Abstract

Background: There has been a great scarcity of data on informal caregiving in Sweden. Until recently, population based data on informal caregiving has not been available. This hamper of course, ambitions to describe the informal carers situation and need for support.

Data and methods: In 2012 the National Board of Health and Welfare was commissioned by the government to carry out a study of informal caregiving of persons with disabilities and older people, covering the whole country. A national representative sample of 15,000 persons, aged 18 years and older (with no upper age limit) were addressed, with a screening question to identify caregivers; ‘Do you regularly help, support or care for someone who needs help with daily chores, personal care or other support due to high age, disability or sickness’.

Results: Out of a total response rate of 55% (~8,200 persons) some 1,500 persons or 18% identify themselves as carers, providing support and care on a regular basis, which corresponds to over 1.3 million persons in the population. Regarding the intensity in caregiving, more than 400,000 persons (6%) provide help on a daily basis, more than 600,000 (8%) weekly, and some 300,000 persons (4%) provide help at least once a month. Approximately 900,000 persons (70%) of the caregivers were in working ages. Caregiving culminates in the population aged 45 to 64 years, but people over 65 provide more intensive care than younger carers. In the group of carers aged 45 to 64, some 8 per cent (which corresponds to almost 70,000 persons in the population) reported they had reduced working hours due to caregiving duties, and 3% (29,000 persons in the population) had left work for the same reasons.

Policy implications: The ‘discovery’ of the working carer, and the work-care issue is a relatively new insight in Sweden. The fact that families are forced to reduce working hours or to leave work due to caring commitments, was not recognized in the political discourse, until the campaign for the national election 2014. Many argued that this development is a consequence of the ageing in place policy and the rapid reduction of LTC institutional beds in Sweden. The fact that some 100,000 persons have quit their jobs or reduced working hours to care for their family members, has shaken the Swedish image of a welfare state with a generous public service, catering for everybody from ‘cradle to the grave’. It also threatens the full employment policy and indicate a tougher work life in Sweden in general. Current policy responses on the work – care issue, will be elaborated in the presentation.

Slides