Improving End-of-Life Care for Persons Living With Dementia: Bereaved Caregivers’ Observations and Recommendations

Yeh, Jarmin; Newman, Jeff; Main, Rachel; Hunt, Lauren

doi:10.1016/j.jpainsymman.2021.01.133

Cited by 9 publications

(12 citation statements)

References 23 publications

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“…As listed in Table 2 , of the 22 included papers, 13 were published since 2016 ( Ampe et al, 2016 , 2017 ; Morin et al, 2016 ; Sinclair et al, 2016 ; Aasmul et al, 2018 ; Givens et al, 2018 ; Hill et al, 2018 ; Tilburgs et al, 2018 ; de Vries and Drury-Ruddlesden, 2019 ; Goossens et al, 2020a , b ; Sussman et al, 2020 ; Yeh et al, 2021 ). The majority of papers described qualitative studies ( n = 14), using methods such as interviews, focus groups and ethnographic observations ( Godwin and Waters, 2009 ; Johnson et al, 2009 ; Sims-Gould et al, 2010 ; Goodman et al, 2013 ; Poppe et al, 2013 ; Beernaert et al, 2014 ; Ampe et al, 2016 ; Givens et al, 2018 ; Hill et al, 2018 ; Tilburgs et al, 2018 ; de Vries and Drury-Ruddlesden, 2019 ; Goossens et al, 2020a ; Sussman et al, 2020 ).…”

Section: Resultsmentioning

confidence: 99%

“…Only three papers described quantitative methods; two cluster randomized controlled trials ( Ampe et al, 2017 ; Goossens et al, 2020b ) and one survey described a single survey ( Morin et al, 2016 ). Two studies used a mixed methods approach ( Karel et al, 2007 ; Yeh et al, 2021 ) and two Delphi studies were included ( van der Steen et al, 2014 ; Sinclair et al, 2016 ; Sussman et al, 2020 ). Papers described studies that were conducted in ten different countries, with five studies conducted in Belgium ( Beernaert et al, 2014 ; Ampe et al, 2016 , 2017 ; Goossens et al, 2020a , b ), four in the United Kingdom ( Godwin and Waters, 2009 ; Goodman et al, 2013 ; Poppe et al, 2013 ; Sinclair et al, 2016 ) and four in the United States of America ( Kayser-Jones, 2002 ; Karel et al, 2007 ; Givens et al, 2018 ; Yeh et al, 2021 ).…”

Section: Resultsmentioning

confidence: 99%

“…Two studies used a mixed methods approach ( Karel et al, 2007 ; Yeh et al, 2021 ) and two Delphi studies were included ( van der Steen et al, 2014 ; Sinclair et al, 2016 ; Sussman et al, 2020 ). Papers described studies that were conducted in ten different countries, with five studies conducted in Belgium ( Beernaert et al, 2014 ; Ampe et al, 2016 , 2017 ; Goossens et al, 2020a , b ), four in the United Kingdom ( Godwin and Waters, 2009 ; Goodman et al, 2013 ; Poppe et al, 2013 ; Sinclair et al, 2016 ) and four in the United States of America ( Kayser-Jones, 2002 ; Karel et al, 2007 ; Givens et al, 2018 ; Yeh et al, 2021 ). Other studies were conducted in Canada ( Sims-Gould et al, 2010 ; Hill et al, 2018 ; Sussman et al, 2020 ), Norway ( Aasmul et al, 2018 ), France ( Morin et al, 2016 ), Netherlands ( Tilburgs et al, 2018 ), Australia ( Johnson et al, 2009 ) and New Zealand ( de Vries and Drury-Ruddlesden, 2019 ).…”

Section: Resultsmentioning

confidence: 99%

“…Dementia causes substantial changes in one’s life that may elicit different emotions and feelings compared to feelings people had before their diagnosis, or compared to those with other diseases. A total of ten papers reported on how emotional changes that come with dementia may possibly affect ACP conversations, or on how to overcome challenges due to these changes ( Kayser-Jones, 2002 ; Godwin and Waters, 2009 ; Poppe et al, 2013 ; Beernaert et al, 2014 ; Ampe et al, 2016 ; Aasmul et al, 2018 ; Givens et al, 2018 ; Hill et al, 2018 ; de Vries and Drury-Ruddlesden, 2019 ; Yeh et al, 2021 ). People with dementia often experience agitation, fear, confusion, and pain.…”

