scholarly journals Development of the Experienced Communication in Dementia Questionnaire: A Qualitative Study

2021 ◽  
Vol 58 ◽  
pp. 004695802110281
Author(s):  
Maria W. L. J. Olthof-Nefkens ◽  
Els W. C. Derksen ◽  
Bert J. M. de Swart ◽  
Maria W. G. Nijhuis-van der Sanden ◽  
Johanna G. Kalf
Keyword(s):  
Communication Intervention ◽  
Future Research ◽  
Final Version ◽  
Dementia Caregiver ◽  
Communication Problems ◽  
People With Dementia ◽  
Communication Difficulties ◽  
Proxy Version ◽  
Person With Dementia ◽  
Selection Of

Communication problems with their caregivers are common in people with dementia. Although interventions for improvement of communication are being developed, a tool to measure how participants experience their communication is lacking. The objective of this article is to describe the development of a questionnaire that measures the “experienced communication” of persons with dementia (ECD-P) as well as of their caregivers (ECD-C). Interviews were conducted with five person with dementia—caregiver dyads who had recently received a new communication intervention. Reflexive thematic analysis was performed on the transcripts using ATLAS.ti. Codes were created, categories and themes were identified, and items for the questionnaires were generated. Selection of items and response scales was done in collaboration with the same dyads. The final version was established after pilot testing with seven other dyads and discussion with five experts in the field of dementia care. Analysis of the transcripts resulted in 212 codes and 17 categories within four themes: caregiver competence, social communication, communication difficulties in daily life, and experienced emotions during conversations. The final version of the ECD-P consists of part 1 with 22 items and 4-point Likert scales, and part 2 with two items and 1 to 10 scales. In the final ECD-C (proxy version), part 1 and part 2 are similar to the ECD-P, while a part 3 was added to assess caregivers’ own perspective and emotions (five items). Based on the experiences of people with dementia and their caregivers, we constructed a face-valid questionnaire. This justifies future research to test its clinimetric characteristics.

scholarly journals A qualitative study of the shared experience of humour between people living with dementia and their partners

Dementia ◽  
2018 ◽  
Vol 19 (6) ◽  
pp. 1794-1810
Author(s):  
Helen Hickman ◽  
Chris Clarke ◽  
Emma Wolverson
Keyword(s):  
Interpretative Phenomenological Analysis ◽  
Emotional Experience ◽  
Well Being ◽  
Future Research ◽  
Structured Interviews ◽  
Relationship Strength ◽  
Social And Emotional ◽  
People With Dementia ◽  
Care Partners ◽  
Person With Dementia

Humour is a complex social and emotional experience which could constitute a positive resource for people endeavouring to live well with dementia. However, little is currently known about the shared use and value of humour in dyads where one person has dementia. The purpose of this study was therefore to explore how people with dementia and their care-partners experience, use and draw meaning from humour in relation to their shared experiences of dementia and their ongoing relationships. Ten participant dyads (the person with dementia and their spousal partner) took part in joint semi-structured interviews. Interpretative Phenomenological Analysis revealed eight subthemes that were subsumed under three super-ordinate themes: ‘Humour Has Always Been There (and Always Will Be)’; ‘Withstanding Dementia’ and ‘Renewing the Value of Humour in Dementia’. Overall, the findings suggest that humour, in different forms, can represent a salient and enduring relationship strength that helps dyads maintain well-being and couplehood by providing a buffer against stressors associated with dementia. The findings highlight the potential value of integrating a dyadic perspective with strengths-based approaches in future research into how people live well with dementia.

Advance care planning in different settings for people with dementia: A systematic review and narrative synthesis

2019 ◽  
Vol 17 (6) ◽  
pp. 707-719 ◽  
Author(s):  
Adele J. Kelly ◽  
Tim Luckett ◽  
Josephine M. Clayton ◽  
Liam Gabb ◽  
Slavica Kochovska ◽  
...  
Keyword(s):  
Systematic Review ◽  
Advance Care Planning ◽  
Future Research ◽  
Care Planning ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Surrogate Decision ◽  
The Individual ◽  
Person With Dementia

AbstractBackgroundAdvance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.AimWe conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.MethodsA search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.ResultsOf 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.ConclusionFuture research should focus on ways to involve people with dementia in decision-making through supported means.

