• 'All the world's a stage': Accounting for the dementia experience - insights from the IDEAL study

      Hillman, A.; Jones, I.R.; Quinn, Catherine; Nelis, S.M.; Lamont, R.A.; Clare, L. (2020-10)
      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 ambulance service advanced practitioner's role in supporting care homes: a qualitative study of care staff experiences

      Harvey, C., Froggatt, S., Lightowler, B. and Hodge, A.,; Harvey, C.; Froggatt, S.; Lightowler, Bryan; Hodge, A. (Mark Allen Group, 2021-08-02)
      The demand from care homes on NHS services continues to rise, with little evidence of ambulance service contribution in this area. The Yorkshire Ambulance Service provides an advanced practitioner model to support care homes in Sheffield, as an alternative to calling 999. This study investigated the experiences and needs of the care home staff who use the ambulance service advanced practitioner model. This qualitative study conducted semi-structured, face-to-face interviews with 19 staff members from 10 different care home settings. Thematic analysis using a combination of NVivo and manual coding was undertaken. The three key themes from the interviews were variations in service demand, the service user’s expectations and experience, and benefits to residents. Participants reported that good community services reduced the need to call 999, empowering carers to support residents to remain in the community. Care homes require comprehensive services that meet their needs. The advanced practitioner model provided by the ambulance service supports this, preventing unnecessary 999 calls and fitting with other community service provision.
    • The ANGELA Project: Improving diagnosis and post-diagnostic support for younger people with dementia and their families/supporters

      Stamou, Vasileios; La Fontaine Papadopoulos, Jenny H.; Oyebode, Jan R.; Jones, B.; Gage, H.; O'Malley, M.; Parkes, J.; Carter, J. (2018-04)
      Objectives: Younger people with dementia face significant challenges in gaining access to age- and needs-appropriate support. In this paper, we tell the story so far, of the ANGELA Research Project, which seeks to develop guidance to improve the ‘dementia journey’ for younger people with dementia and their families/supporters. Design: Our story is one of a research group aiming to conduct clinically relevant research to achieve positive changes for younger people with dementia. Our research journey will last 3 years and is now almost one year in. In this article, we aim to convey some of the decisions we have made to date, and what lies ahead for a successful implementation. Methods: So far, we have been forming as a research group and turning our initial ideas into plans that will work in the real world. Our methods for ensuring all elements of the project work well have involved internal and external aspects and processes. These have included involvement with and feedback from experts-by-experience and an advisory panel. Results: To date we have generated a protocol for all the key elements and have launched the Improving Support and Service Use Survey; a national survey gathering evidence from younger people with dementia and their supporters. In this article, we present how we aim to move forward to bring positive real-life changes to the lives of those affected by young onset dementia. Conclusions: There is a cautiously happy ending to this first phase, as we are now collecting data. However, the judgement of whether the Angela Project is a success overall will depend on whether it makes a difference at its conclusion to younger people with dementia and their supporters.
    • Bay Tree Voices: Inclusive practice in the involvement of people with dementia in practitioner education.

      Capstick, Andrea (2012)
      Dementia has been a latecomer to the field of service user involvement. Although there are now beginning to be welcome signs of improvement in the inclusion of the service-user voice, at present those with milder cognitive impairment, those who are still living at home, and those who come from white, professional backgrounds are over-represented. The BSc/MSc Dementia Studies programmes at the University of Bradford recruit part-time students who are already employed in the field of dementia care. The majority of students work in long-term or intermediate care, with smaller sub-groups working in the community, in acute care and on general hospital wards. The client groups with dementia they encounter in these settings are diverse, and tend to have different needs and perspectives from those articulated by mainstream service user groups. For this reason we have been seeking to develop an inclusive approach to service user involvement in the degree programmes we run, in order to ensure that the whole range of experiences of dementia is covered. Over the last five years this has involved developing an outreach programme in order to involve people with dementia in the environments where they spend their time, rather than restricting service user involvement to on-site activities at the University. This presentation showcases one such project which involved members of the course team working with clients attending a resource centre for older people with dementia to develop a series of short film clips (Bay Tree Voices) which were then embedded into the course learning materials in order to model alternative approaches to communication. The presentation includes formal and informal evaluations of these film-based teaching resources from service users, students and care staff.
    • Behind the stiff upper lip: war narratives of older men with dementia.

