Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions

Geddis-Regan, Andrew; Errington, Linda; Wassall, Rebecca; Exley, Catherine; Thomson, Richard

doi:10.1111/hex.13167

Cited by 26 publications

(36 citation statements)

References 57 publications

(119 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…This article presents a novel decision aid to support family carers of people living with dementia towards the end‐of‐life. This is the first decision aid to cover multiple decisions that family carers may face when a person living with dementia is approaching the end‐of‐life, filling an important gap identified in the decision‐making literature 7,16,22 . This is one of the first papers to provide a detailed description of a systematic approach to coproducing a decision aid, grounded in theory, evidence and lived experience.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

A decision aid to support family carers of people living with dementia towards the end‐of‐life: Coproduction process, outcome and reflections

Davies

Sampson

West

et al. 2021

Health Expectations

View full text Add to dashboard Cite

Background Family carers of people living with dementia often need support with making decisions about care. Many find end‐of‐life care decisions particularly difficult. The aim of this article is to present an evidence‐ and theoretical‐based process for developing a decision aid to support family carers of people with dementia towards the end‐of‐life. Methods Following a systematic process, we developed a decision aid using coproduction methods and matrices to synthesize data from a systematic review and qualitative interviews with people living with dementia and family carers. Data were presented to coproduction workshops of people living with dementia, family carers, practitioners and professionals. Development was guided by the Ottawa Decision Support Framework and a modified Interprofessional Shared Decision‐Making model. Results The decision aid covers four decision areas: (1) changes in care; (2) eating and drinking difficulties; (3) everyday well‐being; and (4) healthcare, tests and medication. We present an interactive decision aid, using a variety of approaches including written text, Frequently Asked Questions, top tips and illustrative quotes from people living with dementia and family carers. Conclusion This is the first decision aid that focusses on multiple decisions towards the end‐of‐life in dementia care. The process offers a template for others to develop decision aids or similar interventions, and how to include people living with dementia in coproduction. Patient or Public Contribution Family carers provided feedback on data collection, data analysis and the decision aid, and one is a coauthor. People living with dementia and family carers were integral to the coproduction workshops.

show abstract

Section: Discussionmentioning

confidence: 99%

“…Decision aids suitable for use by family carers in dementia care have been shown to improve knowledge and communication, and reduce decisional conflict among family carers 16,22 . However, these decision aids only focus on a single decision, including eating and feeding options, 23 place of care 24,25 and goals of care 26,27 .…”

Section: Introductionmentioning

confidence: 99%

A decision aid to support family carers of people living with dementia towards the end‐of‐life: Coproduction process, outcome and reflections

Davies

Sampson

West

et al. 2021

Health Expectations

View full text Add to dashboard Cite

show abstract

“… 37 ,44 This mirrors research seeking to find frameworks and approaches to standardize involvement. 19 , 21 Future work seeking to explore dementia friendly care therefore needs the frameworks informed by principles of social inclusion, shared decision making 11 , 12 and citizenship, 9 , 17 , 18 but also practical work to help practitioners know when initiatives are successful. 7 …”

Section: Discussionmentioning

confidence: 99%

“…In this way this review demonstrates ways that the basic and fundamental principles of human rights declarations can be applied to support the decision-making processes in assessing and implementing the care and support needs of individuals with dementia. Similarly, the review by Geddis-Regan et al 12 aimed to identify interventions to achieve shared decision making. They found limited examples relating to feeding decisions and advance care planning as well as studies that suggested techniques to enhance communication to enable shared decision making to occur.…”

Section: Introductionmentioning

confidence: 99%

Dementia Friendly Care: Methods to Improve Stakeholder Engagement and Decision Making

