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

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 followup 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.

Emotion regulation and decision-making in persons with dementia: A scoping review

“…As detailed in the Introduction, emotion regulation and decision-making in dementia are complex concepts relating to heterogenous bodies of the literature. In the current study, we aimed to investigate the various constellations of associations between different characteristics of emotion regulation and of decision-making in dementia, thereby enabling the identification of knowledge gaps relating to the development of theory concerning self-regulation and decision-making in dementia ( Farina et al, 2020 ). Accordingly, and based on the guidance provided by Munn et al (2018) , scoping review methodology was employed.…”

“…For example, self-report measures that assess emotional experience as a single construct (e.g., anxiety) or as one factor of a compound construct (e.g., health-related quality of life) and experimental tasks that assess response-focused emotional processes ( Webb et al, 2012 ); and c) tasks/measures labeled as measuring emotion regulation. Neuroanatomical assessments of emotion-related structures were incompatible with our focus ( Farina et al, 2020 ) and therefore excluded; 5. while decision-making in dementia may involve others, our focus was on the person with dementia’s perspective on individual factors that may influence everyday decision-making ( Farina et al, 2020 ). Therefore, we only included studies in which the person with dementia was the source of evidence ( De Boer et al, 2007 ); and 6. to rule out intervention effects on the associations under study, in intervention studies, we only considered preintervention data for inclusion.…”

“…Persons with dementia make decisions across many areas of their lives including everyday, social, care planning, and financial contexts ( Davis et al, 2017 ; Groen-van de Ven et al, 2017 ). Given our focus on self-regulation processes ( Farina et al, 2020 ), this review focused on daily decisions that are made by the person with dementia and relate to one’s desires including regarding personal (e.g., eating, dressing) and social activities (termed everyday decision-making ; Davis et al, 2017 ). Everyday decision-making in persons with dementia can be evaluated by decision-making tasks ( De Siqueira et al, 2017 ), self-report scales, and interview-based assessments ( Davis et al, 2017 ).…”

“…Understanding the associations between emotion regulation impairments and decision-making in dementia could therefore inform the development of well-being models in dementia. In addition, given the modifiable nature of emotion regulation capacities ( Berking & Lukas, 2015 ), a deeper understanding of its influence on decision-making and consequent well-being can potentially promote the development of self-regulation-based interventions ( Farina et al, 2020 ) and enhance existing interventions that incorporate emotion regulation and/or decision-making components/evaluations (e.g., see Oyebode and Parveen, 2019 ). Consistent with the above aims, this scoping review examines quantitative evidence concerning the associations between emotion regulation and decision-making in dementia.…”

“…The present investigation was driven by the desire to promote the development of theoretical models of well-being in dementia that incorporate core aspects of self-regulation (e.g., emotion regulation) ( Williams et al, 2018 ) and decision-making (see Farina et al, 2020 for protocol) and could potentially inform well-being interventions ( Berking & Lukas, 2015 ) in dementia. In this review, we first focus on theory and evidence concerning emotion regulation in older persons.…”