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IntroductionMost people living with dementia want to remain living in their own homes, and are supported to do so by family carers and homecare workers. There are concerns that homecare is often unable to meet the needs of this client group, with limited evidence regarding effective interventions to improve it for people living with dementia. We have developed a training and support programme for homecare workers (NIDUS-Professional) to be delivered alongside support sessions for people living with dementia and their family carers (NIDUS-Family). We aim to assess (1) its acceptability among homecare workers and employing agencies, and (2) the feasibility of homecare workers, people living with dementia and their family carers completing the outcomes of intervention in a future randomised controlled trial.Methods and analysisThis is a cluster-randomised (2:1) single-blind, multisite feasibility trial. We aim to recruit 60-90 homecare workers, 30-60 clients living with dementia and their family carers through 6-9 English homecare agencies. In the intervention arm, homecare staff will be offered six group sessions on video call over three months, followed by monthly group sessions over the subsequent three-month period. Outcome measures will be collected at baseline and at six months.Ethics and disseminationThe study received ethical approval on 7 January 2020 from the Camden & King's Cross Research Ethics Committee. Study reference: 19/LO/1667. Findings will be disseminated through a peer-reviewed journal, conference presentation and blog to research and clinical audiences; we will attend forums to present findings to participating homecare agencies and their clients.Trial registration numberISRCTN15757555.

Introduction People from minoritised ethnic groups are diagnosed with dementia later in the disease. We explored pathways that may determine the timing of diagnoses in a UK ethnically diverse, urban area. Methods We conducted 61 semi-structured interviews: 10 community-dwelling older people from minoritised ethnic backgrounds with diagnosed and undiagnosed dementia (mean age = 72 years; males = 5/10), 30 family members (51; 10/30), 16 health or social care professionals (42; 3/15), 3 paid carers and 2 interpreters for people with dementia. We used reflexive thematic analysis and the Model of Pathways to Treatment to consider diagnostic delay. Findings We identified three themes: (1) Cultural identity and practices shape responses : gendered expectations that families relieve elders of household roles reduce awareness or concern when functioning declines; expectations that religious practices are maintained mean problems doing so triggers help-seeking. Second-generation family members often held insider and outsider identities, balancing traditional and Western perspectives. (2) Becoming like a tourist: daily experiences became unfamiliar for people developing dementia in an adopted country, sometimes engendering a need to reconnect with a home country. For professionals and interpreters, translating meanings faithfully, and balancing relatives' and clients' voices, were challenging. (3) Naming and conceptualising dementia : the term dementia was stigmatised, with cultural nuances in how it was understood; initial presentations often included physical symptoms with cognitive concerns. Conclusion Greater understanding of dilemmas faced by minoritised ethnic communities, closer collaboration with interpreters and workforce diversity could reduce time from symptom appraisal to diagnosis, and support culturally competent diagnostic assessments. [ABSTRACT FROM AUTHOR]

Introduction: Person‐centered goals capture individual priorities in personal contexts. Goal Attainment Scaling (GAS) has been used in drug trials involving people living with dementia (PLWD) but GAS has been characterized as difficult to incorporate into trials and clinical practice. We used GAS in a trial of New Interventions for Independence in Dementia Study (NIDUS)‐family, a manualized care and support intervention, as the primary outcome and to tailor the interventions to goals set. We aimed to assess the feasibility and content of baseline goal‐setting. Methods: We developed training for nonclinical facilitators to set individualized GAS goals remotely with PLWD and family carer dyads, or carers alone, in the intervention trial, during the COVID‐19 pandemic. A qualitative content analysis of the goals set explored participants' priorities and unmet needs, to consider how existing GAS goal domains might be extended in a psychosocial intervention trial context. Results: Eleven facilitators were successfully trained to set and score GAS goals. A total of 313/328 (95%) participants were able to collaboratively set three to five goals with the facilitators. Of these, 302 randomized participating dyads set 1043 (mean 3.5, range 3 to 5) goals. We deductively coded 719 (69%) goals into five existing GAS domains (mood, behavior, self‐care, cognition, and instrumental activities of daily living); 324 (31%) goals were inductively coded into four new domains: carer break, carer mood, carer behavior, and carer sleep. The most frequently set goals pertained to social support. There was little variation in types of goals set based on the context of who set them or level of pandemic restrictions in place. Discussion: It is feasible for people without clinical training to set GAS holistic goals for PLWD and family carers in the community. GAS has potential to facilitate personalization of care and support interventions, such as NIDUS‐family, and facilitate the roll out of more personalized care. Highlights: Goal Attainment Scaling (GAS) can capture meaningful priorities of people with dementia and their family carers.A psychosocial intervention RCT used GAS as the primary outcome measure and goals were set collaboratively by non‐clinically trained facilitators.The findings underscore the feasibility of using GAS as an outcome measure with this population.The content analysis findings unveiled the diversity in experiences and priorities of the study participants.GAS has the potential to support the implementation of more person‐centred approaches to dementia care. [ABSTRACT FROM AUTHOR]

