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 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.

scholarly journals ‘I just want to get on with my life’: a mixed-methods study of active management of quality of life in living with dementia

2016 ◽  
Vol 38 (2) ◽  
pp. 378-402 ◽  
Author(s):  
CHARLOTTE L. CLARKE ◽  
SARAH E. KEYES ◽  
HEATHER WILKINSON ◽  
E. JOANNA ALEXJUK ◽  
JANE WILCOCKSON ◽  
...  
Keyword(s):  
Public Health ◽  
Quality Of Life ◽  
Mixed Methods ◽  
Active Management ◽  
Support Network ◽  
Health Concern ◽  
People With Dementia ◽  
Care Partners ◽  
Outcome Monitoring

ABSTRACTThe active management of the experience of living with dementia appears to improve quality of life despite the lack of disease modification. However, research to date has been largely of modest scale and explanatory factors for improvements have been under-conceptualised. Thus, although promulgated through national strategies, the evidence base is relatively weak. This paper reports on a nation-wide study of the influence of the National Dementia Strategy for England in relation to Dementia Adviser and Peer Support Network services in 40 demonstration sites. The research aimed to identify ways in which the services contribute to the wellbeing and resilience of people with dementia and care partners. A mixed-methods research design collected data through: activity and outcome monitoring; organisational surveys; in-depth case studies, including qualitative interviews with people with dementia (N = 47) and care partners (N = 54), wellbeing and quality of life measures, and interviews with staff and other stakeholders (N = 82). Three themes are explored: addressing individual and community needs; promoting independence, control and choice; and getting a life back. Services promoted independence, control and choice, and consequently enabled people to re-narrate their lives as purposeful within their communities. Ways in which these are achieved resemble the public health model of lay health advisor and this research adds to the imperative to approach dementia as a key public health concern.

Art museum-based intervention to promote emotional well-being and improve quality of life in people with dementia: The ARTEMIS project

Dementia ◽  
2017 ◽  
Vol 17 (6) ◽  
pp. 728-743 ◽  
Author(s):  
Arthur Schall ◽  
Valentina A Tesky ◽  
Ann-Katrin Adams ◽  
Johannes Pantel
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Art Museum ◽  
Cognitive Status ◽  
Medium Effect ◽  
Controlled Study ◽  
Subjective Well Being ◽  
People With Dementia ◽  
Care Partners

ARTEMIS (ART Encounters: Museum Intervention Study) is an art-based intervention designed especially for people with dementia and their care partners that involves a combination of museum visits and artistic activity. This paper reports the results of a randomized wait-list controlled study on the influence of the ARTEMIS intervention on the emotional state, well-being, and quality of life of dementia patients. People with mild-to-moderate dementia (n = 44) and their care partners (n = 44) visited the Frankfurt Städel Museum once a week on six pre-arranged occasions. The intervention consisted of six different guided art tours (60 minutes), followed by art-making in the studio (60 minutes). Independent museum visits served as a control condition. A mixed-methods design was used to assess several outcomes including cognitive status, emotional well-being, self-rated aspects of quality of life, and subjective evaluations by informal caregivers. In a pre-post-assessment, we found significant improvements in participants’ self-rated quality of life (t = −3.15, p < .05). In a situational assessment of emotional well-being immediately before and after each of the museum sessions, we were able to demonstrate statistically significant positive changes with medium effect sizes (dcorr = .74–.77). Furthermore, the total Neuropsychiatric Inventory score as well as the affective (depressed mood and anxiety) and apathy subscales were significantly lower after the ARTEMIS intervention (tNPI total = 2.43; tNPI affective = 2.24; tNPI apathy = 2.52; p < .05). The results show that art museum-based art interventions are able to improve the subjective well-being, mood, and quality of life in people with dementia. This promising psychosocial approach deserves further attention in future studies and consideration in community-based dementia care programs.

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 Stigma of Dementia During COVID-19: First Insights From a Twitter Study

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 961-962
Author(s):  
Juanita-Dawne Bacsu ◽  
Megan O'Connell ◽  
Alison Chasteen ◽  
Keyword(s):  
Critical Issue ◽  
Public Healthcare ◽  
Contributing Factors ◽  
Term Care ◽  
Search Terms ◽  
People With Dementia ◽  
Care Partners ◽  
Education And Awareness

