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

Farina, Nicolas, Hicks, Ben, Baxter, Kate, Birks, Yvonne, Brayne, Carol, Dangoor, Margaret, Dixon, Josie, Harris, Peter R, Hu, Bo, Knapp, Martin, Miles, Eleanor, Perach, Rotem, Read, Sanna, Robinson, Louise, Rusted, Jennifer, Stewart, Rob, Thomas, Alan, Wittenberg, Raphael and Banerjee, Sube (2019) DETERMinants of quality of life, care and costs, and consequences of INequalities in people with dementia and their carers (DETERMIND): a protocol paper. International Journal of Geriatric Psychiatry. pp. 1-12. ISSN 0885-6230

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Abstract

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.

Item Type: Article
Keywords: Dementia, Alzheimer’s disease, inequalities, inequities, ethnicity, gender, deprivation, caregiving, cost of care, services, diagnosis, LGBT+, decision-making, self-funding
Schools and Departments: Brighton and Sussex Medical School > Brighton and Sussex Medical School
Brighton and Sussex Medical School > Neuroscience
School of Psychology > Psychology
Subjects: H Social Sciences
Depositing User: Ben Hicks
Date Deposited: 09 Dec 2019 08:37
Last Modified: 30 Jan 2020 16:45
URI: http://sro.sussex.ac.uk/id/eprint/88653

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Project NameSussex Project NumberFunderFunder Ref
DETERMIND: DETERMinants of quality of life, care and costs IN people with Dementia and their carers after diagnosisUnsetESRC-ECONOMIC & SOCIAL RESEARCH COUNCILES/S010351/1