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Geriatr Psychol Neuropsychiatr Vieil

Published: March 2022

AI Article Synopsis

  • This study conducted a longitudinal interpretative phenomenological analysis of caregivers for patients with neurodegenerative diseases, comparing their experiences before and after a 6-month psychoeducation program.
  • At the initial phase (T1), caregivers expressed feelings of loss in communication with patients, loneliness, and distress, as well as unmet needs for personal time.
  • After six months (T2), new challenges emerged related to managing functional decline and behavioral issues, highlighting the need for psychoeducation to focus on emotional support and the caregiver-patient relationship.

Article Abstract

Résumé Une analyse phénoménologique interprétative longitudinale des difficultés et des besoins non satisfaits rencontrés par les aidants de patients atteints de maladies neuro-dégénératives a été effectuée sur un groupe de 14 conjoints avant (T1) et après (T2) avoir participé à un groupe de psychoéducation de 6 mois. Lors du premier temps (T1), les aidants décrivent principalement une perte des échanges avec le patient, la solitude et la détresse qu'elle entraîne. Ils verbalisent également les difficultés de gérer la relation d'aide, en particulier leurs besoins non satisfaits de temps libre. Lors du second temps (T2) et sous les effets de la progression de la pathologie, ce sont nouvelles difficultés qui apparaissent, avec l'augmentation de la difficulté à gérer les pertes fonctionnelles et les troubles psychocomportementaux. Nos résultats suggèrent que la psychoéducation a aidé les soignants à faire face aux difficultés liées au fardeau objectif (besoin de temps personnel). Les interventions psychoéducatives devraient à l'avenir aborder davantage la relation dyadique et le besoin de soutien affectif de l'aidant, car il s'agit d'un besoin fort, non satisfait, des aidants. Des interventions de psychoéducation systématiques et répétées peuvent ainsi permettre de mieux identifier les difficultés et les besoins des aidants et de leur fournir une aide adaptée, tout particulièrement en ce qui concerne la relation de couple et l'état émotionnel des aidants. Abstract 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.

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Source
http://dx.doi.org/10.1684/pnv.2022.1024DOI Listing

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