctors.

Reducing or stopping medication

Many carers talked about how the people they cared for stopped taking or, as George put it, ‘experimented’ with their medication, which sometimes resulted in worsening mental health. Rowan described how his wife had an accidental ‘overdose’ because she had not felt ‘well’ and believed that taking more medication would help.

Sue’s son had an accident at home that required urgent medical attention after he was prescribed a high dose of medication.

Many carers said they could understand why the person being cared for would want to try reducing or stopping his or her medication. They felt this was often due to the side effects that the person cared for perceived to be intolerable, or to the belief of the person cared for that medication was no longer needed after a period of being ‘well’. A few carers, like Lisa and Ebony, were supportive of their loved ones’ decisions to reduce or stop taking medication preferably under a doctor’s guidance. They believed such changes required careful decision making and the participation of everyone involved – the person cared for, the carer and practitioners – who all needed to be, as Lisa put it, ‘on board’.

Lisa felt that doctors’ use of the term ‘compliance’ places ‘blame’ on people diagnosed with ‘mental illness’ when there could be many explanations for their decision to stop taking medication.