Decision Trajectories in Dementia Care Networks: Decisions and Related Key Events

Ven, Leontine Groen-van de; Smits, Carolien; Oldewarris, Karen; Span, Marijke; Jukema, Jan; Eefsting, Jan A.; Vernooij‐Dassen, Myrra

doi:10.1177/0164027516656741

Cited by 30 publications

(41 citation statements)

References 40 publications

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“…-Exploring choices (Smebye et al, 2012;Boyle, 2013b;Boyle, 2014a;Fetherstonhaugh et al, 2016;Groen van de Ven, 2017;Dickinson et al, 2013;Berry et al, 2015). -Assertion of autonomy (White, and Montgomery, 2014;Berry et al, 2015;Macquarrie, 2005) Restricted autonomy by the carer (Bantry et al, 2014;Berry et al, 2015) Shared decisionmaking pathway…”

Section: Autonomous Decision-making Pathwaymentioning

confidence: 99%

Agency in dementia care: systematic review and meta-ethnography

Bosco

Schneider

Coleston-Shields

et al. 2018

Int. Psychogeriatr.

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Objectives: Dementia often limits the agency of the person to such an extent that there is need for external support in making daily life decisions. This support is usually provided by family members who are sometimes legally empowered to engage in decision making on behalf of the person for whom they care. However, such family carers receive little or no information on how to best provide support when there is a lack of capacity. This may have an impact on the agency of the person with dementia. This review explores the experience of agency in people living with dementia.Design: A systematic search was conducted on IBSS, MedLine, PsychINFO, EMBASE, and CINAHL. Two independent researchers screened the studies and conducted the quality appraisal. We used meta-ethnography for data analysis. As part of the synthesis, we identified behavioural mechanisms underlying the process of decision making and looked at how the support of carers comes into play in making deliberate choices. Results:The meta-ethnography involved 20 studies. Three levels of third-order constructs were identified, each describing a decision-making pathway and reflecting the degree of autonomy of the person with dementia: autonomous decision-making, shared decisionmaking, and pseudo decision-making. Findings highlight those inter-relational processes that promote or negatively impact on the agency of people with dementia. Conclusions:Our review will provide health and social care personnel with an understanding of the role of the carer in the decision-making-process, and therefore which mechanisms need to be promoted or discouraged through training.Words 246/250

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Section: Autonomous Decision-making Pathwaymentioning

confidence: 99%

Agency in dementia care: systematic review and meta-ethnography

Bosco

Schneider

Coleston-Shields

et al. 2018

Int. Psychogeriatr.

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“…Table 1 provides an overview of the characteristics of those 19 care networks with their original identification number. For an overview of all care networks, see Groen-van de Ven et al 25 Two of 19 care networks had only one informal caregiver each who could be interviewed, which left 93 respondents altogether for the analysis of this paper. The professional caregivers involved included case managers, home care nurses, daycare employees and a psychotherapist.…”

Section: Resultsmentioning

confidence: 99%

“…This study is part of a research programme about shared decision making in dementia care networks. 25 …”

Section: Methodsmentioning

confidence: 99%

Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

et al. 2017

Self Cite

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ObjectiveTo explore how people with dementia, their informal caregivers and their professionals participate in decision making about daycare and to develop a typology of participation trajectories.DesignA qualitative study with a prospective, multiperspective design, based on 244 semistructured interviews, conducted during three interview rounds over the course of a year. Analysis was by means of content analysis and typology construction.SettingCommunity settings and nursing homes in the Netherlands.Participants19 people with dementia, 36 of their informal caregivers and 38 of their professionals (including nurses, daycare employees and case managers).ResultsThe participants’ responses related to three critical points in the decision-making trajectory about daycare: (1) the initial positive or negative expectations of daycare; (2) negotiation about trying out daycare by promoting, resisting or attuning to others; and (3) trying daycare, which resulted in positive or negative reactions from people with dementia and led to a decision. The ways in which care networks proceeded through these three critical points resulted in a typology of participation trajectories, including (1) working together positively toward daycare, (2) bringing conflicting perspectives together toward trying daycare and (3) not reaching commitment to try daycare.ConclusionShared decision making with people with dementia is possible and requires and adapted process of decision making. Our results show that initial preferences based on information alone may change when people with dementia experience daycare. It is important to have a try-out period so that people with dementia can experience daycare without having to decide whether to continue it. Whereas shared decision making in general aims at moving from initial preferences to informed preferences, professionals should focus more on moving from initial preferences to experienced preferences for people with dementia. Professionals can play a crucial role in facilitating the possibilities for a try-out period.

