How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

Baalen, Angela van; Vingerhoets, A.J.J.M.; Sixma, H.; Lange, J. de

doi:10.1177/1471301210369320

Cited by 36 publications

(50 citation statements)

References 66 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Diminishing capacity among people with Down syndrome over the 3‐year period was not an indicator of a person's inability to contribute to the research and findings concur with van Baalen, Vingerhoets, Sixma, and de Lange () and Boxhall and Ralph () who maintained that marginalized groups, including people with intellectual disabilities, have much to contribute in research, if given the opportunity. The latter suggested that new developments are required in visual methodologies to support the inclusion of participants with more complex needs.…”

Section: Discussionsupporting

confidence: 75%

Investigating the Lived Experience of People with Down Syndrome with Dementia: Overcoming Methodological and Ethical Challenges

Watchman

2016

Policy Practice Intel Disabi

View full text Add to dashboard Cite

Adults with Down syndrome are at increased risk of dementia at a significantly younger age and remain under-represented as participants in dementia-related research. Because little is known about their personal experiences either immediately postdiagnosis or as dementia progresses, there is little opportunity that shared individual experiences can shape future policy and practice. To remedy this omission, the author examined methodological and ethical challenges identified as part of a research study that included people with Down syndrome affected by dementia. It has been contended that traditional qualitative approaches are less effective when participants are affected by changing cognitive functioning and reduced verbal communication. To counteract this contention overt participant observation and an adapted narrative research method were used as part of a three-year longitudinal study to help better understand the lived experiences of three adults with Down syndrome affected by dementia. Methodological and ethical challenges were shown to collide, and factors contributing to this effect included identifying process consent, accurate representation of participants, the role of and relationship with the researcher, participants, lack of awareness of their diagnosis of dementia, and need to recognize the importance of social interaction while maintaining academic rigor. Reflections are proffered on two conceptual and practice issues, with a call for both to be recognized and addressed in terms of future policy and practice. First is a lack of awareness of a sense of “self” or identity, resulting in individuals with Down syndrome and dementia being defined by their situation rather than individual preference or need. Second is the lack of information postdiagnosis about dementia being shared with people who have Down syndrome

show abstract

Section: Discussionsupporting

confidence: 75%

Investigating the Lived Experience of People with Down Syndrome with Dementia: Overcoming Methodological and Ethical Challenges

Watchman

2016

Policy Practice Intel Disabi

View full text Add to dashboard Cite

show abstract

“…10,11 Clinicians usually attempt to elicit this type of subjective information from their patients in the course of providing care. Researchers have examined self-reported data of persons with cognitive impairment in reference to a range of phenomena including subjective experiences with care, 12 perceptions of overall QoL, 13,14 and pain. 15 In particular, among individuals with mild to moderate dementia, self- rated QoL was correlated with behavioral observations of pain and restraint, 13,14 but informants tended to underrate QoL of individuals with dementia.…”

Section: Introductionmentioning

confidence: 99%

Cognitive Function and Oral Health–Related Quality of Life in Older Adults

Lee

Plassman

2013

J American Geriatrics Society

View full text Add to dashboard Cite

Objectives To examine the relationship between cognitive function and self-reported oral health-related quality of life (QoL) in community dwelling older adults. Design Cross-sectional Setting Community in West Virginia Participants Two hundred twenty six community-dwelling older adults Measurements Oral health-related QoL was measured by the Geriatric Oral Health Assessment Index (GOHAI) (score range of 12 to 60) and cognitive function was assessed using comprehensive neuropsychological test battery. Oral health examinations were performed by dental professionals. Results Participants with normal cognitive function had higher GOHAI total scores (mean: 55.1), indicating better oral health-related QoL, than participants with cognitive impairment without dementia (CIND) (mean: 52.3) and mild dementia (mean: 51.0). The difference remained significant after controlling for covariates including socio-demographics, health status, comorbidity, and clinical dental status. Conclusion Oral health-related QoL, as measured by the GOHAI, was better among those with normal cognitive function compared to those with CIND and those with mild dementia in the population we studied.

show abstract

“…Art does not always give up its meaning easily, and the kind of meaning-making that takes place when we 'do art' happens at unexpected times and places: within the practice of the artist or in the production of an artwork, in a momentary interaction experienced by an individual engaging with art or with an arts practitioner or subsequently in the 'story' of that individual. Recognising, capturing and then making sense of significant moments so that they may be evaluated can be difficult, particularly when the person engaging with art has diminished cognitive ability, language skills and difficulties with attention (van Baalen, Vingerhoets, Sixma, & de Lange, 2010). This point is illustrated in a project exploring art-viewing and making in a US art gallery in which a care partner reportedly told the researcher that a person with dementia had not understood what was going on during the art-viewing phase of an activity (Burnside et al, 2015).…”

Section: How Is Meaning Communicated and Interpreted?mentioning

confidence: 99%

Critical reflections on methodological challenge in arts and dementia evaluation and research

et al. 2017

View full text Add to dashboard Cite

Methodological rigour, or its absence, is often a focus of concern for the emerging field of evaluation and research around arts and dementia. However, this paper suggests that critical attention should also be paid to the way in which individual perceptions, hidden assumptions and underlying social and political structures influence methodological work in the field. Such attention will be particularly important for addressing methodological challenges relating to contextual variability, ethics, value judgement, and signification identified through a literature review on this topic. Understanding how, where and when evaluators and researchers experience such challenges may help to identify fruitful approaches for future evaluation.

show abstract

How to evaluate quality of care from the perspective of people with dementia: An overview of the literature

Cited by 36 publications

References 66 publications

Investigating the Lived Experience of People with Down Syndrome with Dementia: Overcoming Methodological and Ethical Challenges

Investigating the Lived Experience of People with Down Syndrome with Dementia: Overcoming Methodological and Ethical Challenges

Cognitive Function and Oral Health–Related Quality of Life in Older Adults

Critical reflections on methodological challenge in arts and dementia evaluation and research

Contact Info

Product

Resources

About