Nicole Highet and Marie Thompson: beyondblue
Bernard McNair: ‘blueVoices’ National Coalition Coordinator, beyondblue.
Project completion year
The research explored the experiences of carers of people with depression and revealed how living with a person with depression can impact on many areas of life and affect psychological, emotional and physical wellbeing. It also indicated how the carer’s experience of accessing effective treatment for the person with the disorder may compound the burden of care.
The research had four aims:
- to explore the experience of living with and caring for a person with depression
- to understand the impact of this experience on primary carers and the family
- to identify factors contributing to the burden of care
- to highlight opportunities to improve the lives of those living with a family member with depression.
Six focus groups (each consisting of two sessions) were conducted with primary carers of people with depression across Australia in 2001 and 2002. Between six and eight people were initially recruited to attend the focus groups (each of two-hour duration). As most of the focus groups were conducted within metropolitan regions of Australia, in-depth telephone interviews were conducted with carers living in rural and remote localities.
Following analysis of the results, a number of consistent themes emerged highlighting the profound impact that depression can have upon the carer and families during the various stages of illness:
Barriers to identifying depression
Carers describe behavioural, physical and psychological signs as early indicators of the presence of depression in a family member, yet mostly these signs are only understood in hindsight. A number of barriers prevent carers from recognising the development of the disorder at the time. These include the gradual onset of the illness and a lack of general knowledge of the illness, causing carers to dismiss potential indicators and attribute incorrectly signs and symptoms to a transient phase or personality trait.
Recognition of depression
Carers report a complex emotional response follows the realization that a family member has depression. Carers commonly experience denial, shock, fear, confusion, guilt, blame and grief.
The overwhelming burden on the carer
A number of distinct aspects to the role were reported to contribute to the strain associated with caring for a person with depression. The elements which carers describe as leading to increased burden relate to the overwhelming, unrelenting nature of the role and to the high levels of responsibility associated with it.
Impact on relationships
Family, spousal and social relationships are affected by the presence of depression. Family routine and activities are disrupted and dynamics within relationships alter and are constantly changing.
Caring for a person with depression can have a significant financial impact, not only with respect to accessing treatments, but also where the person is unable to work. The carer may also have little choice but to give up his/her job in order to care for the family member.
The impact of self-harm and suicidal thoughts and behaviour
The potential threat of self-harm means carers have to remain vigilant, often living in fear of what the family member might do. Such thoughts and feelings are described as being highly disruptive, disturbing and exhausting.
Barriers to accessing treatment
Carers identified a number of barriers to accessing treatment for a family member. These include lack of information, delay in obtaining a diagnosis, the protracted process of accessing intervention and proximity to services. Carers are often left to deal with their family member, leading many to feel overwhelmed and out of their depth. The impact of this is exacerbated when carers are excluded from the treatment process, leaving them uninformed and unsupported. In some instances, this leads carers to believe that health professionals blame them for the development or progression of the disorder. The burden for carers is further intensified by inappropriate detection, treatment and management of depression by health professionals. In turn, this results in an ongoing, untreated illness which continues to have significant impact on carers and families.
Stigma and lack of awareness about depression
Carer burden is often further exacerbated by the stigma and lack of awareness and understanding about depression in the community. Ultimately, this reduces the capacity for carers to get support and empathy from family and friends, increasing their isolation and compounding the impact of the illness (placing carers at greater risk of experiencing depression themselves).
Implications for policy and practice The research highlights the need to:
- instigate campaigns and education forums in order to increase community awareness and understanding about the significant impact depression has on those who live with it, and increase the level of empathy and support provided to carers;
- encourage health and community service bodies to ensure that support services and networks for carers in metropolitan and rural areas are adequately funded, available and accessible, and appropriate policies are developed;
- educate and encourage GPs, allied health professionals and specialists to share information with carers about the disorder, its management, coping strategies, information about appropriate;
- services, and eligibility for assistance including mutual support groups and financial entitlements;
- encourage primary and secondary health professionals to understand better and respond to carers’ needs and concerns, and to promote a more inclusive approach to treatment and management;
- target primary and secondary health care providers (GPs, specialists, nurses) and agencies in order to increase community awareness about signs and symptoms of depression, to improve detection and early intervention, reduce isolation and stigma, and increase the level of support for the person with depression, their family and carer.