scholarly journals A visual and creative approach to exploring people with dementia’s experiences of being students at a school in Denmark

Dementia ◽  
2018 ◽  
Vol 19 (3) ◽  
pp. 786-804
Author(s):  
Alison Ward ◽  
Diana Schack Thoft ◽  
Helen Lomax ◽  
Jacqueline Parkes
Keyword(s):  
Early Stage ◽  
Research Process ◽  
Photo Elicitation ◽  
Learning And Development ◽  
Group Discussions ◽  
Home Life ◽  
Life Long Learning ◽  
People With Dementia ◽  
Dementia Research

In dementia research, there is limited knowledge about how people with dementia experience their daily life including how they experience the services they attend. This means a lack of knowledge about how people with dementia judge the quality of services provided for them. In this study visual and creative methods were used to understand the experience of people with early stage dementia who attend an adult school, Voksenskolen for Undervisning og Kommunikation (VUK) in Denmark. The study explored the students’ experience of being a student at VUK and what it means to engage in life-long learning. Alongside the aim to evaluate the service provided for them, seen from their perspective. Photo-elicitation was used, with cameras provided to each student, who took photographs of their school and home life. Students’ photographs were used to support focus group discussions, with the images integral to the process of talking about and recalling stories. Ten students were recruited to participate in four weekly sessions. Two groups were run with five students in each group. Each session was video recorded, these sessions were then transcribed and analysed using Braun and Clarke’s thematic analysis. Visual images were found to support the students’ memory of current experiences and prompted reminiscences about the past, leading to rich descriptions about being a student at VUK and their experiences of living with dementia. Being able to attend VUK was found to be important for these students with dementia, providing them with a sense of purpose, a way to support their cognitive function and also to develop new friendships. The method provided a way for people with dementia to be active in the research process and provide their perspective about a novel service, which promotes an ethos of learning and development.

scholarly journals Cross-cultural adaptation of the German version of the Quality of Life in Alzheimer's Disease scale - Nursing Home version (QoL-AD NH)

2016 ◽  
Vol 28 (8) ◽  
pp. 1399-1400 ◽  
Author(s):  
Martin Nikolaus Dichter ◽  
Eva-Maria Wolschon ◽  
Gabriele Meyer ◽  
Sascha Köpke
Keyword(s):  
Quality Of Life ◽  
Alzheimer’S Disease ◽  
Alzheimer's Disease ◽  
Community Dwelling ◽  
Positive Effects ◽  
People With Dementia ◽  
The Us ◽  
Dementia Research ◽  
Almost All

Dementia is a chronic and currently incurable syndrome. Therefore, quality of life (QoL) is a major goal when caring for people with dementia (Gibson et al., 2010) and a major outcome in dementia research (Moniz-Cook et al., 2008). The measurement of QoL, especially proxy-rating, is challenging because of the proxy-perspective (Pickard and Knight, 2005), reliability (Dichter et al., 2016), validity (O'Rourke et al., 2015), and responsiveness (Perales et al., 2013). Probably due to these challenges, it has not been possible to show positive effects for QoL in almost all non-pharmacological interventions for people with dementia (Cooper et al., 2012). One recommended (Moniz-Cook et al., 2008) and frequently used instrument is the Quality of Life in Alzheimer's Disease scale (QoL-AD), which was originally developed in the US for community-dwelling people with dementia. The QoL-AD consists of 13 items based on a 4-point Likert scale ranging from “1”=poor to “4”=excellent (Logsdon et al., 1999). The original instrument has been adapted for people living in nursing homes (NH) by Edelmann et al. (2005).

