Care Values in Dementia: Patterns of Perception and Incongruence Among Family Care Dyads

Miller, Lyndsey M.; Whitlatch, Carol J.; Lee, Christopher S.; Caserta, Michael S.

doi:10.1093/geront/gny008

Cited by 13 publications

(14 citation statements)

References 46 publications

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“…For people living with dementia the realities of getting into the community and playing an active part were far from straightforward. Supportive interventions need to align these various tensions [31]. Interventions that have successfully increased time lived at home were multicomponent, incorporating a focus on communication and relationships, the needs and goals of both people living with dementia and their family members and linkage or referral to other resources [15][16][17].…”

Section: Discussionmentioning

confidence: 99%

“I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

et al. 2020

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Background: Most people living with dementia want to remain in their own homes, supported by family and paid carers. Care at home often breaks down, necessitating transition to a care home and existing interventions are limited. To inform the development of psychosocial interventions to enable people with dementia to live well for longer at home, we qualitatively explored the views of people living with dementia, family carers and health and social care professionals, on how to achieve and maintain independence at home and what impedes this. Methods: We conducted an inductive thematic analysis of qualitative interviews with 11 people living with dementia, 19 professionals and 22 family carers in England. Results: We identified four overarching themes: being in a safe and familiar environment, enabling not disabling care, maintaining relationships and community connectedness, and getting the right support. For people living with dementia, the realities of staying active were complex: there was a tension between accepting support that enabled independence and a feeling that in doing so they were accepting dependency. Their and professionals' accounts prioritised autonomy and 'living well with dementia', while family carers prioritised avoiding harm. Professionals promoted positive risk-taking and facilitating independence, whereas family carers often felt they were left holding this risk. Discussion: Psychosocial interventions must accommodate tensions between positive risk-taking and avoiding harm, facilitating autonomy and providing support. They should be adaptive and collaborative, combining selfmanagement with flexible support. Compassionate implementation of rights-based dementia care must consider the emotional burden for family carers of supporting someone to live positively with risk.

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Section: Discussionmentioning

confidence: 99%

“I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

et al. 2020

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“…As Baldwin (2006) rightly argues, the narratives of carers or professionals tend to get prioritised over the narratives of people with dementia. We acknowledge that this project has not addressed the deprioritisation of the voices of people with dementia and that carers may have underestimated the person with dementia's capacities (Miller et al, 2019).…”

Section: Discussionmentioning

confidence: 99%

Beyond crisis: Enacted sense-making among ethnic minority carers of people with dementia in Australia

et al. 2020

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The ‘family crisis’ narrative is frequently used in dementia studies to explain ethnic minority families’ pathways to health and aged care and why there is delayed dementia diagnoses in ethnic minority communities. Such narratives may obscure the family carers’ agency in negotiating services and managing personal, social and structural burdens in the lead up to diagnosis. To illuminate agency, this article describes ethnic minority families’ pathways to a dementia diagnosis using the concept of sense-making. Three case studies were drawn from 56 video interviews with family carers of older adults with dementia from Chinese, Arab and Indian backgrounds. Interviews were conducted across Australia from February to August 2018, then translated, transcribed and thematically analysed. Findings suggest families did not enter into formal care because of a crisis, instead navigating fragmented systems and conflicting advice to obtain a dementia diagnosis and access to relevant care. This experience was driven by sense-making (a search for plausible explanations) that involved family carers interpreting discrepant cues in changes to the behaviour of the person with dementia over time, managing conflicting (medical) advice about these discrepancies and reinterpreting their relationships with hindsight. The sense-making concept offers a more constructive hermeneutic than the ‘family crisis’ narrative as it illuminates the agency of carers’ in understanding changed behaviours, negotiating services and managing personal, social and structural barriers pre-diagnosis. The concept also demonstrates the need for a multimodal approach to promoting timely diagnosis of dementia in ethnic minority communities through dementia awareness and literacy campaigns as well as initiatives that address structural inequities.

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“…Family relationship strain can divert the focus of a dementia care needs assessment to the interpersonal dynamics in the family. Strain in the relationship also negatively affects the family caregiver’s subjective appraisal of the values of the person living with dementia ( Miller et al, 2018 , 2019 ; Reamy et al, 2011 ), which ultimately impairs the ability to assess care needs. One clear advantage of the READyR Program is that data from sensors have the capacity to provide new objective insights into safety, function, and routines in the home.…”

Section: Discussionmentioning

confidence: 99%

“…The hypothesized mechanism of action in achieving values-based care is identifying unmet needs based upon the incongruence between those care values and the realities of dyads’ daily life that can be observed by digital activity patterns. The Stress Process Model ( Judge et al, 2010 ; Pearlin et al, 1990 ) and our previous work applying this model to studies of care values in dementia care dyads ( Miller et al, 2018 , 2019 ) provide the theoretical basis for understanding the process by which unmet or overly stressful care needs become detrimental to the well-being of the dementia care dyad (person living with dementia and a family care partner).…”

Section: The Readyr Frameworkmentioning

confidence: 99%

The Remote Assessment and Dynamic Response Program: Development of an In-Home Dementia-Related Care Needs Assessment to Improve Well-Being

Miller

Solomon

Whitlatch

et al. 2022

Innovation in Aging

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Background and Objectives The Remote Assessment and Dynamic Response (READyR) Program was developed in order to address the current lack of early-stage dementia care planning programs that assess the care needs of persons with dementia. The goal was to create a program informed by care values and ongoing ecologically-valid data. The objectives of this study are to describe the development and design process of the READyR Program, and to evaluate the utility of the READyR Program for identifying dementia-related care needs. Research Design and Methods A prototype of the web-based READyR program tool was first created using digital activity data that was collected by previous studies using a platform of multimodal sensors installed in the homes of older adult couples with and without dementia. Digital activity data were then mapped onto potential care values (e.g., safety & autonomy) to create a values-based needs assessment that is tailored to the individual care dyad. Next, evaluation of the READyR Program by 11 professional dementia care coordinators and case managers (across three semi-structured focus groups) was used to explore the utility of READyR for assessing dementia-related needs. Qualitative description using conventional content analysis was used to iteratively code focus group data and to describe prevalent themes. Results Prevalent focus groups themes included barriers to (e.g., family relationship strain) and facilitators of (e.g., tailored assessments) the optimal process for assessing dementia-related care needs by care coordinators, as well as advantages to (e.g., providing new objective insights into function, and routines) and disadvantages of (e.g., bringing up new questions about care) incorporating the remote monitoring data into a values-based needs assessment. Discussion and Implications READyR has the potential to help family members, as well as care coordinators and providers, gain insight into the values-based care needs of persons with early-stage dementia.

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Care Values in Dementia: Patterns of Perception and Incongruence Among Family Care Dyads

Cited by 13 publications

References 46 publications

“I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

“I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives

Beyond crisis: Enacted sense-making among ethnic minority carers of people with dementia in Australia

The Remote Assessment and Dynamic Response Program: Development of an In-Home Dementia-Related Care Needs Assessment to Improve Well-Being

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