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.

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.

Assistive Technologies and the Carers of People with Dementia

2016 ◽  
Vol 5 (1) ◽  
pp. 45-59
Author(s):  
Sarmishtha Bhattacharyya ◽  
Susan Mary Benbow
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Assistive Technologies ◽  
Narrative Review ◽  
People With Dementia ◽  
Technological Interventions ◽  
Informal Carers

Assistive technologies have a role in supporting both formal and informal carers of people with dementia, and in maintaining the independence, and quality of life of both people with dementia and their carers. The authors report a narrative review of the use of technological interventions to empower the carers of people with dementia, and relate this to a model of ageing well. They argue that this highlights the importance of empowering and connecting with carers in order to increase their participation and connection in the care of their relative/client; and conclude that both empowerment and connection contribute to maintaining autonomy and well-being of both carers and people with dementia. Technological interventions should not be used as alternatives to connection. The emphasis in practice should be on empowering and connecting with both carers and people with dementia.

How Are You Feeling? Who Wants To Know? Patients’ and Oncologists’ Preferences for Discussing Health-Related Quality-of-Life Issues

2000 ◽  
Vol 18 (18) ◽  
pp. 3295-3301 ◽  
Author(s):  
S.B. Detmar ◽  
N.K. Aaronson ◽  
L.D. V. Wever ◽  
M. Muller ◽  
J.H. Schornagel
Keyword(s):  
Quality Of Life ◽  
Health Care Providers ◽  
Physical Symptoms ◽  
Psychosocial Issues ◽  
Care Providers ◽  
Health Related Quality ◽  
Wide Range ◽  
Related Quality ◽  
Health Related

PURPOSE: This study investigated (1) the attitudes of cancer patients toward discussing health-related quality-of-life (HRQL) issues; (2) the association between such attitudes and patients’ characteristics; and (3) oncologists’ attitudes and self-reported behavior regarding these same issues. PATIENTS AND METHODS: Two hundred seventy-three patients receiving palliative chemotherapy and ten physicians were asked to complete a series of questionnaires. RESULTS: Almost all patients wanted to discuss their physical symptoms and physical functioning and were also willing to address their emotional functioning and daily activities. However, 25% of the patients were only willing to discuss these latter two issues at the initiative of their physician. Patients varied most in their willingness to discuss their family and social life, with 20% reporting no interest in discussing these issues at all. Female patients were more reluctant to discuss various HRQL issues than male patients. Older and less well-educated patients were more likely to prefer that their physician initiate discussion of HRQL issues. All physicians considered it to be primarily their task to discuss the physical aspects of their patients’ health, whereas four physicians indicated that discussion of psychosocial issues was a task to be shared with other health care providers. All physicians indicated that they generally defer to their patients in initiating discussion of psychosocial issues. CONCLUSION: Although both patients and oncologists seem willing to discuss a wide range of HRQL issues, communication regarding psychosocial issues may be hampered by competing expectations as to who should take the lead in initiating such discussions.

Safe Quality of Service Aware Management of Heterogeneous Sensor Networks

2006 ◽  
Vol 07 (01) ◽  
pp. 179-193 ◽  
Author(s):  
Mohamed Younis ◽  
Waleed Youssef ◽  
Mohamed Eltoweissy ◽  
Stephan Olariu
Keyword(s):  
Quality Of Service ◽  
Network Performance ◽  
Vital Role ◽  
Heterogeneous Sensor Networks ◽  
Evolutionary Neural Network ◽  
Wide Range ◽  
Pervasive Service ◽  
Potential Damage

Wireless networked sensors are envisioned to play a vital role in the emerging pervasive service platforms that will instrument a wide range of next generation civil and military applications. Recently, we have proposed ANSWER: AutoNomouS Wireless sEnsor netwoRk as a service platform whose mission is to provide dependable information services to in-situ mobile users while satisfying their quality-of-service (QoS) requirements. Alongside with the stationary tiny sensors, the network employs more powerful mobile devices referred to as aggregation and forwarding nodes (AFNs). ANSWER exploits AFN mobility to support QoS requirements. However, as an AFN moves closer to an event (for example, a hazardous spill), it may be at risk (for example, due to potential damage). In this paper, we present a quantitative analysis of the interplay and balance between QoS support and asset safety. We propose a new scheme, called SAFER (for SAFEty-aware Relocation), which pursues relocation of the AFN in order to boost network performance without unnecessarily compromising AFN safety. For the relocation process to take place, SAFER uses historical data on detected events and employs an evolutionary neural network to assess the risk involved and predict good quality new position(s). Experimental results demonstrate the effectiveness of SAFER.