Dementia from the inside: how people with early-stage dementia evaluate their quality of life

2005 ◽  
Vol 25 (2) ◽  
pp. 197-214 ◽  
Author(s):  
TOWAKO KATSUNO
Keyword(s):  
Quality Of Life ◽  
Health Care Professionals ◽  
Early Stage ◽  
Structured Interviews ◽  
Psychosocial Wellbeing ◽  
People With Dementia ◽  
Quality Of Life Scale ◽  
Quality Of Life Index ◽  
Item Quality

The purposes of this study were to explore the self-rated and objectively measured quality of life of people with early-stage dementia and to describe their personal experiences and reactions to the negative public view of dementia. Information was collected from 23 participants who lived in a mid-western United States metropolitan area. Self-ratings were collected by semi-structured and structured interviews, and the objective measures were the Quality of Life Index (QLI) and the Single Item Quality of Life Scale (SIQLS). It was found that 21 of the participants perceived their current QOL as ‘good’ or better, and that the mean scores for the QLI and the SIQLS were 22.8 and 7.3 respectively. Triangulation of the subjective and objective data established their congruence. The QLI scores suggested that people with early-stage dementia often perceived their current life as good and that the participants were as satisfied with their life as the general population. Their accounts also revealed that many had experienced stigma and that this appreciably affected their psychosocial wellbeing. The findings of this study provide new insights into the ways in which health-care professionals and the general public can and should view and treat people with dementia.

Analysing the Current Trends in Learning and Development

2015 ◽  
Vol 6 (1) ◽  
Author(s):  
Suruchi Pandey ◽  
Preeti Kerni
Keyword(s):  
Learning And Development ◽  
Group Discussions ◽  
Chi Square ◽  
Statistical Tool ◽  
Current Trends ◽  
Major Factors ◽  
Hr Managers ◽  
Total Turnover

Present paper is an attempt to understand the growing need for nurturing employees to build up human capital and adding value to business. Quality of employees, their development and retention are major factors in determining long-term profitability of business in todays scenario. Though researchers have observed such studies but this research helps to understand the current practices and changing trends which are prevailing in different sectors in Pune region and also demonstrates best practices being carried out in industries. A survey was conducted on 20 different companies and a questionnaire was administered to HR managers. Data was collected through personal interviews, focused group discussions with top management and employees. Statistical tool IBM SPSS 20 was used to analyze data more analytically. Tests performed were chi-square and correlation. In the course of study, it was found that most of the high technology companies prefer online training and low technology companies prefer classroom learning. Companies allocated a percentage of HR or total turnover budget towards training and development. Most of the companies tracked their cost of training through overall cost or budget expended and not for a particular participant or employee attending the training program or expected to attend.

Identity, mood, and quality of life in people with early-stage dementia

2012 ◽  
Vol 24 (8) ◽  
pp. 1306-1315 ◽  
Author(s):  
Lisa S. Caddell ◽  
Linda Clare
Keyword(s):  
Quality Of Life ◽  
Positive Impact ◽  
Early Stage ◽  
Well Being ◽  
Cross Sectional ◽  
Early Stages ◽  
The People ◽  
People With Dementia ◽  
Relationship Of

ABSTRACTBackground: There is little empirical research regarding the relationships between identity and well-being in people with dementia. The aim of the study was to explore the relationship of identity with mood and quality of life (QoL) in the people in the early stages of dementia.Method: This was a cross-sectional questionnaire-based study. Fifty people in the early stages of dementia completed measures pertaining to different aspects of identity, mood, and QoL. Multiple regression analyses were carried out to determine whether it was possible to predict any of the variance in mood and QoL from aspects of identity.Results: It was possible to predict 12.8% of the variance in anxiety, 23.4% of the variance in depression, and 25.1% of the variance in QoL from different aspects of identity. Predictors varied for each dependent variable.Conclusions: Aspects of identity predict a modest proportion of the variance in anxiety, depression, and QoL. This suggests that supporting identity in people with dementia who are experiencing difficulties in this regard might have a positive impact on mood and QoL. However, the majority of the variance in mood and QoL must be accounted for by other variables.

scholarly journals The practice and ethics of dementia care

2015 ◽  
Vol 27 (10) ◽  
pp. 1579-1581
Author(s):  
Henry Brodaty
Keyword(s):  
Quality Of Life ◽  
Service Delivery ◽  
End Of Life ◽  
Family Caregivers ◽  
Dementia Care ◽  
Policy Makers ◽  
People With Dementia ◽  
Dementia Research

