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The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce

Lookup NU author(s): Professor Dame Louise Robinson

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This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


Abstract

© 2024 The Authors. International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.Background: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. Methods: We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face-to-face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non-profit organisations. Results: Forty-nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single-point-of-contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. Conclusions: These findings provide a first insight on dementia inequalities across Europe, generate cross-country learnings on how to address these inequalities in dementia, and can underpin further solution-focused research that informs policy and key decision makers to implement changes.


Publication metadata

Author(s): Giebel C, Harding E, Volkmer A, Chirico I, Hopper L, Szczesniak D, Talbot CV, Diaz-Ponce A, Gove D, Knapp M, Robinson L, Rahman-Amin M, Thyrian R, Hanna K

Publication type: Article

Publication status: Published

Journal: International Journal of Geriatric Psychiatry

Year: 2024

Volume: 39

Issue: 5

Print publication date: 08/05/2024

Online publication date: 08/05/2024

Acceptance date: 19/04/2024

Date deposited: 10/06/2024

ISSN (print): 0885-6230

ISSN (electronic): 1099-1166

Publisher: John Wiley and Sons Ltd

URL: https://doi.org/10.1002/gps.6096

DOI: 10.1002/gps.6096

Data Access Statement: Data sharing not applicable to this article as no datasets were generated or analysed during the current study.

PubMed id: 38719786


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Funding

Funder referenceFunder name
the National Institute for Health and Care Research Applied Research Collaboration North West Coast (ARC NWC)

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