Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal.

INTRODUCTION: The intermediate stages of dementia are relatively under-researched, including in Portugal. The Actifcare (ACcess to TImely Formal Care) EU-JPND project studied people with mild-moderate dementia, namely their needs, access to and use of community services (e.g., day centers, home support). In our baseline assessment of the Portuguese Actifcare cohort, the unmet needs of some participants would call for formal support, which was not always accessible or used. We now report the main results of the 12-month follow-up, analyzing changes in needs, service (non)use, quality of life and related variables. METHODS: This was a longitudinal, observational study using a convenience sample of 54 dyads of people with dementia and their family carers. Our main outcomes were the Camberwell Assessment of Need for the Elderly (CANE) and the Resources Utilization in Dementia. Clinical-functional, quality of life, psychological distress and caregiving-related assessments were also used. RESULTS: At follow-up, the cognitive and functional status of people with dementia declined (p < 0.001), and their neuropsychiatric symptoms increased (p = 0.033). Considering CANE interviewers' ratings, the total needs of people with dementia increased at follow-up (p < 0.001) but not the unmet needs. Quality of life was overall stable. The use of formal care did not increase significantly, but informal care did in some domains. Carers' depressive symptoms increased (p = 0.030) and perseverance time decreased (p = 0.045). However, carers' psychological distress unmet needs were lower (p = 0.007), and their stress and quality of life remained stable. CONCLUSION: People with dementia displayed complex biopsychosocial unmet needs. Their cognitive-functional decline over one year was not accompanied by a corresponding increase in any pattern of unmet need, nor of service use. Reliance on informal care (namely supervision) may have contributed to this. Caregiving-related outcomes evolved according to different trends, although stability was almost the rule. Primary carers were even more present at follow-up, without an apparently heavier toll on their own needs, burden, and quality of life. Overall, this longitudinal study comprehensively assessed Portuguese community-dwelling people with dementia. Despite the lack of generalizability, participants' needs remained overall stable and partly unmet over one year. Longer follow-up periods are needed to understand such complex processes.

The quality of family relationships in dementia: Mixed methods to unravel mixed feelings.

Objective: Close relationships influence health and quality of life outcomes for people with dementia and their families. Yet, we know little on the role of different relationship domains with quantitative methods having proved to have limitations in this research field. We aimed to study these relationship domains over time, contrasting the views of people with dementia and their family carers, making use of both quantitative and qualitative approaches.Methods: A convergent mixed methods design was adopted, analysing longitudinal data (four time points over three years) from 66 dyads of Portuguese community-dwelling people with dementia and their primary carers, from the EU-Actifcare project sample. Quantitative assessments used sociodemographic and clinical variables, and Positive Affect Index scores, with descriptive and inferential analyses. Qualitative data, collected through individual and joint semi-structured interviews, were explored using thematic analysis.Results: Both quantitative and qualitative findings demonstrated that some domains of relationship quality are affected in different ways, with changes occurring at different stages. Some (e.g., 'communication') may even improve after initial decline. 'Closeness' was consistently altered over time, from carers' perspectives, and played an important protective role regarding institutionalisation. Overall, changes in the relationship quality were perceived differently by people with dementia and their carers, and these divergent perspectives often led to tension. Qualitative data revealed that 'mixed feelings' (ambivalence) involve complex experiences, arguably more difficult to manage than negative feelings alone. Furthermore, perceived informal support, particularly from the extended family, and receiving formal services' assistance, seemed to facilitate positive (re)appraisals of the relationship.Conclusions: A deeper understanding of relationship quality and its domains as dementia progresses may help tailoring interventions to tackle modifiable aspects of relationships, meeting the needs and cherishing the resources of dyads and families. Timely assessments could identify relationships at risk and need for support, including for alternative caring arrangements.

Cognitive rehabilitation for people with mild to moderate dementia.

