Yes / Qualitative dementia research emphasises the importance of recognising the voice of the person with dementia. However, research imbued with a politics of selfhood, whereby individuals are called upon to give coherence to experience and emotion, jars with representations of dementia as a gradual decline in capacity. Moreover, it reinforces an assumption that there is an essential experience that can be accessed through different methods. Drawing on Atkinson and Silverman, we view the interview not as confessional but rather as an outcome of social interaction. This paper draws on qualitative interviews from the Improving the Experince of Dementia and Enhancing Active Life (IDEAL) study, to focus specifically on the forms of accounting and storytelling of people living with dementia and how these are produced through the course of the interview encounter. Extracts from our interviews highlight key aspects of this interactional process: (a) social conventions and temporality, (b) self presentation and identity work, (c) accounts and wider cultural meanings. To conclude, we suggest that qualitative research with people with dementia requires a reframing of both the interview encounter and interpretive practices. / The IDEAL study’ was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) through grant ES/L001853/2 ‘Improving the experience of dementia and enhancing active life: living well with dementia’

Yes / To build an evidence-informed theoretical model describing how to support people with dementia to live well or for longer at home. Methods: We searched electronic databases to August 2018 for papers meeting predetermined inclusion criteria in two reviews that informed our model. We scoped literature for theoretical models of how to enable people with dementia to live at home independently, with good life quality or for longer. We systematically reviewed Randomised Controlled Trials (RCTs) reporting psychosocial intervention effects on time lived with dementia at home. Two researchers independently rated risk of bias. We developed our theoretical model through discussions with experts by personal, clinical and academic experiences, informed by this evidence base. Results: Our scoping review included 52 studies. We divided models identified into: values and approaches (relational and recovery models; optimising environment and activities; family carer skills and support); care strategies (family carer-focused; needs and goal-based; self-management); and service models (case management; integrated; consumer-directed). The 11 RCTs included in our systematic review, all judged at low risk of bias, described only two interventions that increased time people with dementia lived in their own homes. These collectively encompassed all these components except for consumer-directed and integrated care. We developed and revised our model, using review evidence and expert consultation to define the final model. Conclusions: Our theoretical model describes values, care strategies and service models that can be used in the design of interventions to enable people with dementia to live well and for longer at home. / This work forms the first phase of the NIDUS (New Interventions in Dementia Study), which is hosted within the Alzheimer’s Society Centre of Excellence for Independence at home (Centre of Excellence grant 330).

Yes / When face-to-face meetings and events resume, there is likely to be a renewed commitment to involving people with dementia and carers. Clare Mason and colleagues reflect on what they have learnt from their own experience and provide some tips for good practice.

This study involved 58 persons with dementia living in three rural Canadian long-term care (LTC) facilities. In an attempt to find the relationship between these person's possible pain and levels of agitation, data on five proxy indicators of pain were collected and correlated with scores from the Pittsburgh Agitation Scale (PAS). Results indicated that three of the resident pain measures were significantly correlated with PAS scores. In particular, the palliative consultant pain ratings and the DS-DAT were strongly correlated with total PAS scores, and the five PAS sub-factors. Importantly, the PAS sub-factor of resistance to care was strongly correlated with three of the pain variables. Major study implications include the need for increased use of palliative pain consultants in LTC, and the need for nursing staff to realize that when demented residents resist care, it may be a potential clue that the resident is experiencing untreated pain. / xv, 116 leaves ; 29 cm.

Little is known about the specific cognitive impairments that may be the cause of the reported increased crash rate in individuals with early dementia. Though, it is widely accepted that attention, visuospatial and perceptual abilities are central in being able to operate a vehicle safely. This study had three objectives. The first was to clarify the neuropsychological profile, with an emphasis on attention, visuospatial and perceptual abilities, of individuals with early dementia with Lewy bodies (DLB), the next was to examine the driving performances of two groups of individuals with early dementia (i.e., early Alzheimer’s disease, AD, and early DLB) and the last was to examine the degree of association between neuropsychological impairments and driving impairments in hopes of predicting poor driving outcomes. Fifty-six participants were recruited from three groups; 20 individuals diagnosed with early AD, 15 individuals diagnosed with early DLB and 21 healthy age-matched controls. All participants were administered the following neuropsychological tests: the Mini-Mental Status Exam (MMSE), the Dementia Rating Scale (DRS-2), the Boston Naming Test (BNT), the Test of Everyday Attention (TEA), the Visual Object and Space Perception Test (VOSP) and the Useful Field of View (UFOV). Additionally, a simulated driving task was completed, with data being collected through primary measures recorded by the simulator as well as an experimenter based driving assessment using a demerit-point test. Results indicated that individuals with early DLB were found to be most impaired in their visuospatial abilities, selective and divided attention abilities, and were found to have significant cognitive fluctuations. Driving performances confirmed that drivers with early dementia were at greater risk for motor vehicle collisions (MVC) and they were found to commit a significant number of driving errors during the driving simulation. Finally, this study was able to demonstrate that in drivers with early AD, attentional impairments were the strongest predictors of driving impairment, whereas in drivers with early DLB, visuospatial impairments were indicative of driving impairment.

