Shared Decision Making About Housing Transitions for Persons With Dementia: A Four-Case Care Network Perspective

Garvelink, Mirjam M.; Ven, Leontine Groen-van de; Smits, Carolien; Franken, Rob J. M.; Dassen-Vernooij, Myrra

doi:10.1093/geront/gny073

Cited by 18 publications

(43 citation statements)

References 31 publications

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“…Research into best practices with regard to SDM in the last phase of life shows some examples about other vulnerable populations. One study focused on people with dementia and their caregivers and the extent to which housing decisions matched with an interprofessional SDM approach (Garvelink et al 2018). This study indicated that honesty, timely communication and advance care planning helped to better align decisions with preferences of patients.…”

Section: Discussionmentioning

confidence: 99%

Shared decision‐making with people with intellectual disabilities in the last phase of life: A scoping review

Noorlandt¹,

Echteld

Tuffrey‐Wijne

et al. 2020

J intellect Disabil Res

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Background Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment. Method In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life. Results Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined. Conclusion Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life.

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Section: Discussionmentioning

confidence: 99%

Shared decision‐making with people with intellectual disabilities in the last phase of life: A scoping review

Noorlandt¹,

Echteld

Tuffrey‐Wijne

et al. 2020

J intellect Disabil Res

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“…The body of research included in the current review identifies that one way this might be achieved is by visiting prospective LTC facilities (Thein et al, 2011). Prior research shows that shared decision-making regarding housing may be achieved 'in the moment', through use of a healthcare professional facilitated decision aid (Lord, Livingston, Robertson, & Cooper, 2016) or early in the care continuum, through advanced care planning (Garvelink et al, 2018).…”

Section: Aim 1: Preliminary Principles For Care During Transitions Tomentioning

confidence: 99%

A qualitative systematic review of experiences of persons with dementia regarding transition to long-term care

2019

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Introduction The current qualitative systematic review identified and examined critically the literature on how persons with dementia experience transitions to long-term care. Results are intended to help develop guidelines for future care and research. Method A search was conducted of OvidSP, SCOPUS, Web of Science, ProQuest, PsycINFO, CINAHL, AgeLine and Informit databases. In total, 4705 articles were reviewed (published 1954–2018). A textual narrative approach was used to synthesise the findings of the included articles. Results Seven articles met inclusion criteria (five using data collected from interviews with persons with dementia and two using reports from a proxy). Overall, the findings showed that transition to long-term care possesses varied meanings for persons with dementia, is often not the decision of the persons with dementia, and is a process throughout which social connections remain important. Discussion Accounts of the experiences of persons with dementia regarding transitions from community to long-term care show that they and their families should be supported: with respect to their individual contexts, to share the positives and negatives of the transition experiences, to make decisions together, and to maintain old and establish new social connections.

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“…Policy guidance and indeed societal preference promotes home-based care for people living with dementia (Department of Health, 2015). Many often ultimately move into care homes when ICs are unable to manage their growing care needs (Livingston et al, 2017; Garvelink, 2018). However, research has shown that people living with dementia who reside in care homes experience lower quality of life than those living at home (Ryan and McKenna, 2015; Robertson et al, 2017; Ballard et al, 2018).…”

Section: Introductionmentioning

confidence: 99%

An exploration of the experiences of informal carers supporting a relative living with dementia during and after the move to technology-enriched supported accommodation

et al. 2019

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The aim of this study was to explore the experiences of family carers supporting a relative living with dementia during and after the move to technology-enriched supported accommodation (TESA). The paper explores the informal carers (ICs) roles, the factors prompting the move to TESA, alongside their perceptions of their relatives’ experience of the move and of life in a technology-enriched environment. Within a qualitative study 25 semi-structured interviews were conducted with ICs and data were analysed following a thematic approach. Four themes were identified, reflecting the shift in roles and identity of both ICs and persons living with dementia. The move to TESA was linked to a perceived reduction in care-giving pressures, with positive outcomes reported for both the ICs and the people living with dementia. Smart home technologies in the facilities did not appear to impact on the decision-making during transition, however, they were valued as part of the lived experience for the people living with dementia within the TESA facilities. These findings are relevant to policy makers, commissioners and providers of services to highlight the engagement of all stakeholders in the provision of care for people living with dementia and their families early from diagnosis in order to facilitate person-centred practices in community settings.

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Shared Decision Making About Housing Transitions for Persons With Dementia: A Four-Case Care Network Perspective

Abstract: Timely and honest communication helps to mitigate the distress of deciding against patient preferences, as could advance care planning about future housing transitions.

Cited by 18 publications

References 31 publications

Shared decision‐making with people with intellectual disabilities in the last phase of life: A scoping review

Shared decision‐making with people with intellectual disabilities in the last phase of life: A scoping review

A qualitative systematic review of experiences of persons with dementia regarding transition to long-term care

An exploration of the experiences of informal carers supporting a relative living with dementia during and after the move to technology-enriched supported accommodation

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