Abstract
Introduction and aim
Because of the expected increase of dementia patients in the next decades and the growing demand for formal care, an important question appears: how to predict and influence the caring possibilities of informal carers. We introduce the concept perseverance time, describedas the period of time that
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informal carers expect to be able to continue performing their care tasks for their relative with dementia; the length of that period of time is influenced by a combination of factors. The overall aim of our studies was to explore the feasibility, validity, and added value of perseverance time within the context of decision making in dementia care.
Methods
Data were collected from 223 informal carers of dementia patients. Perseverance time was measured by asking informal carers: ‘If the informal care situation stays as it is now, how long will you be able to cope with the care?’Convergent validity was assessed by looking at associations of perseverance time with validated instruments for measuring subjective burden (CSI, CarerQol-7D and SRB) and happiness (CarerQol-VAS). Content validity was evaluated by performing multivariate correlations between perseverance time and characteristics of dementia patients, informal carers and the care situation. To trace profiles of informal carers related to perseverance time we used the Q-methodology. Grounded theory was used to evaluate the nursing home placement by informal carers. Finally we investigated how the timing of admission to a nursing home was related to perseverance time of the informal carer.
Results
The convergent validity of perseverance time based on its associations with subjective burden appeared to be good. The association with happiness was also significant. The content validity appeared fair to good for perseverance time of more than half a year and more than one year and declined for a perseverance time of more than two years. Informal carers with a limited perseverance time made a reliable prediction of the end of their perseverance time. The predictive value of informal carers who indicated an unlimited perseverance time varied. Five distinct profiles of caregiving were identified that differed significantly from each other, and were associated with perseverance time. The decision by informal carers to the admission of their relative with dementia often had to be taken under time pressure in order to avoid a place in the nursing home being left empty. However, after the admission informal carers reported that they could have continue their care task for another six months on average if the admission had not taken place.
Conclusion
Results of our study suggest that both feasibility and validity of perseverance time is favourable within the context of informal care for persons with dementia. To ask for perseverance time is a direct way to investigate how long informal carers can continue their current informal care tasks. In addition to its relevance for research in the field of informal care, the information about perseverance time may also prove useful in practice in providing timely support to informal carers to prevent overburdening and crisis admissions.
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