Abstract
BACKGROUND: Nursing home residents with early-onset neurodegenerative diseases are often younger in comparison with other residents, and need different, often more complex care. Accordingly, the measurements currently used for measuring quality of care in nursing homes may not be suitable for use in this target group. Little is known about the experiences of these residents and of their (in) formal caregivers regarding the quality of care they receive. Therefore, the aim of this scoping review is to explore which instruments are available for measuring the quality of care for nursing home residents with early-onset neurodegenerative diseases (excluding dementia), from the perspective of the resident and of (in) formal caregivers. METHODS: A literature search was performed in the databases Pubmed, Embase, Web of Science and Cinahl. The search strategy consisted of four main concepts: neurodegenerative diseases, quality of care, nursing homes and perspectives of residents, (in) formal caregivers. Studies were included if they used instruments and/or strategies to measure quality of care, focused on nursing home residents with early-onset neurodegenerative diseases and the perspective of either the resident or (in) formal caregiver. RESULTS: From a total of 809 identified articles, 87 full text articles were screened for eligibility. Five studies were included, only one of which described an instrument. The other four used topic lists and/or themes to measure quality of care. In total, 60 items related to quality of care could be derived. From these 60 items, eight overarching domains were found, with a subdivision into items derived, respectively, from the residents', informal and formal caregivers' perspective: 'emotional support', 'physical support', 'social support', 'care', 'care content', 'expertise', 'communication' and 'organization of care'. CONCLUSIONS: Currently, there are no methods for assessing the quality of care specifically focused on nursing home residents with early-onset neurodegenerative diseases. Therefore, the items retrieved in this review give an overview of important topics for measuring the quality of care for this target group, from the perspective of the resident, and of the informal and formal caregivers. These items might be used to develop a tailored instrument for assessing the quality of care for nursing home residents with early-onset neurodegenerative diseases.