scholarly journals ARTZ @ Jefferson: How Arts-Based Experiences Support People With Dementia as Mentors and Aid in Dignity Preservation

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 842-842
Author(s):  
Susan Shifrin ◽  
Florence Gelo ◽  
Anne Mitchell
Keyword(s):  
Social Engagement ◽  
Lived Experiences ◽  
Life Experiences ◽  
Patient Relationship ◽  
Mutual Respect ◽  
Student Interactions ◽  
People With Dementia ◽  
Care Partners ◽  
Individual Conversations

Abstract ARTZ @ Jefferson positions people with dementia and care partners as authorities about their lived experiences; arts-based experiences assist them in communicating with and mentoring health-professions students about those lived experiences. Since Spring 2016, over 100 students have been mentored by people with dementia and their care partners. Their first encounters take place in museum galleries, through facilitated conversations about works of art. Over the next six to eight weeks, students and mentors build relationships through group meetings and individual conversations. Post course surveys demonstrated that nearly 100% of students indicated their increased ability to value listening and listen to others, enhanced the healthcare provider/patient relationship, and prioritized patients’ life experiences. The majority of mentors noted that student interactions added to their quality of life, social engagement and sense of purpose. Preliminary outcomes suggest that arts-based experiences establish mutual respect and empathy between people with dementia and students.

scholarly journals The experience of care partners of patients with Parkinson’s disease psychosis

PLoS ONE ◽  
2021 ◽  
Vol 16 (3) ◽  
pp. e0248968
Author(s):  
Sneha Mantri ◽  
Emily Klawson ◽  
Steven Albert ◽  
Robyn Rapoport ◽  
Chelle Precht ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Lived Experiences ◽  
Emotional Reactions ◽  
Medical System ◽  
Telephone Interviews ◽  
Experience Of Care ◽  
Sources Of Knowledge ◽  
Care Partners

Background Parkinson’s disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP. Objective To understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis. Methods This was a qualitative study of semi-structured telephone interviews. Recruitment was conducted online via the clinical study matching tool, Fox Trial Finder; study activities took place remotely via telephone interviews. Transcripts of the phone interviews were analyzed by grounded theory methods, and a codebook of key themes that emerged from the analysis was developed. Results Nine care partners (all female) were interviewed. Discussion topics in the codebook included (1) care partner burden and guilt; (2) communication with medical professionals; (3) coping strategies; (4) emotional reactions of the care partner to psychosis; (5) sources of knowledge about PD psychosis; (6) attitudes towards medications for PDP; (7) strategies to care for loved ones with psychosis; (8) psychosis triggers. Conclusions This qualitative analysis uncovers important aspects of the care partner experience, including challenges in navigating the medical system and communicating with professionals. Providers treating patients with PDP should be aware of these constraints and provide added support for strained care partners.

scholarly journals Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia

2018 ◽  
Vol 48 (13) ◽  
pp. 2130-2139 ◽  
Author(s):  
Anthony Martyr ◽  
Sharon M. Nelis ◽  
Catherine Quinn ◽  
Yu-Tzu Wu ◽  
Ruth A. Lamont ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Life Satisfaction ◽  
Social Engagement ◽  
Meta Analysis ◽  
Well Being ◽  
Factors Associated ◽  
Living Well ◽  
People With Dementia

AbstractCurrent policy emphasises the importance of ‘living well’ with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1–0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.

scholarly journals The Experience of Care Partners of Patients with Parkinsonism and Psychosis

2021 ◽  
Author(s):  
Sneha Mantri ◽  
Emily Klawson ◽  
Steven Albert ◽  
Robyn Rapoport ◽  
Chelle Precht ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lived Experiences ◽  
Emotional Reactions ◽  
Medical System ◽  
Medical Professionals ◽  
Telephone Interviews ◽  
Experience Of Care ◽  
Sources Of Knowledge ◽  
Care Partners

