Factors associated with dementia attitudes in an adolescent cohort: structural equation modelling

Dementia-related stigma is a key barrier to people living well with dementia, leading to social isolation and poor well-being. Adolescents represent an under-researched group that will become future carers and healthcare workers for the estimated 83.2 million people who will be living with dementia by 2030. Understanding the factors involved in dementia attitude formation in adolescents is useful for the development of evidence-based anti-stigma initiatives. This study aims to identify predictors of dementia attitudes in adolescents. This is a cross-sectional study using secondary data analysis. 470 participants aged 12–15 years old from secondary schools in the Southeast of England, United Kingdom completed validated questionnaires relating to dementia attitudes (KIDS and Brief A-ADS) as well as demographic information. Multiple regressions were employed as well as a path analysis via a structural equation model to test for direct and mediatory effects. Multiple regression models revealed that being female, having higher levels of contact with dementia, and higher levels of empathy are positively associated with dementia attitudes in adolescents (p<0.05). Within the accepted structural equation model, empathy was a key mediator between contact and dementia attitudes. This study highlights the pivotal role that contact with dementia can have in influencing dementia attitudes in adolescents with empathy serving as a mediator between contact and dementia attitudes. Interventions that use contact should consider how to stimulate empathetic responses to ultimately shape dementia attitudes.</p

Experiences of age-related declining navigation abilities and impact on use of outdoor environments: a qualitative study of young-old adults with self-reported memory difficulties

Laboratory-based experiments show ageing negatively impacts navigation abilities, yet a paucity of research explores lived experience. This exploratory study examined young-old adults experiences of declining navigation abilities during sixteen semi-structured telephone interviews. Findings reveal: (i) ‘Behavioural drivers’ that underpinned the participants’ experiences and actions when engaging with their environments (ii) ‘Avoidance’ and (iii) ‘Active’ strategies that were adopted by the participants. Declining cognitive function appeared to have a negative impact on participants perceived abilities and confidence to navigate unfamiliar outdoor environments, which in turn influenced the strategies they chose to adopt. Future psychosocial interventions should draw on neuropsychological theory to ensure retention of navigation skills and confidence for as long as possible.</p

Experiences of age-related declining navigation abilities and impact on use of outdoor environments: a qualitative study of young-old adults with self-reported memory difficulties

Laboratory-based experiments show ageing negatively impacts navigation abilities, yet a paucity of research explores lived experience. This exploratory study examined young-old adults experiences of declining navigation abilities during sixteen semi-structured telephone interviews. Findings reveal: (i) ‘Behavioural drivers’ that underpinned the participants’ experiences and actions when engaging with their environments (ii) ‘Avoidance’ and (iii) ‘Active’ strategies that were adopted by the participants. Declining cognitive function appeared to have a negative impact on participants perceived abilities and confidence to navigate unfamiliar outdoor environments, which in turn influenced the strategies they chose to adopt. Future psychosocial interventions should draw on neuropsychological theory to ensure retention of navigation skills and confidence for as long as possible.</p

Identifying modifiable psychosocial outcomes to maintain physical ACTIVity and promote independence in DEMentia: the ActivDem study

