Equity of people with dementia in research, why does this issue remain?

Brooke, Joanne

doi:10.1111/jocn.14957

Cited by 8 publications

(4 citation statements)

References 17 publications

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“…2,4 In addition, the perceived risks to people with dementia arising from their vulnerability, has resulted in their frequent exclusion from research with the somewhat paternalistic justification that it is for their own protection, thus preventing them from contributing to and benefiting from research. 2,19 While being interviewed carries some risks, it also has benefits for those sharing their experiences. The risks include unintended harm if reflecting on traumatic experiences, having one's anonymity breached and healthcare compromised, being misinformed about the research intent, and having one's narrative exploited without benefiting from the research.…”

Section: Research Into Experiences Of People Living With Dementiamentioning

confidence: 99%

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A human rights-based framework for qualitative dementia research

et al. 2023

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Background and Objectives People living with dementia have historically been excluded from qualitative research and their voices ignored due to the perception that a person with dementia is not able to express their opinions, preferences and feelings. Research institutions and organizations have contributed by adopting a paternalistic posture of overprotection. Furthermore, traditional research methods have proven to be exclusionary towards this group. The objective of this paper is to address the issue of inclusion of people with dementia in research and provide an evidence-based framework for dementia researchers based on the five principles of human rights: Participation, Accountability, Non-discrimination and equality, Empowerment and Legality (PANEL). Design This paper adapts the PANEL principles to the research context, and uses evidence from the literature to create a framework for qualitative research in people with dementia. This new framework aims to guide dementia researchers in designing studies around the needs of people with dementia, to improve involvement and participation, facilitate research development and maximize research outcomes. Results A checklist is presented with questions related to the five PANEL principles. These questions cover ethical, methodological and legal issues that researchers may need to consider while developing qualitative research for people with dementia. Conclusions The proposed checklist offers a series of questions and considerations to facilitate the development of qualitative research in patients with dementia. It is inspired by current human rights work of recognized dementia researchers and organizations who have been directly involved in policy development. Future studies need to explore its utility in improving participation, facilitating ethics approvals and ensuring that outcomes are relevant to people with dementia.

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Section: Research Into Experiences Of People Living With Dementiamentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

A human rights-based framework for qualitative dementia research

et al. 2023

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“…Although people with dementia have, historically, not been involved in research, either as participants or as co‐researchers (Alzheimer Europe, 2019), the last 10 years has seen a gradual shift towards greater involvement and understanding of the personal experiences of those living with this condition. For example, dementia activists, such as former nurse Kate Swaffer (2015) and former biochemist, CSIRO, senior executive Christine Bryden (2018) speak out about what it means to live with dementia and challenge for greater rights, and organisations such as Alzheimer's Europe promote the need for health and social care, and dementia research to work “with” rather than “on” people with dementia (Brooke, 2019; Gove et al, 2018; Swarbrick et al, 2019). Helping to promote greater recognition that the voice of those living with a diagnosis are vital in understanding what it means to manage life with dementia and how this understanding can influence the way treatment and care is delivered and developed, so that it is best meeting the needs of those who live with dementia (Brooke, 2019; Gove et al, 2018; Swarbrick et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

“Just ask me what it means to live with dementia” – people with mild dementia’s strategies and techniques shared through in‐depth qualitative interviews

Thoft

Ward

2021

Journal of Clinical Nursing

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Aims and objectives: This article presents results from interviews with twelve persons with mild dementia about how life had changed since they received their diagnosis, exploring their experiences of dementia and how they manage life by using different strategies and techniques.Background: Knowledge about how people with mild dementia experience life is important to explore through their unique perspective, providing clinical practice with knowledge to improve dementia care.Design: Twelve participants were recruited at a Danish school service for people with mild dementia where they receive cognitive stimulation. Semi-structured interviews were conducted, video recorded, transcribed and analysed by using Max Van Manen´s five lifeworld existentials: spatiality, corporeality, temporality, relationality and materiality. SRQR checklist was used.Results: Five themes were identified, illustrating the dilemmas and challenges the participants experience, as all existentials are compromised in some way: Living a social and active life regardless of difficulties;Trying to look at the bright side of life with dementia; It takes time to adapt but at the same time, time is being lost; It is possible to learn, but it is challenging; To try to remember but keep forgetting. Conclusion:The article concludes that all existentials are negatively influenced by dementia, setting the lifeworld of the participants under pressure. However, they still try to live their lives regardless of the difficulties. The study shows it is possible for people with mild dementia to describe their lived experience of dementia and what strategies and techniques they use to manage life. Relevance for clinical practice:The experienced dilemmas and challenges in the lifeworld of people with mild dementia is of great relevance to be aware of and address in clinical practice. To support people with dementia to identify relevant strategies and techniques, as expressed in the study, that can support them managing life with dementia.

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“…Evidence suggests that this population is at a higher risk of medicine-related toxicity due to changed pharmacokinetics and pharmacodynamics, but the clinical importance of this is mostly unknown [48,49]. Similarly, people living with dementia are often excluded from health services research owing to perceptions of inability to consent to participate in research, or take part in the processes required for the study [50,51]. For example, Taylor et al [52] found that 16% of original research in a leading geriatrics journal used recruitment methods that would prevent participation of people with cognitive impairment, and 29% of publications explicitly excluded this population.…”

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Consumer and Healthcare Professional Led Priority Setting for Quality Use of Medicines in People with Dementia: Gathering Unanswered Research Questions

Reeve

Chenoweth

Sawan

et al. 2023

JAD

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Background: Historically, research questions have been posed by the pharmaceutical industry or researchers, with little involvement of consumers and healthcare professionals. Objective: To determine what questions about medicine use are important to people living with dementia and their care team and whether they have been previously answered by research. Methods: The James Lind Alliance Priority Setting Partnership process was followed. A national Australian qualitative survey on medicine use in people living with dementia was conducted with consumers (people living with dementia and their carers including family,and friends) and healthcare professionals. Survey findings were supplemented with key informant interviews and relevant published documents (identified by the research team). Conventional content analysis was used to generate summary questions. Finally, evidence checking was conducted to determine if the summary questions were ‘unanswered’. Results: A total of 545 questions were submitted by 228 survey participants (151 consumers and 77 healthcare professionals). Eight interviews were conducted with key informants and four relevant published documents were identified and reviewed. Overall, analysis resulted in 68 research questions, grouped into 13 themes. Themes with the greatest number of questions were related to co-morbidities, adverse drug reactions, treatment of dementia, and polypharmacy. Evidence checking resulted in 67 unanswered questions. Conclusion: A wide variety of unanswered research questions were identified. Addressing unanswered research questions identified by consumers and healthcare professionals through this process will ensure that areas of priority are targeted in future research to achieve optimal health outcomes through quality use of medicines.

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Equity of people with dementia in research, why does this issue remain?

Cited by 8 publications

References 17 publications

A human rights-based framework for qualitative dementia research

A human rights-based framework for qualitative dementia research

“Just ask me what it means to live with dementia” – people with mild dementia’s strategies and techniques shared through in‐depth qualitative interviews

Consumer and Healthcare Professional Led Priority Setting for Quality Use of Medicines in People with Dementia: Gathering Unanswered Research Questions

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