Caring for carers survey (C4C)Denmark

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. In Denmark the C4C survey received 146 responses from caregivers.

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.

Canada 106
Norway 49
Finland 48
Russia 48
Denmark 146
Sweden 7
Germany 68
Netherlands 21
Switzerland 4
Belgium 93
Ireland 53
UK 71
France 124
Portugal 11
Spain 59
Italy 46
Malta 52
Israel 10
Greece 18
Cyprus 2
Australia 26
Austria 49

Results are based on 1,111 respondents providing evidence of the continuing burden of caring for relatives living with severe mental illness and highlighting the contribution that carers make and the overwhelming impact this has on their own lives

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.

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.

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"

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

Percieved stigma of family caregivers because they got in contact with professional help*. Denmark ranks below average internationally:

*Mean scores on the percieved stigma scale, which consists of the following:

  • started to feel inferior
  • sometimes started feeling useless
  • sometimes I am ashamed of this
  • started feeling less capable than before
  • started doubting myself
7.4
Austria
7.7
Germany
9.1
Belgium
9.1
Canada
9.4
Finland
9.5 Denmark
9.5
Italy
9.6
Mean of 22 countries
x
9.7
France
9.8
Spain
10.7
Norway
11
Ireland
11.4
Malta
11.4
Russia
12
UK

2. The real life carer in Denmark

The typical family caregiver for a person with severe mental illness in Denmark is a woman, 48 years old, caring for her child with schizophrenia

  • For an average of 10 years, five years below the international average of 15 years
  • Spending an average of 23 hours each week caregiving, less than the international average
  • Spending an average of 10 hours each week caregiving, less than the international average

Almost half of the family caregivers in Denmark who took part in survey live with the patient all or some of the time. However, the report reveals that living with the patient or not does not necessarily reduce the burden of the caregiving role.

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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Download the reports

Global report
Denmark report
Denmark factsheet
Rapporten på Dansk

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.