Thesis (M.S.)--University of Michigan, 1999. / Running title: Psychotropics and agitation. Includes bibliographical references.

Thesis (M.S.)--University of Michigan, 1999. / Running title: Psychotropics and agitation. Includes bibliographical references.

Little is known about the specific cognitive impairments that may be the cause of the reported increased crash rate in individuals with early dementia. Though, it is widely accepted that attention, visuospatial and perceptual abilities are central in being able to operate a vehicle safely. This study had three objectives. The first was to clarify the neuropsychological profile, with an emphasis on attention, visuospatial and perceptual abilities, of individuals with early dementia with Lewy bodies (DLB), the next was to examine the driving performances of two groups of individuals with early dementia (i.e., early Alzheimer’s disease, AD, and early DLB) and the last was to examine the degree of association between neuropsychological impairments and driving impairments in hopes of predicting poor driving outcomes. Fifty-six participants were recruited from three groups; 20 individuals diagnosed with early AD, 15 individuals diagnosed with early DLB and 21 healthy age-matched controls. All participants were administered the following neuropsychological tests: the Mini-Mental Status Exam (MMSE), the Dementia Rating Scale (DRS-2), the Boston Naming Test (BNT), the Test of Everyday Attention (TEA), the Visual Object and Space Perception Test (VOSP) and the Useful Field of View (UFOV). Additionally, a simulated driving task was completed, with data being collected through primary measures recorded by the simulator as well as an experimenter based driving assessment using a demerit-point test. Results indicated that individuals with early DLB were found to be most impaired in their visuospatial abilities, selective and divided attention abilities, and were found to have significant cognitive fluctuations. Driving performances confirmed that drivers with early dementia were at greater risk for motor vehicle collisions (MVC) and they were found to commit a significant number of driving errors during the driving simulation. Finally, this study was able to demonstrate that in drivers with early AD, attentional impairments were the strongest predictors of driving impairment, whereas in drivers with early DLB, visuospatial impairments were indicative of driving impairment.

Young onset dementia (YOD) affects not only the person diagnosed, but the family unit as a whole. It is estimated that as many as 500,000 people in the United States have YOD and around 250,000 children are involved in caring for these people. A child of a parent with YOD can begin to experience negative effects when the child begins to take part in caregiving for the person with young onset dementia (PWYOD). Feelings of stress, anger, fear of the future, depression, social isolation, and increasing responsibility of caring for the PWYOD can be felt by children as caregivers. Research shows that children of people with YOD have reported an extreme lack of support and decreased communication within the family. The purpose of this thesis was to examine current interventions designed to improve coping for children of parents with YOD. A review of literature using CINAHL, Medline, and PsychINFO was conducted to gather peer-reviewed articles and journals relating to interventions to help children of parents with YOD cope. However, no studies have discussed interventions specifically for the child. Therefore, information was pulled from 5 studies regarding what children of people with YOD feel has helped them, in their respective experiences, to deal with the stresses of a parent with YOD. Research suggests that individualized care should be provided for these children based on: age, developmental stage, and experience. Children have reported that they cope by spending time away from the home, participating in extracurricular activities, and spending time with friends. Clear communication by all members of the family is also reported to be vital in easing the stresses of caring for a parent with YOD. While children have developed these coping mechanisms, interventions need to be formally designed and their effect on improving coping examined. Analyzing the experiences of the children with parents with YOD is necessary for clinicians to gain insight into what interventions worked for this population, and what interventions need to be created for further and more individualized support.

Yes / Communities play an important role in supporting people living with affected by dementia. The aim of this study was to explore what could be changed in the local community to enable those with dementia to live well. People with dementia and carers taking part in the IDEAL programme responded to open-ended questions. Responses from 1,172 people with dementia and 702 caregivers were analysed using thematic analysis. Four themes were identified: raising awareness, improving access to support services, providing social events and activities, and supporting people to engage in the community. These highlight the role of individuals, resources and the environment in supporting those with dementia. Longer-term investment in services is needed to underpin dementia-inclusive communities. / The IDEAL study was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR) through grant ES/L001853/2. The IDEAL-2 study’ is funded by Alzheimer’s Society, grant number 348, AS-PR2-16-001. The support of ESRC, NIHR and Alzheimer’s Society is gratefully acknowledged.