Research center for experiMEntAl, cogNitIve & cliNical psychopatholoGy (MEANING), Université libre de Bruxelles, Bruxelles, Belgique
Département de neurologie, Hôpital Erasme, Université libre de Bruxelles, Bruxelles, Belgique
Université Paul-Valéry Montpellier-3, Université de Montpellier, EPSYLON EA 4556, Montpellier, France
* Tirés à part :
Psycho-education provides information, tools and support to caregivers, and a strong consensus favors the importance of tailoring psycho-education interventions to caregiver needs. Most studies assess needs cross-sectionally, neglecting the evolving nature of needs and challenges inherent to dementia and caregiving, failing to report on how psycho-educative interventions address or incorporate caregiver needs. The purpose of this study was to provide a qualitative and longitudinal assessment of the difficulties and unmet needs of spousal caregivers before and after participating in a psycho-education group. To investigate the difficulties and needs related to caregiving, before and after psycho-education participation, we used a longitudinal Interpretative Phenomenological Analysis (LIPA). LIPA is a prospective person-centered method that explores the lived experience of phenomena without formulating a priori hypotheses. The psycho-educational program was available to any informal caregiver of a person living with dementia (PLWD) in the Brussels region. The multimodal program contains: educational and practical information on dementia sessions with a neuropsychologist specialized in dementia, group sharing and support; home visits by a nurse for personalized assistance to caregivers, art therapy group: available for PLWD that could not be left unsupervised in conjunction with psycho-education sessions. Our study yielded three key findings: (1) caregivers described a loss of relational reciprocity with the person living with dementia at T1 and T2, and reported feeling distressed; (2) at T1, caregivers verbalised difficulties related to their role, the majority of them only identified the lack of personal time as an unmet need; (3) at T2, most caregivers had actively addressed their unmet need for personal time and used respite services to obtain personal time. Our findings would suggest that psycho-education helped caregivers to address difficulties related to objective burden (need for personal time). Psycho-education interventions should systematically and repeatedly assess caregiver difficulties and assist them in identifying their needs in order to provide adequate and tailored strategies and support.