The focus in dementia research on discovery of cause and cure often leaves the care part of the triad hidden from the spotlight. While clinicians, caregivers, and policy makers eagerly await these scientific developments, daily they face challenges in striving best for quality of life for people with dementia and their family caregivers. This issue of the Journal addresses six topics: three relate to service delivery – at assessment, in the community and at end of life; and one each focus on ethics, driving and suicidality.

scholarly journals Guest Editorial: Transforming dementia and end-of-life care by investing in learning and development

2013 ◽  
Vol 3 (2) ◽  
pp. 1-2
Author(s):  
Josie Tetley ◽  
◽  
Jan Draper ◽  
Keyword(s):  
Guest Editorial ◽  
Vital Role ◽  
Care Providers ◽  
Compassionate Care ◽  
Learning And Development ◽  
Complex Issue ◽  
People With Dementia ◽  
Wide Range ◽  
Informal Carers

Improving care for people with dementia is now recognised as an international priority. However, this is a complex issue as the quality of dementia care is dependent on a wide range of care-providers including registered practitioners, support staff and informal carers. In this guest editorial we discuss how learning and development can play a vital role in transforming care and equipping staff with the knowledge, skills and confidence they need in order to provide high quality, person-centred and compassionate care.

Quality-of-life in dementia: Assessment in low-and-middle income countries

2017 ◽  
Author(s):  
Kia-Chong Chua ◽  
Jan R. Böhnke ◽  
Martin Prince ◽  
Sube Banerjee
Keyword(s):  
Measurement Invariance ◽  
Core Component ◽  
Middle Income ◽  
Middle Income Countries ◽  
People With Dementia ◽  
Dementia Research ◽  
American Spanish ◽  
The Uk ◽  
Low And Middle Income

The global burden of dementia is disproportionately higher in low-and-middle income countries yet systematic assessments of health-related quality-of-life (HRQL) mostly rely on measures developed in the UK/US. A recent systematic review of dementia-specific HRQL measures concluded that none could be recommended without further linguistic validation. Using a unique dataset from the 10/66 Dementia Research Group, we conducted one of the first in-depth studies to investigate the measurement invariance of dementia-specific HRQL measures for low-and-middle income countries. HRQL of people with dementia was assessed by self-report (DEMQOL) and informant-report (DEMQOL-Proxy) in a community memory clinic in the UK and population cohort surveys of the 10/66 Dementia Research Group in the Dominican Republic, Mexico, Cuba, Peru and Venezuela. Measurement invariance between the UK English and Ibero-American Spanish versions was investigated using multiple-group confirmatory bifactor modelling. Our findings showed that UK and Latin America older adults differ in how they respond to “positive emotion” items in the DEMQOL and DEMQOL-Proxy. The remaining items of DEMQOL and DEMQOL-Proxy showed no major difference in conceptual meaning, sensitivity to individual differences, and standards of difficulty between the UK English and Ibero-American Spanish versions. Furthermore, we found that the core components of self- and informant appraisal of HRQL may differ. Negative emotion may be a core component in self-appraisal of HRQL whereas social functioning may be a core component in how informants appraise HRQL of people with dementia. Measurement invariance of translated HRQL assessment warrant continued investigation, particularly in low-and-middle income countries, where the societal and fiscal impact of dementia needs urgent attention.

A multicomponent psychosocial intervention among people with early-stage dementia involving physical exercise, cognitive stimulation therapy, psychoeducation and counselling: Results from a mixed-methods study

Dementia ◽  
2021 ◽  
pp. 147130122110406
Author(s):  
Sofie S Skov ◽  
Maj Britt D Nielsen ◽  
Rikke F Krølner ◽  
Laila Øksnebjerg ◽  
Sigurd M Rønbøl Lauridsen
Keyword(s):  
Quality Of Life ◽  
Pilot Study ◽  
Cognitive Functioning ◽  
Early Stage ◽  
Psychosocial Interventions ◽  
Cognitive Stimulation ◽  
Cognitive Stimulation Therapy ◽  
Multicomponent Intervention ◽  
People With Dementia

