Living well with dementia: An exploratory matched analysis of minority ethnic and white people with dementia and carers participating in the IDEAL programme

Objectives: The increasing heterogeneity of the population of older people is reflected in an increasing number of people with dementia and carers drawn from minority ethnic groups. Data from the IDEAL study are used to compare indices of ‘living well’ among people with dementia and carers from ethnic minority groups with matched white peers. Methods: We used an exploratory cross-sectional case-control design to compare ‘living well’ for people with dementia and carers from minority ethnic and white groups. Measures for both groups were quality of life, life satisfaction, wellbeing, loneliness, and social isolation and, for carers, stress, relationship quality, role captivity and caring competence. Results: The sample of people with dementia consisted of 20 minority ethnic and 60 white participants and for carers 15 and 45 respectively. People with dementia from minority ethnic groups had poorer quality of life (−4.74, 95% CI: −7.98 to −1.50) and higher loneliness (1.72, 95% CI: 0.78–2.66) whilst minority ethnic carers had higher stress (8.17, 95% CI: 1.72–14.63) and role captivity (2.00, 95% CI: 0.43–3.57) and lower relationship quality (−9.86, 95% CI: −14.24 to −5.48) than their white peers. Conclusion: Our exploratory study suggests that people with dementia from minority ethnic groups experience lower quality of life and carers experience higher stress and role captivity and lower relationship quality than their white peers. Confirmatory research with larger samples is required to facilitate analysis of the experiences of specific minority ethnic groups and examine the factors contributing to these disadvantages

Negotiating the caring role and carer identity over time: ‘living well’ and the longitudinal narratives of family members of people with dementia from the IDEAL cohort

Longitudinal studies can provide insights into how family members negotiate the caring role and carer identity over time. Within longitudinal, qualitative interviews on ‘living well’ with dementia from the IDEAL cohort study, the aim of the analyses was to identify the shifting, embedded narratives of family members of people with dementia as they negotiated the caring role and carer identity over time. 20 semi-structured, qualitative interviews were conducted with family members of people with dementia, 14 repeated one year later, and analysed using cross-sectional and longitudinal thematic and structural narrative analyses. Longitudinal, interrelated themes, including the care needs and decline of the person with dementia, relationship change, and variable service support, framed the narrative types of family members. Six shifting narratives, apparent as dominant and secondary narrative types, characterised negotiating the caring role over time: absent/normalising, active role adoption/carer identity, resistance, acceptance and resignation, hypervigilance/submergence and role entrapment, and foreshadowed future. The presence or absence of a carer identity was also evident from interviewees’ accounts, although, even where family members were overburdened by the caring role, they did not necessarily express a carer identity. Rather than considering transition into a carer identity, hearing different narratives within the caring role is important to understand how family members experience caring, whether they see themselves as ‘carers’, and when and how they need support. Timely and continued post-diagnostic 2 support, where different caring narratives are recognised, is needed, as well as international initiatives for carer identification

“We’re happy as we are”: the experience of living with possible undiagnosed dementia.

This is the author accepted manuscript. The final version is available from Cambridge University Press via the DOI in this record. It is estimated that a third of people in the United Kingdom with signs of dementia are living without a formal diagnosis. In Wales, the proportion is nearly half. Some explanations for the gap between prevalence of dementia and number of diagnoses include living with a long-term partner/spouse and systemic barriers to diagnosis. This study recruited participants from the Cognitive Function and Ageing Studies-Wales (CFAS-Wales) cohort, randomly selected from people aged over 65 living in two areas of Wales, who met study criteria for a diagnosis of dementia and did not have a record of a formal diagnosis in general practice records. We aimed to understand more about the contexts and circumstances of people who live with and cope with cognitive difficulties without having a formal diagnosis of dementia. We conducted qualitative interviews with six participants and their spouses, and additionally with four family members of three invited people who were unable to take part. Themes were generated using thematic analysis. We present the argument that there is an adaptive response to low service levels and a complex interaction between the expectations of levels of service, perceptions of the legitimacy of cognitive problems and the right to make demands on services. This paper concludes that more could be done to address barriers to diagnosis and treatment services for those living with symptoms of dementia, but that the value placed on diagnosis by some individuals might be lower than anticipated by government policy.Alzheimer's SocietyEconomic and Social Research Council (ESRC

Identifying predictors of transition to a care home for people with dementia: findings from the IDEAL programme

Objectives: This study investigates factors associated with the person with dementia and the caregiverto identify those associated with an increased risk of transition to a care home.Method: IDEAL data were collected at baseline and at 12- and 24-month follow-up for 1545 peoplewith dementia and 1305 caregivers. Modified Poisson regressions with an offset for ‘person years at risk’ were used. Person with dementia factors explored were personal characteristics, cognition, health,self- and informant-rated functional ability, and neuropsychiatric symptoms. Caregiver factors explored were personal characteristics, stress, health, and quality of the dyadic relationship.Results: A 5% people moved into care. Risk of moving into a care home was higher among people with dementia who were ≥80 years, among people with Parkinson’s disease dementia or dementia with Lewy bodies, and among those without a spousal caregiver. Poorer cognition and more self-rated or informant-rated functional difficulties increased the risk of moving into care.Conclusion: Factors related to increased dementia severity and greater disability are the primary influences that place people with dementia at greater risk of moving into a care home. Strategies that help to maintain everyday functional ability for people with dementia could help delay people with dementia moving into care