BACKGROUND: Cognitive impairments affect functional ability in people with dementia. Cognitive rehabilitation (CR) is a personalised, solution-focused approach that aims to enable people with mild-to-moderate dementia to manage everyday activities and maintain as much independence as possible. OBJECTIVES: To evaluate the effects of CR on everyday functioning and other outcomes for people with mild-to-moderate dementia, and on outcomes for care partners. To identify and explore factors that may be associated with the efficacy of CR. SEARCH METHODS: We searched the Cochrane Dementia and Cognitive Improvement Group Specialised Register, which contains records from MEDLINE, EMBASE, CINAHL, PsycINFO, LILACS, and other clinical trial databases, and grey literature sources. The most recent search was completed on 19 October 2022. SELECTION CRITERIA: We included randomised controlled trials (RCTs) comparing CR with control conditions and reporting relevant outcomes for the person with dementia and/or the care partner. DATA COLLECTION AND ANALYSIS: We extracted relevant data from published manuscripts and contacted trial authors if necessary. Within each of the comparisons, we pooled data for each outcome of interest and conducted inverse-variance, random-effects meta-analyses. We evaluated the certainty of the evidence using GRADEpro GDT. MAIN RESULTS: We identified six eligible RCTs published in English between 2010 and 2022, which together included 1702 participants. The mean age of participants ranged from 76 to 80 and the proportion of male participants was between 29.4% and 79.3%. Most participants, in the studies where the type of dementia was reported, had a diagnosis of Alzheimer's disease (AD; n = 1002, 58.9% of the whole sample, 81.2% of the participants for whom the specific diagnosis was reported). Risk of bias in the individual studies was relatively low. The exception was a high risk of bias in relation to blinding of participants and practitioners, which is not usually feasible with psychosocial interventions.  Our primary outcome of everyday functioning was operationalised in the included studies as goal attainment in relation to activities targeted in the intervention. For our main comparison of CR with usual care, we pooled data for goal attainment evaluated from three perspectives (self-rating of performance, informant rating of performance, and self-rating of satisfaction with performance) at end of treatment and at medium-term follow-up (3 to 12 months). We could also pool data at these time points for 20 and 19 secondary outcomes respectively. The review findings were strongly driven by one large, high-quality RCT.  We found high-certainty evidence of large positive effects of CR on all three primary outcome perspectives at the end of treatment: participant self-ratings of goal attainment (standardised mean difference (SMD) 1.46, 95% confidence interval (CI) 1.26 to 1.66; I2 = 0%; 3 RCTs, 501 participants), informant ratings of goal attainment (SMD 1.61, 95% CI 1.01 to 2.21; I2 = 41%; 3 RCTs, 476 participants), and self-ratings of satisfaction with goal attainment (SMD 1.31, 95% CI 1.09 to 1.54; I2 = 5%; 3 RCTs, 501 participants), relative to an inactive control condition. At medium-term follow-up, we found high-certainty evidence showing a large positive effect of CR on all three primary outcome perspectives: participant self-ratings of goal attainment (SMD 1.46, 95% CI 1.25 to 1.68; I2 = 0%; 2 RCTs, 432 participants), informant ratings of goal attainment (SMD 1.25, 95% CI 0.78 to 1.72; I2 = 29%; 3 RCTs, 446 participants), and self-ratings of satisfaction with goal attainment (SMD 1.19, 95% CI 0.73 to 1.66; I2 = 28%; 2 RCTs, 432 participants), relative to an inactive control condition. For participants at the end of treatment we found high-certainty evidence showing a small positive effect of CR on self-efficacy (2 RCTs, 456 participants) and immediate recall (2 RCTs, 459 participants). For participants at medium-term follow-up we found moderate-certainty evidence showing a small positive effect of CR on auditory selective attention (2 RCTs, 386 participants), and a small negative effect on general functional ability (3 RCTs, 673 participants), and we found low-certainty evidence showing a small positive effect on sustained attention (2 RCTs, 413 participants), and a small negative effect on memory (2 RCTs, 51 participants) and anxiety (3 RCTs, 455 participants).  We found moderate- and low-certainty evidence indicating that at the end of treatment CR had negligible effects on participant anxiety, quality of life, sustained attention, memory, delayed recall, and general functional ability, and at medium-term follow-up on participant self-efficacy, depression, quality of life, immediate recall, and verbal fluency. For care partners at the end of treatment we found low-certainty evidence showing a small positive effect on environmental aspects of quality of life (3 RCTs, 465 care partners), and small negative effects of CR on level of depression (2 RCTs, 32 care partners) and on psychological wellbeing (2 RCTs, 388 care partners).  For care partners at medium-term follow-up we found high-certainty evidence showing a small positive effect of CR on social aspects of quality of life (3 RCTs, 436 care partners) and moderate-certainty evidence showing a small positive effect on psychological aspects of quality of life (3 RCTs, 437 care partners). We found moderate- and low-certainty evidence at the end of treatment that CR had negligible effects on care partners' physical health, psychological and social aspects of quality of life, and stress, and at medium-term follow-up for the physical health aspect of care partners' quality of life and psychological wellbeing. AUTHORS' CONCLUSIONS: CR is helpful in enabling people with mild or moderate dementia to improve their ability to manage the everyday activities targeted in the intervention. Confidence in these findings could be strengthened if more high-quality studies contributed to the observed effects. The available evidence suggests that CR can form a valuable part of a clinical toolkit to assist people with dementia in overcoming some of the everyday barriers imposed by cognitive and functional difficulties. Future research, including process evaluation studies, could help identify avenues to maximise CR effects and achieve wider impacts on functional ability and wellbeing.