      Capstick, Andrea; Clegg, D. (2013)
      The concept of the stiff upper lip stands as a cultural metaphor for the repression and figurative ¿biting back¿ of traumatic experience, particularly in military contexts. For men born in the first half of the 20th century, maintaining a stiff upper lip involved the ability to exert high levels of cognitive control over the subjective, visceral and emotional domains of experience. In the most common forms of dementia, which affect at least one in five men now in their 80s and 90s, this cognitive control is increasingly lost. One result is that, with the onset of dementia, men who have in the intervening years maintained a relative silence about their wartime experiences begin to disclose detailed memories of such events, in some cases for the first time. This article draws on narrative biographical data from three men with late-onset dementia who make extensive reference to their experience of war. The narratives of Sid, Leonard and Nelson are used to explore aspects of collective memory of the two World Wars, and the socially constructed masculinities imposed on men who grew up and came of age during those decades. The findings show that in spite of their difficulties with short term memory, people with dementia can contribute rich data to cultural studies research. Some aspects of the narratives discussed here may also be considered to work along the line of the counter-hegemonic, offering insights into lived experiences of war that have been elided in popular culture in the post-War years.
    • Broadening the debate on creativity and dementia: A critical approach

      Bellass, S.; Balmer, A.; May, V.; Keady, J.; Buse, C.; Capstick, Andrea; Burke, L.; Bartlett, Ruth L.; Hodgson, J. (2019-11-01)
      In recent years there has been a growing interest in person-centred, ‘living well’ approaches to dementia, often taking the form of important efforts to engage people with dementia in a range of creative, arts-based interventions such as dance, drama, music, art and poetry. Such practices have been advanced as socially inclusive activities that help to affirm personhood and redress the biomedical focus on loss and deficit. However, in emphasizing more traditional forms of creativity associated with the arts, more mundane forms of creativity that emerge in everyday life have been overlooked, specifically as regards how such creativity is used by people living dementia and by their carers and family members as a way of negotiating changes in their everyday lives. In this paper, we propose a critical approach to understanding such forms of creativity in this context, comprised of six dimensions: everyday creativity; power relations; ways to operationalise creativity; sensory and affective experience; difference; and reciprocity. We point towards the potential of these dimensions to contribute to a reframing of debates around creativity and dementia.
    • Caregivers' beliefs about dementia: findings from the IDEAL study

      Quinn, Catherine; Jones, I.R.; Martyr, A.; Nelis, S.M.; Morris, R.G.; Clare, L.; IDEAL Study Team (2019)
      Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers’ DRs on their well-being, satisfaction with life (SwL) and caregiving stress. Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study. Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline. Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person’s condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition. Conclusion: Healthcare professionals should assess and gain an understanding of caregivers’ DRs in order to provide more tailored information and support.
    • Cine-med-ucation and dementia: Whatever happened to representation theory?

      Capstick, Andrea; Ludwin, Katherine (2009)
      This paper is concerned with a variety of contemporary representations of dementia in both mainstream made-for-box-office cinema and in TV soap and drama. Such representations frequently draw on familiar tropes of global memory loss, violence and aggression, extreme dependency on heroic carers, catastrophic prognosis, and early death. Whilst such narrative devices may be excusable to some extent in film made for purposes of entertainment, the producers have considerable responsibility for public awareness and understandings of dementia, which, we would argue, should be discharged in a socially responsible way, rather than purely in order to achieve dramatic effect. Moreover, it has been widely argued in recent years (eg Alexander et al 2005) that film of this nature can be used ¿as it stands¿ in the education of health and social care practitioners. Instead, we would argue that students and practitioners need to learn the basic principles of representation theory, in order to understand and critique how film works to influence and socially construct views of health, illness and regimes of truth around them, paying central attention always to the question of whose interests are served by the representation in question.
    • Comparing proxy rated quality of life of people living with dementia in care homes

