Development and testing of search strategies and extraction matrices for a human rights-based international documentary analysis of dementia legislation and policies

Introduction: The recognition of human rights for individuals with psychosocial disabilities, including dementia, is a global public health priority. Examining normative and policy frameworks is essential to promote a human rights-based approach.

Aim: To develop and test search strategies and data extraction matrices for an European mapping of laws and policies relevant to dementia care.

Methods: Seven (Czech Republic, Ireland, Italy, Netherlands, Poland, Slovenia, UK) countries piloted the selection strategies and the extraction matrix. In each country, two researchers familiar with national laws and policies on dementia identified relevant higher-level documents and cross-verified the extracted data. The extraction matrix was developed using a hybrid deductive-inductive strategy that combined the theoretical framework of the UN Convention on the Rights of Persons with Disabilities (CRPD) with findings from thematic analysis of a purposeful sample of documents. The extraction matrix was structured around eight categories of rights (non-discrimination, living independently, equal recognition before the law, privacy, health, work, adequate living conditions, participation in political and cultural life). Each category was expanded into specific sub-rights with practical examples. A modified matrix version was also developed to fit international and European sources.

Results: The pilot phase confirmed the feasibility of the extraction matrices and highlighted the need to refine the search strategies for policy documents. During testing, overlapping rights and examples were merged or removed, while new ones were incorporated; for instance, ‘care coordination and support’ was added under ‘equal recognition before the law’, and ‘participation in social life’ was expanded to include ‘voluntary associations’, ‘educational initiatives’, ‘intergenerational support’ and ‘support to community spaces’. Some rights were reworded for clarity. International documents outlined general principles.

Conclusions: The complete mapping will identify country-specific gaps in the legislative and policy frameworks and guide their alignment with CRPD principles, to better guarantee the rights of people with dementia.