Background There is increasing awareness of the benefits of both physical and psychosocial interventions to empower and benefit people with dementia and their caregivers. However, the potential additional benefits of combining physical and psychosocial interventions have only been sparsely explored. The aim of this pilot study was to investigate the acceptability and potential impact of a multicomponent intervention comprising physical exercise, cognitive stimulation therapy (CST), psychoeducation and counselling for people with early-stage dementia. Design A 15-week multicomponent group-based intervention was offered to people with early-stage dementia in Denmark ( N = 44). A mixed-methods design combining interviews, observations, tests of cognitive and physical functioning and an interviewer-assisted questionnaire on quality of life was applied to (1) investigate acceptability of the intervention, including whether people with dementia and their caregivers found the intervention meaningful and (2) to explore and assess changes in participants’ physical and cognitive functioning and quality of life. The study was conducted between June 2018 and August 2019. Results The pilot study demonstrated that the multicomponent intervention was acceptable for people with early-stage dementia and their caregivers. Test results did not show significant changes in measures of participants’ physical and cognitive functioning or quality of life. However, qualitative data revealed that participants perceived the intervention as meaningful and found that it had a positive influence on their physical and social well-being. In addition, interaction and support from peers and staff members was considered important and rewarding. Conclusion This multicomponent intervention constitutes a meaningful and beneficial activity for people with early-stage dementia and their caregivers. It provides an opportunity to engage in social interactions with peers and experience professional support. The study also underlines the importance of providing prolonged and sustainable interventions for people with dementia to maintain personal and social benefits.

scholarly journals IDEA intervention to prevent depressive symptoms and promote well-being in early-stage dementia: protocol for a randomised controlled feasibility study

BMJ Open ◽  
2018 ◽  
Vol 8 (2) ◽  
pp. e021074 ◽  
Author(s):  
Remco Tuijt ◽  
Gill Livingston ◽  
Rebecca L Gould ◽  
Rebecca Jones ◽  
Elisabet Sole Verdaguer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Depressive Symptoms ◽  
Early Stage ◽  
Controlled Trial ◽  
Well Being ◽  
Psychological Interventions ◽  
Mild Dementia ◽  
People With Dementia ◽  
Randomised Controlled

ObjectiveDepressive symptoms are common among people with dementia, impacting quality of life and cognitive and functional decline. Currently, little is known about the acceptability and feasibility of psychological interventions for people with mild dementia, with recent reviews identifying the need for further evidence. Developing and evaluating psychological interventions to prevent and treat these symptoms is, therefore, an important clinical and research priority. This protocol describes a study testing the acceptability and feasibility of a manual-based behavioural activation (BA) intervention for preventing and treating depressive symptoms in people with mild dementia. The aim of this study is to explore the feasibility of conducting a pragmatic multicentre randomised controlled trial of clinical effectiveness of an eight-session intervention. The Intervention to prevent Depressive symptoms and promote well-being in EArly-stage dementia (IDEA) programme supports people with dementia and their family carers in identifying and scheduling enjoyable and meaningful activities.Methods and analysisSixty people who have received a diagnosis of dementia of any type in the last 6 months will be recruited via memory clinics. Further criteria are a Mini-Mental State Examination score of ≥20, and a family carer who can assist with the intervention. Consenting participants will be randomised in a ratio of 2:1 to BA or to treatment as usual. Analyses will estimate parameters such as rates of recruitment, retention and number of sessions completed. Questionnaires measuring depressive symptoms and quality of life for both the person with dementia and their carer will be completed at baseline, 3 and 6 months. Qualitative interviews will explore acceptability of the intervention, study procedures and experiences of the sessions.Ethics and disseminationThis study received a favourable ethical opinion from the London Camberwell St Giles Research Ethics Committee (16/LO/0540). We will disseminate findings at key conferences, the Alzheimer’s Society and University College London websites and local stakeholder events.Trial registration numberISRCTN75503960; Pre-results.

scholarly journals Support at Home: Interventions to Enhance Life in Dementia (SHIELD) – evidence, development and evaluation of complex interventions

