CARING FOR THE CARERS: Access to high-quality information on the best way to help people caring for sufferers of bipolar disorder is needed, argues Kevin Madigan.
In Ireland there are an estimated 22,000 people with a diagnosis of Bipolar Affective Disorder. To put this in context, this is almost comparable to the whole population of county Longford. This illness is characterised by deep depressive episodes and episodes of elation and irritability.
Such occurrences can have devastating effects on the lives of both the sufferer and their carers. Many carers of those with bipolar disorder describe feelings of isolation and bewilderment about the illness and many carers would state that they have received little or no formal information from treatment teams. While others would say that they receive little outside support or have minimal access or knowledge as to how to access support systems.
Many carers and people with psychiatric illnesses report sourcing information on the nature, prognosis and treatments for various illnesses from a variety of different sources, such as text books and internet sites.
These can be extremely informative but it is often difficult to ascertain the source and reliability of the information. Misinformation can often add to the confusion and frustration of those seeking answers to many questions including optimum treatment options.
In terms of support and the gathering of information, there seems little substitute for direct contact with others in similar circumstances and direct contact with healthcare professionals, particularly those involved in the actual delivery of care to the person with the illness.
The depressive symptoms of bipolar disorder most notably are; persistent low mood, negative thinking, poor concentration, feelings of lethargy and poor sleep patterns.
These symptoms can often last from one week to several months and can cause many problems in lifestyle from damaging career opportunities to placing enormous stress on relationships.
The manic or elated phase can last from one week to several months and range from irritability to over talkativeness to over activity and disinhibition which, can occasionally lead to impulse control and activities such as overspending and dangerous driving.
The consequences of these can often lead to financial and legal difficulties and take their tolls on personal relationships. An interesting survey in New Zealand by the National Depressive and Manic Depressive Association found that only 20 per cent of people with bipolar disorder were married compared to 55 per cent of the general population and of that figure, more than 57 per cent were divorced or had experienced past marital difficulty.
A study by Mueser and colleagues in the US found that the impact of caring for someone with bipolar disorder was as great as that for those caring for someone with schizophrenia in terms of burden and stress endured.
A comprehensive study of bipolar disorder in the US by Perlick and colleagues found that out of 266 caregivers almost all experienced moderate or greater distress.
Most treatment teams in psychiatry would agree that the earlier the detection of a relapse of either a depressive episode or a manic episode, the greater the chances of providing early intervention either in a pharmaceutical form or a psychosocial approach or ideally a combination of both. Therefore it is shown the above interventions can greatly reduce impact of the illness on both the sufferer and the carer.
The Cluain Mhuire Service of the St John of God Order based in Blackrock, Dublin, has a long-standing tradition of providing carer education and include this programme as an imperative part of the treatment process.
A very successful study completed in Cluain Mhuire by Dr Eugene Cassidy and colleagues in 2001 on a carer education package in schizophrenia found that there were significant benefits for carers who attended a six-week psycho education course developed by Shane Hill and colleagues from the Department of Social Work.
Carers reported a large increase in knowledge base which may impact on the ways in which they view their ill relative. It would also suggest that carers would have greater knowledge on treatment packages and would aid them in being successful in resourcing the best treatment options. There were also significant reductions in the level of stress or burden experienced by carers. There were also direct benefits for the person with the illness, in that there was a fourfold reduction in re-admission to psychiatric hospitals up to two years after carers attend the psycho education programme.
This may be attributed to several factors, including carers ability to detect symptoms of relapse earlier, access services, manage with greater confidence and avoid the need for hospital treatment.
The Health Research Board of Ireland which is keen to support projects with positive and practical outcomes for patients and families of those with mental health problems is currently funding a three-year carer education study in Cluain Mhuire to explore the benefits of providing education to the carers of those with bipolar disorder and aims to evaluate the benefits of a psycho-education programme, a carer support group and a control group of carers.
The carer education programmes includes topics such as; how a diagnosis is made, symptoms and course of illness, treatment, rehabilitation, stress management, rehabilitation and an overview of current research in bipolar disorder.
The Cluain Mhuire Service and the St John of God order are currently training staff in their services in Malawi to provide carer education courses and to evaluate the outcomes.
Dr Clifford Haley and nursing colleagues from the Mental Health Services in Letterkenny, Co Donegal are involved in a joint research project funded by the Health Research Board to evaluate the outcomes of a carer education package delivered from Dublin using the latest teleconferencing technology.
If effective, this will prove an additional methodology to enable carers get the high-quality information that they seek, reduce their burden and improve the outcomes for those affected by these much misunderstood conditions.
Kevin Madigan is a clinical nurse specialist at the Cluain Mhuire Service. Anyone interested in finding out more about the carer programme can contact him on email: Kevin.madigan@sjog.ie or tel: 01-2172165