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 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 ‘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.

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 Impact of Untimely Access to Formal Care on Costs and Quality of Life in Community Dwelling People with Dementia

2018 ◽  
Vol 66 (3) ◽  
pp. 1165-1174 ◽  
Author(s):  
Niels Janssen ◽  
Ron L. Handels ◽  
Anders Sköldunger ◽  
Bob Woods ◽  
Hannah Jelley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Community Dwelling ◽  
Formal Care ◽  
People With Dementia

scholarly journals Facing Costs With Dementia: Daily Lives Perspectives From Informal Caregivers

2020 ◽  
Author(s):  
Patrícia Lindeza ◽  
Ana Virgolino ◽  
Osvaldo Santos ◽  
Manuela Guerreiro ◽  
Mário Rosa
Keyword(s):  
Quality Of Life ◽  
Informal Caregivers ◽  
Formal Care ◽  
Theory Approach ◽  
Psychosocial Burden ◽  
Daily Lives ◽  
Care Services ◽  
People With Dementia ◽  
The Impact

Abstract Background: Caregivers of people with dementia report stress, depression and economic burden compared to other caregivers. This study aimed to characterize the daily lives experiences of dementia patients’ informal caregivers and to uncover day-to-day sources of expenses related with dementia care. Research design and methods: Qualitative observational study, following a grounded theory approach. Data were collected with semi-structured focus groups with informal caregivers of persons with dementia. Discussed themes included changes in daily lives, formal care services utilization, quality of life and costs. Content analysis was conducted with Charmaz’s line-by-line open coding procedure.Results: Overall, 14 relatives of persons with dementia were included. Most of participants were female (12) and eight of them were daughters of the patient. Ages ranged from 39 to 84 years and eight had a high degree of education. Four of the caregivers were professionally active and the range of years assuming the role of main informal caregiver varied from two to 15 years. Conclusions: Findings provide insight into the daily life experience of caring for a person with dementia, while revealing the impact on the quality of life of caregivers. The individual sociodemographic and psychosocial characteristics, together with a lack of adapted formal care services and low financial aid leaded to a high burden experience for these caregivers. A multidirectional approach addressing caregivers needs, while improving formal care services and creating social and financial support programmes for families affected by dementia is required to decrease its financial and psychosocial burden.

scholarly journals How Singing can Help People With Dementia and Their Family Care-Partners: A Mixed Studies Systematic Review With Narrative Synthesis, Thematic Synthesis, and Meta-Integration

2021 ◽  
Vol 12 ◽  
Author(s):  
Zara Thompson ◽  
Felicity A. Baker ◽  
Jeanette Tamplin ◽  
Imogen N. Clark
Keyword(s):  
Quality Of Life ◽  
Quantitative Data ◽  
Qualitative Data ◽  
Well Being ◽  
Narrative Synthesis ◽  
Thematic Synthesis ◽  
People With Dementia ◽  
Care Partners ◽  
The Impact

Background: Recent research on the efficacy of music-based interventions for people with dementia have focused on specific outcomes and methods, and singing has been noted as a particularly beneficial activity. However, due to heterogeneity of research methods, there is a need to synthesise the findings of both quantitative and qualitative research in order to better understand both the impact and potential mechanisms of singing for people in this population.Method: This systematic review included quantitative, qualitative and mixed-methods studies, and analysed these using a systematic mixed-studies synthesis (with a results-based convergent approach). Quantitative and qualitative data were initially synthesised using a narrative synthesis and thematic synthesis method, respectively, before a final meta-integration method was used to synthesise common themes across the two data forms.Results: Electronic and hand search strategies revealed 1,815 relevant studies, 40 of which met the full eligibility criteria. Narrative synthesis of quantitative data revealed six key outcome areas (quality of life; psychological well-being; cognition; engagement; activities of daily living; care-partner well-being), and thematic synthesis of qualitative data generated seven themes relating to the impact and mechanisms of singing (pragmatic elements; social benefits; mood; identity; memory; flow-on effects; and relationships). Meta-integration identified four key areas relating to the impact and mechanisms of singing for people with dementia and care-partners: psychological well-being, quality of life, cognition, and care-partner well-being.Conclusion: Results from the syntheses suggest that singing can positively impact the lives of people with dementia and their care-partners, although due to heterogeneity of study design and outcome measures, it is difficult to draw conclusions based on quantitative data alone. Qualitative data provides further context and insights from participant perspectives, and when integrated with quantitative data, contextual factors that may influence the benefits that participants experience from singing are revealed.

Perceived Overprotection and Its Association With Quality of Life in Dementia

GeroPsych ◽  
2019 ◽  
Vol 32 (3) ◽  
pp. 125-134
Author(s):  
Mechthild Niemann-Mirmehdi ◽  
Andreas Häusler ◽  
Paul Gellert ◽  
Johanna Nordheim
Keyword(s):  
Quality Of Life ◽  
Patient Autonomy ◽  
Positive Association ◽  
Well Being ◽  
Negative Association ◽  
Significant Positive Association ◽  
Cross Sectional ◽  
People With Dementia ◽  
Mental Well Being

Abstract. To date, few studies have focused on perceived overprotection from the perspective of people with dementia (PwD). In the present examination, the association of perceived overprotection in PwD is examined as an autonomy-restricting factor and thus negative for their mental well-being. Cross-sectional data from the prospective DYADEM study of 82 patient/partner dyads (mean age = 74.26) were used to investigate the association between overprotection, perceived stress, depression, and quality of life (QoL). The analyses show that an overprotective contact style with PwD has a significant positive association with stress and depression, and has a negative association with QoL. The results emphasize the importance of avoiding an overprotective care style and supporting patient autonomy.

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