2017 ◽  
Vol 5 (5) ◽  
pp. 1-184 ◽  
Author(s):  
Martin Orrell ◽  
Juanita Hoe ◽  
Georgina Charlesworth ◽  
Ian Russell ◽  
David Challis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Usual Care ◽  
Cost Effective ◽  
Home Treatment ◽  
Cognitive Stimulation ◽  
Treatment Manual ◽  
Family Carers ◽  
People With Dementia ◽  
Dementia Research

BackgroundDementia is a national priority and this research addresses the Prime Minister’s commitment to dementia research as demonstrated by his 2020 challenge and the new UK Dementia Research Institute. In the UK > 800,000 older people have dementia. It has a major impact on the lives of people with dementia themselves, on the lives of their family carers and on services, and costs the nation £26B per year. Pharmacological cures for dementias such as Alzheimer’s disease are not expected before 2025. If no cure can be found, the ageing demographic will result in 2 million people living with dementia by 2050. People with dementia lose much more than just their memory and their daily living skills; they can also lose their independence, their dignity and status, their confidence and morale, and their roles both within the family and beyond. They can be seen as a burden by society, by their families and even by themselves, and may feel unable to contribute to society. This programme of research aims to find useful interventions to improve the quality of life of people with dementia and their carers, and to better understand how people with dementia can be supported at home and avoid being admitted to hospital.Objectives(1) To develop and evaluate the maintenance cognitive stimulation therapy (MCST) for people with dementia; (2) to develop the Carer Supporter Programme (CSP), and to evaluate the CSP and Remembering Yesterday, Caring Today (RYCT) for people with dementia both separately and together in comparison with usual care; and (3) to develop a home treatment package (HTP) for dementia, to field test the HTP in practice and to conduct an exploratory trial.Methods(1) The MCST programme was developed for people with dementia based on evidence and qualitative work. A randomised controlled trial (RCT) [with a pilot study of MCST plus acetylcholinesterase inhibitors (AChEIs)] compared MCST with cognitive stimulation therapy (CST) only. The MCST implementation study conducted a trial of outreach compared with usual care, and assessed implementation in practice. (2) The CSP was developed based on existing evidence and the engagement of carers of people with dementia. The RCT (with internal pilot) compared the CSP and reminiscence (RYCT), both separately and in combination, with usual care. (3) A HTP for dementia, including the most promising interventions and components, was developed by systematically reviewing the literature and qualitative studies including consensus approaches. The HTP for dementia was evaluated in practice by conducting in-depth field testing.Results(1) Continuing MCST improved quality of life and improved cognition for those taking AChEIs. It was also cost-effective. The CST implementation studies indicated that many staff will run CST groups following a 1-day training course, but that outreach support helps staff go on to run maintenance groups and may also improve staff sense of competence in dementia care. The study of CST in practice found no change in cognition or quality of life at 8-month follow-up. (2) The CSP/RYCT study found no benefits for family carers but improved quality of life for people with dementia. RYCT appeared beneficial for the quality of life of people with dementia but at an excessively high cost. (3) Case management for people with dementia reduces admissions to long-term care and reduces behavioural problems. In terms of managing crises, staff suggested more costly interventions, carers liked education and support, and people with dementia wanted family support, home adaptations and technology. The easy-to-use home treatment manual was feasible in practice to help staff working in crisis teams to prevent hospital admissions for people with dementia.LimitationsGiven constraints on time and funding, we were unable to compete the exploratory trial of the HTP package or to conduct an economic evaluation.Future researchTo improve the care of people with dementia experiencing crises, a large-scale clinical trial of the home treatment manual is needed.ConclusionThere is an urgent need for effective psychosocial interventions for dementia. MCST improved quality of life and was cost-effective, with benefits to cognition for those on AChEIs. MCST was feasible in practice. Both CSP and RYCT improved the quality of life of people with dementia, but the overall costs may be too high. The HTP was useful in practice but requires evaluation in a full trial. Dementia care research may improve the lives of millions of people across the world.Trial registrationsCurrent Controlled Trials ISRCTN26286067 (MCST), ISRCTN28793457 (MCST implementation) and ISRCTN37956201 (CSP/RYCT).FundingThis project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research; Vol. 5, No. 5. See the NIHR Journals Library website for further project information.

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