Approximately three out of four (72%) carers of those living with schizophrenia, are mainly (34%) or solely (38%) responsible for caring, placing a huge emotional and physical burden on them, according to the preliminary results of a major international survey revealed on World Mental Health Day (#WMHD14). The Caring for Carers (C4C) survey, which is on-going in 25 countries, is being undertaken by the European Federation of Associations of Families of People with Mental Illness (EUFAMI) in collaboration with LUCAS, the interdisciplinary centre for care research and consultancy of the University of Leuven, Belgium.
The first results revealed October 10, 2014 are based on responses from more than 400 carers in
Australia, Canada, France, Germany, Italy, Spain and UK. It provides evidence of the
immense and unspoken burden on people caring for those living with schizophrenia and
highlights the contribution they make, and the overwhelming impact this has on their own
lives.
Family carers perform their caregiver role for an average of 16 years, are likely to
have to do so for the rest of their lives, and report an average of 23 hours a week caring
for a loved one, due to the undetermined and long-term nature of schizophrenia. This
amount of care equates to a part time job.
In the EU, there are approximately 10 million family carers caring and supporting
their child or sibling with a serious mental health condition on a daily basis. This is a
massive and valuable contribution, not just to individuals, but to society as whole and to
the financially strained healthcare systems across Europe. “This hidden workforce of
family carers is a lifeline for society and we must take steps to ensure they are fully
recognised for their contributions, their voices are heard and they are supported in order
to allow them to continue caring effectively and safely for their loved ones, without
putting their own physical and emotional well-being at risk,” Kevin Jones, Secretary
General, EUFAMI, said today.
Although about one third of the carers report positive experiences of providing care,
the survey also indicates that almost 4 out of 10 battle with feelings of being unable to
cope with the ‘constant anxiety‘ of caring and one third feel depressed. More than 1 in 10
carers worry about feeling isolated and experience strains in their social network because
of the care they give.
The average age of the carers surveyed was 61 years old, with the majority (84%)
caring for a son or daughter. Many express deep concerns about what will happen to their
child when they are unable to care for them or are no longer ‘around’.
With this constant level of pressure, a third of carers are reported to be reaching
‘breaking point’ and feeling they cannot carry on with things the way they are.
The findings emphasise the urgent need for action from both Governments and society to
recognise the role of carers, their contribution and the need to provide support and hope
for their future.
Positive caregiving experiences are eclipsed by the fact that there is a degree of
dissatisfaction with the level of, or lack of, support from care professionals. Ninety two
percent of carers surveyed want more support on several domains.
The survey highlights carers’ desire to be more involved in treatment conversations
and to be better equipped to influence care decisions.
“There is a lack of support and dissatisfaction being expressed by family carers.
Thirty eight per cent feel they are not taken seriously by medical/care staff and forty
four percent are not feeling satisfied with their ability to influence important decisions
in treatment and care planning,” said Kevin Jones, Secretary General, EUFAMI. “Healthcare
professionals need to acknowledge that family carers can play a much stronger role,
integrate them in treatment decisions and work together to achieve better outcomes for the
patient. EUFAMI has been calling for this approach for many years.”
“In addition, several caregivers experience a financial burden due to their
caregiving,” said Prof. Dr. Chantal Van Audenhove, Director of LUCAS. “They become trapped
in a so-called sandwich situation: the obligations towards their family member and towards
their own job are in conflict. When there is not enough understanding on the part of the
employer, some people even lose their job, which in return is also a loss of talent for
society. More work flexibility should be on the policy agenda.”
Schizophrenia is a disabling mental illness that impacts lives, both of the people
living with it, and those who care for them, and touches approximately 24 million people
worldwide. It affects mainly people aged 15-35[1] and is ranked among the top 10 leading
causes of years lost to disability[2]. Family members are the likely primary carers of
people living with schizophrenia, and can spend an average of 6-9 hours a day caring, and
consequently experience high personal impact which can threaten their own long-term
well-being. Severe mental disorders like schizophrenia cost EUR93.9 billion a year in
Europe alone, making it one of the most expensive diseases to treat[3].
The survey, supported by an educational grant from major CNS alliance, Lundbeck and
Otsuka, has been developed by EUFAMI in collaboration with the University of Leuven
according to robust methodology and analysed by its interdisciplinary research centre
LUCAS, led by Prof. Dr. Chantal Van Audenhove, Director of LUCAS. The survey, once
complete, will gather insights from a total of 25 countries, mainly European, and the
results will be published in 2015.
You can follow the conversation around the C4C Survey and World Mental Health Day on
EUFAMI’S Facebook page https://www.facebook.com/EUFAMI1 and on Twitter using the
hashtags #C4C, #WMHD14 and #livingWithSchizophrenia.