      Robertson, S.; Cooper, C.; Hoe, J.; Lord, Kathryn; Rapaport, P.; Marston, L.; Cousins, S.; Lyketsos, C.G.; Livingston, G. (2020-01)
      Background. Improving quality of life (QOL) for people with dementia is a priority. In care homes, we often rely on proxy ratings from staff and family but we do not know if, or how, they differ in care homes. Methods. We compared 1056 pairs of staff and family DEMQOL-Proxy ratings from 86 care homes across England. We explored factors associated with ratings quantitatively using multilevel modelling and, qualitatively, through thematic analysis of 12 staff and 12 relative interviews. Results. Staff and family ratings were weakly correlated (ρs = 0.35). Median staff scores were higher than family’s (104 v. 101; p < 0.001). Family were more likely than staff to rate resident QOL as ‘Poor’ (χ2 = 55.91, p < 0.001). Staff and family rated QOL higher when residents had fewer neuropsychiatric symptoms and severe dementia. Staff rated QOL higher in homes with lower staff:resident ratios and when staff were native English speakers. Family rated QOL higher when the resident had spent longer living in the care home and was a native English. Spouses rated residents’ QOL higher than other relatives. Qualitative results suggest differences arise because staff felt good care provided high QOL but families compared the present to the past. Family judgements centre on loss and are complicated by decisions about care home placement and their understandings of dementia. Conclusion. Proxy reports differ systematically between staff and family. Reports are influenced by the rater:staff and family may conceptualise QOL differently
    • Components of impactful dementia training for general hospital staff: a collective case study

      Surr, Claire A.; Sass, C.; Burnley, N.; Drury, Michelle; Smith, S.J.; Parveen, Sahdia; Burden, S.; Oyebode, Jan R. (2020)
      Background and objectives: People with dementia occupy around one quarter of general hospital beds, with concerns consistently raised about care quality. Improving workforce knowledge, skills and attitudes is a mechanism for addressing this. However little is known about effective ways of training healthcare staff about dementia. This study aimed to understand models of dementia training most likely to lead to improved practice and better care experiences for people with dementia, and to understand barriers and facilitators to implementation. Method: A collective case study was conducted in three National Health Service Acute Hospital Trusts in England. Multiple data sources were used including interviews with training leads/facilitators, ward managers and staff who had attended training; satisfaction surveys with patients with dementia and/or carers; and observations of care using Dementia Care Mapping. Results: Interactive face-to-face training designed for general hospital staff was valued. Simulation and experiential learning methods were felt to be beneficial by some staff and stressful and distressing by others. Skilled delivery by an experienced and enthusiastic facilitator was identified as important. Staff identified learning and practice changes made following their training. However, observations revealed not all staff had the knowledge, attitudes and skills needed to deliver good care. Patient and carer satisfaction with care was mixed. A major barrier to training implementation was lack of resources. Supportive managers, organisational culture and strong leadership were key facilitators. Conclusion: Dementia training can lead to improved care practices. There are a range of key barriers and facilitators to implementation that must be considered.
    • Core outcome measures for interventions to prevent or slow the progress of dementia for people living with mild to moderate dementia: Systematic review and consensus recommendations

      Webster, L.; Groskreutz, D.; Grinbergs-Saull, A.; Howard, R.; O'Brien, J.T.; Mountain, Gail; Banerjee, S.; Woods, B.; Perneczky, R.; Lafortune, L.; et al. (2017-06-29)
      There are no disease-modifying treatments for dementia. There is also no consensus on disease modifying outcomes. We aimed to produce the first evidence-based consensus on core outcome measures for trials of disease modification in mild-to-moderate dementia. We defined disease-modification interventions as those aiming to change the underlying pathology. We systematically searched electronic databases and previous systematic reviews for published and ongoing trials of disease-modifying treatments in mild-to-moderate dementia. We included 149/22,918 of the references found; with 81 outcome measures from 125 trials. Trials involved participants with Alzheimer's disease (AD) alone (n = 111), or AD and mild cognitive impairment (n = 8) and three vascular dementia. We divided outcomes by the domain measured (cognition, activities of daily living, biological markers, neuropsychiatric symptoms, quality of life, global). We calculated the number of trials and of participants using each outcome. We detailed psychometric properties of each outcome. We sought the views of people living with dementia and family carers in three cities through Alzheimer's society focus groups. Attendees at a consensus conference (experts in dementia research, disease-modification and harmonisation measures) decided on the core set of outcomes using these results. Recommended core outcomes were cognition as the fundamental deficit in dementia and to indicate disease modification, serial structural MRIs. Cognition should be measured by Mini Mental State Examination or Alzheimer's Disease Assessment Scale-Cognitive Subscale. MRIs would be optional for patients. We also made recommendations for measuring important, but non-core domains which may not change despite disease modification. Most trials were about AD. Specific instruments may be superseded. We searched one database for psychometric properties. This is the first review to identify the 81 outcome measures the research community uses for disease-modifying trials in mild-to-moderate dementia. Our recommendations will facilitate designing, comparing and meta-analysing disease modification trials in mild-to-moderate dementia, increasing their value.
    • A core outcome set for nonpharmacological community-based interventions for people living with dementia at home: A systematic review of outcome measurement instruments

