Lina Jaruseviciene

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.

Changes in the demographics and respective growth of life expectancy and social needs make informal caregiving crucial component of comprehensive health and social care network, which substantially contributes to the health and well-being of the elderly. The purpose of this paper is to understand the system of care of elderly patients with mental disorders from the perspective of informal caregivers in Lithuania. We conducted five semi-structured focus group discussions with 31 informal caregivers attending to elderly patients with mental disorders. The data were audiotaped and transcribed verbatim. A thematic analysis was subsequently performed. Five thematic categories were established: (1) the current state of care-receivers: representation of the complexity of patients’ physical and mental condition. (2) The current state of caregivers: lack of formal caregivers’ integration as a team; inadequate formal involvement of informal caregivers. (3) Basic care needs: the reflection of the group needs relating directly to the patient, care organisation and the caretaker. (4) The (non-) Readiness of the existing system to respond to the needs for care: long-term care reliance on institutional services, lack of distinction between acute/immediate care and nursing, lack of integration between the medical sector and the social care sector. (5) Potential trends for further improvement of long-term care for the elderly with mental disorders. Strengthening of the care network for elderly patients with mental disorders should cover more than a personalised and comprehensive assessment of the needs of patients and their caregivers. Comprehensive approaches, such as formalization of informal caregivers’ role in the patient care management and planning, a more extensive range of available services and programs supported by diverse sources of funding, systemic developments and better integration of health and social care systems are essential for making the system of care more balanced.