Involving People With Dementia in Participatory Design: Ethical Processes and Consent for Dementia Research

Allen, Ruby; Cook, Sharon; Hignett, Sue; Jais, Charlotte

doi:10.1016/j.jalz.2017.06.2594

Cited by 4 publications

(9 citation statements)

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“…The research team also learned a variety of lessons, translating in six recommendations for future PD work of this type. The recommendations complement others related to ensuring safety, methods quality and engagement when using PD methods with PWD [8,23].…”

Section: Lessons Learnedmentioning

confidence: 88%

“…Much of the literature reporting guidelines and recommendations for PD with PWD focuses on preparing support materials and communicating with participants [8,23]. Additionally, we identified the importance of preparing the space to be used for the activity.…”

Section: Adjust Methods To Participant Limitations and Motivationsmentioning

confidence: 99%

“…In this paper we add to the nascent literature describing implementing PD with PWD and CPWD [8], as well as studies in general describing implementation challenges and strategies related to field research in the health domain [9,10].…”

Section: Introductionmentioning

confidence: 99%

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Applying participatory design with dementia stakeholders: Challenges and lessons learned from two projects

Cavalcanti

Holden

Karanam

2018

Proceedings of the Proceedings of the 12th EAI International Conference on Pervasive Computing Technologies for Healthcare – De

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Researchers and designers find it challenging to use traditional methods to establish cognitive and affective empathy with persons with dementia (PWD) and informal caregivers of PWD (CPWD). We used participatory design (PD) to learn about and design for the experiences of PWD and CPWD. Here, we present our experience applying PD in a design project with PWD and another with CPWD. We discuss challenges we faced regarding choice of method, relationship with project partners, and working with an older, cognitively impaired population. Finally, we describe lessons learned using PD methods with PWD and CPWD. 1

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Section: Lessons Learnedmentioning

confidence: 88%

Section: Adjust Methods To Participant Limitations and Motivationsmentioning

confidence: 99%

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Applying participatory design with dementia stakeholders: Challenges and lessons learned from two projects

Cavalcanti

Holden

Karanam

2018

Proceedings of the Proceedings of the 12th EAI International Conference on Pervasive Computing Technologies for Healthcare – De

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“…One participant in particular answered positively about their local community but took the time to write on the survey that their answers only applied to “those who speak my language”. With the number of people with dementia from Black, Asian and minority ethnic groups expected to rise significantly as this population ages ( All-Party Parliamentary Group on Dementia, 2013 ), and in addition to the barriers often experienced by this group in accessing post-diagnostic dementia care and support, there is a growing need for DFCs to develop methods of engaging with the diversity of people living with dementia ( Nielsen et al, 2019 ).…”

Section: Discussionmentioning

confidence: 99%

“…In the last decade, researchers have taken more steps to include people with dementia in quantitative research by addressing perceived difficulties in consent, capacity, and communication ( Allen et al, 2017 ; Brooks et al, 2017 ). Research that only collects proxy accounts, such as those from family members and caregivers, to capture the experience of people living with dementia is not always reliable ( Lepore et al, 2017 ; Rivett, 2017 ).…”

Section: Introductionmentioning

confidence: 99%

A survey of the experience of living with dementia in a dementia-friendly community

Darlington

Arthur²,

Woodward

et al. 2020

Dementia

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Dementia-friendly communities (DFCs) are one way in which people living with dementia can be supported to be active, engaged and valued citizens. Quantitative evaluations of the experiences of those with dementia living within these communities are scarce. This article reports findings from a survey of people living with dementia on their experience of living in a DFC. Two-hundred and forty people living with dementia completed a cross-sectional survey in six DFCs across England. Around half of respondents reported they were aware they were living in a DFC. Being aware of living in a DFC was associated with taking part in leisure activities ( p = 0.042), community centre attendance ( p = 0.009), being involved in organised activities or groups ( p < 0.001), feeling understood ( p = 0.008), and feeling valued for their own contributions to the community ( p = 0.002). This study illustrates the contribution that surveys can make in facilitating the expression of views and experiences of people living with dementia. Awareness of living within a DFC is associated with greater involvement in, and belonging to, the wider community.

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A qualitative systematic review of the role of families in supporting communication in people with dementia

Stuart

Jones

Windle

2022

Intl J Lang & Comm Disor

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Background: Cognitive-communication difficulties are often associated with dementia and can impact a person's ability to participate in meaningful conversations. This can create challenges to families, reflecting the reality that people living with dementia rarely have just one regular conversation partner, but interact with multiple family members. To date, there is limited evidence of the impact of changes in communication patterns in families. A family systems approach, with foundations in psychology, can be used to explore the impact of communication difficulties on multiple different family members, including the person living with dementia and potential coping strategies used by individuals, together with the family as a whole. Methods & Procedures:A systematic review of primary qualitative research was conducted to identify and examine research exploring communication and interaction within families living with dementia. Studies were identified through a comprehensive search of major databases and the full-text articles were subject to a quality appraisal. We conducted a thematic analysis on the literature identified to consider the role of families in supporting communication for people with dementia. Outcomes & Results:The searches identified 814 possible articles for screening against the eligibility criteria. Nine articles were included in the final review.Three major themes emerged from the analysis of the included studies: (1) 'identities changing' reflected how interactions within the family systems impacted on identities; (2) 'loss' reflected the grief experienced by families due to changes in communication; and (3) 'developing communication strategies' highlighted strategies and approaches that families affected by dementia may use organically to engage in meaningful interactions and maintain connection. Only one study explicitly used a family systems approach to understand how families manage the changes in interaction resulting from dementia.

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Involving People With Dementia in Participatory Design: Ethical Processes and Consent for Dementia Research

Cited by 4 publications

References 0 publications

Applying participatory design with dementia stakeholders: Challenges and lessons learned from two projects

Applying participatory design with dementia stakeholders: Challenges and lessons learned from two projects

A survey of the experience of living with dementia in a dementia-friendly community

A qualitative systematic review of the role of families in supporting communication in people with dementia

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