      Harding, A.J.E.; Morbey, H.; Ahmed, F.; Opdebeeck, C.; Elvish, R.; Leroi, I.; Williamson, P.R.; Keady, J.; Reilly, Siobhan T. (2021-12)
      It is questionable whether existing outcome measurement instruments (OMIs) in dementia research reflect what key stakeholders' value. We attained consensus from over 300 key stakeholders, including people living with dementia, and identified 13 core outcome items for use in nonpharmacological and community-based interventions for people with dementia living at home. In this systematic review we review OMIs that have previously been used in dementia care research to determine how, or even if, the 13 core outcome items can be measured. We extracted self-reported OMIs from trials, reviews and reports of instrument development. Searches were undertaken in the ALOIS database, Medline, PsycINFO, CINAHL, socINDEX and COSMIN database. We aimed to assess the psychometric properties of OMI items for face validity with the core outcome items, content validity, internal consistency and responsiveness. We held a co-research workshop involving people living with dementia and care partners in order to ratify the findings. In total 347 OMIs were located from 354 sources. Of these 76 OMIs met the inclusion criteria. No OMIs were deemed to have sufficient face validity for the COS items, and no OMIs proceeded to further assessment. The 'best' available OMI is the Engagement and Independence in Dementia Questionnaire (EID-Q). This study provides a practical resource for those designing dementia research trials. Being able to measure the COS items would herald a paradigm shift for dementia research, be responsive to what key stakeholders value and enhance the ability to make comparisons.
    • COVID-19-related social support service closures and mental well-being in older adults and those affected by dementia: a UK longitudinal survey

      Giebel, C.; Pulford, D.; Cooper, C.; Lord, Kathryn; Shenton, J.; Cannon, J.; Shaw, L.; Tetlow, H.; Limbert, S.; Callaghan, S.; et al. (2021-01-04)
      Background: The COVID-19 pandemic has had a major impact on delivery of social support services. This might be expected to particularly affect older adults and people living with dementia (PLWD), and to reduce their well- being. Aims: To explore how social support service use by older adults, carers and PLWD, and their mental well-being changed over the first 3 months since the pandemic outbreak. Methods: Unpaid dementia carers, PLWD and older adults took part in a longitudinal online or telephone survey collected between April and May 2020, and at two subsequent timepoints 6 and 12 weeks after baseline. Participants were asked about their social support service usage in a typical week prior to the pandemic (at baseline), and in the past week at each of the three timepoints. They also completed measures of levels of depression, anxiety and mental well-being. Results: 377 participants had complete data at all three timepoints. Social support service usage dropped shortly after lockdown measures were imposed at timepoint 1 (T1), to then increase again by T3. The access to paid care was least affected by COVID-19. Cases of anxiety dropped significantly across the study period, while cases of depression rose. Well-being increased significantly for older adults and PLWD from T1 to T3. Conclusions: Access to social support services has been significantly affected by the pandemic, which is starting to recover slowly. With mental well-being differently affected across groups, support needs to be put in place to maintain better well-being across those vulnerable groups during the ongoing pandemic.
    • Dancing to the music of time: an experiential learning exercise in dementia care.

      Capstick, Andrea (28/05/2013)
      This article presents findings from an experiential learning exercise in which 34 care practitioners enrolled on a part-time BSc programme in Dementia Studies were asked to identify their own favourite music, and then to investigate the musical preferences of one of their clients with dementia. For both groups, practitioners and clients, three dominant themes influencing choice of music emerged: loving relationships; significant life events and places, and a sense of physical enjoyment. This exercise enabled the group of practitioners involved to identify commonalities between their own musical memories and those of their clients with dementia. They also uncovered considerable amount of new information about their client¿s life histories. On this basis they were able to make a number of new recommendations for improving care practice.
    • Dementia and minority ethnic carers

      Parveen, Sahdia; Oyebode, Jan R. (2018-06)
    • Dementia Care 1: Person-centred approaches help to promote effective communication

