Kristina Kokorelias, MSc, is currently completing her PhD within the Rehabilitation Sciences Institute at the University of Toronto. Kristina completed her Masters of Science degree in Health and Rehabilitation Sciences at Western University in London with a specialization in Health and Aging. Kristina completed her undergraduate training in Gerontology at McMaster University in Hamilton.
Developing a Family-Centered Care Model for Alzheimer’s Disease: A scoping review of Family-Centered Care Models
Background/Objectives: Families play an important role in the delivery and quality of care for persons with dementia. The need for family-centered care, for all patient populations, has been greatly advocated in published literature, as family-centered care models have the potential to improve the well-being of patients and family caregivers. To date, no family-centered care model has been recommended for caring for persons with Alzheimer’s disease. This study aimed to systematically review existing models of family-centered care to determine the 1) key components of the models/interventions and 2) methods of delivery (including, who delivers the model and where).
Methods/Overview: We used scoping review methodology guided by Arksey & O’Malley (2005) to gather and summarize the existing literature on family-centred care models. A systematic review was conducted of family centered care models for all populations. MEDLINE, PsycINFO, CINAHL and EMBASE were searched from 1990 to May 2017. The final 55 articles were reviewed in detail and a codebook was developed in an attempt to uncover commonalities and differences amongst the models. Data was presented as a narrative synthesis.
Results: 55 papers were included in this review. No included models were developed specifically for caring for persons with Alzheimer’s disease. Most family-centered care models are developed for pediatric patient populations. Model elements were fairly consistent across the pediatric and adult literature. Five themes were determined from the studies: defined outcomes, shared decision making, uniqueness of individual families, delivery of support and policies and procedures.
Conclusions: The systematic review suggests that families should be included at the center of care. In particular, family-centered care models that are adapted for caring for persons with Alzheimer’s disease incorporate an interdisciplinary team and empower family members to take on a more active role in care plans through disease-specific education, open communication and flexible care plans. It is our intentions that this review enhances the understanding of current family-centered care models in hopes that can be used to help advance care practices for persons with Alzheimer’s disease and their family.