Qualitative research of informal caregivers’ personal experiences caring for older adults with dementia in Lithuania

Abstract

Background In many communities around the world, informal caregivers of older adults with dementia represent an essential, yet often underappreciated, source of long-term care. The present study aimed to determine the personal experiences of such caregivers, which could be instrumental for developing means of improving the quality of care for both care receivers and their informal caregivers. Methods Five semi-structured focus-group discussions were held. The participants (n = 31) were all informal caregivers of older adults with dementia. The focus-group discussions were audio-recorded and transcribed verbatim. An inductive approach was used, and thematic data analysis was applied. Results Four thematic categories were identified: learning caregiving through personal experience; implications of caregiving on social wellbeing; caregivers’ contradictory emotions regarding care delivery; and addressing challenges regarding care provision. Conclusions This study revealed, among the informal caregivers, a variety of experiences, contradicting feelings, and problem-solving strategies relating to the care of older adults with mental disorders. Becoming an effective caregiver involves professional and psychological development. Developing caregiving skills, supportive environment and positive attitude can help facilitate providing care. Caregiving largely impacts the emotional, physical, and social wellbeing of the person; thus, comprehensive approaches are needed to prevent burnout and associated social disadvantages.

Informal caregiver support needs and burden: a survey in Lithuania

“…The question of what type of psychological support options informal caregivers would prefer remains. As identified in the recent qualitative Lithuanian informal caregiver study 24 access to peer support groups as well as internet-based intervention Open access programmes could have potential in reducing caregiver psychological burden. Further research into these matters is encouraged.…”

Perceptions and meanings of living with Parkinson’s disease: an account of caregivers lived experiences

“…This they did even in cases where they felt aversive towards it, while being mindful and sensitive of avoiding injury to the patient’s psychological faculties and sense of competence. This was extremely overwhelming for the caregivers, and often manifested in the form of emotional wear-out and feeling misplaced as was also found by Tan et al (Kontrimiene et al, 2021 ; Tan et al, 2012 ). In addition, in moments of incapacitation, wherein the caregivers could not be thoughtfully involved with patient, they felt guilty for not being good enough (Viwattanakulvanid et al, 2014 ).…”

Representações Sociais do Cuidado do Idoso

“…Couto, Castro e Caldas (2016) acrescentam que o cuidador familiar pode apresentar maiores níveis de ansiedade, decorrentes da sobrecarga e também em função da reestruturação familiar ocasionada pelas modificações de papéis sociais, que acarreta em uma carga emocional geradora de sentimentos ambivalentes em relação a si e à pessoa idosa. Assim, como já destacam estudos internacionais, é importante o preparo, apoio e orientação dos cuidadores informais para lidarem com esses cuidados de maneira ampla, englobando de maneira abrangente as necessidades básicas, mas também as psicossociais (Lilleheie, Debesay, Bye, & Bergland, 2020;Kontrimiene et al, 2019;Kontrimiene et al, 2021;Slatyer et al, 2019). Programas específicos para esse preparo dos cuidadores informais possibilitariam o desenvolvimento técnico e psicológico dos mesmos, o que gera um grande impacto no bem estar e qualidade de vida dos idosos (Kontrimiene et al, 2021;Slatyer et al, 2019).…”

“…Assim, como já destacam estudos internacionais, é importante o preparo, apoio e orientação dos cuidadores informais para lidarem com esses cuidados de maneira ampla, englobando de maneira abrangente as necessidades básicas, mas também as psicossociais (Lilleheie, Debesay, Bye, & Bergland, 2020;Kontrimiene et al, 2019;Kontrimiene et al, 2021;Slatyer et al, 2019). Programas específicos para esse preparo dos cuidadores informais possibilitariam o desenvolvimento técnico e psicológico dos mesmos, o que gera um grande impacto no bem estar e qualidade de vida dos idosos (Kontrimiene et al, 2021;Slatyer et al, 2019).…”