Moïse Roche

Timely dementia diagnosis is a global priority, reflected in most national and regional policies and plans. Nevertheless, there are currently no robust estimates of the average time to diagnosis (TTD) and factors influencing diagnostic intervals. This article presents the first systematic review of quantitative studies on TTD in dementia and the factors associated with its duration. We systematically searched EMBASE, Psych INFO, MEDLINE, and CINAHL databases for relevant studies published up to December 2024. We defined TTD as the interval between symptom onset (rated by family carers or patients using interviews or medical records) to final diagnosis. Risk of bias was assessed using the Reporting studies on time to diagnosis tool. We included 13 studies reporting data on 30,257 participants, with age at onset ranging between 54 and 93 years. Meta‐analysis pooling 10 studies showed that average mean TTD across all types of dementia was 3.5 years [confidence interval (CI): 2.7–4.3; moderate quality evidence]. Analyses of six studies showed that TTD in young onset dementia was 4.1 years (CI: 3.4–4.9; moderate quality evidence). Although the factors influencing TTD were inconsistent, a younger age at onset and having frontotemporal dementia were consistently associated with a longer interval to diagnosis. TTD in dementia remains long, and specific healthcare strategies are urgently needed to improve it. Increasing the evidence base and developing interventions to reduce TTD should be a future research priority. Specialist services are likely to be key in improving TTD in young‐onset dementia.

People from Black backgrounds are underrepresented in Parkinson's research, despite evidence of higher disease burden and risk of dementia. Greater understanding of the factors influencing participation in Parkinson's research can improve recruitment, quality and generalizability of both observational research studies and clinical trials. Through focus groups with 17 people with Parkinson's and carers from Black communities, we identified distrust in the research process, stigma of Parkinson's diagnosis, and accessibility as key barriers to research participation. Participants made recommendations including: raising awareness of Parkinson's and related research, involving community ambassadors, improving communication throughout the research process, and providing practical support.

Introduction: The need to improve the quality of life (QoL) and well‐being of people living with and beyond cancer is well recognised. SURECAN (SUrvivors' Rehabilitation Evaluation after CANcer) is a multiphase study developing and evaluating a psychological intervention based on acceptance and commitment therapy (ACT) for people who have completed hospital‐based treatment for cancer but have low QoL. We describe the process by which we iteratively developed and refined ACT+, an intervention in which ACT is integrated with options to support exercise and work.Methods: ACT+ development was guided by the theory of ACT while Normalisation Process Theory (NPT) was used as a sensitising tool at all stages. Evidence from several strands of research comprising a qualitative meta‐synthesis, a qualitative study with stakeholders and pre‐pilot testing was brought together to refine ACT+. Insights from patient and public involvement (PPI) consultations supported the development and refinement of ACT+ resources throughout.Results: The qualitative study with stakeholders shed light on the ‘real world’ contexts in which the ACT+ intervention would be offered and accessed, as well as the appeal of ACT+ as a therapy for people living with and beyond cancer. People who had treatment for cancer (n = 31) and healthcare professionals (n = 16) provided overall support for the intervention. Subsequent pre‐pilot testing of the intervention and qualitative work with cancer patients (n = 6) and therapists (n = 7) led to further refinements. Evidence collected from all strands of research and PPI was integrated in an iterative way to produce an intervention that was acceptable to all.Conclusion: We adopted an iterative and evidence‐based approach to the development of the ACT+ intervention, which was acceptable to patients and healthcare professionals. Future work will examine the effectiveness of ACT+.Patient and Public Engagement: This intervention was developed and refined with substantial involvement from the study's patient and public involvement group and others accessed via community/patient groups to discuss and gain feedback on patient‐facing materials. For example, the ACT+ participant handbook underwent four consultation rounds with patient representatives, including a consultation specifically focused on its cultural acceptability. Therefore, emerging insights from PPI were also used to optimise ACT+ components and delivery. Their input was integrated throughout all three strands of the research.

Introduction: People from minoritized ethnic groups are diagnosed with dementia later in the disease. We explored pathways that may determine the timing of diagnoses in an ethnically diverse, urban area. Methods: We conducted 61 semi-structured interviews: 10 community-dwelling older people from minoritized 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) three paid carers and two 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 minoritized ethnic communities, closer collaboration with interpreters and workforce diversity could reduce time from symptom appraisal to diagnosis, and support culturally competent diagnostic assessments.

