The perseverance time of informal carers for people with dementia: results of a two-year longitudinal follow-up study

BACKGROUND: Given the projected increase of people with dementia over the next few decades and the related demand for informal care, an important question for health policy makers is to what extent and for how long informal carers can be expected to provide care in a sustainable way. This study aimed to investigate the perseverance time of informal carers for people with dementia. METHODS: A 2-year longitudinal cohort study was conducted. Questionnaires were used to collect data about the care situation, the impact of caregiving on carers and their need for support, and the anticipated and realized perseverance time of informal carers for people with dementia living at home. The data were analysed using bivariate and multivariate analyses. RESULTS: Two hundred twenty-three carers for people with dementia were included in the study and 25 (11.2 %) dropped out during the follow-up. The results show that after 1 year, 74 (37.4 %) of 198 patients were still living at home, and after 2 years, 44 (22.2 %) patients were still living at home. The variables that were associated with this outcome were identified. When informal carers anticipated that their perseverance time would be less than 1 year, this was indicative of their actual perseverance time. CONCLUSIONS: Anticipated perseverance time provides a fair indication of the actual duration of informal care. It is most accurate when carers anticipate a limited rather than an unlimited perseverance time. Although further research is required to support these findings, the concept of perseverance time may be considered a useful additional instrument in health policy and clinical practice for monitoring carers’ need for support and for planning the transition of care from home to a nursing home.