scholarly journals Recruiting hard to reach populations to studies: breaking the silence: an example from a study that recruited people with dementia

BMJ Open ◽  
2019 ◽  
Vol 9 (11) ◽  
pp. e030829
Author(s):  
Becky Field ◽  
Gail Mountain ◽  
Jane Burgess ◽  
Laura Di Bona ◽  
Daniel Kelleher ◽  
...  
Keyword(s):  
Secondary Analysis ◽  
Future Research ◽  
Specific Population ◽  
Research Experiences ◽  
Multiple Strategies ◽  
Successful Recruitment ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Hard To Reach Populations ◽  
Person With Dementia

ObjectiveTo share the challenges of recruiting people with dementia to studies, using experiences from one recently completed trial as an exemplar.BackgroundResearch publications always cite participant numbers but the effort expended to achieve the sample size is rarely reported, even when the study involved recruiting a hard to reach population. A multisite study of a psychosocial intervention for people with dementia illustrates the challenges. This study recruited 468 ‘dyads’ (a person with dementia and a family carer together) from 15 sites but the time taken to achieve this was longer than originally estimated. This led to a study extension and the need for additional sites. Recruitment data revealed that certain sites were more successful than others, but why? Can the knowledge gained be used to inform other studies?MethodsSecondary analysis of routinely collected recruitment data from three purposefully selected sites was examined to understand the strategies used and identify successful approaches.FindingsAt all three sites, the pool of potential recruits funnelled to a few participants. It took two sites 18 months longer than the third to achieve recruitment numbers despite additional efforts. Explanations given by potential participants for declining to take part included ill health, reporting they were ‘managing’, time constraints, adjusting to a diagnosis of dementia and burden of study procedures.ConclusionsSuccessful recruitment of people with dementia to studies, as one example of a hard to reach group, requires multiple strategies and close working between researchers and clinical services. It requires a detailed understanding of the needs and perspectives of the specific population and knowledge about how individuals can be supported to participate in research. Experiences of recruitment should be disseminated so that knowledge generated can be used to inform the planning and implementation of future research studies.

Measuring the Needs of Family Caregivers of People With Dementia: An Assessment of Current Methodological Strategies and Key Recommendations

2017 ◽  
Vol 38 (9) ◽  
pp. 1304-1318 ◽  
Author(s):  
Lauren R. Bangerter ◽  
Joan M. Griffin ◽  
Steven H. Zarit ◽  
Rachel Havyer
Keyword(s):  
Needs Assessment ◽  
Measurement Theory ◽  
Third Party ◽  
Measurement Development ◽  
Future Research ◽  
Dementia Caregivers ◽  
People With Dementia ◽  
Caregiver Needs ◽  
Person With Dementia ◽  
Development And Validation

While dementia caregivers are regarded as a population with high unmet needs, there is little consensus as to how caregivers’ needs should be conceptualized and measured. This article describes how dementia caregivers’ needs are currently assessed in the scientific literature with the goal of suggesting guidelines for the enhancement of future measurement of caregiver needs. A review of 26 articles identified overarching themes within measurement approaches including variation in methodological rigor, proxy indicators of need, dual needs assessment of caregiver and person with dementia (PWD), and third-party needs assessment. We recommend future research dedicate theoretical attention to the conceptualization and classification of caregivers’ needs to build a stronger foundation for measurement. The measurement development process should capitalize on mixed-methodology and follow instrument development and validation guidelines set forth by measurement theory. Reliable and valid instruments are essential to developing services and policies that address dementia caregivers’ needs.

Dementia in the workplace: a review

2015 ◽  
Vol 14 (1) ◽  
pp. 24-34 ◽  
Author(s):  
Louise Ritchie ◽  
Pauline Banks ◽  
Michael Danson ◽  
Debbie Tolson ◽  
Fiona Borrowman
Keyword(s):  
Work Performance ◽  
Future Research ◽  
Allied Health Professionals ◽  
High Quality Research ◽  
Content Type ◽  
People With Dementia ◽  
Starting Point ◽  
State Pension ◽  
Person With Dementia ◽  
The Impact