Introduction In the first randomised controlled trial of a dementia training and support intervention in UK homecare agencies, we aimed to assess: acceptability of our co-designed, manualised training, delivered by non-clinical facilitators; outcome completion feasibility; and costs for a future trial. Methods This cluster-randomised (2:1) single-blind, feasibility trial involved English homecare agencies. Intervention arm agency staff were offered group videocall sessions: 6 over 3 months, then monthly for 3 months (NIDUS-professional). Family carers (henceforth carers) and clients with dementia (dyads) were offered six to eight complementary, individual intervention sessions (NIDUS-Family). We collected potential trial measures as secondary outcomes remotely at baseline and 6 months: HCW (homecare worker) Work-related Strain Inventory (WRSI), Sense of Competence (SoC); proxy-rated Quality of Life (QOL), Disability Assessment for Dementia scale (DAD), Neuropsychiatric Inventory (NPI) and Homecare Satisfaction (HCS). Results From December 2021 to September 2022, we met agency (4 intervention, 2 control) and HCWs (n  = 62) recruitment targets and recruited 16 carers and 16/60 planned clients. We met a priori progression criteria for adherence (≥4/6 sessions: 29/44 [65.9%,95% confidence interval (CI): 50.1,79.5]), HCW or carer proxy-outcome completion (15/16 (93.8% [69.8,99.8]) and proceeding with adaptation for HCWs outcome completion (46/63 (73.0% [CI: 60.3,83.4]). Delivery of NIDUS-Professional costs was £6,423 (£137 per eligible client). WRSI scores decreased and SoC increased at follow-up, with no significant between-group differences. For intervention arm proxy-rated outcomes, carer-rated QOL increased, HCW-rated was unchanged; carer and HCW-rated NPI decreased; DAD decreased (greater disability) and HCS was unchanged. Conclusion A pragmatic trial is warranted; we will consider using aggregated, agency-level client outcomes, including neuropsychiatric symptoms. [ABSTRACT FROM AUTHOR]

Background: Individualised goal-setting outcome measures can be a useful way of reflecting people living with dementia and family carers' differing priorities regarding quality-of-life domains in the highly heterogeneous symptomatology of the disease. Evaluating goal-setting measures is challenging, and there is limited evidence for their psychometric properties. Aim: (1) To describe what goal-setting outcomes have been used in this population; (2) To evaluate their validity, reliability, and feasibility in RCTs. Method: We systematically reviewed studies that utilised goal-setting outcome measures for people living dementia or their family carers. We adapted a risk of bias and quality rating system based on the COSMIN guidelines to evaluate the measurement properties of outcomes when used within RCTs. Results: Thirty studies meeting inclusion criteria used four different goal-setting outcome measures: Goal Attainment Scaling (GAS), Bangor Goal Setting Interview (BGSI), Canadian Occupational Performance Measure (COPM) and Individually Prioritized Problems Assessment (IPPA); other papers have reported study-specific goal-setting attainment systems. Only GAS has been used as an outcome over periods greater than 9 months (up to a year). Within RCTs there was moderate quality evidence for sufficient content validity and construct validity for GAS, COPM and the BGSI. Reliability was only assessed in one RCT (using BGSI); in which two raters reviewed interview transcripts to rate goals with excellent inter-rater reliability. Feasibility was reported as good across the measures with a low level of missing data. Conclusion: We found moderate quality evidence for good content and construct validity and feasibility of GAS, BGSI and COPM. While more evidence of reliability of these measures is needed, we recommend that future trials consider using individualised goal setting measures, to report the effect of interventions on outcomes that are most meaningful to people living with dementia and their families. [ABSTRACT FROM AUTHOR]