Objectives: We culturally adapted STrAtegies for RelaTives (START), a clinically and cost‐effective intervention for dementia family carers, for Black and South Asian families. It had previously been delivered to family carers around the time of diagnosis, when most people with dementia had very mild, mild or moderate dementia.Methods: We interviewed a maximum variation sample of family carers (phase one; n = 15 South Asian; n = 11 Black) about what aspect of START, required cultural adaptation, then analysed it thematically using the Cultural Treatment Adaptation Framework then adapted it in English and into Urdu. Facilitators then delivered START individually to carers (phase two; n = 13 South Asian; n = 8 Black). We assessed acceptability and feasibility through the number of sessions attended, score for fidelity to the intervention and interviewing family carers about their experiences. We used the Hospital Anxiety and Depression Scale. to examine whether immediate changes in family carers' mental health were in line with previous studies.Results: In phase one we made adaptations to peripheral elements of START, clarifying language, increasing illustrative vignettes numbers, emphasising privacy and the facilitator's cultural competence and making images ethnically diverse. In phase two 21 family carers consented to receive the adapted intervention; 12 completed ≥5/8 sessions; four completed fewer sessions and five never started. Baseline HADS score (n = 21) was 14.4 (SD = 9.8) but for those who we were able to follow up was 12.3 (SD 8.1) and immediately post‐intervention was 11.3 (n = 10; SD = 6.1). Family carers were positive about the adapted START and continued to use elements after the intervention.Conclusions: Culturally adapted START was acceptable and feasible in South Asian and Black UK‐based family carers and changes in mental health were in line with those in the original clinical trial. Our study shows that culturally inclusive START was also acceptable. Changes made in adaptations were relevant to all populations. We now use the adapted version for all family carers irrespective of ethnicity.

Objectives: Many people live with an awareness of mild cognitive changes that increase their dementia risk. Previous authors describe the uncertainties of this liminal state, between cognitive health and dementia, where being “at risk” can itself be an illness. We ask how services respond to people with memory concerns currently, and how a future, effective and inclusive dementia prevention intervention might be structured for people with memory concerns.Methods/Design: We conducted qualitative interviews with 18 people aged 60+ years with subjective or objective memory problems, six family members, 10 health and social care professionals and 11 third sector workers. Interviews were audio‐recorded, transcribed and analysed using an inductive thematic approach.Results: Three main themes were identified: (1) acknowledging the liminal state, compounded by current, discordant health service responses: medicalising memory concerns yet situating responsibilities for their management with patients and families; (2) enabling change in challenging contexts of physical and cognitive frailty and social disengagement and (3) building on existing values, cultures and routines.Conclusions: Effective dementia prevention must empower individuals to make lifestyle changes within challenging contexts. Programmes must be evidence based yet sufficiently flexible to allow new activities to be fitted into people's current lives; and mindful of the risks of pathologising memory concerns. Most current memory services are neither commissioned, financially or clinically resourced to support people with memory concerns without dementia. Effective, large scale dementia prevention will require a broad societal response.

Objective: We evaluated the feasibility and acceptability of a tailored evidence‐based intervention, consisting of a leaflet and a letter, to encourage timely help‐seeking for dementia in Black elders.Methods: Participating GP surgeries were randomised to send either the intervention or a control leaflet about ageing well to Black patients aged ≥50 years old without known dementia. We interviewed patients 2 weeks later about the intervention's acceptability using closed and open‐ended questions, and they completed a Theory‐of‐Planned‐behaviour questionnaire about what they would do if they developed memory problems, which they also completed 4 months later.Results: Five of 26 surgeries approached agreed to invite patients. Sixty‐five patients responded, of whom 61 (93.8%) agreed to participate. At 2 weeks, we consented and interviewed 47/61 (77%), of whom 24 received the intervention, and at 4 months we followed up 43/47 (91.5%). At 2 weeks, 44/47 (93.6%) found either intervention acceptable to receive by post, including 23/24 of the intervention. Nineteen of 24 (79.2%) reported reading the intervention leaflet compared with 13/23 (56.5%) controls. The intervention leaflet made 16/24 (66.7%) think about visiting their doctor for memory problems and led 4 to help‐seeking behaviour. We calculated that 191 patients and 24 surgeries are required for an efficacy trial.Conclusions: Given the intervention is acceptable, inexpensive, and unlikely to cause harm, we judge it appropriate to disseminate it without a full‐scale trial. Recruitment attainment, retention, and projected sample size calculation indicated feasibility for a larger trial.

We aimed to identify and explore the barriers to help-seeking for memory problems, specifically within UK Black African and Caribbean communities. We purposively recruited participants from community groups and subsequent snowball sampling, to achieve a maximum variation sample and employed thematic analysis. Our qualitative semi-structured interviews used a vignette portraying a person with symptoms of dementia, and we asked what they or their family should do. We stopped recruiting when no new themes were arising. We recruited 50 people from a range of age groups, country of origin, time in the UK, religion and socio-economic background. Some of the barriers to presentation with dementia have been reported before, but others were specific to this group and newly identified. Many people recognised forgetfulness but neither that it could be indicative of dementia, nor the concept of dementia as applying to them. Dementia was viewed as a white person’s illness. Participants felt there was little point in consulting a doctor for forgetfulness. Many thought that seeing a GP was only for severe problems. Some said that their culture was secretive and highly valued privacy of personal affairs and therefore did not want to discuss what they regarded as a private and stigmatising problem with a GP. Participants did not appreciate their GP could refer to memory services who have more time and expertise. They were concerned about harm from medication and compulsory institutionalisation. Care should be from the family. Any intervention should emphasise the legitimacy of seeing a doctor early for memory concerns, that dementia is a physical illness which also occurs in the Black community, that help and time are available from memory services whose role is to prolong independence and support families in caring.