ANTECEDENTES: El deterioro cognitivo afecta la capacidad funcional de las personas con demencia. La rehabilitación cognitiva (RC) es un enfoque personalizado y centrado en soluciones que pretende que las personas con demencia de leve a moderada puedan realizar las actividades cotidianas y mantener la mayor independencia posible. OBJETIVOS: Evaluar los efectos de la RC en la funcionalidad cotidiana y otros desenlaces de las personas con demencia leve a moderada, así como en los desenlaces de los cuidadores. Identificar y explorar los factores que pueden estar asociados con la eficacia de la RC. MÉTODOS DE BÚSQUEDA: Se realizaron búsquedas en el Registro especializado del Grupo Cochrane de Demencia y trastornos cognitivos (Cochrane Dementia and Cognitive Improvement Group), que contiene registros de MEDLINE, EMBASE, CINAHL, PsycINFO, LILACS y otras bases de datos de ensayos clínicos, y fuentes de literatura gris. La búsqueda más reciente se completó el 19 de noviembre de 2022. CRITERIOS DE SELECCIÓN: Se incluyeron los ensayos controlados aleatorizados (ECA) que compararon la RC con condiciones control e informaron desenlaces relevantes para la persona con demencia y el cuidador. OBTENCIÓN Y ANÁLISIS DE LOS DATOS: Se extrajeron los datos pertinentes de los manuscritos publicados y se estableció contacto con los autores de los ensayos de ser necesario. Dentro de cada una de las comparaciones, se agruparon los datos de cada desenlace de interés y se realizaron metanálisis de efectos aleatorios por la inversa de la varianza. La certeza de la evidencia se evaluó mediante el método GRADE. RESULTADOS PRINCIPALES: Se identificaron seis ECA elegibles publicados en inglés entre 2010 y 2022, que en conjunto incluyeron 1702 participantes. La media de edad de los participantes varió de 76 a 80 años, y la proporción de participantes masculinos varió del 29,4% al 79,3%. La mayoría de los participantes, de los estudios en los que se informó el tipo de demencia, tenían un diagnóstico de enfermedad de Alzheimer (EA; n = 1002, 58,9% de toda la muestra, 81,2% de los participantes en los que se informó el diagnóstico específico). El riesgo de sesgo en los estudios individuales fue relativamente bajo. La excepción fue un alto riesgo de sesgo en relación con el cegamiento de los participantes y los profesionales, que no suele ser factible con las intervenciones psicosociales.  El desenlace principal de la funcionalidad cotidiana se operacionalizó en los estudios incluidos como el logro de objetivos en relación con las actividades abordadas en la intervención. Para la comparación principal de la RC con la atención habitual, se agruparon los datos del logro de los objetivos evaluados desde tres perspectivas (autoevaluación del desempeño, valoración de los informantes sobre el desempeño y autoevaluación de la satisfacción con el desempeño) al final del tratamiento y en el seguimiento a medio plazo (de tres a 12 meses). También fue posible agrupar los datos en estos puntos temporales de 20 y 19 desenlaces secundarios respectivamente. Los resultados de la revisión dependieron fuertemente de un ECA grande y de calidad alta.  Se encontró evidencia de certeza alta de grandes efectos positivos de la RC en los tres desenlaces principales al final del tratamiento: autoevaluaciones de los participantes sobre el logro de los objetivos (diferencia de medias estandarizada [DME] 1,46; intervalo de confianza [IC] del 95%: 1,26 a 1,66; I 2 = 0%; tres ECA, 501 participantes), valoraciones de los informantes sobre el logro de los objetivos (DME 1,61; IC del 95%: 1,01 a 2,21; I 2 = 41%; tres ECA, 476 participantes) y autoevaluaciones de la satisfacción con el logro de los objetivos (DME 1,31; IC del 95%: 1,09 a 1,54; I 2 = 5%; tres ECA, 501 participantes), en relación con una condición control inactiva. En el seguimiento a medio plazo se encontró evidencia de certeza alta que mostró un gran efecto positivo de la RC sobre las tres perspectivas de desenlaces principales: autoevaluaciones de los participantes sobre el logro de los objetivos (DME 1,46; IC del 95%: 1,25 a 1,68; I 2 = 0%; dos ECA, 432 participantes), valoraciones de los informantes sobre el logro de los objetivos (DME 1,25; IC del 95%: 0,78 a 1,72; I 2 = 29%; tres ECA, 446 participantes) y autoevaluaciones de la satisfacción con el logro de los objetivos (DME 1,19; IC del 95%: 0,73 a 1,66; I 2 = 28%; dos ECA, 432 participantes), en relación con una condición control inactiva. Con respecto a los participantes, al final del tratamiento se encontró evidencia de certeza alta que muestra un pequeño efecto positivo de la RC sobre la autoeficacia (dos ECA, 456 participantes) y el recuerdo inmediato (dos ECA, 459 participantes). También en los participantes, en el seguimiento a medio plazo se encontró evidencia de certeza moderada que mostró un pequeño efecto positivo de la RC sobre la atención auditiva selectiva (dos ECA, 386 participantes) y un pequeño efecto negativo sobre la capacidad funcional general (tres ECA, 673 participantes), además se encontró evidencia de certeza baja que mostró un pequeño efecto positivo sobre la atención sostenida (dos ECA, 413 participantes) y un pequeño efecto negativo sobre la memoria (dos ECA, 51 participantes) y la ansiedad (tres ECA, 455 participantes).  Se encontró evidencia de certeza moderada y baja que indicó que al final del tratamiento la RC tuvo efectos insignificantes sobre la ansiedad, la calidad de vida, la atención sostenida, la memoria, el recuerdo retardado y la capacidad funcional general de los participantes, y en el seguimiento a medio plazo sobre la autoeficacia, la depresión, la calidad de vida, el recuerdo inmediato y la fluidez verbal de los participantes. En el caso de los cuidadores, al final del tratamiento se encontró evidencia de certeza baja que mostró un pequeño efecto positivo sobre los aspectos ambientales de la calidad de vida (tres ECA, 465 cuidadores), y pequeños efectos negativos de la RC sobre el nivel de depresión (dos ECA, 32 cuidadores) y sobre el bienestar psicológico (dos ECA, 388 cuidadores).  También en los cuidadores, en el seguimiento a medio plazo se encontró evidencia de certeza alta que mostró un pequeño efecto positivo de la RC sobre los aspectos sociales de la calidad de vida (tres ECA, 436 cuidadores) y evidencia de certeza moderada que mostró un pequeño efecto positivo sobre los aspectos psicológicos de la calidad de vida (tres ECA, 437 cuidadores). Se encontró evidencia de certeza moderada y baja al final del tratamiento de que la RC tenía efectos insignificantes sobre la salud física de los cuidadores, los aspectos psicológicos y sociales de la calidad de vida y el estrés, así como en el seguimiento a medio plazo en el aspecto de la salud física de la calidad de vida de los cuidadores y el bienestar psicológico. CONCLUSIONES DE LOS AUTORES: La RC ayuda a las personas con demencia leve o moderada a mejorar su capacidad para realizar las actividades cotidianas objeto de la intervención. La confianza en estos resultados se podría reforzar si más estudios de calidad alta contribuyeran a los efectos observados. La evidencia disponible indica que la RC podría constituir una parte valiosa de un conjunto de herramientas clínicas para ayudar a las personas con demencia a superar algunas de las barreras cotidianas impuestas por las dificultades cognitivas y funcionales. Los estudios de investigación futuros, incluidos los estudios de evaluación de procesos, podrían ayudar a identificar vías para maximizar los efectos de la RC y lograr repercusiones más amplias en la capacidad funcional y el bienestar.

