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DETERMinants of quality of life, care and costs, and consequences of INequalities in people with dementia and their carers (DETERMIND): a protocol paper

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posted on 2023-06-09, 19:53 authored by Nicolas Farina, Ben HicksBen Hicks, Kate Baxter, Yvonne Birks, Carol Brayne, Margaret Dangoor, Josie Dixon, Pete HarrisPete Harris, Bo Hu, Martin Knapp, Eleanor MilesEleanor Miles, Rotem PerachRotem Perach, Sanna Read, Louise Robinson, Jennifer Rusted, Rob Stewart, Alan Thomas, Raphael Wittenberg, Sube Banerjee
Objectives: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered, questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers. Method: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort - 900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care WS3: Relationship between use and costs of services and outcomes WS4: Experiences of self-funders of care WS5: Decision-making processes for people with dementia and carers WS6: Effect of diagnostic stage and services on outcomes WS7: Theory of Change informed strategy and actions for applying the research findings Outcomes: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia.

Funding

DETERMIND: DETERMinants of quality of life, care and costs IN people with Dementia and their carers after diagnosis; ESRC-ECONOMIC & SOCIAL RESEARCH COUNCIL; ES/S010351/1

History

Publication status

  • Published

File Version

  • Accepted version

Journal

International Journal of Geriatric Psychiatry

ISSN

0885-6230

Publisher

Wiley

Page range

1-12

Department affiliated with

  • BSMS Publications

Full text available

  • Yes

Peer reviewed?

  • Yes

Legacy Posted Date

2019-12-09

First Open Access (FOA) Date

2020-12-26

First Compliant Deposit (FCD) Date

2019-12-06

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