Longitudinal Trajectories of Stress and Positive Aspects of Dementia Caregiving: Findings From the IDEAL Programme

YesUnderstanding what influences changes over time in caregiver well-being is important for the development of effective support. This study explores differences in trajectories of caregiver stress and positive aspects of caregiving (PAC). Methods Caregivers of community-dwelling individuals with mild-to-moderate dementia at baseline from the IDEAL cohort were interviewed at baseline (n = 1,203), 12 months (n = 917), and 24 months (n = 699). Growth mixture models identified multiple growth trajectories of caregiver stress and PAC in the caregiver population. Associations between study measures and trajectory classes were examined using multinomial logistic regression and mixed-effects models. Results Mean stress scores increased over time. A 4-class solution was identified: a “high” stable class (8.3%) with high levels of stress, a “middle” class (46.1%) with slightly increasing levels of stress, a “low” class (39.5%) with initial low levels of stress which slightly increased over time, and a small “increasing” class (6.1%) where stress level started low but increased at a steeper rate. Mean PAC scores remained stable over time. A 5-class solution was identified: 3 stable classes (“high,” 15.2%; “middle,” 67.6%; “low” 9.3%), a small “increasing” (3.4%) class, and 1 “decreasing” class (4.5%). For stable classes, positive ratings on study measures tended to be associated with lower stress or higher PAC trajectories and vice versa. Those with “increasing” stress also had worsening trajectories of several study measures including depression, relationship quality, competence, and ability to cope. Discussion The findings highlight the importance of identifying caregivers at risk of increased stress and declining PAC and offering them targeted support

Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme

Background: People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. Methods: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer’s disease, vascular dementia, mixed Alzheimer’s and vascular dementia, Parkinson’s disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer’s Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. Results: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson’s disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (− 0.15 points per year). Informant-rated scores declined over time (− 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (− 2.18 points per year). Conclusions: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson’s disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups

Methods and approaches for enhancing communication with people with moderate-to-severe dementia that can facilitate their inclusion in research and service evaluation findings from the IDEAL programme

YesObjectives Dementia can affect language processing and production, making communication more difficult. This creates challenges for including the person’s perspective in research and service evaluation. This study aims to identify methods, tools and approaches that could facilitate meaningful communication with people with moderate-to-severe dementia and support the inclusion of their perspectives. Methods This qualitative study was conducted as part of the IDEAL programme and involved in-depth, semi-structured interviews with 17 dementia research and/or care professionals with expertise in communication. Transcripts were analysed using framework analysis. Findings Three main themes each with sub-themes were identified: (1) Awareness, knowledge and experience; (2) Communication approach and (3) Personalization. A person-centred orientation based on getting to know the participant and developing a bi-directional exchange formed the fundamental context for effective communication. Building on this foundation, an approach using pictures, photographs or objects that are meaningful to the person and appropriate for that person’s preferences and ability could help to facilitate conversations. The findings were integrated into a diagram illustrating how the topics covered by the themes interrelate to facilitate communication. Conclusions Useful skills and approaches were identified to help researchers engage and work with people with moderate-to-severe dementia and ensure their perspective is included. These covered getting to know the participant, using a variety of tangible tools and interactional techniques and considering the environment and context of the conversation.ESRC, NIHR (ES/L001853/2); Alzheimer's Society (348, AS-PR2-16-001

Perceptions of Preconception Health Messaging and Responsibility:Engaging with 'health helpers' in the Healthy Life Trajectories Initiative-South Africa trial

Premised on the Developmental Origins of Health and Disease theory and on the limited effectiveness of antenatal interventions, interventions in the preconception period are being conducted to potentially improve intergenerational health and non-communicable disease burdens. The Healthy Life Trajectories Initiative (HeLTI) is an international health research consortium primarily investigating the intergenerational effects of behavioural interventions on obesity via a complex four-phase intervention initiated preconceptionally, through pregnancy, and into early childhood. HeLTI, in partnership with the World Health Organization, aims to generate evidence that will shape health policy focused on preconception as part of a life course approach to population health. It is necessary to ensure that a renewed public health focus on preconception prioritises justice and equity in its framing. This article presents collaborative interdisciplinary work with HeLTI-South Africa. It applies a feminist bioethics methodology, which is empirical, situated, intersectional, and fundamentally concerned with justice, to investigate what South African HeLTI community health workers, or ‘Health Helpers’, who deliver the complex behavioural intervention, think about preconception health and responsibility. Seven semi-structured interviews were conducted with HeLTI-SA Health Helpers, and data were analysed using reflexive thematic analysis. Our findings show that Health Helpers’ perceptions of preconception health and related responsibility were significantly gendered, heteronormative, and concerned with child-bearing intentionality and desires. These themes were inflected with Health Helpers’ perceptions about how attributions of responsibility are shaped by culture, demonstrating the situated nature of epistemologies. Their ideas also highlight how preconception health knowledge can distribute responsibility unjustly. Understanding the contextual impact and relevance of values around responsibility is critical to prospectively design preconception health interventions that promote equity and fairness. This understanding can then be used for effective policy translation, with the goal that public health policy is founded upon contextual responsivity and justice for the public it aims to serve