Comparing international dementia research priorities—Systematic review

Abstract

Objectives: Research priority setting aims to collate stakeholder opinion to determine the most pressing research questions. Priority setting exercises influence decisions around research funding, development and policy. We compared published dementia research priority setting exercises from international healthcare systems. Methods: Four multidisciplinary, international, electronic databases were searched for relevant studies (2010 until 2021). Priorities were extracted, coded and assigned to categories using thematic analysis. The Nine Common Themes of Good Practice (9CTGP) and the Reporting guideline for priority setting of health research (REPRISE) checklists were used to assess methodological and reporting quality respectively.Results: From 265 titles, 10 priority setting exercises (1179 participants, 147 priorities) were included. Studies spanned four continents and the majority included people living with dementia and their care-givers in the priority setting process (68%). Only one paper met all the best practice indicators. Issues around inclusiveness, implementation and evaluation of the priorities were apparent in nine papers. We categorised priorities under eight themes: caregivers (25%, n = 37), support (24%, n = 35), awareness and education (16%, n = 24), drugs and interventions (14%, n = 21), diagnosis (8%, n = 12), pathology (6%, n = 9), research design (5%, n = 7), and prevention (1%, n = 2). Priorities varied by geographical region, with awareness and education of higher priority in low-middle income countries, compared to caregivers and support in high income countries.Conclusions: Key priorities were identified with some commonality around themes considered of greatest importance. There is scope to improve the process and reporting of priority setting. Priorities differed according to contextual factors and so, priorities specific to one healthcare setting may not be applicable to others.

What matters to people and families affected by cerebral small vessel disease (SVD)? A qualitative grounded theory investigation

“…However, whilst quality of life (QoL) in stroke survivors is multifactorial [12] , most of our correspondents specifically attributed their difficulties to cognitive impairment, a prominent feature of SVD [2] . Interestingly, the concerns reported in our study differ slightly from international dementia research priorities where more attention is given to the needs of the care giver, support, and education about the disease [7] . In our study we did not have the granularity to delve into this question; nonetheless, this reflects that although overlap exists, patients affected by SVD may have different concerns from those affected by dementia.…”

“…Similarly, dementia research (predominantly into the field of Alzheimer's Disease) focusses on cognitive scores and to a lesser degree function [4] . Previous research into what matters to patients has focussed on those affected by stroke or dementia – either patient priority setting partnerships in post stroke research priorities [5] or reviews of prioritisation exercises for those living with stroke [6] or cognitive decline [7] . SVD causes multiple other symptoms other than stroke or dementia, including atypical psychiatric symptoms [8] .…”