Background: Dementia is associated with a range of non‐cognitive features that can occur during the prodromal phase. Improved recognition of non‐cognitive presentations of dementia could reduce inequalities in dementia diagnosis, particularly if sociocultural factors influence rates of help‐seeking for cognitive symptoms. We aimed to investigate presentations to primary care in the years before dementia diagnosis in a deprived and ethnically diverse population with universal access to health care. Method: We conducted a nested case‐control study using electronic health care records on 1,016,277 individuals from primary care practices in East London, UK between 1990 and 2018. Individuals with a diagnosis of dementia were compared to controls without dementia. We ran a matched analysis (four controls matched to each person with dementia according to age and sex) using multivariable logistic regression to assess the associations between pre‐diagnostic presentations to primary care with subsequent diagnosis of dementia. We analysed three time periods (<2, 2‐5, 5‐10) before diagnosis. Result: We included 4,137 individuals and 15,754 controls in the matched analysis (51.8% White; 42.7% Black, South Asian and other ethnicities). Neuropsychiatric presentations including depression (odds ratio [OR] = 2.71; 95% CI: 2.33 to 3.16), anxiety (OR = 1.67; 95% CI: 1.46 to 1.92), initiation of antipsychotic medication (as a proxy for psychotic symptoms) (OR = 5.84; 95% CI: 4.80 to 7.11) and insomnia (OR = 1.69; 95% CI: 1.31 to 2.17) were more frequent in the years before dementia diagnosis. Associations were found for autonomic features including constipation (OR = 1.54; 95% CI: 1.39 to 1.71) and incontinence (OR = 2.63; 95% CI: 2.32 to 2.97) up to a decade, and hypotension (OR = 1.89; 95% CI: 1.35 to 2.63) up to five years before dementia diagnosis. Sensory features including hearing loss (OR = 1.36; 95% CI: 1.14 to 1.63), imbalance and dizziness were also associated with subsequent dementia diagnosis. Memory difficulty was more strongly associated with subsequent dementia diagnosis than any non‐cognitive presentation (OR = 51.00; 95% CI: 43.87 to 59.29). Conclusion: A range of non‐cognitive presentations are seen during the prodromal period of dementia in a diverse population. Improved recognition of these associations could increase access to dementia diagnosis, through improved recognition of potential presenting symptoms in people from different backgrounds. [ABSTRACT FROM AUTHOR]

Background: Alzheimer's disease (AD) is associated with a range of non‐cognitive symptoms that can be early or even presenting features. Better recognition of pre‐diagnostic symptoms of AD would support improved early detection and diagnosis. Method: To identify possible prodromal symptoms of AD, we systematically searched three electronic databases for prospective longitudinal studies to March 2023, that reported the risk of AD diagnosis associated with non‐cognitive symptoms. Meta‐analyses were performed to assess the associations between a commonly reported symptom and AD. We estimated pooled odds ratios (OR) using random‐effects model. Result: Thirty studies were included with the majority focused on neuropsychiatric symptoms. Quantitative analysis of fourteen studies showed depression to be associated with subsequent AD diagnosis (pooled OR = 1.80; 95% CI: 1.29 to 2.50; I2 = 95.8%) and individual reports of the association showed it to be stronger later in life and closer to AD diagnosis. In contrast with the literature, the evidence on the association between anxiety, sleep difficulties, personality changes and psychotic symptoms, and incident AD was inconsistent. We found evidence that autonomic symptoms including urinary dysfunction, constipation, fatigue, syncope and collapse might be pre‐diagnostic symptoms of AD recorded up to 10 years before receiving an AD diagnosis, and there was strong evidence of an association between hypotension and incident AD (pooled OR = 1.94; 95% CI: 1.88 to 2.01; I2 = 0.0%). We were also able find evidence for the association between weight loss and subsequent AD diagnosis within 10 years (pooled OR = 1.46; 95% CI: 1.22 to 1.74; I2 = 57.5%). Furthermore, the quantitative synthesis of the evidence on hearing loss (pooled OR = 1.47; 95% CI: 1.14 to 1.89; I2 = 87.6%) and spondylosis (pooled OR = 1.55; 95% CI: 1.34 to 1.80; I2 = 68.2%) showed both to be associated with AD diagnosis up to 10 years after identification of these sensory symptoms. Conclusion: Our findings suggest that improved recognition of early non‐cognitive presentations is key in facilitating access to timely diagnosis of AD, especially as the emergence of disease‐modifying therapies for AD increases the importance of early detection. [ABSTRACT FROM AUTHOR]