Characteristics of people living with undiagnosed dementia: findings from the CFAS Wales study.

BACKGROUND: Many people living with dementia remain undiagnosed, with diagnosis usually occurring long after signs and symptoms are present. A timely diagnosis is important for the wellbeing of the person living with dementia and the family, allowing them to plan and have access to support services sooner. The aim of this study was to identify demographic characteristics and neuropsychiatric symptoms associated with being undiagnosed, which may help clinicians be more aware of signs that could be indicative of early-stage or undetected dementia. METHODS: This cross-sectional study uses data from waves 1 and 2 (two years apart) of the Cognitive Function and Ageing Studies Wales (CFAS Wales). CFAS Wales participants were included who had a study assessment of dementia, as determined by the Automated Geriatric Examination for Computer Assisted Taxonomy (AGECAT) algorithm and by expert assessment, and who had had their primary care records checked for a clinical diagnosis of dementia. We identified 19 people with a diagnosis of dementia and 105 people living with undiagnosed dementia, and explored demographic characteristics and the presence or absence of a range of neuropsychiatric symptoms in the undiagnosed population using logistic regression. RESULTS: Findings suggest that people living with dementia who have better cognition, have more years of education, or live in more deprived areas are less likely to have a diagnosis. In terms of neuropsychiatric symptoms, depression and sleep problems were associated with being undiagnosed. Apathy was common across all people living with dementia, but those with a diagnosis were more likely to have severe apathy. CONCLUSIONS: This study has clinical practice implications as the findings may help clinicians be more aware of characteristics and symptoms of people who are undiagnosed or who are at greater risk of remaining undiagnosed, enabling them to be more vigilant in picking up signs of dementia at an earlier stage.

Associations between unmet needs for daytime activities and company and scores on the Neuropsychiatric Inventory-Questionnaire in people with dementia: a longitudinal study.

OBJECTIVES: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. METHODS: We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates. RESULTS: Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p < 0.001), 0.76 (p < 0.001) and 0.78 (p = 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.39 points, p = 0.007) and at six months follow-up (mean 0.31 points, p = 0.006). Unmet needs for company were associated with more affective symptoms at baseline, six and twelve months, mean 0.44 (p = 0.033), 0.67 (p < 0.001) and 0.91 (p < 0.001) points higher score respectively, and with more psychotic symptoms at baseline (mean 0.40 points, p = 0.005) and at six months (mean 0.35 points, p = 0.002) follow-up. CONCLUSION: Interventions to reduce unmet needs for daytime activities and company could reduce affective and psychotic symptoms in people with dementia.