A Look at the Private Practice of the Future

PEDIATRICS ◽  
1995 ◽  
Vol 96 (4) ◽  
pp. 812-816 ◽  
Author(s):  
Lawrence F. Nazarian
Keyword(s):  
Health Care Providers ◽  
Negative Impact ◽  
Pediatric Care ◽  
Independent Practice ◽  
Care Providers ◽  
Psychosocial Disorders ◽  
Wide Range ◽  
The Future ◽  
Care Systems

Powerful trends that have influenced pediatric care in recent decades will sweep us into the new century. By looking at the major forces at work today, we can predict where we will be 10 years from now. As infectious diseases continue to decline, psychosocial disorders will take a larger share of the pediatrician's efforts. Technology will allow more effective management, but it will require strong commitment to ongoing education. More children with chronic conditions and more young adults will fall under the care of pediatricians. Prevention will retain a central role in practice. Maintaining an independent practice will become more difficult, and a wide range of delivery schemes will emerge. Relationships among pediatricians and relationships with other health care providers will be influenced significantly by these systems, which carry potential for both positive and negative impact on the quality of care and on the lifestyles of pediatricians. It is crucial that pediatricians take an active and committed role in shaping the evolution of care systems, thereby making the future what it should be for children.

Carers of People with Dementia and the Use of Assistive Technologies

2015 ◽  
pp. 1425-1448
Author(s):  
Sarmishtha Bhattacharyya ◽  
Susan Mary Benbow
Keyword(s):  
Quality Of Life ◽  
Ethical Dilemmas ◽  
Well Being ◽  
Assistive Technologies ◽  
People With Dementia ◽  
Technological Interventions ◽  
Informal Carers

Assistive technologies have a role in supporting both formal and informal carers of people with dementia. Whilst assistive technologies have a role in maintaining the independence and quality of life of both people with dementia and their carers, their use has both disadvantages and advantages, can pose challenges for all concerned, and raises ethical dilemmas. In this chapter, a model derived from Arnstein's ladder of participation is used to highlight the importance of empowering and connecting with carers in order to increase their participation in the care of their relative or client. Empowerment and connection contribute to maintaining the autonomy and well-being of both carers and people with dementia: technological interventions should not be used as alternatives to connection. The emphasis in practice should be on empowering and connecting with both carers and people with dementia.

scholarly journals Creative Art Therapy as a Non-Pharmacological Intervention for Dementia: A Systematic Review

2021 ◽  
pp. 1-12
Author(s):  
Shayla Y.M. Emblad ◽  
Elizabeta B. Mukaetova-Ladinska
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Art Therapy ◽  
Challenging Behavior ◽  
Psychological Symptoms ◽  
Pharmacological Intervention ◽  
People With Dementia ◽  
Creative Art ◽  
Informal Carers

Background: Non-pharmacological therapies have been shown to be effective in managing challenging behavior in people with dementia. However, the efficacy of art therapy has yet to be determined. Objective: In the present systematic review, we evaluate the efficacy of art therapy as a non-pharmacological intervention for dementia and examine whether art therapy improves wellbeing and quality of life while decreasing biological and psychological symptoms of dementia (BPSD). Methods: Research undertaken between 2015 and 2020 was examined and a total of seventeen studies met the specified search criteria, with 853 participants (657 people with dementia, 180 formal and informal carers, and 16 volunteers) involved. Results: We identified four outcome domains: wellbeing, quality of life, BPSD, and cognitive function. One or more significant outcomes as having an impact on the efficacy of the intervention were reported in 88% (15/17) of the studies, whereas 17% (3/17) demonstrated significant outcomes across quality of life, wellbeing, and BPSD. Conclusion: People with dementia benefit from art therapy. These interventions when incorporating elements of being ‘in the moment’ increase opportunities for communication between people with dementia and their caregiver(s) and facilitate person-centered therapeutic activities.

scholarly journals Using Twitter to understand the COVID-19 experiences of people living with dementia (Preprint)

2020 ◽  
Author(s):  
Juanita Dawne Bascu ◽  
Megan O'Connell ◽  
Allison Cammer ◽  
Mahsa Azizi ◽  
Karl Grewal ◽  
...  
Keyword(s):  
Thematic Analysis ◽  
Formal Care ◽  
Collaborative Approach ◽  
Care Providers ◽  
People With Dementia ◽  
Care Partners

