The Experiences, Needs, and Solutions of Caregivers of Patients With Behavioral and Psychological Symptoms of Dementia Living in Residential and Long-Term Care Centers

Abstract

Behavioral and psychological symptoms of dementia (BPSD) pose great challenges for the caregivers during the evolution of the disease with impacts on patients, caregivers, and healthcare providers. Caregivers often remain very present and involved once the difficult decision has been made to relocate the person to a residential and long-term care center ( centre d’hébergement de soins de longue durée [CHSLD] in Quebec). The experience of caregivers about BPSD management in CHSLDs remains poorly understood. The aim of this study is to explore the needs and experience of caregivers of patients with BPSD living in CHSLDs, as well as the solutions they suggest to better manage BPSD in CHSLDs. We carried out this qualitative interpretive descriptive study with six focus groups, including 32 caregivers, in Quebec, Canada. Data analysis identified six themes: (1) the transition period between home and the CHSLD; (2) the lack of knowledge about BPSD; (3) the approach to BPSD by healthcare professionals; (4) the lack of communication; (5) defining the caregiver’s role in the healthcare team; and (6) the caregiver’s need for respite. These results offer relevant avenues to improve collaborative practices with caregivers in CHSLDs involved in the care of people with BPSD.