Reflections on a personalized cognitive rehabilitation intervention: Experiences of people living with dementia and their carers participating in the GREAT trial.

Cognitive rehabilitation for people living with early-stage dementia improves functional ability in areas targeted in the therapy, but little is known about how participants experience this intervention. This qualitative paper investigates participants' views about a cognitive rehabilitation intervention in a randomized controlled trial (the GREAT trial) and aims to help explain and interpret the findings and to inform further intervention development. Using in-depth thematic analysis, 43 semi-structured interviews (35 individual and 8 dyadic) were conducted with 25 people living with dementia and 26 family carers from three sites. The person-centred, individualized approach was valued. Some participants' views about dementia were questioned as a consequence of taking part in the therapy; they considered the effectiveness of the intervention in the context of the progressive nature of the condition. Certain participants continued to be doubtful, focussing on the inevitability of decline, rather than the possibility of reablement. Such views may have influenced engagement. The therapeutic relationship played a vital role as it was how personalized care was provided and participants' views had changed positively. Therapists engendered greater confidence and reduced anxiety and social isolation. Positive responses support personalized rehabilitative care to address the specific needs of people living with dementia.

Trajectories of relationship quality in dementia: a longitudinal study in eight European countries.

OBJECTIVES: Relationship quality (RQ) between a person with dementia and a family carer may influence their health and quality of life. However, evidence regarding its course and influencing factors is limited. We aimed to explore RQ trajectories in dementia, and identify predictors of change. METHODS: We analysed longitudinal data from a cohort of 350 community-dwelling people with dementia and their informal carers, participating in the Actifcare study in eight European countries. The Positive Affect Index, rated separately by both people with dementia and their carers, assessed RQ. Other measures included the Neuropsychiatric Inventory Questionnaire (regarding persons with dementia), and the Relative Stress Scale, Sense of Coherence Scale and Lubben Social Network Scale (for carers). Trajectories and influencing factors were explored applying a latent growth model (LGM). RESULTS: RQ in the group of carers declined over 1 year, but RQ scores for the persons with dementia did not change. Higher stress in carers negatively influenced their baseline RQ ratings. Carer sense of coherence and being a spouse were associated with more positive baseline RQ carer assessments. Higher levels of neuropsychiatric symptoms were linked to decline in carers' RQ, whereas social support was associated with more positive RQ trajectories. CONCLUSION: This study provides a valuable insight into the course of RQ. LGM proved useful to explore the factors that influence RQ trajectories and variability within- and between-persons. Our findings emphasise the importance of carer-perceived social support and sense of coherence, and of reducing neuropsychiatric symptoms, in maintaining a good RQ.

A longitudinal exploration of mental health resilience, cognitive impairment and loneliness.

OBJECTIVE: There is a growing interest in how people living with dementia may achieve good outcomes and be resilient despite their health challenges. Understanding what might be important for resilience in this population is largely untested theory. METHODS: The analysis draws a subsample with cognitive impairment (N = 579) from two waves of the Cognitive Function and Ageing Studies Wales study, a nationally representative study of community-dwelling people aged 65+ in Wales. We constructed a measure of mental health resilience (MHR) defined as no depression, no anxiety and high well-being. Drawing on a resilience framework, we tested univariate and cumulative effects models of the factors that enable MHR, and then examined whether MHR is important for reducing loneliness over time. RESULTS: Across both waves of data 22% (n = 121) met the criteria for MHR. The cumulative effects model found the odds of MHR were greater for male gender, higher self-esteem, greater social resources and no subjective memory complaints. Controlling for these significant predictors, MHR significantly predicted lower total and sub-scale scores for loneliness at wave 2. Sensitivity analysis shows these effects held at lower levels of cognitive function when the Mini-Mental State Examination score was <25, but not at <23. CONCLUSIONS: This paper addresses a gap in research regarding the conceptualisation and measurement of resilience when facing cognitive impairment. Understanding what aspects of a person's life might enable good mental health despite cognitive impairment-to be resilient-could inform effective strategies for friends and families, along with health, and social policy and practice.

A validation study of the CarerQol instrument in informal caregivers of people with dementia from eight European countries.

PURPOSE: Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing informal care, in a multi-country sample of caregivers for people with dementia. METHODS: Cross-sectional data from a sample of 451 respondents in eight European countries, collected by the Actifcare project, were evaluated. Convergent validity was analysed with Spearman's correlation coefficients and multivariate correlations between the CarerQol-7D utility score and dimension scores, and other similar quality of life measures such as CarerQol-VAS, ICECAP-O, and EQ-5D. Clinical validity was evaluated by bivariate and multivariate analyses of the degree to which the CarerQol instrument can differentiate between characteristics of caregivers, care receivers and caregiving situation. Country dummies were added to test CarerQol score differences between countries. RESULTS: The mean CarerQol utility score was 77.6 and varied across countries from 74.3 (Italy) to 82.3 (Norway). The scores showed moderate to strong positive correlations with the CarerQol-VAS, ICECAP-O, and EQ-5D health problems score of the caregiver. Multivariate regression analysis showed that various characteristics of the caregiver, care receiver and caregiving situation were associated with caregiver outcomes, but there was no evidence of a country-level effect. CONCLUSION: This study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia.