ABSTRACTBackgroundParkinson’s disease psychosis (PDP) has a major impact on quality of life and care partner burden; however, little is known about the lived experiences of care partners in managing PDP.ObjectiveTo understand how care partners of individuals with PDP experience their role and articulate their needs related to psychosis.MethodsThis was a qualitative study of semi-structured telephone interviews. Recruitment was conducted online via the clinical study matching tool, Fox Trial Finder; study activities took place remotely via telephone interviews. Transcripts of the phone interviews were analyzed by grounded theory methods, and a codebook of key themes that emerged from the analysis was developed.ResultsNine care partners (all female) were interviewed. Discussion topics in the codebook included (1) care partner burden and guilt; (2) communication with medical professionals; (3) coping strategies; (4) emotional reactions of the care partner to psychosis; (5) sources of knowledge about PD psychosis; (6) attitudes towards medications for PDP; (7) strategies to care for loved ones with psychosis; (8) psychosis triggers.ConclusionsThis qualitative analysis uncovers important aspects of the care partner experience, including challenges in navigating the medical system and communicating with professionals. Providers treating patients with PDP should be aware of these constraints and provide added support for strained 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 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.

scholarly journals Strategies to support engagement and continuity of activity during mealtimes for families living with dementia; a qualitative study

2021 ◽  
Author(s):  
Heather H. Keller ◽  
Lori Schindel Martin ◽  
Sherry Dupuis ◽  
Holly Reimer ◽  
Rebecca Genoe
Keyword(s):  
Qualitative Study ◽  
Social Engagement ◽  
Family Care ◽  
Further Education ◽  
Older Person ◽  
Care Partners ◽  
The Moment ◽  
Person With Dementia ◽  
Family Mealtimes

Background Mealtimes are an essential part of living and quality of life for everyone, including persons living with dementia. A longitudinal qualitative study provided understanding of the meaning of mealtimes for persons with dementia and their family care partners. Strategies were specifically described by families to support meaningful mealtimes. The purpose of this manuscript is to describe the strategies devised and used by these families living with dementia. Methods A longitudinal qualitative study was undertaken to explore the meaning and experience of mealtimes for families living with dementia over a three-year period. 27 families [older person with dementia and at least one family care partner] were originally recruited from the community of South-Western Ontario. Individual and dyad interviews were conducted each year. Digitally recorded transcripts were analyzed using grounded theory methodology. Strategies were identified and categorized. Results Strategies to support quality mealtimes were devised by families as they adapted to their evolving lives. General strategies such as living in the moment, as well as strategies specific to maintaining social engagement and continuity of mealtime activities were reported. Conclusions In addition to nutritional benefit, family mealtimes provide important opportunities for persons with dementia and their family care partners to socially engage and continue meaningful roles. Strategies identified by participants provide a basis for further education and support to families living with dementia.

scholarly journals Psychometric Properties and Factor Analysis of the Engagement and Independence in Dementia Questionnaire (EID-Q)

2018 ◽  
Vol 46 (3-4) ◽  
pp. 119-127 ◽  
Author(s):  
Charlotte R. Stoner ◽  
Martin Orrell ◽  
Aimee Spector
Keyword(s):  
Quality Of Life ◽  
Factor Analysis ◽  
Psychometric Properties ◽  
Internal Consistency ◽  
Social Engagement ◽  
Convergent Validity ◽  
Factor Solution ◽  
Adequate Model ◽  
People With Dementia

Background/Aims: Independence and social engagement are important outcomes for people with dementia. The aim of this study was to conduct an in-depth psychometric assessment of the Engagement and Independence in Dementia Questionnaire (EID-Q), a measure of social independence. Methods: This was an observational study at five NHS sites across England. Participants completed the EID-Q alongside additional measures. Psychometric analysis included internal consistency, test-retest reliability, convergent validity, and factor analyses. Results: A total of 225 people living with dementia completed the study. Internal consistency was excellent (α = 0.921) and the measure remained moderately stable over a 1-week period (ICC = 0.768). Significant correlations were observed between quality of life (r = 0.682) and depression (r = –0.741; both p < 0.001), indicating the importance of these concepts for wellbeing in dementia. Factor analysis indicated the presence of five factors which loaded onto a second order two-factor solution. These latent factors were named “sense of independence” and “social engagement.” Conclusions: The EID-Q demonstrated acceptable psychometric properties and the factor solution had an adequate model fit. The strong correlations suggest that social independence is strongly related to depression and quality of life. Future work will entail an analysis of responsiveness to intervention and further large-scale work.

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.

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