      Wheeler, N.; Oyebode, Jan R. (2010-06)
      Background: This first in a three part series on dementia care explores communication. The Gold Standards Framework includes a workstream on improving end of life care in care homes; communication is one of seven key tasks within the GSF. Aim and method: This study aimed to gather care home staff views on communication issues. Focus groups were conducted with 36 members of direct care staff from nine nursing and residential care homes. Results: Three types of communication were identified: staff to staff; staff to resident; and staff to family. Discussion and conclusion: The implications of different approaches to communication are discussed, and recommendations made for practice.
    • Depressive Symptoms Increase the Likelihood of Cognitive Impairment in Elderly People with Subclinical Alzheimer Pathology

      Nagy, Z.; Anderson, Elizabeth J. (formerly Milwain) (2005)
      The objective of this study was to investigate whether the presence of depressive symptoms influences the clinical expression of Alzheimer's pathology. We have analysed the relationships between the severity of Alzheimer's pathology and cognitive decline in two patient groups defined by the presence or absence of depressive symptoms. The study included 89 subjects who participated in a longitudinal research programme prior to death, underwent post-mortem examination and were found to have only Alzheimer-type pathology in their brains, ranging in severity from the entorhinal to neocortical stages. Our results indicate that depressive symptoms did not influence cognition in the early (entorhinal) stages of Alzheimer's disease (AD; where cognition was good regardless of whether or not there was evidence for depressive symptoms) or in the late (neocortical) stages (where cognition was poor regardless of whether or not there was evidence for depression). However, in the intermediate (limbic) stages, patients with depressive symptoms had significantly worse cognitive performance (mean CAMCOG of 32) than those who did not (mean CAMCOG of 73). We conclude that depressive symptoms may contribute to the cognitive decline of AD patients in that pathology, that would be otherwise silent, becomes clinically apparent. Therefore, a multiple diagnosis of early AD and depression should be more widely considered in elderly persons presenting with mild cognitive decline and depression. Treating the depressive symptoms would benefit the patient, but the cognitive improvement may not indicate that AD is absent.
    • Developing a Management Guide (the DemPower App) for Couples Where One Partner Has Dementia: Nonrandomized Feasibility Study

      Lasrado, R.; Bielsten, T.; Hann, M.; Schumm, J.; Reilly, Siobhan T.; Davies, L.; Swarbrick, C.; Dowlen, R.; Keady, J.; Hellström, I. (2021-11-16)
      Promoting the health and well-being of couples where one partner has dementia is an overlooked area of care practice. Most postdiagnostic services currently lack a couple-centered approach and have a limited focus on the couple relationship. To help address this situation, we developed a tablet-based self-management guide (DemPower) focused on helping couples enhance their well-being and relationship quality. The aim of this study is to investigate the feasibility and acceptability of the DemPower app. A nonrandomized feasibility design was used to evaluate the DemPower intervention over 3 months among couples where a partner had a diagnosis of dementia. The study recruited 25 couples in the United Kingdom and 19 couples in Sweden. Outcome measures were obtained at baseline and postintervention. The study process and interventions were evaluated at various stages. The study was completed by 48% (21/44) of couples where one partner had dementia, of whom 86% (18/21) of couples accessed all parts of the DemPower app. Each couple spent an average of 8 hours (SD 3.35 hours) using the app during the study period. In total, 90% (19/21) of couples reported that all sections of DemPower were useful in addressing various aspects of daily life and helped to focus on how they interacted in their relationship. Of the 4 core subjects on which the DemPower app was structured, home and neighborhood received the highest number of visits. Couples used activity sections more often than the core subject pages. The perception of DemPower's utility varied with each couple's lived experience of dementia, geographic location, relationship dynamics, and opportunities for social interaction. A 5.2-point increase in the dementia quality of life score for people with dementia and a marginal increase in the Mutuality scale (+1.23 points) for caregiver spouses were found. Design and navigational challenges were reported in the DemPower app. The findings suggest that the DemPower app is a useful resource for couples where one partner has dementia and that the implementation of the app requires the support of memory clinics to reach couples at early diagnosis. ISRCTN Registry ISRCTN10122979; http://www.isrctn.com/ISRCTN10122979.
    • Developing supportive local communities: Perspectives from people with dementia participating in the IDEAL programme

      Quinn, Catherine; Hart, N.; Henderson, C.; Litherland, R.; Pickett, J.; Clare, L. (2021)
      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.