'Do I have the capacity to make capacity judgements?' Researcher reflections from a person-centred dementia support study.

Background And Purpose: Adults lacking capacity are under-represented in research; therefore, the evidence-base surrounding their support needs is inferior compared to other populations. Involving this group in research is fraught with challenges, including researcher uncertainties about how to carry out capacity judgements. Whilst ethical guidelines and principles provide overarching guidance, there is a lack of detailed guidance and evidence-based training, incorporating practical 'on the ground' strategies and advice on communication practices.

Health Inequities in the Care Pathways for People Living with Young- and Late-Onset Dementia: From Pre-COVID-19 to Early Pandemic.

Background: Little is known about how people with dementia and/or their family carers access health and social care services after a diagnosis. The aim of this study was to explore potential inequalities in care pathways for people with young-onset and late on-set dementia (YOD/LOD), including their family carers, with coronavirus disease 2019 (COVID-19) occurring throughout the course of the study and enabling a comparison between pre-pandemic and COVID-19 times.

Methods: People with YOD and LOD with their family carers were recruited via local support groups in the North West Coast region of England.

Emergency department and hospital admissions among people with dementia living at home or in nursing homes: results of the European RightTimePlaceCare project on their frequency, associated factors and costs.

Background: Evidence is lacking on the differences between hospitalisation of people with dementia living in nursing homes and those living in the community. The objectives of this study were: 1) to describe the frequency of hospital admission among people with dementia in eight European countries living in nursing homes or in the community, 2) to examine the factors associated with hospitalisation in each setting, and 3) to evaluate the costs associated with it.

Methods: The present study is a secondary data analysis of the RightTimePlaceCare European project.

Applying a new concept of embedding qualitative research: an example from a quantitative study of carers of people in later stage dementia.

Background: Qualitative methods are increasingly included in larger studies to provide a richer understanding of people's experience. This paper explores the potential of using a novel approach to embedded qualitative design as part of an observational study examining the effectiveness of home support for people in later stage dementia in England. The method involved collecting and analysing unsolicited conversational comments made by participants as they completed standardised measures.

Predictors of finance management in dementia: managing bills and taxes matters.

Unlabelled: ABSTRACTObjectives:Finance management skills deteriorate early on in dementia, and can influence the ability to maintain control over personal affairs. The aim of this study was to assess the contributions of different types of cognition and motor functioning to finance management.

Design: Cross-sectional analysis using secondary data.

Inter-rater agreement of the Quality of Life-Alzheimer's Disease (QoL-AD) self-rating and proxy rating scale: secondary analysis of RightTimePlaceCare data.

Background: To assess the quality of life of people with dementia, measures are required for self-rating by the person with dementia, and for proxy rating by others. The Quality of Life in Alzheimer's Disease scale (QoL-AD) is available in two versions, QoL-AD-SR (self-rating) and QoL-AD-PR (proxy rating). The aim of our study was to analyse the inter-rater agreement between self- and proxy ratings, in terms of both the total score and the items, including an analysis specific to care setting, and to identify factors associated with this agreement.

Practitioners preferences of care coordination for older people: A discrete choice experiment.

These findings demonstrate the importance of organisations providing care coordination for older people receiving long-term funding. Further research is required to investigate the influence of service setting on practitioner preferences. This study explored practitioner preferences about the relative value of attributes of care coordination services for older people.

Caring for a Person With Dementia on the Margins of Long-Term Care: A Perspective on Burden From 8 European Countries.

Objectives: To explore associations between carer burden and characteristics of (1) the informal carer, (2) the person with dementia, and (3) the care support network in 8 European countries.

Design: Cross-sectional study.

Setting: People with dementia judged at risk of admission to long-term care (LTC) facilities in 8 European countries (Estonia, Finland, France, Germany, Netherlands, Spain, Sweden, United Kingdom).

Initiating activities of daily living contributes to well-being in people with dementia and their carers.

Objective: Problems with everyday functioning are linked to reduced well-being in people with dementia (PwD) and their carers. However, previous research has almost solely investigated the performance of everyday activities, and global functioning without analysing individual activities. This study explored how deficits in initiating and performing individual activities were associated with carer burden and poorer quality of life of carers and PwD.

Evaluating the effectiveness of different approaches to home support for people in later stage dementia: a protocol for an observational study.

Background: Dementia is a major health problem with a growing number of people affected by the condition, both directly and indirectly through caring for someone with dementia. Many live at home but little is known about the range and intensity of the support they receive. Previous studies have mainly reported on discrete services within a single geographical area.

Care co-ordination for older people in the third sector: scoping the evidence.