Abstract Stigma is a critical issue that reduces the quality of life for people living with dementia and their care partners. Despite this knowledge, little research examines stigma of dementia, especially within the context of the COVID-19 pandemic. This presentation aims to: 1) identify the contributing factors of stigma against dementia during the COVID-19 pandemic; and 2) describe actions to challenge stigma of dementia. Using Twitter data, tweets were compiled with Python’s GetOldTweets application from February to September 2020. Search terms included keywords for dementia (e.g., Alzheimer’s) and COVID-19 (e.g., coronavirus). From the 20,800 tweets, filters were used to exclude irrelevant tweets. The remaining 5,063 tweets were analyzed by a group of coders with 1,743 tweets identified for further stigma-related coding. The 1,743 tweets were exported to Excel for thematic analysis and divided among 13 coders. Each tweet was coded independently by two reviewers to ensure intercoder reliability (e.g., 86%). Contributing factors of stigma of dementia included: ageism and devaluing the lives of people with dementia (e.g., ‘old and dying anyways’); misinformation and false beliefs (e.g., ‘COVID-19 vaccine causes dementia’); political dementia-related slander and ridicule (e.g., ‘dementia Joe’); and stigma within healthcare and long-term care organizations (e.g., pushing DNR orders). Globally, there is an urgent need for more dementia education and awareness targeted towards the general public, healthcare workers, and policymakers to reduce stigma against people living with dementia. Further research is necessary to explore the contributing factors and interventions to reduce stigma of dementia during the COVID-19 pandemic and beyond.

A qualitative exploration of family carer’s understandings of people with dementia’s expectations for the future

Dementia ◽  
2020 ◽  
pp. 147130122092954
Author(s):  
Sheridan T Read ◽  
Christine Toye ◽  
Dianne Wynaden
Keyword(s):  
Quality Of Life ◽  
Decision Making ◽  
Family Carers ◽  
Structured Interviews ◽  
Grounded Theory Method ◽  
People With Dementia ◽  
Care Partners ◽  
The Future ◽  
Constant Comparative Analysis

Background There is little evidence that outlines how family carers understand the person with dementia’s perspective, values and anticipated future needs. Whilst people with dementia should be consulted about their own quality of life and care values, carers – otherwise known as care partners – require such understandings to ensure that the support the person receives into the future upholds their quality of life and is consistent with what they desire. Aim This research aimed to explore and describe family carers’ experience of supporting the person with dementia to maintain their quality of life by understanding how carers developed an awareness and understanding of the person with dementia’s expectations for the future and what they believed was important for the person to whom they provided care. Method Using an application of the grounded theory method, data were collected from 21 carers during semi structured interviews and analysed using constant comparative analysis. Findings Four categories emerged from the data: Knowing the person, Process of decision making, Maintaining normalcy and quality of life and Out of their control. Discussion This study provides insights into how carers developed awareness of the expectations of people with dementia. Findings also illuminate carers’ perspectives of the changing nature of decision making during the dementia trajectory. Conclusion Understanding the perspective of the person living with dementia is essential to facilitate advocacy and support that is ‘person centred’ now and into the future. Assisting carers to incorporate this perspective into caring has the potential to be better facilitated by health professionals and merits further investigation.

scholarly journals Rehabilitation for people with dementia: a multi-method study examining knowledge and attitudes

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Kate E. Laver ◽  
Maria Crotty ◽  
Lee-Fay Low ◽  
Lindy Clemson ◽  
Craig Whitehead ◽  
...  
Keyword(s):  
Rehabilitation Services ◽  
Attitudes And Beliefs ◽  
Knowledge And Attitudes ◽  
Rehabilitation Programs ◽  
Experience Of Care ◽  
People With Dementia ◽  
Care Partners ◽  
Wide Range ◽  
Diagnosis Of Dementia

Abstract Background People with dementia are not routinely offered rehabilitation services despite experiencing disability associated with the condition and accumulating evidence for therapies such as exercise, occupational therapy, and cognitive or physical rehabilitation. It is important to understand the needs and preferences of people with dementia regarding rehabilitation services. The aim of this study was to explore thoughts and beliefs about rehabilitation amongst people with dementia and their families. Methods Interviews with people with dementia and family members regarding their experience of care following diagnosis and their attitudes and beliefs about rehabilitation for dementia. Surveys with older people with cognitive impairment and/or a diagnosis of dementia to determine preferences for services and understanding of rehabilitation programs. Results Interviews with 13 participants (n = 6 people living with dementia with mean age 60 and n = 7 care partners) revealed gaps in care post diagnosis. People reported having to seek out services and frequently sought out services which were rehabilitative in nature. Survey data (n = 91 participants, average age 82) showed that most people had heard of rehabilitation (92%) or had experience of rehabilitation (49%) at some point. There was a wide range of services identified as being beneficial. Rehabilitative interventions including case management, exercise and memory strategies were considered desirable. Conclusions People with dementia report having a wide variety of needs. There are gaps following diagnosis where people with dementia report having to seek out their own services. Some interview participants (who tended to be younger) clearly articulated the need for tailored interventions which maximised independence and quality of life. Survey participants, who were on average older, reported that they would participate in individually applicable rehabilitative therapies if they were available.

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.

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