Carers of bipolar disorder sufferers focus of new website

Volume 7 Number 5 May 9 - June 5 2011

Bipolar sufferer Tanya (left) has used her experience to contribute to a new website developed by researcher Lesley Berk
Bipolar sufferer Tanya (left) has used her experience to contribute to a new website developed by researcher Lesley Berk

A new website developed by University of Melbourne and Orygen Youth Health researchers aims to help carers of people with bipolar disorder. By Rebecca Scott.

Ela knew there was something different about her daughter Natasha. What started as erratic behaviour in her childhood, developed into episodes of severe depression and then mania or ‘highs’ into adulthood. What her parents didn’t know was that their daughter had bipolar disorder, a mental illness which makes the patient experience extreme mood swings, from highs to lows.

“It took years to find out what was wrong,” Ela says.

“For twenty seven years my life had been a rollercoaster, it has been a full time job caring for her.”

Doctors said Natasha had Attention Deficit Hyperactivity Disorder (ADHD) or was a bit depressed and they tried many different medications.

 “They might take the edge off the symptoms but were never very effective,” Ela says.

During Natasha’s life she was hospitalised twice, once voluntarily and once by being taken to a psychiatric facility by police. She came back to live with her parents after a breakdown at 20 and it was around this time when she was finally diagnosed with bipolar.

“At this stage I gave up work because she needed full-time care,” Ela says.

Now 27, Natasha has been stable since 2007.

“Finally we found a good psychiatrist and having been prescribed Lithium and other medications, in five to six weeks she was a completely different person,” Ela says.

“I’m no longer that girl but it’s never over,” Natasha says of her recovery.

Globally, bipolar disorder affects about two in 100 adults and if it is defined more broadly to include mild and sub-threshold mania and hypomania, these statistics are even higher. It often begins in adolescence and the early to mid-20s.

Good treatment and illness self-management strategies help many people to keep well. However, despite pharmacological treatment, one study found that relapse rates are as high as 37 per cent in the first year, 60 per cent over two years and 73 per cent over five years.

Ela and Natasha were asked to contribute to the development of a new website aimed at supporting carers of people suffering bipolar disorder.

Developed by researchers at the University of Melbourne and Orygen Youth Health, the information was gathered with the help of an international consortium of 143 carers, consumers and clinicians with experience in dealing with bipolar disorder.

Website developer and researcher Ms Lesley Berk said that while patterns of illness vary, extreme bipolar mood swings and mild symptoms between episodes can affect the person’s daily life and that of their loved ones.

“Family members, partners and friends are often a primary source of support for people with bipolar disorder,” she says.

“For some care-givers the impact of care-giving can result in high levels of stress, depression and other health problems.”

In one study, 93 per cent of carers reported feeling distressed and experienced disruption to their lives when their loved one was ill or had a bipolar episode, and for 54 per cent of carers, this distress was severe.

Ms Berk said there is very little care-giver specific information available for carers. “The website www.bipolarcaregivers.org includes information on bipolar disorder, ways to treat and manage it, ways in which care-givers can provide support and take care of themselves,” she says.

Ela said the website is an amazing resource.

“It explains where to get help and strategies for future management of the illness – covering all aspects such as checking vitamin D and B12 deficiencies which can contribute to depression. It offers a more holistic approach to treating and managing the condition,” she says.

“When I started searching for an answer there was nothing out there – now I have this amazing resource which includes strategies to help if she is suicidal. I know it’s never over but now I have a guide to help us.”

When in a private clinic Natasha started to write a diary which became the basis of the book she co-wrote with her mother, detailing her experiences called The Bi-Polar Express.

“We are the best of friends,” she says. “We have come through everything together. I know how she feels and I know what she needs.”

It had taken five years for bipolar sufferer Tania to be diagnosed with the disorder, at the age of 28. She says that this was a relatively short time to get a diagnosis – it can take much longer.

“It is important for diagnosis to take some time because the person may take on the diagnosis and it may affect how they feel about and see themselves, so it’s better to get it right over a period of time,” she says.

However she was glad to be diagnosed so she could get the right treatment and medication.

Her family was given very little information when Tania first became unwell. She said it was a shock for them to have an adult child become so unwell, and this was compounded by a lack of information and support.

“I went through three psychotic episodes in five years between the ages of 23 and 28. It was very hard for my family and friends,” she says.

Now working in the field of mental health herself, Tania, now 49, was asked to contribute to the information behind bipolarcaregivers.org.

“It is fantastic that a young person and their carers going through these sorts of episodes can now access more information and more support networks,” she says.

“Until now there have not been any specific caregiver websites. This website is very comprehensive and well designed.

“This website is a great resource. Hopefully clinicians will refer all people affected by bipolar such as friends, family members or patients themselves to the site,” she says.

People are invited to complete the feedback survey on the usefulness of the website

www.bipolarcaregivers.org