Caring for carers survey (C4C)

Experiences of family caregivers of persons with severe mental illness: An international exploration.

The aim of the Caring for Carers (C4C) survey was to assess the experiences of family caregivers in caring for their relative with severe mental illness from an international perspective, and to highlight the central role they play. The C4C survey was undertaken in 22 countries and received over 1,000 responses, the majority (64%) of which were from those caring for people with schizophrenia/psychosis.

Carers matter

The shift in mental health policies away from hospital-based care makes family caregivers essential in helping people with severe mental health problems to live in the community, but the role is often challenging and has a huge impact on the caregiver's own life.

1. The highs and lows of caring

Family caregiving for people with severe mental illness involves feelings of stigma and burden, however, these expericences can be coupled with positive caregiving experiences.

Family caregivers have typically cared for their loved one for
15 years.

Caring can also involve positive experiences with more than half of caregivers discovering inner strength.

More than 1 in 3 family caregivers are at the point of reaching breaking point.

4 in 10 feels unable to cope with the constant anxiety of caring and experience these feelings "quite a lot" or "sometimes"

Family caregivers have typically cared for their loved one for
15 years.

Caring can also involve positive experiences with more than half of caregivers discovering inner strength.

More than 1 in 3 family caregivers are at the point of reaching breaking point.

4 in 10 feels unable to cope with the constant anxiety of caring and experience these feelings "quite a lot" or "sometimes"

1. The highs and lows of caring

Family caregiving for people with severe mental illness involves feelings of stigma and burden, however, these expericences can be coupled with positive caregiving experiences.

The worry and stress means that

1 in 5 feel so exhausted that they cannot function properly

1/3 lack sleep because of the worry and stress

1/3 feel depressed

1 in 5 are unable to find anything positive in their life

Caring can often have a detrimental impact on the caregiver's own health

1/3 feels that the caring role make their own physical health worse

Nearly 4 in 10 are concerned about their own physical health

1/3 feels that the caring role make their own physical health worse

Nearly 4 in 10 are concerned about their own physical health

55% worries most about the person becoming too dependent on them in the future

1 in 2 worries about the financial situation of the person they care for. One in four is having difficulty making ends meet

1 in 3 feels isolated and lonely because of the situation they are in

With feelings of isolation and loneliness making this worse, together with the responsibility of caring and financial stress

55% worries most about the person becoming too dependent on them in the future

1 in 2 worries about the financial situation of the person they care for. One in four is having difficulty making ends meet

1 in 3 feels isolated and lonely because of the situation they are in

2. The real-life carer

The typical family caregiver for a person with severe mental illness is female (80%) and around 60 years old, with

  • 76% taking care of a son or daughter
  • 7% for a brother or sister
    • 7% for a brother or sister
    • 76% taking care of a son or daughter
    • 10% for a partner or spouse
    • spending an average of 22hours each week caregiving
    • 10% for a partner or spouse
    • spending an average of 22 hours each week caregiving

    The job of caring is often solitary and with little respite

    • Nearly half (47%) never take a break from caring
    • 36% of carers are the only caregiver
    • Only 6-8% rely on paid respite care
    • 36% rely on friends and family
    • Only 6-8% rely on paid respite care
    • 36% rely on friends and family

    3. Carer support is lacking and their voice often unheard

    Caregivers were equally satisfied and dissatisfied with the support from healthcare professionals nevertheless:

    4 in 10 are dissatisfied with support from doctors

    A 1/3 are dissatisfied with support from nurses

    And only 3 in 10 were satisfied with support from their social workers

    Half are dissatisfied with the ability to seek help and support from professional staff for their own needs

    1 in 4 is dissatisfied with the support they recieve from their workspace

    Caregivers were more satisfied with the support from patient/caregiver organisations
    (6 out of 10)

    Caregivers don't feel involved in important decisions

    Only 1/3 are satisfied with their involvement in important decisions in treatment and care planning

    4 in 10 are dissatisfied with their involvement and ability to influence important decisions

    Less than 4 in 10 carers feel that medical and care staff take them seriously

    Fewer than 1 in 4 feel communication between healthcare professionals is going well

    Less than 4 in 10 carers feel that medical and care staff take them seriously

    Fewer than 1 in 4 feel communication between healthcare professionals is going well

    Further essential information is critical

    1/3 of family caregivers are dissatisfied with the information on who to contact in case of an emergency

    Almost half of the family caregivers are dissatisfied with information on how the illness of their relative will develop in the longer term

    4. Critical support for caregivers - what they are telling us they need

    A staggering 93% would appreciate some additional support in their role as caregiver

    With nearly half requesting a significant amount of additional support

    Only 7% need no additional support

    Only 7% need no additional support

    Around 9 in 10 want more opportunities to meet and share knowedge and experiences with:

    Professional carers 93%

    As well as with other family members and informal carers 90%

    Professional carers 93%

    As well as with other family members and informal carers 90%

    8 out of 10 want individual support from EUFAMI and family member organisations by providing/offering:

    Information 88%

    Emotional support 83%

    Respite care 78%

    Financial support 62%

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    Global report

    About the C4C survey

    The C4C is an international survey conducted by LUCAS, the Centre for Care Research and Consultancy of the KU Leuven in collaboration with the European Federation of Families of People with Mental Illness (EUFAMI). The aim of the survey was to assess the experiences of family caregivers in caring for their relative with severe mental illness from an international perspective, and to highlight the central role they play. Respondents were recruited mainly through family caregiver organisations in the following countries: Australia, Austria, Belgium, Canada, Cyprus, Denmark, Finland, France, Germany, Greece, Ireland, Israel, Italy, Malta, Netherlands, Norway, Portugal, Russia, Spain, Sweden, Switzerland and UK. Therefore, the results cannot be generalised for all family caregivers of people with severe mental illness.

    1,111 family carers were surveyed

    • 64% care for people with schizophrenia/psychosis
    • 13% care for people with anxiety disorder
    • 18% care for people with bipolar affective disorder
    • 18% care for people with other disorders
    • 15% care for people with depressive disorder

    At least 26 million people worldwide are affected by schizophrenia and it is one of ten leading causes of disability worldwide.

    The C4C survey was financially supported by Otsuka Pharmaceutical Europe Ltd. and H. Lundbeck A/S who has had no influence on or input to the development or the performance of the survey.
    The C4C report and the factsheets, infographics and website belong to EUFAMI and LUCAS KU Leuven and were made by external agencies thanks to in-kind support from Otsuka Pharmaceutical Europe Ltd. and H. Lundbeck A/S.