Section: Resultsmentioning

confidence: 99%

“…According to Godwin and Waters (2009) , the ability and especially the willingness of people with dementia to talk about abstract concepts such as death is underestimated with healthcare professionals. Yeh et al (2021) underline that initiative for ACP conversations between people with dementia and healthcare professionals can also come from family caregivers.…”

Section: Resultsmentioning

confidence: 99%

See 4 more Smart Citations

How Do We Talk With People Living With Dementia About Future Care: A Scoping Review

et al. 2022

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A diagnosis of dementia often comes with difficulties in understanding a conversational context and expressing how one feels. So far, research on how to facilitate advance care planning (ACP) for people with dementia focused on defining relevant themes and topics for conversations, or on how to formalize decisions made by surrogate decision makers, e.g., family members. The aim of this review is to provide a better scope of the existing research on practical communication aspects related to dementia in ACP conversations. In November 2020, seven databases were searched to select papers for inclusion (Proquest, Medline, Embase, Scopus, Psycinfo, Amed, and Cinahl). This search was updated in December 2021. The search strategy consisted of three tiers (related terms to “dementia,” “communication” and “ACP”), intersected by using the Boolean term “AND,” and resulted in 787 studies. Two researchers followed explicit criteria for two sequential levels of screening, based on titles and abstracts and full papers. A total of 22 studies were included for data analysis. Seven topics (i.e., importance of having ACP conversations, knowledge gap, inclusion of people with dementia in ACP conversations, policy vs. practice, adapting to cognitive changes, adapting to psychosocial changes, and adapting to emotional changes) emerged clustered around two themes (i.e., communicating with people with dementia in ACP, and changes in communication due to dementia). This scoping review provides practical suggestions for healthcare professionals to improve ACP communication and uncovered gaps in research on communication aspects related to dementia in ACP conversations, such as non-verbal behavior, timing and implementation, and personal preferences.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

How Do We Talk With People Living With Dementia About Future Care: A Scoping Review

et al. 2022

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Development and Piloting of a Bereaved Care Partner Survey to Inform Quality Improvement in ALS Supportive Care

Bischoff,

Liera,

Tang

et al. 2024

Journal of Pain and Symptom Management

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Medication management information priorities of people living with dementia and their carers: a scoping review

Clough,

Gnjidic,

Cross

et al. 2024

Age and Ageing

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Background People living with dementia and their carers often experience difficulties in effectively managing medications and have indicated they lack necessary support, information and guidance. Recognising the medication management information needs of this population is an important first step in addressing these issues. Objectives To identify the priorities for information on medication management expressed by people living with dementia and their carers. Methods A scoping review with systematic search was conducted from inception to 12 May 2023 for any original studies that reported the information needs of people living with dementia and their carers (informal, i.e. unpaid or within an existing relationship) regarding medication management. Two authors independently screened the abstracts, full-texts and extracted data. Study characteristics were described descriptively, and themes of information need were extracted using an iterative approach. Results Of the 11 367 records screened, 35 full-texts were included. All studies (n = 35) involved carers, with 17 also including people living with dementia. Most studies (n = 30) were conducted in the community and used qualitative methods (n = 32). Five major themes of information need were identified: critical medication information; medication effects; medication indication(s); disease progression and impact on medications; and safe and appropriate administration of medications. People living with dementia and their carers indicated they need more medication management information generally and want it simple, tailored and relevant. Conclusions This review highlights the key medication information priorities for people living with dementia and their carers and will help guide the provision of medication management guidance and development of new information resources.

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Improving End-of-Life Care for Persons Living With Dementia: Bereaved Caregivers’ Observations and Recommendations

Cited by 9 publications

References 23 publications

How Do We Talk With People Living With Dementia About Future Care: A Scoping Review

How Do We Talk With People Living With Dementia About Future Care: A Scoping Review

Development and Piloting of a Bereaved Care Partner Survey to Inform Quality Improvement in ALS Supportive Care

Medication management information priorities of people living with dementia and their carers: a scoping review

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