BACKGROUND The COVID-19 pandemic is affecting people with dementia in numerous ways. Nevertheless, there is a paucity of research on the COVID-19 impact on people with dementia and their care partners. OBJECTIVE Using Twitter, the purpose of this study was to understand the experiences of COVID-19 of people living with dementia and their care partners. METHODS We collected tweets on COVID-19 and dementia using the GetOldTweets application in Python from February 15 to September 7, 2020. Thematic analysis was used to analyze the tweets. RESULTS From the 5,063 tweets analyzed with line by line coding, we identified four main themes including: i) separation and loss; ii) COVID confusion, despair, and abandonment; iii) stress and exhaustion exacerbation; and iv) unpaid sacrifices by formal care providers. CONCLUSIONS There is an imminent need for governments to rethink using a one-size-fits-all response to COVID-19 policy and use a collaborative approach to support people with dementia. Collaboration and more evidence-informed research are essential to reducing COVID-19 mortality and improving the quality of lives for people with dementia and their care partners.

scholarly journals Modifiable Risk Factors of Behavioral and Psychological Symptoms in People with Dementia

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 648-649
Author(s):  
Shinae Seo ◽  
Meghan Mattos
Keyword(s):  
Risk Factors ◽  
Psychological Symptoms ◽  
Community Dwelling ◽  
Modifiable Risk Factors ◽  
Care Providers ◽  
Dyadic Relationship ◽  
People With Dementia ◽  
The Individual ◽  
Behavioral And Psychological Symptoms

Abstract Over ninety percent of people with dementia (PWD) experience behavioral and psychological symptoms, known to increase burden on care providers and healthcare systems. The purpose of this integrative review was to examine the modifiable risk factors of behavioral and psychological symptoms of dementia (BPSD) at the individual, caregiver, and environmental levels. An electronic database search was performed using PubMed, CINAHL[EBSCO], Web of Science, and PsycINFO from 2010-2020. Search terms included “dementia” AND (“Behavioral” OR “Behavioural” OR “Psychological” OR “Neuropsychiatric”) AND “symptoms” AND (“Independent Living” OR “Community Dwelling” OR “Community Living” OR “Living at Home” OR “Ageing in Place.” The search yielded 1,121 articles, and 14 articles were included in this review. Among the 14 articles, there were 11 modifiable risk factors presented across the individual, caregiver, and environmental levels. Individual-level factors included the presence of affective disorder, low quality of life, and leisure dysfunction. The modifiable caregiver-level factors included relationship with PWD, frequency of contact, caregiver burden, distress, frustration level, caregiver as a resource for PWD, and quality of dyadic relationship. One environmental factor, the presence of pandemic disease (e.g., COVID 19), was identified. This review presents the modifiable factors that contribute to the varied symptoms and multi domains of BPSD. Further research is necessary to determine whether, and to what degree, interventions targeting individual, caregiver, or environmental risk factors may reduce BPSD for PWD, caregivers, and providers within the community setting.

scholarly journals Using Twitter to Understand the COVID-19 Experiences of People With Dementia: Infodemiology Study

10.2196/26254 ◽  
2021 ◽  
Vol 23 (2) ◽  
pp. e26254
Author(s):  
Juanita-Dawne Bacsu ◽  
Megan E O'Connell ◽  
Allison Cammer ◽  
Mahsa Azizi ◽  
Karl Grewal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Thematic Analysis ◽  
Formal Care ◽  
Collaborative Approach ◽  
Care Providers ◽  
People With Dementia ◽  
Care Partners

Background The COVID-19 pandemic is affecting people with dementia in numerous ways. Nevertheless, there is a paucity of research on the COVID-19 impact on people with dementia and their care partners. Objective Using Twitter, the purpose of this study is to understand the experiences of COVID-19 for people with dementia and their care partners. Methods We collected tweets on COVID-19 and dementia using the GetOldTweets application in Python from February 15 to September 7, 2020. Thematic analysis was used to analyze the tweets. Results From the 5063 tweets analyzed with line-by-line coding, we identified 4 main themes including (1) separation and loss; (2) COVID-19 confusion, despair, and abandonment; (3) stress and exhaustion exacerbation; and (4) unpaid sacrifices by formal care providers. Conclusions There is an imminent need for governments to rethink using a one-size-fits-all response to COVID-19 policy and use a collaborative approach to support people with dementia. Collaboration and more evidence-informed research are essential to reducing COVID-19 mortality and improving the quality of life for people with dementia and their care partners.

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