Bridging the divide between biomedical and psychosocial approaches in dementia research: the 2019 INTERDEM manifesto.

OBJECTIVE: To provide a new perspective on integrated biomedical and psychosocial dementia research. BACKGROUND: Dementia is being recognized as a multifactorial syndrome, but there is little interaction between biomedical and psychosocial approaches. A way to improve scientific knowledge is to seek better understanding of the mechanisms underlying the interaction between biomedical and psychosocial paradigms. One rationale for integrating biomedical and psychosocial research is the discordance between neuropathology and cognitive functioning. The concept of social health might bridge the two paradigms. It relates to how social resources influence the dynamic balance between capacities and limitations. HYPOTHESES: Social health can act as the driver for accessing cognitive reserve, in people with dementia through active facilitation and utilization of social and environmental resources. Thereby we link lifestyle social and opportunities to the brain reserve hypothesis. MANIFESTO: We provide a Manifesto on how to significantly move forward the dementia research agenda.

'Just because the mind is confused it doesn't mean the spirit is confused': Exploring the role of Anglican clergy in ministry to persons with dementia.

OBJECTIVES: Churches and faith groups have an important role to play in the development of dementia-friendly communities; their support of spirituality of people with dementia and their care-givers adds an important dimension, interwoven with concepts of personhood and identity. Priests have a central role here, but little is known of their experiences of ministering to people with dementia and their families, of the challenges they may encounter, or of their perspective on dementia. METHOD: Using a collective case-study approach, 10 Church in Wales priests took part in an in-depth qualitative interview regarding their ministry with people with dementia. Initial thematic analysis was used as a basis for an in-depth analysis of the positions adopted by clergy in relation to dementia and those experiencing it, as well as to their roles in the wider church. RESULTS: Clergy described discovering ways of working with people with dementia, learning 'on the job', and, for example, finding familiar symbols and music helpful. They found themselves being an intermediary, between people with dementia and God, but also within families and other care settings, such as care homes. Promoting spirituality within personhood was a fundamental aspect of their role, but was also reflected both in fears of dementia and in identifying redeeming aspects of dementia. They described an absence of preparedness, training and peer support for this ministry. The emerging model of Dementia ministry reflected the dynamic interplay of positions adopted by clergy, with an interface between the professional and the personal at its centre. CONCLUSION: The study indicates the need for increased support for clergy in taking forward dementia friendly churches and highlights their role in ensuring that the spiritual life of people with dementia can be maintained and supported.

Obtaining EQ-5D-5L utilities from the disease specific quality of life Alzheimer's disease scale: development and results from a mapping study.

PURPOSE: The Quality of Life Alzheimer's Disease Scale (QoL-AD) is commonly used to assess disease specific health-related quality of life (HRQoL) as rated by patients and their carers. For cost-effectiveness analyses, utilities based on the EQ-5D are often required. We report a new mapping algorithm to obtain EQ-5D indices when only QoL-AD data are available. METHODS: Different statistical models to estimate utility directly, or responses to individual EQ-5D questions (response mapping) from QoL-AD, were trialled for patient-rated and proxy-rated questionnaires. Model performance was assessed by root mean square error and mean absolute error. RESULTS: The response model using multinomial regression including age and sex, performed best in both the estimation dataset and an independent dataset. CONCLUSIONS: The recommended mapping algorithm allows researchers for the first time to estimate EQ-5D values from QoL-AD data, enabling cost-utility analyses using datasets where the QoL-AD but no utility measures were collected.

Development of best practice recommendations to enhance access to and use of formal community care services for people with dementia in Europe: a Delphi process conducted by the Actifcare project.

OBJECTIVES: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. METHOD: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. RESULTS: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access. Coordination and flexibility in setting and type of services were among the Recommendations to enhance use. Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. CONCLUSION: The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers.

Who benefits most from resilience-building groups for 'at-risk' older people? a pilot service-evaluation.

