How Dementia Affects Personal Dignity: A Qualitative Study on the Perspective of Individuals With Mild to Moderate Dementia: Table 1.

Gennip, Isis E. van; Pasman, H. Roeline W.; Oosterveld-Vlug, Mariska; Willems, Dick L.; Onwuteaka-Philipsen, Bregje D.

doi:10.1093/geronb/gbu137

Cited by 46 publications

(62 citation statements)

References 53 publications

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“…Recent qualitative studies have privileged the voices of people living with dementia [24], exploring the impact of dementia upon quality of life [25] and dignity [26]. None have directly considered how people living with dementia in their own homes feel they can best achieve independence.…”

Section: Introductionmentioning

confidence: 99%

“I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

et al. 2020

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Background: Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this. Methods: We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England. Results: We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals' accounts prioritised autonomy and 'living well with dementia', while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk. Discussion: Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining selfmanagement with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk.

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Section: Introductionmentioning

confidence: 99%

“I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

et al. 2020

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“…According to previous literature [37,38], there is a discrepancy between caregiver and patient perspectives, and caregivers may have a more negative perspective regarding the function and daily life of patients. According to a qualitative analysis of in-depth interviews with people with dementia [39], a key factor in preserving personal dignity is engagement in meaningful activities within the safe and secure environment of the patient's home. This previous report found that home is "a symbol of the identity the participant had built up over a lifetime".…”

Section: Discussionmentioning

confidence: 99%

Everyday challenges facing high-risk older people living in the community: a community-based participatory study

et al. 2020

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Background: Considering the real-world experiences of those with cognitive impairments is important in building a positive community for older people. Community-based participatory research is an important methodology for investigators focused on improving community health. The aim of this study was to 1) investigate factors associated with the continuation of community dwelling among high-risk older people and 2) to create a model of an inclusive community space for older people in the largest housing complex district in Tokyo. Methods: From 198 residents who completed all three steps (mail, face-to-face, and home-visit) of a previous largescale epidemiological survey, we identified 66 residents who were at high-risk of moving out of the community. These participants underwent 6 months of regular assessments by experienced researchers to identify the factors associated with continuing to live in the community. We also employed a community action approach to develop a community space for residents in the study district where more than two researchers who were medical professionals served as staff. The services offered by the space were continuously improved according to user feedback. The function of this center was evaluated during interdisciplinary research meetings. Results: After 6 months, among the 66 high-risk residents, 49 people were living in the community and 12 people had moved out of the community. Those who could not continue to live in the community had greater unmet needs in terms of social support, especially daily living support and housing support. In addition, their families perceived a heavier burden of care. Interestingly, dementia diagnosis via the DSM-5, clinical dementia rating, physical health, mental health, and long-term care usage did not predict the outcome. Through discussions with guests, we equipped the space with various services such as coordination of community care and networking with existing organizations. Conclusions: Merely providing healthcare and long-term care might not be sufficient to support community living in people with cognitive impairments. Daily living support and housing support should be provided in the context of a broad health services package. For this purpose, creating a comfortable community space for residents and community workers is essential.

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“…Qualitative approach A qualitative approach has the potential to offer an in-depth view as well as a description of factors that facilitate or impede the associated social perceptions of older adults (with/without dementia) [79,80]. A growing body of literature has found the method useful in eliciting individual's beliefs, values and attitudes, behavioral practice, meaning and process of ageing and perceptions on dementia [81][82][83][84][85]. This approach can explore the heterogeneous characteristics of older adults where testing a hypothesis might not be a suitable attempt to capture these conceptual phenomena [79,86].…”

Section: Methodological Considerations In Ageing and Dementia Researchmentioning

confidence: 99%

Qualitative, Quantitative, or Mixed Methods? A Systematic Scoping Review on Methodological Applications in Ageing and Dementia Studies

Rahman¹,

Jahan²

2020

Preprint

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Background: Older adults (with and without dementia) are discriminated against at different social levels and often over-generalized in a stereotypical manner is called ageism. Despite advancements in gerontological research, the methodological implementations in the field of ageing and dementia studies have not been shared equally. This article reports on a systematic scoping review of the emerging methodological trends (use and application of research designs and methods) in this combined field.Methods: The study reviewed evidence-based articles published from 2009 to 2018 and indexed in five scientific electronic databases Web of Science, PubMed, Scopus, PsycINFO, and CINAHL complete by following PRISMA-ScR protocol. Both visual scanning of reference lists and hand searching of leading journals were performed in the field of ageing and dementia in order to maximize the search result.Results: A total of 112 papers were included. The review reveals that the predominant form of methodological application was a quantitative design (74.1%) compared to a qualitative (19.6%) and mixed methods (6.2%) in the combined field of ageing and dementia. Furthermore, the data collection instruments mostly used a variety of questionnaire surveys (with and without validated scales) and interviews. Both quantitative, qualitative, and mixed-methods studies have targeted the general public and healthcare professionals by and large, not older adults or people with dementia in particular. Conclusions: The results have important implications for the methodological advancement of ageing and dementia research, as well as for the development of inter-disciplinary and cross-cultural interventions considering the potentialities and limitations of data collection tools. The study provides a first step towards understanding key aspects in any study setting and recommends to be purposeful about what information will be gathered, which measurement tool or instrument is consistent with study purpose, and how the knowledge will be utilized.

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How Dementia Affects Personal Dignity: A Qualitative Study on the Perspective of Individuals With Mild to Moderate Dementia: Table 1.

Cited by 46 publications

References 53 publications

“I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

“I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

Everyday challenges facing high-risk older people living in the community: a community-based participatory study

Qualitative, Quantitative, or Mixed Methods? A Systematic Scoping Review on Methodological Applications in Ageing and Dementia Studies

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