How couples with dementia experience healthcare, lifestyle, and everyday decision-making

Sinclair, Craig; Gersbach, Kate; Hogan, Michelle; Bucks, Romola S.; Auret, Kirsten; Clayton, Josephine M.; Agar, Meera; Kurrle, Sue

doi:10.1017/s1041610218000741

Cited by 27 publications

(22 citation statements)

References 26 publications

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“…Participants in another study report that they tackle life with dementia by maintaining positive attitude towards their present and future [43]. One participant says, “I keep saying I want to go into care sooner rather than later” [75]. Other participants said that they told themselves, ‘‘Look forward, do not look backward’’ [39].…”

Section: Resultsmentioning

confidence: 99%

The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis

Eriksen

Bartlett

Grov

et al. 2020

Dement Geriatr Cogn Disord

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Introduction: For people with dementia, lived time is important to understand, as the condition affects memory, perceptions of time, and life expectancy. The aim of this study was to locate, interpret, and synthesize the experience of lived time for people with dementia. Method: This article presents a qualitative systematic meta-synthesis. The theoretical framework of lifeworlds by van Manen provided the context for the study. The Critical Appraisal Skills Programme criteria for qualitative studies were used to appraise the studies. Sixty-one qualitative research studies based on interviews with people with dementia were included in the review. The analysis followed the principles of interpretive synthesis. Results: Four categories were revealed: (1) rooted in the past – “I am the same as before”; (2) focussing on the present – “Nobody has tomorrow”; (3) thinking about the future – “What is going to happen to me?”; and (4) changes in the experience of self over time – “I used to….” The latent overall meaning was expressed as “being engaged with the dimensions of time.” Discussion/Conclusion: The experience of lived time is an active and important one, enabling people to manage the dementia journey. Future work involving people with dementia should foreground the experience of lived time.

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Section: Resultsmentioning

confidence: 99%

The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis

Eriksen

Bartlett

Grov

et al. 2020

Dement Geriatr Cogn Disord

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“…A growing body of research exploring how people with cognitive disability are supported with decision making outside legal supported decision-making schemes has focused on the experiences of specific groups; people with traumatic brain injury (Harding & Taşciouğlu, 2018;Knox et al, 2015;Knox et al, 2016a;Knox et al, 2016b), dementia (Fetherstonhaugh et al, 2016;Sinclair et al, 2018), severe or profound intellectual disabilities (Watson, 2016;Watson et al, 2019), family members (Sinclair et al, 2018) and workers in disability support services (Bigby et al, 2019;Harding & Taşciouğlu, 2018). Shogren et al's (2017) review identified a wide range of contextual and environmental factors that shaped decision making for these populations, including decision-making experience, emotions, disability characteristics, accessibility of information, decision complexity, relationships with service providers, opportunities for decision making and family attitudes about decision making.…”

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confidence: 99%

A process of decision-making support: Exploring supported decision-making practice in Canada

Browning¹,

Bigby

Douglas

2020

Journal of Intellectual & Developmental Disability

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Background: Canada was the first country to develop legal mechanisms that allow for supported decision making, and little research has explored how decision making is supported in this context. This research aimed to understand how seven people with intellectual disabilities, living in two Canadian provinces, were supported with their decision making. Method: The research used constructivist grounded theory methodology, interviewing and observing the decision making of seven people with mild to severe intellectual disabilities and 25 decision supporters. Results: A common process of decision-making support was discovered, involving dynamic interaction between the person's will and preferences and supporters' responses. This interaction was influenced by five factors: the experiences and attributes the person and their supporter brought to the process; the quality of their relationship; the decision-making environment and the nature and consequences of the decision. Conclusion:The highly individualised and contextually dependent nature of decision-making support has implications for supported decision-making practice.

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“…Existing studies, such as one recently published by Sinclair et al (2018), have explored how key stakeholders in dementia care enable decisionmaking processes. This paper is an advancement in that it focuses on the engagement of these stakeholders in decision-making processes and identifies the key factors that influence their engagement.…”

Section: Resultsmentioning

confidence: 99%

The key factors for the engagement of primary stakeholders in decision-making for the future care of people with dementia living in the community: a systematic integrative review

Lai

Jeon

McKenzie

2019

Int. Psychogeriatr.

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Background:Engagement of people with dementia who are living in the community, their family or carers, and healthcare professionals in decision-making related to their future care is an area yet to be explored in the literature. In particular, little is known about the factors most likely to underpin their engagement.Objectives:To identify key factors for the engagement of the person with dementia living in the community, as well as their family or carer and their healthcare professionals in decision-making processes related to future care.Design:This is an integrative review guided by the PRISMA guidelines; the Mixed Methods Appraisal Tool was used to assess study quality. MEDLINE, PubMed, CINAHL, PsycINFO and Embase databases were searched for articles published from 2012 to 2018 that focused on people with dementia who live in the community, their family or carers, and community-based healthcare professionals.Results:Twenty articles were included in the review, and six key factors were identified through thematic analysis: knowledge and understanding of dementia and decision-making for the future, valuing decision-making for the future, healthcare professionals’ communication skills, timing of initiating conversations, relationship quality, and orientation to the future.Conclusion:This review identifies the six key factors required for the engagement of the three primary key stakeholders in decision-making about the future care of people with dementia. It also situates the factors within the complex context in which people with dementia, their family or carers, and healthcare professionals typically find themselves.

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How couples with dementia experience healthcare, lifestyle, and everyday decision-making

Cited by 27 publications

References 26 publications

The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis

The Experience of Lived Time in People with Dementia: A Systematic Meta-Synthesis

A process of decision-making support: Exploring supported decision-making practice in Canada

The key factors for the engagement of primary stakeholders in decision-making for the future care of people with dementia living in the community: a systematic integrative review

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