The third sector has played a significant role internationally in the delivery of adult social care services for many years. Its contribution to care co-ordination activities for older people, however, in England and elsewhere, is relatively unknown. A scoping review was therefore conducted to ascertain the character of the literature, the nature and extent of third sector care co-ordination activity, and to identify evidence gaps.

Hierarchical Decline of the Initiative and Performance of Complex Activities of Daily Living in Dementia.

Objectives: While basic activities of daily living hierarchically decline in dementia, little is known about the decline of individual instrumental activities of daily living (IADLs). The objective of this study was to assess initiative and performance deficits in IADLs in dementia.

Methods: A total of 581 carers completed the revised Interview for Deterioration in Daily Living Activities in Dementia 2 to rate their relative's everyday functioning.

People with dementia and carer preferences for home support services in early-stage dementia.

Objectives: To examine people with dementia and carer preferences for home support attributes in early-stage dementia, building on the paucity of evidence in this area.

Method: Preferences from 44 people with dementia and 103 carers, recruited through memory clinics and an online questionnaire, were assessed with a Discrete Choice Experiment survey, with attributes informed by an evidence synthesis and lay consultation. A conditional logit model was used to estimate preference weights for the attributes within a home support 'package'.

Costs of formal and informal care at home for people with dementia: 'Expert panel' opinions from staff and informal carers.

Effective home support in dementia is key in delaying nursing home admission. However, home support is frequently not tailored to the individual needs of people with dementia. Staff allocating home support services may not identify important care needs, which only be recognised by informal carers.

What Makes Institutional Long-Term Care the Most Appropriate Setting for People With Dementia? Exploring the Influence of Client Characteristics, Decision-Maker Attributes, and Country in 8 European Nations.

Objectives: To explore the extent to which client characteristics, decision-maker attributes, and country influence judgments of institutional long-term care (ILTC) appropriateness for people with dementia.

Design, Setting, And Participants: A total of 161 experts in dementia care from 8 European countries reviewed a series of 14 vignettes representing people with dementia on the cusp of ILTC admission and indicated the most appropriate setting in which to support each case in a simple discrete choice exercise: own home, very sheltered housing, residential home, or nursing home. At least 16 experts participated in each country (Estonia, Finland, France, Germany, the Netherlands, Spain, Sweden, and the United Kingdom).

Depressive symptomatology and associated factors in dementia in Europe: home care versus long-term care.

Background: This study forms part of a larger European programme investigating the transition from home care to long-term care (LTC) facility in people with dementia (PwD) at the margins of LTC. The aim of this study was to explore the factors associated with depressive symptomatology in PwD in different settings.

Methods: A total of 1,538 PwD, of which 957 received home care and 581 lived in a LTC facility, and their carers were interviewed.

Informal dementia care: Consequences for caregivers' health and health care use in 8 European countries.

Background: Informal (dementia) care has economic consequences throughout the health care system. Whilst the health and wellbeing of the care recipient might improve, the health of the caregiver might also change, typically for the worse. Therefore, this analysis aims to examine the association between caregiving intensity and caregivers' health and health care utilization.

Care and Service at Home for Persons With Dementia in Europe.

Purpose: To describe available and utilized formal care and service at home for persons with dementia, from diagnosis to end-of-life stage, in eight European countries.

Design: A descriptive cross-country design concerning eight European countries as a part of the European research project RightTimePlaceCare.

Methods: The research team in each country used a mapping system to collect country-specific information concerning dementia care and service system.

Experience of burden in carers of people with dementia on the margins of long-term care.

Objectives: This study aimed to identify the factors determining carer burden in a group of carers supporting people with dementia (PwD) deemed to be at high risk of moving to long-term residential or nursing home care.

Design: National data collected as part of the European RightTimePlaceCare project were analysed. This included 81 dyads of community-dwelling people with dementia and their informal carers.

Depressive symptomatology in severe dementia in a European sample: prevalence, associated factors and prescription rate of antidepressants.

Background: Depression is a common comorbid disorder of dementia. This study explores the prevalence of and factors associated with depressive symptomatology, and antidepressant prescription rates in severe dementia across eight European countries.

Methods: In total, 414 people with severe dementia completed measures of cognition and quality of life (QoL), whilst carers completed proxy measures of activities of daily living (ADLs), depression, neuropsychiatric symptoms, QoL and comorbidity.

Change in quality of life of people with dementia recently admitted to long-term care facilities.

Aim: To assess which factors are associated with change in quality of life of people with dementia who have recently been admitted to long-term care facilities.

Background: Many people with dementia will be admitted to long-term care facilities at some point during their disease. It is currently unknown which factors are associated with improvement and/or deterioration of quality of life immediately following admission.