Do spouse caregivers of persons with early- and late-onset dementia cope differently? A comparative study

Abstract

Objectives: To explore spouse caregivers' means of coping with the disease and compare them based on the age of onset of the disease in order to adapt support programs.

Methods: Interviews were conducted with 38 spouse caregivers of persons with late-onset dementia (PLOD) and 40 spouse caregivers of persons with early onset dementia (PEOD). The first step in the analysis was qualitative, using QSR N'Vivo 10 to identify the coping strategies. The second step was quantitative, comparing the coping strategies based on the age of onset of the disease with a χ2 test.

Results: An inventory of 26 strategies used by all caregivers was established and consolidated into two groups: acceptance strategies and avoidance strategies. The statistical results show that some strategies were used by the two groups of caregivers. However, when differences emerged, the "Planning" strategy was used by spouse caregivers of PEOD, whereas the "Re-arranging", "Humor" and "Getting away from the entourage" strategies were used by spouse caregivers of PLOD.

Conclusion: It would be interesting to develop a support program with a common framework and specific modules depending on the age of onset of the disease. Common modules would permit developing and strengthening acceptance strategies. Specific modules for caregivers of PEOD would guide them in the acquisition of more adaptability and flexibility in the assistance provided to the PWD, which can sometimes be too rigid and controlled. Specific modules for caregivers of PLOD would help them to develop the ability to request help and identify the intervention limits of the entourage.

Keywords: Comparative study; Coping strategies; Early-onset dementia; Late-onset dementia; Spouse caregiver.