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“…Professional training and research on shared decision-making in the context of dementia are still lacking. Recent research described the processes, challenges, and trajectories of shared decision-making in dementia care [ 25 – 27 ]; one study reported an approach to develop a computer-based decision aid for seniors with dementia [ 28 , 29 ]. To the best of our knowledge, a single study developed and evaluated a decision aid intervention, in the context of dementia, for people with advanced dementia who lived in nursing homes [ 30 ].…”

Section: Introductionmentioning

confidence: 99%

Tailoring and evaluating an intervention to improve shared decision-making among seniors with dementia, their caregivers, and healthcare providers: study protocol for a randomized controlled trial

Giguère

Lawani

Fortier-Brochu

et al. 2018

Trials

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BackgroundThe increasing prevalence of Alzheimer’s disease and other forms of dementia raises new challenges to ensure that healthcare decisions are informed by research evidence and reflect what is important for seniors and their caregivers. Therefore, we aim to evaluate a tailored intervention to help healthcare providers empower seniors and their caregivers in making health-related decisions.MethodsIn two phases, we will: (1) design and tailor the intervention; and (2) implement and evaluate it. We will use theory and user-centered design to tailor an intervention comprising a distance professional training program on shared decision-making and five shared decision-making tools dealing with difficult decisions often faced by seniors with dementia and their caregivers. Each tool will be designed in two versions, one for clinicians and one for patients. We will recruit 49 clinicians and 27 senior/caregiver to participate in three cycles of design-evaluation-feedback of each intervention components. Besides think-aloud and interview approaches, users will also complete questionnaires based on the Theory of Planned Behavior to identify the factors most likely to influence their adoption of shared decision-making after exposure to the intervention. We will then modify the intervention by adding/enhancing behavior-change techniques targeting these factors. We will evaluate the effectiveness of this tailored intervention before/after implementation, in a two-armed, clustered randomized trial. We will enroll a convenience sample of six primary care clinics (unit of randomization) in the province of Quebec and recruit the clinicians who practice there (mostly family physicians, nurses, and social workers). These clinics will then be randomized to immediate exposure to the intervention or delayed exposure. Overall, we will recruit 180 seniors with dementia, their caregivers, and their healthcare providers. We will evaluate the impact of the intervention on patient involvement in the decision-making process, decisional comfort, patient and caregiver personal empowerment in relation to their own healthcare, patient quality of life, caregiver burden, and decisional regret.DiscussionThe intervention will empower patients and their caregivers in their healthcare, by fostering their participation as partners during the decision-making process and by ensuring they make informed decisions congruent with their values and priorities.Trial registrationClinicalTrials.org, NCT02956694. Registered on 31 October 2016.Electronic supplementary materialThe online version of this article (10.1186/s13063-018-2697-1) contains supplementary material, which is available to authorized users.

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Decision Trajectories in Dementia Care Networks: Decisions and Related Key Events

Cited by 30 publications

References 40 publications

Agency in dementia care: systematic review and meta-ethnography

Agency in dementia care: systematic review and meta-ethnography

Involvement of people with dementia in making decisions about their lives: a qualitative study that appraises shared decision-making concerning daycare

Tailoring and evaluating an intervention to improve shared decision-making among seniors with dementia, their caregivers, and healthcare providers: study protocol for a randomized controlled trial

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