BackgroundPromoting habitual physical activity (HPA; e.g. walking) may help decelerate dependency and disability in people with dementia (PwD). HPA refers to any movement the skeletal muscles make which requires energy expenditure, including daily tasks (e.g. gardening/housework). Research regarding physical activity in PwD mainly focuses on exercise‐based activities, which may not be feasible for people with chronic health conditions or frailty, or who cannot afford or travel to exercise classes. Promoting participation in HPA may be an inclusive, accessible strategy to support PwD to remain physically active and mobile. PwD participate in less HPA than recommended and disease‐specific factors (e.g. cognition) do not sufficiently explain this. In healthy ageing, HPA participation is associated with multiple socio‐ecological factors (e.g. psychosocial wellbeing/social support/environment) but this has not been explored in dementia. The ActivDem study aims to identify key socio‐ecological influences on HPA change over time in community‐dwellers with dementia. Figure 1 presents ActivDem’s core objectives.MethodPwD and their carers will be recruited from the ongoing cohort study, DETERMIND, they will participate in a continuous seven‐day HPA assessment. This involves wearing an inertial measurement unit on their lower back at baseline and one‐year follow up. Digital mobility outcomes relating to volume (e.g. steps per day), pattern (e.g. mean ambulatory bout length), and variability (i.e. of bout length) will be derived via validated algorithms. PwD will also complete the LASA Physical Activity Questionnaire and Falls Efficacy Scale. Carers will complete the Dementia Management Strategies Scale. Demographic, clinical and psychosocial characteristics and information on care support will be assessed as part of the DETERMIND study (1).ResultLongitudinal statistical methods will identify key predictors of HPA change in PwD, and examine the relationship between HPA and independenceConclusionThe ActivDem study will identify key socio‐ecological predictors of HPA change, these will inform key interventional components to support PwD to remain physically active and mobile following diagnosis of dementia. </p

Standardised data collection from people with dementia over the telephone: a qualitative study of the experience of DETERMIND programme researchers in a pandemic

There is a notable lack of evidence on what constitutes good practice in remote quantitative data collection from research participants with dementia. During the COVID-19 pandemic face-to-face research became problematic, especially where participants were older and more at risk of infection. The DETERMIND-C19 study, a large cohort study of people with dementia, switched to telephone data collection over this period. This paper explores the experiences of researchers who collected quantitative data over the telephone from people with dementia during the first COVID-19 lockdowns in England. The aim was to learn from these experiences, share insights and inform future research practice across disciplines. Seven DETERMIND researchers were interviewed about the processes and challenges of collecting quantitative data from people with dementia over the telephone compared to face-to-face. Data were analysed using reflexive thematic analysis. Two themes were developed: first the telephone adds an extra layer of confusion to an already cognitively complex interaction. Second, researchers found it difficult to recognise subtle cues that signalled participants’ rising emotion over the telephone in time to prevent distress. The researchers employed strategies to support participants which may not have conformed to the strict conventions of structured interviewing, but which were informed by person-oriented principles. Whilst in practice this may be a common approach to balancing the needs of participants and the requirements of quantitative research, it is rare for studies to openly discuss such trade-offs in the literature. Honest, reflective reporting is required if the practice of remote data collection from people with dementia is to progress ethically and with integrity.</p

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers

Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19. Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic. Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.</p

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers

Introduction: Few studies have longitudinally mapped Quality of Life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during COVID-19. Methods: In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and two years later. Latent growth curve modeling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Results: Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic, and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. ‘Confidence in future’ and ‘Feeling supported’ were the only carer QoL subscales to show some recovery post-pandemic. Discussion: It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.</p

Emotion-focused dyadic coping styles used by family carers of people with dementia during the COVID-19 pandemic

Emotional wellbeing of family carers and people with dementia is associated with not only how each individual copes with stress and conflict, but also by how they cope together. Finding ways to positively cope together was particularly important during COVID-19 lockdown restrictions, when other avenues of emotional support were less available. We explored how carers experienced and used emotion-focused dyadic coping styles during the COVID-19 pandemic. In-depth qualitative interviews were conducted during the pandemic with 42 family carers, supplemented by quality of life scores collected both pre- and during the pandemic and household status. Abductive thematic analysis identified five styles of emotion-focused dyadic coping: common, supportive, hostile, disengaged avoidance and protective. The COVID-19 pandemic left many dyads unsupported. While many carers adapted, reporting increases in quality of life and enjoying the extra time with the person with dementia, others experienced dyadic conflict and reductions in quality of life. This variation was associated with dyadic coping styles, including challenges in using 'positive' styles and the protective use of 'negative' disengaged avoidance in the right situations. Dyadic coping styles also differed as a function of whether the dyad lived together. As many people with dementia are supported by an informal carer, considering how they cope together could help us to better support them. We make suggestions for dyadic interventions tailored by co-residency status that could help dyads identify and communicate coping needs, reconnect following avoidance coping, and replenish their coping resources through social support