Talking, listening and a frank exchange of ideas. Online tools can support cross-communication between patients, carers and healthcare professionals to the benefit of people living with depression and their caregivers. We report from a special session hosted by the Expert Platform on Mental Health on day one of ECNP2016.
Communication is key to progress. Individual experiences of life with depression need to be integrated with research exploring the impact of a depression diagnosis on carers and families. These experiences offer valuable insights on ways to prevent and act earlier and more effectively to support people with depression.
Open the doors
All patients ask is that their concerns and issues be taken seriously and that they are not judged by their illness.
For the second year running, ECNP has given the floor to patients and caregiver support organizations to provide their side of the story. Setting the scene for a session that proved the power of three-way dialogue and collaboration between psychiatrists, patients and their carers, was the patient voice of Bert Aben of the The Netherlands, who has lived with depression in the form of bipolar disorder for the past 25 years. Bert Aben reminded delegates that all patients ask is that their concerns and issues be taken seriously and that they are not judged by their illness. Mr Aben stressed the importance of family and carers in supporting people with mental health disabilities.
Highs and lows
Continuing with the theme of carer-support, Aagje leven , General Secretary of the European Federation of Families of People with Mental Illness (EUFAMI), presented some stark findings from the Caring For Carers survey of family and carers of people with mental illness. The survey was undertaken in 22 countries and received over 1000 responses, the majority of which were from those caring for people with schizophrenia/psychosis, followed by depression. She focused her presentation on the impact of depression on families revealed by the survey – saying that there can be highs as well as lows for those who live with and care for people with depression. The survey revealed that there are social and financial burdens on carers of people with depression and a lack of social support for carers – burdens that differ from those or carers of people with schizophrenia. Positives for carers of people with depression were that they felt their sense of empathy was increased by the experience.
Give and take
Aagje Ieven said that very often carers of those with depression are spouses or partners. Living with a partner with depression can impact on household income – but more than that – carers and family said one of the most difficult aspects they face is a lack of support for carers of people with this condition. She also reported that a survey of carers and family found that living with a person with depression can have a very negative impact on children in the family – with a large number (around 38%) of such children developing mental health issues in later life.
Aagje Ieven said that carers and family of people living with depression are often expected to report back to healthcare professional regarding the state, symptoms and well being of their family member with depression, yet they frequently lack good support - in the other direction - to help them deal with the impact of having a depressed person in their family.
Aagje Ieven described an initiative - the Massive Online Open Course on Caring for People with Psychosis and Schizophrenia - as an example of an online innovative solution that seeks to address these unmet needs and empower the caregiver community.
Listen and learn
Giving a physician perspective on the far-reaching impact of depression, Professor Joseph Zohar, of Tel Aviv University, Israel, said that there are a number of on-going initiates that recognize and heed patient and carer views and which have been designed to tackle the clinical and social morbidity linked with depression.
He described the Unified Suicide Prevention Plan (EUSPP) which has included a systematic literature review and planned White Paper that aim to give the evidence and then propagate the notion of suicide prevention.
One step ahead
Professor Zohar also spoke about the development of the iFeel App (for Adroid) that is being developed and tested as a means of monitoring mood and detecting early signs of depression and depression relapse. By collecting data on – for example – higher than usual number of missed or ignored calls, disrupted sleep and a person’s use of a ‘trust’ button – the iFeel app might be able to keep one step ahead of depression and depression remission.
In a similar, preventative, vein, professor Zohar said there is a growing body of research to show that screening for signs of depression in the workplace detects early signs of depression and can be a cost effective maneuver. He also reported, however, that those in high level occupations with depression often do less well in management programmes – a finding that stresses the need to keep on searching for individualized approaches to tackling this complex condition.