Time for a separate psychosis caregiver service?

Informal caregivers of people with psychosis are a seriously neglected group. Around 2% of the adult general population will have a diagnosis of psychosis during their lifetime. Up to half of these people will have caregivers. Given that the over-16 population in the UK is around 49 million, and that one in 200 people has a psychotic disorder, around 245,000 people will be affected. This suggests, conservatively, that at any one time up to 120,000 people might be taking a primary role in caregiving for another adult with these kinds of mental health problems. Others in the family, such as siblings, children or grandparents, will frequently be involved as well, in what can be extremely difficult, demanding and sometimes lifelong roles. Carers in general are defined as “someone who without payment provides help or support to a partner, child, relative, friend or neighbour who could not manage without their help” ( www.carers.org ). Caregivers of people with psychosis, have the added difficulties of shame, social isolation and stigma that are still attached to these diagnoses, especially if the service user has a forensic history. They may in addition feel they have not had a choice, but have become caregivers because someone else in the family has serious mental health problems.

Even though these can be mutually rewarding relationships, many caregivers will have to deal with a range of unusual or bizarre symptoms, such as delusional thinking, suspicion, or voices, socially embarrassing problems, low motivation and dropping out of school, relationships, college or work. For some there will be crises involving the police and emergency services, perhaps in the middle of the night. At the beginning of such difficulties, caregivers can find themselves swept up into mental health systems, dealing with a wide range of clinical staff, and having to find out about diagnosis, prognosis, medication, sectioning and the law. Often with a first episode, caregivers may feel that things have not been going well, but have not considered a mental health problem, instead attributing problems to adolescent difficulties combined with too much cannabis. Other professionals such as teachers or GPs may agree with this for some time, as can the service user, who may really think there are no problems at all. This may result in caregivers dealing, by default, with a more protracted duration of untreated psychosis (DUP) and eventually a more severe and more shocking presentation.

As a result, we already know that caregiving roles in psychosis are associated with increased stress, exhaustion and distress, and contribute to carers' own physical ill heath. There is evidence that caregivers have higher rates of sleeplessness, post traumatic stress disorder and clinical depression than the general public. We also know that families themselves become socially isolated, and that the shame and stigma of such mental health diagnoses can cut them off from ordinary social support and opportunities to confide in others (Kuipers et al., 2010).

We now know from evidence-based family interventions in psychosis, that caregivers assist service user recovery and help reduce relapse rates (National Institute for Health and Clinical Excellence (NICE), 2009; Pharaoh et al., 2006). There is other evidence that service users who are isolated and do not have social or community support, fare worse (e.g., Morgan et al., 2010). However family interventions despite being recommended for nearly a decade, have been difficult to implement (Insel, 2009), and are not readily available. More crucially, such interventions have not been focussed on caregiver outcomes.

It has been argued for some time that caregivers have needs of their own, which tend to be underestimated, and which should be addressed (Kuipers, 2001). However, typically, caregivers are nobody's job. In psychosis the service user's needs and mental state have been the priority. The carer may be given support but only in relation to this. This is what needs to change. In older adult services or children's services, carers/parents are routinely seen by a team and their needs and wishes are taken seriously. In psychosis, where service users are adults, we seem to get trapped by this, into not seeing caregivers as individuals, caught up in a difficult and frightening process, who themselves need support, help and information. Even if service users do not want caregivers involved in their care, “confidentiality issues” do not preclude their close family, friends/relatives being given general information about what is happening (Slade et al., 2007) and being given relevant advice and support to meet their own needs.

The process of caregiving in psychosis has been shown to be like bereavement (Patterson et al., 2005). Caregivers may be suffering acute and then ongoing feelings of loss, sadness, pain, anger and upset. Where else would services ignore such feelings? We keep on asking caregivers to tell us what their needs are, and since the 1950s the answers remain much the same – they need information, they need practical advice, they need help with coping strategies (Scazufca & Kuipers, 1997, 1999), particularly to be able to be decisive and reduce avoidant coping (Onwumere et al., 2010), and they need emotional support.

However, the problem remains that these needs are not easy to meet. Information is now much more easily available than previously (e.g., www.mentalhealthcare.org.uk ; Rethink: [email protected]), but such information has to relate to your own problems, at a time when you need to know it. It may also have to be repeated many times over, because information is not best understood at times of stress, and when it is unwelcome (about a stigmatised mental health problem). Help with coping, particularly with negative symptoms and embarrassing behaviour can be particularly difficult to find, and then to act on. Such problems often improve only slowly, are not so amenable to medication, and need persistent, gentle prompting and encouraging, in order to begin to see change. Advice on active rather than avoidant coping is beginning to emerge, as above. Practical help may be available, but in overstretched and crisis-driven services, now likely to have restricted funding, carers will not be prioritized for this. Finally, the emotional upset of caregiving in psychosis can be seen by services as particularly difficult to deal with. It will include sadness, grief, shock, denial, anger, blame or even rejection. Being able to reappraise, re-adjust and accommodate to changes, needs to include being appropriately sad for a while, but also finding things to like about the person as they are now, being able to be encouraging by being gently persistent, and finding a mutually supportive relationship that works for both service user and caregiver. This can take many months or years, although some caregivers will quickly and intuitively understand that things have changed and the service user now needs different kinds of support, including being encouraged to be more independent again. Caregivers themselves can be especially helpful in offering support to others facing the same problems (RETHINK). For caregivers with clinical depression, there may need to be higher intensity support to deal with low mood and low self esteem, as well as specific help to deal with the problems at home. As in family intervention studies, this kind of help will include negotiating, problem solving, improving communication and optimizing recovery (Barrowclough & Tarrier, 1992; Falloon, 1985; Kuipers et al., 2002). Stanbridge and Burbach (2007) discuss how to set up an inclusive family support service in one area of the UK.

It would seem timely to focus on what caregivers need for themselves, separately from services designed for service users. I would argue at this stage, a psychosis family support service needs to offer low intensity help for those who are managing but remain stressed and upset, as well as high intensity support for those within the clinical range for depression and worry. Caregivers need to be able to access such services while they remain in caregiving roles. Despite financial constraints, such a service needs to be developed and evaluated and would be likely to be entirely cost effective longer term.

The initial family work studies in the 1980s showed that service users with psychosis did not react adversely (as had been predicted by some), but had improved outcomes. This showed that psychological interventions were surprisingly useful even in psychosis. The success of family interventions then helped in the subsequent development of individual CBT work for psychosis, which has also been shown to improve service user outcomes, without adverse effects (Wykes et al., 2008). It is now time to develop dedicated services for psychosis caregivers who find themselves sharing in this journey, but need to be offered their own support.