Is there agreement between Canadian older adults and their primary informal caregivers on behaviour towards institutionalisation?

Abstract

We aimed to compare behaviour towards institutionalisation between frail older adults and their informal caregivers, and identify correlates of differential behaviour. In 2004, during the fourth wave of the longitudinal Program of Research to Integrate Services for the Maintenance of Autonomy (PRISMA) study (province of Québec, Canada), 86.7% of eligible dyads, that is 593 participants and their primary informal caregivers, were asked separately if they thought about placement, discussed it with someone or visited an institution during the previous year. An ordinal measure of behaviour towards institutional placement was derived and agreement between dyad members was assessed with the weighted kappa. Although identical behaviour was relatively high (65.4%), it represented almost exclusively no thoughts by either member and the weighted kappa was low (0.16). Differential behaviour was then analysed as a three-level dependent variable (thoughts only by the care-receiver, thoughts only by the caregiver, no thoughts by either dyad member) in a multiple multinomial logistic regression analysis. Compared with neither person thinking about it, the care-receiver alone thinking about placement was associated with using voluntary services, receiving help for home maintenance and visits to the emergency room during the previous year, along with the caregiver being aged 70 years or over. Compared with neither person thinking about it, the caregiver alone thinking about placement was associated with being male, not residing with the care-receiver, sensing a higher subjective burden, along with the care-receiver being 85 years or older, not being able to feed him/herself independently and visits to the emergency room during the previous year. Identified correlates can be useful in targeting dyads likely to behave differently. Communication within these dyads needs to be enhanced, as it is crucial to ensure that both parties are comfortable with possible future institutionalisation. In this regard, health professionals could play a role in bringing the issue to discussion.