OBJECTIVES: Resilience-building interventions have not yet targeted older adults, despite the importance of well-being for maintaining independence and health. The 'My Generation' programme aims to build resilience through greater access to social networks, well-being activities, and psycho-educational support; this paper examines service evaluation data from its pilot implementation to identify factors leading to positive outcomes. METHOD: The 'My Generation' programme comprises eight weekly 2-hour group sessions; each session includes both psychoeducation and a well-being activity. Participants were invited to complete questionnaires at the start and end of the course, and 12 weeks later. These included measures of well-being, loneliness, social connections and self-efficacy. RESULTS: Baseline assessments were completed by 239 older people (average age 71, range 50-97), attending 38 courses in four centres. Most were female (80%), 40% were widowed, 25% divorced/separated and 64% lived alone. Demographics did not differ between those completing post-intervention assessments (N = 137) and those who did not. Compared with normative data, participants had significantly lower well-being and greater feelings of loneliness than age-peers. Significant improvements in well-being, self-efficacy, social connections and one measure of loneliness were evident at post-intervention and follow-up assessments. Improvement in well-being at post-intervention was greater in those who were divorced/separated and who were not carers, and at follow-up in females and those living alone. CONCLUSION: The 'My Generation' package appeared effective in improving well-being, self-efficacy, social connections and aspects of loneliness in at-risk older people. More research is needed to identify the intervention's key components and possible between-centre differences in outcomes.

The feasibility of a Comprehensive Resilience-building psychosocial Intervention (CREST) for people with dementia in the community: protocol for a non-randomised feasibility study.

BACKGROUND: A dementia diagnosis can prevent people from participating in society, leading to a further decline in cognitive, social and physical health. However, it may be possible for people with dementia to continue to live meaningful lives and continue to participate actively in society if a supportive psychosocial environment exists. Resilience theory, which focuses on strengthening personal attributes and external assets in the face of serious challenges, may provide a scaffold on which an inclusive multifaceted psychosocial supportive environment can be built. This protocol paper describes a study to determine the feasibility of conducting a multifaceted complex resilience building psychosocial intervention for people with dementia and their caregivers living in the community. METHODS: This is a non-randomised feasibility study. Ten participants with dementia and their primary caregivers living in the community will be recruited and receive the CREST intervention. The intervention provides (a) a 7-week cognitive stimulation programme followed by an 8-week physical exercise programme for people with dementia and (b) a 6-week educational programme for caregivers. Members of the wider community will be invited to a dementia awareness programme and GP practices to a dementia training workshop. Trained professionals will deliver all intervention components. Outcomes will assess the feasibility and acceptability of all study processes. The feasibility and acceptability of a range of outcomes to be collected in a future definitive trial, including economic measurements, will also be explored. Finally, social marketing will be used to map a route toward stigma change in dementia for use in a subsequent trial. Quantitative feasibility outcome assessments will be completed at baseline and after completion of the 15-week intervention while qualitative data will be collected at recruitment, baseline, during and post-intervention delivery. CONCLUSION: This feasibility study will provide evidence regarding the feasibility and acceptability of a comprehensive multifaceted psychosocial intervention programme for people with dementia and their caregivers (CREST). The results will be used to inform the development and implementation of a subsequent RCT, should the findings support feasibility. TRIAL REGISTRATION: ISRCTN25294519 Retrospectively registered 07.10.2019.

Profiles of Met and Unmet Needs in People with Dementia According to Caregivers' Perspective: Results from a European Multicenter Study.

OBJECTIVES: This exploratory study aimed at investigating profiles of care needs in people with mild to moderate dementia and examined variables associated with these profiles. DESIGN: A longitudinal international cohort study. SETTING AND PARTICIPANTS: The baseline data of 447 community-dwelling dyads of people with dementia and their caregivers from the Access to Timely Formal Care (Actifcare) Study were included for analysis. METHODS: A latent class analysis was applied to identify profiles of needs, measured with the Camberwell Assessment of Need for the Elderly as rated by the caregiver. We examined sociodemographic (eg, relative stress scale) and clinical characteristics (eg, neuropsychiatric inventory) associated with these profiles. RESULTS: Four distinct need profiles were identified through latent class analysis. These comprised a "no need" profile (41% of the sample), a "met psychological needs" profile (25%), a "met social needs" profile (19%), and an "unmet social needs" profile (15%). A larger impact of caregiving on the caregiver's life as indicated by a higher relative stress scale score was associated with the "unmet social needs" profile. CONCLUSIONS AND IMPLICATIONS: In this large European sample, there was a subgroup of persons with dementia with high "unmet social needs" whose caregivers simultaneously perceived high stress in their caregiving tasks. Identification of these profiles may help provision of appropriate support for these people.

Measuring the well-being of people with dementia: a conceptual scoping review.

