Care Setting Transitions for People With Dementia: Qualitative Perspectives of Current and Former Care Partners

Radcliffe, Kate; Halim, Madina; Ritchie, Christine S.; Maus, Marlon; Harrison, Krista L.

doi:10.1177/10499091231155601

Cited by 3 publications

(6 citation statements)

References 42 publications

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“…Third, while we sampled for thematic saturation in the primary study, this is not the case for this sub-analysis. Nevertheless, many of the themes identified resonate with prior studies in this area [17]. Our results suggest an opportunity to improve home health care for patients and caregivers by integrating palliative care and additional home-based supports, particularly for adults with dementia and their caregivers.…”

Section: Discussionsupporting

confidence: 61%

Care challenges of home health patients living with dementia: a pathway forward with palliative care

Cole,

Dafoe,

Tietbohl

et al. 2023

BMC Palliat Care

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Background Home health care (HHC) is a leading source of care support for older adults with serious illness, particularly patients living with dementia (PLWD). Demand for HHC is expected to continue to grow, driven by an aging population and preference for non-institutional care. HHC agencies are frequently under pressure to find effective approaches for improving care delivery and quality. One strategy that has the potential to improve the quality of life and patient satisfaction in HHC for PLWD is the integration of palliative care. Therefore, we sought to understand the experiences and needs of PLWD and their family caregivers specifically focusing on ways that HHC and palliative care may be integrated as part of the care transition from hospital to home, to better support PLWD and their families. Methods We conducted a descriptive qualitative study focusing on the perspectives of patients, caregivers, and healthcare team members about palliative care delivery for patients receiving HHC. Interviews were audio-recorded and professionally transcribed. In this analysis, we specifically report on dementia-related content using an iterative, team-based thematic analysis approach. Results We identified three themes: 1) ’Living in the Whirlwind’ which describes the many competing demands on caregivers time and the associated feeling of loss of control, 2) ’Thinking Ahead’ which describes the importance of thinking beyond the day-to-day tasks to begin planning for the future, and 3) ‘Pathways Forward’ which describes the integration of palliative care into HHC to provide enhanced support for PLWD and their caregivers. Conclusion In this qualitative study, our formative work identified the importance of providing anticipatory guidance (e.g., safety, advance care planning) coupled with emotional and pragmatic care supports (e.g., finding resources, navigating insurance) to sustain caregivers who are struggling with the whirlwind.

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Section: Discussionsupporting

confidence: 61%

Care challenges of home health patients living with dementia: a pathway forward with palliative care

Cole,

Dafoe,

Tietbohl

et al. 2023

BMC Palliat Care

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“…When making decisions about end‐of‐life care for people with dementia, surrogates presented uncertainty in the following areas: (a) patients' status, prognoses and disease trajectories (Dening et al., 2012; Fisher et al., 2022; Kelly et al., 2002; Kupeli et al., 2019; Kwak & Noh, 2018; Lopez & Guarino, 2011; Radcliffe et al., 2023; Van Rickstal et al., 2019), (b) end‐of‐life treatment options and their risks and benefits (Sodowsky, 2012; Stone & Jones, 2009; Truglio‐Londrigan & Slyer, 2019; Unson et al., 2015), (c) the right decisions about end‐of‐life care (Dening et al., 2012; Fetherstonhaugh et al., 2017, 2019; Kelly et al., 2002; Kupeli et al., 2019; Lopez & Guarino, 2011; Mezey et al., 1996; Unson et al., 2015), (d) patients' values, wishes and treatment preferences (Dening et al., 2016; Kwak & Noh, 2018; Lamahewa et al., 2018), (e) their roles and responsibilities as surrogate decision‐makers (Fetherstonhaugh et al., 2019; Lamahewa et al., 2018), (f) ways to make decisions (Fetherstonhaugh et al., 2017), and (g) emotional and practical preparation for a patient's death (Fisher et al., 2022). Figure 2 depicts surrogate uncertainty, including its antecedents, how surrogates process uncertainty, and the development of new life perspectives.…”

Section: Resultsmentioning

confidence: 99%

“…(a) patients' status, prognoses and disease trajectories (Dening et al, 2012;Fisher et al, 2022;Kelly et al, 2002;Kupeli et al, 2019;Kwak & Noh, 2018;Lopez & Guarino, 2011;Radcliffe et al, 2023;Van Rickstal et al, 2019), (b) end-of-life treatment options and their risks and benefits (Sodowsky, 2012;Stone & Jones, 2009;Truglio-Londrigan & Slyer, 2019;Unson et al, 2015), (c) the right decisions about end-of-life care (Dening et al, 2012;Fetherstonhaugh et al, 2017Fetherstonhaugh et al, , 2019Kelly et al, 2002;Kupeli et…”