Innes¹,

Smith²,

Bushell³

2021

JHL

View full text Add to dashboard Cite

Dementia friendly (DF) is a term that has been increasingly used in the international literature to describe approaches that include and involve people living with dementia within their communities and wider society. How to support the involvement of people living with dementia to achieve dementia friendly care or support outcomes is an area that has begun to receive attention. We begin by introducing the concept of dementia friendly, the policy context and what has already been evidenced via prior reviews and conceptual discussions. We conducted a systematic review following PRISMA guidelines, resulting in the inclusion of nineteen papers that reported on the methods and approaches used to involve people living with dementia in achieving dementia friendly or supportive care outcomes. Five primary themes were identified: the potential of group-based activities to facilitate inclusion and engagement; achieving engagement in decision making; the value of developing tools to help service providers to engage those living with dementia in care decisions; the role of awareness raising and education to support the inclusion of a range of stakeholders in achieving DF support and care outcomes; the need for cultural and contextual sensitivity when seeking to engage stakeholders to achieve positive care outcomes. We conclude by considering how both the underpinning ethos of social citizenship and social inclusion need to be in place alongside a range of approaches that are adapted to fit local contexts and needs to enable the involvement of people living with dementia in achieving dementia friendly care outcomes.

show abstract

“…A DA for proxy decision-makers could improve the decision-making process through helping the proxy determine what the person's preferences would be, and decision quality by ensuring that the choice made matches those preferences. As there is a lack of a DA for proxy decisions about research, and DAs are decision-speci c interventions that are unlikely to produce a bene t in other decision contexts [27], development of a decision-speci c intervention is needed. This paper describes the development of a novel intervention to support decision-making by family members when making decisions about research participation on behalf of a patient who lacks capacity to consent.…”

Section: Need For Decision Support Interventions For Proxy Decisions mentioning

confidence: 99%

Development of a decision support intervention for family members of adults who lack capacity to consent to trials

Shepherd

Wood

Griffith

et al. 2020

Preprint

View full text Add to dashboard Cite

Background Informed consent is required for participation in clinical trials, however trials involving adults who lack capacity to consent require different enrolment processes. A family member usually acts as a proxy to make a decision based on the patient’s ‘presumed will’, but they can experience an emotional and decisional burden as a result. Decisions made on behalf of others are conceptually different from those we make for ourselves. Despite innovations to improve informed consent processes for research, including the development of decision aid, there are no interventions for proxies who arguably are faced with more complex decisions. This article outlines the development of a novel decision aid aimed at supporting families making decisions about research participation on behalf of an adult who lacks capacity to consent. Methods Decision support interventions should be developed using rigorous and evidence-based methods. This intervention was developed using the MRC guidance for the development of complex interventions, and a conceptual framework for the development and evaluation of decision aids for people considering taking part in a clinical trial. The intervention was informed by a systematic review and analysis of existing information provision. Previous qualitative research with families who had acted as proxies enabled the development of a theoretical framework to underpin the intervention. The intervention was iteratively developed in conjunction with lay advisors and relevant stakeholders. Results Previous research, theoretical frameworks, and decision aid development frameworks were used to identify and develop the intervention components. The decision aid includes information about the proxy’s role and uses a values clarification exercise and decision support methods to enable a more informed and better-quality decision. Stakeholders, including those representing implementers and receivers of the intervention, contributed to the design and comprehensibility of the decision aid and helped to ensure that it would be acceptable for use.Conclusions Frameworks for the development of decision aids for people considering participating in a clinical trial can be used to develop interventions for family members acting as proxy decision-makers. The decision support tool is acceptable to users but requires feasibility testing and outcome measure development prior to any evaluation of its effectiveness.

show abstract

Enhancing shared and surrogate decision making for people living with dementia: A systematic review of the effectiveness of interventions

Cited by 26 publications

References 57 publications

A decision aid to support family carers of people living with dementia towards the end‐of‐life: Coproduction process, outcome and reflections

A decision aid to support family carers of people living with dementia towards the end‐of‐life: Coproduction process, outcome and reflections

Dementia Friendly Care: Methods to Improve Stakeholder Engagement and Decision Making

Development of a decision support intervention for family members of adults who lack capacity to consent to trials

Contact Info

Product

Resources

About