BACKGROUND: Enabling people with dementia to 'live well' is a policy and research priority in many countries. However, instruments for measuring outcomes of psychosocial interventions designed to promote well-being in dementia are often derived from a symptom-focused, loss/deficit approach, or from broad quality of life concepts. A pan-European dementia working group called for research on the development of an alternative asset/strengths-based conceptual framework of well-being in dementia. This paper takes forward this recommendation by developing such a framework and using this to map relevant self-report outcome measures. METHODS: Three scoping reviews of published studies were conducted iteratively. First, we examined the literature on lived experiences of well-being and quality of life in people with dementia and then the wider dementia literature for application of well-being constructs. The synthesised findings generated conceptual domains of well-being in people with dementia. Corresponding self-report instruments used in dementia research were scoped, categorised within the conceptual framework and their potential value in measuring outcomes for people with dementia was examined. FINDINGS: Six conceptual domains for the measurement of well-being and 35 self-report instruments that have been used with people with dementia were identified. Six instruments were developed specifically for people with dementia, five were derived from the gerontological literature and 24 from the well-being literature. Fifteen instruments and one sub-scale have been examined for psychometric properties amongst people with dementia. To date, 20 have been used as outcome measures, with seven measuring change over time. A number of identified instruments utilise traditional retrospective Likert-scaling response formats, limiting their potential for use with some groups of people with dementia. CONCLUSION: An assets/strengths-based framework is presented, outlining structural domains for selecting self-report measures of well-being in people with dementia. It provides a foundation for enhancing research into processes and outcomes of psychosocial interventions, including instrument development, more precise matching of intervention aims with outcome measurement, and newer technology-based 'in-the-moment' measurement.

How Can the Arts Influence the Attitudes of Dementia Caregivers? A Mixed-Methods Longitudinal Investigation.

BACKGROUND AND OBJECTIVES: Arts activities can improve social connectedness and foster reciprocity between people living with dementia and their caregivers. The extent to which the arts can help shape attitudes towards dementia remains unclear. This paper explores the impact of a 12-week visual arts program "Dementia and Imagination" on the attitudes of family and professional caregivers through a mixed-methods longitudinal investigation, underpinned by a conceptual framework of the arts in dementia care. RESEARCH DESIGN AND METHODS: One hundred and forty-six family and professional caregivers were recruited across three settings in England and Wales (residential care homes, a county hospital, and community venues). Quantitative and qualitative data on caregivers' attitudes and perceptions of the impact of the arts program were collected through interviews at three time points. RESULTS: Thematic analysis identified four themes shared across the caregivers: (1) Recognizing capabilities, (2) Social connectedness, (3) Improvements to well-being, and (4) Equality and personhood. Two further themes were distinct to family caregivers: (5) Duration of the effects of the art program, and (6) Enriched perspective. The final theme Inspiring professional development was distinct to the professional caregivers. The quantitative analysis found no effect for caregivers' attitude change over time. Family caregivers scored significantly lower than professional caregivers at each of the three time points. DISCUSSION AND IMPLICATIONS: Art programs have the potential to make visible the capabilities of the people living with dementia, enabling caregivers to see the person behind the condition. This study highlights practice implications for future implementation, such as the role of the arts in dementia care education.

A Tablet App Supporting Self-Management for People With Dementia: Explorative Study of Adoption and Use Patterns.

BACKGROUND: Assistive technology (AT) is rapidly emerging within dementia care and support. One area of AT application is support of people with dementia in compensating for cognitive symptoms and thereby promoting their self-management. There is, however, little evidence for the applicability, usability, and effectiveness of AT for people with dementia, and there is a need to identify factors that can promote adoption. OBJECTIVE: This study aimed to (1) evaluate the applicability and usability of an app, tailor-made for people with dementia; (2) explore factors affecting adoption; (3) explore the possible influence of caregiver involvement; and (4) contribute to process evaluation of the intervention. METHODS: The ReACT (Rehabilitation in Alzheimer's disease using Cognitive support Technology) app was designed as a holistic solution to support memory and structure in daily living. Persons with dementia had access to a personal user account, and family caregivers were given a parallel login. Written and Web-based materials were provided to support self-applied implementation. A mixed methods design was applied to explore adoption and use patterns, including background and disease-related data, qualitative data from a survey, and log data. Adoption was defined as the use of the app over a period of ≥90 days. RESULTS: Data from 112 participants and 98 caregivers were included. Shorter time from diagnosis (U=595; P=.046; r=0.19) and caregiver activating the app (P=.02) had a significant impact on the participant adoption status. Logistic regression analysis showed that if caregivers had activated the app, the participant was five times more likely to become an adopter (odds ratio 5.1, 95% CI 1.29-19.99; P=.02). However, the overall predictive power was low, and there was a wide variation in background and disease-related characteristics among adopters. The level of experience and skills in tablet use were not significantly different between adopters and nonadopters. Adopters generally rated the app high on usefulness, satisfaction, and ease of use (rated on the USEdem questionnaire). Their scores were significantly higher compared with nonadopters (U=5.5; P=.02; r=0.64). Analysis of use patterns showed that all functionalities of the app were used among adopters. CONCLUSIONS: For participants who became adopters, the ReACT app and the methods for self-applied implementation were applicable. However, the results were also in accordance with the well-known challenges of nonadoption and nonadherence to digital health interventions. The study provided insight into the importance of timely introduction and caregiver support for adoption of AT among people with dementia. It also underlined the high complexity of personal and contextual factors that influence adoption. These complex factors need to be considered when designing and implementing AT for people with dementia.