Section: Uncertainty In Surrogate Decision-making Regarding End-of-li...mentioning

confidence: 99%

Uncertainty in surrogate decision‐making about end‐of‐life care for people with dementia: An integrative review

Kim,

Cho,

Shin

et al. 2024

Journal of Advanced Nursing

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AimTo describe uncertainty in surrogate decision‐making regarding end‐of‐life care for people with dementia using Mishel's reconceptualized uncertainty in illness theory.DesignIntegrative literature review using Whittemore and Knafl's approach.Data SourcesPubMed, CINAHL, EMBASE, Scopus and Web of Science were searched using terms such as uncertainty/unpredictability, decision‐making/advance care planning/end‐of‐life care planning, surrogate/family/caregiver/proxy and dementia. The search was initially conducted on 28 September 2021 and updated on 31 July 2023.Review MethodsThrough systematic screening, 20 research articles were included in the analysis. Content related to uncertainty in surrogate decision‐making regarding end‐of‐life care was extracted and analysed, focusing on the reconceptualized uncertainty in illness theory.ResultsFirst, surrogate uncertainty exists in various areas of surrogate decision‐making regarding end‐of‐life care. Second, antecedents of surrogate uncertainty include numerous intrinsic and extrinsic factors. Third, surrogates exhibited some negative psychological responses to uncertainty but continually processed and structured their uncertainty through certain approaches, leading them to grow as decision‐makers. Finally, research‐based evidence on surrogates' processing of uncertainty and shifts to new life perspectives remains limited.ConclusionSurrogates' uncertainty in decision‐making regarding end‐of‐life care for people with dementia is well characterized using the reconceptualized uncertainty in illness theory. Healthcare providers should help surrogates manage their uncertainty in surrogate decision‐making more constructively throughout the dementia trajectory.Implications for the Profession and/or Patient CareThe findings highlight the importance of assessing how surrogates process uncertainty and gauging how to help them process uncertainty and transition to new life perspectives.ImpactThis review contributes to healthcare professionals' understanding of surrogates' uncertainty in end‐of‐life care planning for people with dementia, especially what they are uncertain about, what influences their uncertainty and how they process it.Reporting MethodThis study adheres to the PRISMA reporting guidelines.Patient or Public ContributionNo patient or public contribution.

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“…9 There is high uncertainty among dementia caregivers about future care needs and they seek healthcare provider guidance on options for care at home or placement within the community. 10 With support and training, caregivers can feel confident in their ability to plan and prepare for care as dementia progresses and their roles and responsibilities evolve. [11][12][13] Caregiver activation, initially identified in the cancer literature, is defined as the caregiver's willingness and ability to navigate care needs 14 and is characterized as having the attitude, knowledge, and skills to provide care.…”

Section: Introductionmentioning

confidence: 99%

“…9 There is high uncertainty among dementia caregivers about future care needs and they seek healthcare provider guidance on options for care at home or placement within the community. 10…”

Section: Introductionmentioning

confidence: 99%

Improving Dementia Caregiver Activation With a Brief Communication Module

Wittenberg,

Sullivan,

Rios

2023

Am J Hosp Palliat Care

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Objective: Palliative care often plays a pivotal role in supporting informal caregivers of persons living with dementia who experience a lack of continuity in care. Dementia caregiver activation, the caregiver’s willingness and ability to navigate care needs, requires communication skills for developing relationships with healthcare providers. Communication activation is important because caregivers facilitate physician and patient information exchange. This study aimed to explore changes in communication outcomes (attitude, knowledge, and skills) and impact on caregiver communication activation (confidence, self-report) following completion of a brief communication module. Methods: A 15-minute asynchronous online module was developed to provide caregivers with communication skills for working with doctors and nurses. Caregivers completed pre/post module measures of communication outcomes, a vignette for applying communication strategies and were interviewed within a week of module completion to assess self-reported communication activation. Module acceptability was also evaluated. Results: Communication knowledge ( P < .01) significantly increased and nearly all participants (99%) demonstrated use of module-specific communication skills after completing the module. While not statistically significant, caregiver attitudes were in the expected direction. Caregiver self-reported communication confidence ( P < .001) significantly increased and 84% of caregivers described communication activation at post-module. Caregivers (83%) were likely to recommend the module. Conclusions: The brief communication module for dementia caregivers in this project offers an online resource with low time-burden that results in caregiver communication activation. Future testing in the clinical setting will increase understanding of its efficacy and integration and could be a viable resource for palliative care providers.

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Care Setting Transitions for People With Dementia: Qualitative Perspectives of Current and Former Care Partners

Cited by 3 publications

References 42 publications

Care challenges of home health patients living with dementia: a pathway forward with palliative care

Care challenges of home health patients living with dementia: a pathway forward with palliative care

Uncertainty in surrogate decision‐making about end‐of‐life care for people with dementia: An integrative review

Improving Dementia Caregiver Activation With a Brief Communication Module

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