What are the unmet needs in people affected by dementia? A scoping review of reviews

Objectives To examine through a social health lens the unmet needs of people affected by dementia, which includes people with dementia, their informal and formal (or professional) caregivers. ‘Unmet needs’ was conceptualised as inaccessible or a lack of appropriate interventions to address identified problems. Method A scoping review of reviews was conducted. Five electronic databases were searched, followed by a two-stage-screening process. Data were extracted into a standardised sheet comprising study characteristics and domains from the Camberwell Assessment of Needs for the Elderly (CANE), and narratively synthesised. Unmet needs of people with dementia were mapped onto a social health framework. Results Eighty-five reviews were included. The most frequently reported unmet needs of people with dementia were related to psychological distress, lack of daytime activities, and company, all of which contribute to poorer social health. Informal caregivers most frequently reported a lack of information about the disease trajectory, post-diagnostic care, and home-based practical support. Formal caregivers had related information needs; their psychological distress stemmed from a range of sources. Conclusion This review of reviews provides a high-level synthesis of the unmet needs of people affected by dementia. It underscores fundamental knowledge gaps and shortcomings in existing interventions and services particularly for formal and informal caregivers.