Purpose – Recent changes affecting state pension age, and earlier diagnosis, will result in more people with dementia in employment. The purpose of this paper is to establish the nature of support that would enable/enables people with dementia or mild cognitive impairment to continue employment post diagnosis. Design/methodology/approach – An integrative review was carried out supported by information derived from a thematic analysis of data from interviews with seven relatives supporting a younger person with dementia and one person with dementia. Findings – Six papers were identified for inclusion in the review. Findings from the published papers and interviews indicated that work is a significant issue for people with dementia highlighting problems with job retention, work performance and the impact of diagnosis. Research limitations/implications – The review highlighted a dearth of high-quality research in the area. Although employment was not the main focus of the interviews, the extracts highlight some of the challenges that face people who develop dementia while of working age, their families, and employers. Practical implications – Vocational rehabilitation is primarily carried out by allied health professionals; however, there is a lack of research evidence relating to people with dementia in the workplace. Further research is needed in order to inform future practice. Social implications – Loss of employment deprives families of financial security and employers of a skilled employee. Originality/value – This is the first review to focus on dementia in employment, providing a starting point on which to base future research in this area.

Exploring the Effects of a Golf Program on Psychological and Social Wellbeing for People With Dementia, Carers, and Staff

2021 ◽  
pp. 1-13
Author(s):  
Nathan Hill ◽  
Sonia Fihosy ◽  
Paul M. Camic
Keyword(s):  
Physical Activity ◽  
Thematic Analysis ◽  
Future Research ◽  
Center Staff ◽  
Social Wellbeing ◽  
People With Dementia ◽  
Dementia Carer ◽  
Person With Dementia ◽  
Preliminary Support

There is a paucity of evidence regarding the effects of sport and physical activity on wellbeing in dementia. The present study is the first known study to involve golf with this population. People with dementia (n = 10) and carers (n = 5) participated in a 6-week golf program, facilitated by golf center staff (n = 3). Multiple avenues of data collection were utilized and were subject to thematic analysis. Five central themes were identified: emotion, respite, losing the “dementia” label, friendship/camaraderie, and improving relationships. Underlying subthemes were also identified, while potential links between themes were highlighted. Themes were also considered in terms of which participants (person with dementia, carer, and staff) provided evidence for each theme. This study presents preliminary support for the role of golf to enhance the psychological and social wellbeing of people with early stages of dementia, carers, and staff. Potential mechanisms and future research are discussed.

scholarly journals Assessing Determinants of Perceived Quality in Transitions for People with Dementia: a Prospective Observational Study

2019 ◽  
Vol 22 (1) ◽  
pp. 13-22 ◽  
Author(s):  
Neil Drummond ◽  
Lynn McCleary ◽  
Linda Garcia ◽  
Katherine McGilton ◽  
Frank Molnar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Longitudinal Design ◽  
Outcome Variable ◽  
Dementia Caregiver ◽  
Clinical Encounters ◽  
Summative Assessments ◽  
People With Dementia ◽  
Person With Dementia ◽  
Prospective Longitudinal

BackgroundThe trajectory of dementia through time is characterized by common transitions which are difficult for persons with dementia (PWDs) and their families and friends. Our study sought to identify determinants for the quality of transition outcomes.MethodA 24-month, prospective, longitudinal design identified specific transitions as they occurred in 108 person-with-dementia/caregiver dyads, and assessed the perceived transition quality from the perspective of the caregiver and what we denote as the ‘summative’ transition quality outcome variable (as explained in the Data Processing section under Methods).ResultsAmong caregivers and during the authors’ deliberations of the summative transition quality outcomes, good transition quality was associated with the PWD’s baseline Disability Assessment for Dementia (OR 1.04, 95% CI 1.02-1.06 per increase in percent score based on summative assessments), and with the PWD’s higher baseline quality of life scores (OR 1.11, 95% CI 1.05-1.18 per increase in unit of score in QOL-AD based on summative assessments). Caregiver-perceived better outcome quality was associated with lower caregiver burden, (OR 0.97, 95% CI 0.95-0.99 per unit CBI score increase).ConclusionIdentifying determinants of successful transitions is feasible and may be translated into practical guidance for use in clinical encounters. Those with worse prior quality of life or worse performance in activities of daily living appear to require specific support during transitions, as do those whose caregivers report higher levels of burden.

scholarly journals Perceived and objective availability of green and blue spaces and quality of life in people with dementia: results from the IDEAL programme

