For better or worse: Factors predicting outcomes of family care of older people over a one-year period. A six-country European study

Daniel Lüdecke, Barbara Bien, Kevin McKee, Barbro Krevers, Elizabeth Mestheneos, Mirko Di Rosa, Olaf von dem Knesebeck, Christopher Kofahl
PloS One 2018, 13 (4): e0195294

OBJECTIVES: Demographic change has led to an increase of older people in need of long-term care in nearly all European countries. Informal carers primarily provide the care and support needed by dependent people. The supply and willingness of individuals to act as carers are critical to sustain informal care resources as part of the home health care provision. This paper describes a longitudinal study of informal care in six European countries and reports analyses that determine those factors predicting the outcomes of family care over a one-year period.

METHODS: Analyses are based on data from the EUROFAMCARE project, a longitudinal survey study of family carers of older people with baseline data collection in 2004 and follow-up data collection a year later in six European countries (Germany, Greece, Italy, Poland, Sweden, and the United Kingdom), N = 3,348. Descriptive statistics of the sample characteristics are reported. Binary logistic random-intercept regressions were computed, predicting the outcome of change of the care dyad's status at follow-up.

RESULTS: Where care is provided by a more distant family member or by a friend or neighbour, the care-recipient is significantly more likely to be cared for by someone else (OR 1.62) or to be in residential care (OR 3.37) after one year. The same holds true if the care-recipient has memory problems with a dementia diagnosis (OR 1.79/OR 1.84). Higher dependency (OR 1.22) and behavioural problems (OR 1.76) in the care-recipient also lead to a change of care dyad status. Country of residence explained a relatively small amount of variance (8%) in whether a care-recipient was cared for by someone else after one year, but explained a substantial amount of variance (52%) in whether a care-recipient was in residential care. Particularly in Sweden, care-recipients are much more likely to be cared for by another family or professional carer or to be in residential care, whereas in Greece the status of the care dyad is much less likely to change.

DISCUSSION: The majority of family carers continued to provide care to their respective older relatives over a one-year period, despite often high levels of functional, cognitive and behavioural problems in the care-recipient. Those family carers could benefit most from appropriate support. The carer/care-recipient relationship plays an important role in whether or not a family care dyad remains intact over a one-year period. The support of health and social care services should be particularly targeted toward those care dyads where there is no partner or spouse acting as carer, or no extended family network that might absorb the caring role when required. Distant relatives, friends or acquaintances who are acting as carers might need substantial intervention if their caregiving role is to be maintained.

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