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Pathways to care for people with dementia in India: an exploratory study using case vignettes

Thomas, Priya Treesa, Rajagopalan, Jayeeta, Hurzuk, Saadiya, Ramasamy, Narendhar, Pattabiraman, Meera, De Poli, Chiara ORCID: 0000-0002-1879-553X, Lorenz-dant, Klara, Comas-herrera, Adelina ORCID: 0000-0002-9860-9062 and Alladi, Suvarna (2023) Pathways to care for people with dementia in India: an exploratory study using case vignettes. Dementia. ISSN 1471-3012

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Identification Number: 10.1177/14713012231193081


Background: Limited evidence exists on how people living with dementia and their family/unpaid carers navigate care and support in India. Aim: This study used case vignettes to illustrate likely pathways to care for dementia, from receiving a diagnosis to long-term support, in India and to highlight gaps and challenges associated with current care provision for persons living with dementia. Methods: As part of the Strengthening Responses to Dementia in Developing Countries (STRiDE) project, and to contribute to an analysis of dementia care policies and systems in India, case vignettes were used to illustrate the diverse situations that people with dementia and their families may experience when seeking care in the Indian context. Eight hypothetical, but realistic cases of people with dementia were created by a multi-disciplinary team with experience in dementia care in India, to map out the likely care journeys of each case. Results: Investigating eight diverse care trajectories of people living with dementia highlighted important patterns relevant to the Indian context. We identified delays in dementia diagnosis to be attributed to low awareness of dementia among the general public and medical professionals in addition to a critical shortage of specialist services involved in facilitating dementia diagnosis. Post-diagnosis, support was recognized as limited and associated with considerable out-of-pocket (OOP) costs. Families primarily provide long-term care for people with dementia till end of life. Conclusions and Recommendations: Several steps need to be taken in order to improve dementia care in India. Increasing dementia awareness among both medical professionals and general public is essential. Shortages in dementia specialists can be addressed in part through appropriate task shifting. Lastly, more research is needed to develop evidence-based community interventions to support informal care provision for persons with dementia in India.

Item Type: Article
Additional Information: © 2023 The Author(s)
Divisions: Personal Social Services Research Unit
Subjects: H Social Sciences > H Social Sciences (General)
R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Date Deposited: 11 Aug 2023 10:15
Last Modified: 16 Jun 2024 18:15

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