AbstractObjectivesMethodResultsConclusionTo explore the effectiveness of an adapted 14-week cognitive stimulation therapy (CST) protocol on psychoaffective symptoms and quality of life (QOL) for people living with mild dementia.The sample for this pragmatic study were people with dementia who underwent CST between May 2016 and September 2022 during routine healthcare. Measures of participants’ psychoaffective symptoms and QOL were administered before CST (‘baseline’) and following CST (‘post-intervention’). The Hospital Anxiety and Depression Scale (HADS) was used to measure anxiety symptoms, depression symptoms, and their sum score (referred to as HADS-total). The Quality of Life-Alzheimer’s Disease (QOL-AD) scale was used to measure participants’ quality of life (both patient and carer ratings were available). Change in these outcomes was assessed using linear mixed models.Two hundred and twenty-five participants attended ≥1 session of adapted CST (84% attended at least 9/14 sessions, considered ‘high’ adherence). The mean change [95% confidence interval] in HADS-total scores indicated improvement (−0.9; [−1.9, −0.0]). Mean scores on the other outcomes showed neither improvement nor worsening.Overall, this pragmatic study shows that an adapted 14-week face-to-face CST protocol is effective in improving mental health in people with mild dementia and has the potential to be widely implemented within routine healthcare. [ABSTRACT FROM AUTHOR]

Introduction: Person-centered goals capture individual priorities in personal contexts. Goal Attainment Scaling (GAS) has been used in drug trials involving people living with dementia (PLWD) but GAS has been characterized as difficult to incorporate into trials and clinical practice. We used GAS in a trial of New Interventions for Independence in Dementia Study (NIDUS)-family, a manualized care and support intervention, as the primary outcome and to tailor the interventions to goals set. We aimed to assess the feasibility and content of baseline goal-setting., Methods: We developed training for nonclinical facilitators to set individualized GAS goals remotely with PLWD and family carer dyads, or carers alone, in the intervention trial, during the COVID-19 pandemic. A qualitative content analysis of the goals set explored participants' priorities and unmet needs, to consider how existing GAS goal domains might be extended in a psychosocial intervention trial context., Results: Eleven facilitators were successfully trained to set and score GAS goals. A total of 313/328 (95%) participants were able to collaboratively set three to five goals with the facilitators. Of these, 302 randomized participating dyads set 1043 (mean 3.5, range 3 to 5) goals. We deductively coded 719 (69%) goals into five existing GAS domains (mood, behavior, self-care, cognition, and instrumental activities of daily living); 324 (31%) goals were inductively coded into four new domains: carer break, carer mood, carer behavior, and carer sleep. The most frequently set goals pertained to social support. There was little variation in types of goals set based on the context of who set them or level of pandemic restrictions in place., Discussion: It is feasible for people without clinical training to set GAS holistic goals for PLWD and family carers in the community. GAS has potential to facilitate personalization of care and support interventions, such as NIDUS-family, and facilitate the roll out of more personalized care., Highlights: Goal Attainment Scaling (GAS) can capture meaningful priorities of people with dementia and their family carers.A psychosocial intervention RCT used GAS as the primary outcome measure and goals were set collaboratively by non-clinically trained facilitators.The findings underscore the feasibility of using GAS as an outcome measure with this population.The content analysis findings unveiled the diversity in experiences and priorities of the study participants.GAS has the potential to support the implementation of more person-centred approaches to dementia care., Competing Interests: K.R. is cofounder of Ardea Outcomes (DGI Clinical until 2021), which in the past 3 years has had contracts with pharma and device manufacturers (Danone, Hollister, INmune, Novartis, Takeda) on individualized outcome measurement. In 2020, on behalf of Ardea Outcomes, K.R. attended an advisory board meeting with Nutricia on dementia. The other authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. All author disclosures are available in the supporting information., (© 2024 The Author(s). Alzheimer's & Dementia: Translational Research & Clinical Interventions published by Wiley Periodicals LLC on behalf of Alzheimer's Association.)