2021 ◽  
Author(s):  
Yu-Tzu Wu ◽  
◽  
Linda Clare ◽  
Ian Rees Jones ◽  
Sharon M. Nelis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Urban Areas ◽  
Positive Association ◽  
Deprivation Level ◽  
Community Dwelling ◽  
Future Research ◽  
Interaction Terms ◽  
Perceived Availability ◽  
People With Dementia

Abstract Purpose The aim of this study was to investigate the associations between quality of life and both perceived and objective availability of local green and blue spaces in people with dementia, including potential variation across rural/urban settings and those with/without opportunities to go outdoors. Methods This study was based on 1540 community-dwelling people with dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Quality of life was measured by the Quality of Life in Alzheimer’s Disease (QoL-AD) scale. A list of 12 types of green and blue spaces was used to measure perceived availability while objective availability was estimated using geographic information system data. Regression modelling was employed to investigate the associations of quality of life with perceived and objective availability of green and blue spaces, adjusting for individual factors and deprivation level. Interaction terms with rural/urban areas or opportunities to go outdoors were fitted to test whether the associations differed across these subgroups. Results Higher QoL-AD scores were associated with higher perceived availability of local green and blue spaces (0.82; 95% CI 0.06, 1.58) but not objective availability. The positive association between perceived availability and quality of life was stronger for urban (1.50; 95% CI 0.52, 2.48) than rural residents but did not differ between participants with and without opportunities to go outdoors. Conclusions Only perceived availability was related to quality of life in people with dementia. Future research may investigate how people with dementia utilise green and blue spaces and improve dementia-friendliness of these spaces.

Accounting for natural disasters from a historical perspective: A literature review and research agenda

2021 ◽  
Vol 26 (2) ◽  
pp. 179-204
Author(s):  
Massimo Sargiacomo ◽  
Stefania Servalli ◽  
Serena Potito ◽  
Antonio D’Andreamatteo ◽  
Antonio Gitto
Keyword(s):  
Natural Disasters ◽  
Economic History ◽  
Research Agenda ◽  
Historical Research ◽  
Future Research ◽  
Research Topics ◽  
Open Research ◽  
Emerging Themes ◽  
Published Research ◽  
Selection Of

This study offers an analysis of published historical research on accounting for natural disasters. Drawing on the insights provided by an examination of 35 accounting/business/economic history and generalist journals, 11 articles have been selected and analysed. The analysis conducted on the scattered literature identified the emerging themes, disasters investigated, periods of time explored and main contributions of published research. The analysis is extended by the examination of some key conferences of interdisciplinary history associations, and of the eventual journals/issues where the papers presented were published. The investigation has also been complemented by a brief selection of books showing historical analyses of diverse disasters, typologies and periods of investigation. The stimuli provided by the study have helped to portray the main features of an open research agenda, highlighting possible future research topics and suggesting ancient and recent disasters’ loci to be investigated worldwide.

scholarly journals ‘Getting back to normality seems as big of a step as going into lockdown’: the impact of the COVID-19 pandemic on people with early to middle stage dementia

2021 ◽  
Author(s):  
Catherine V Talbot ◽  
Pam Briggs
Keyword(s):  
Well Being ◽  
Cognitive Stimulation ◽  
Social Worlds ◽  
Middle Stage ◽  
People With Dementia ◽  
The Social ◽  
Function Loss ◽  
The Government ◽  
Person With Dementia ◽  
The Impact

Abstract People with dementia can experience shrinkage of their social worlds, leading to a loss of independence, control and reduced well-being. We used ‘the shrinking world’ theory to examine how the COVID 19 pandemic has impacted the lives of people with early to middle stage dementia and what longer-term impacts may result. Interviews were conducted with 19 people with dementia and a thematic analysis generated five themes: the forgotten person with dementia, confusion over government guidance, deterioration of cognitive function, loss of meaning and social isolation, safety of the lockdown bubble. The findings suggest that the pandemic has accelerated the ‘shrinking world’ effect and created tension in how people with dementia perceive the outside world. Participants felt safe and secure in lockdown but also missed the social interaction, cognitive stimulation and meaningful activities that took place outdoors. As time in lockdown continued, these individuals experienced a loss of confidence and were anxious about their ability to re-engage in the everyday practises that allow them to participate in society. We recommend ways in which the government, communities and organisations might counteract some of the harms posed by this shrinking world.

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