To what extent does diagnosis matter? Dementia diagnosis, trouble interpretation and caregiving network dynamics

Brossard, Baptiste; Carpentier, Normand

doi:10.1111/1467-9566.12501

Cited by 13 publications

(23 citation statements)

References 41 publications

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“…2015). Understanding diagnosis in relation to ageing has also been examined, particularly in cases such as Alzheimer’s and dementia, revealing the importance of listening to both caregivers and patients about their experiences of receiving a diagnosis regardless of cognitive condition (Brossard and Carpentier 2012, Schrag et al . 2018).…”

Section: Introductionmentioning

confidence: 99%

‘That thing in his head’: Aboriginal and non‐Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses

Hamilton

Maslen

Watkins

et al. 2020

Sociology Health & Illness

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Little is known about the significance of cultural differences to how caregivers receive a diagnosis of neurodevelopmental disability. As part of a Fetal Alcohol Spectrum Disorder prevalence study among sentenced, detained youth, our qualitative study explored the experiences of diagnostic assessment among detained young people and their caregivers. We present findings from the perspectives of caregivers. In conversation with the sociology of diagnosis literature, we present vignettes of three Aboriginal and two non-Aboriginal caregivers' experiences of the diagnostic assessment process. We found that Aboriginal caregivers conceptualised their children's diagnosis and ongoing management in the context of their family networks and community. In contrast, non-Aboriginal caregivers focused on how the diagnosis would affect their child and interactions with various institutions including healthcare systems and schools. Caregivers' engagement with diagnostic reports and resources also followed cultural lines. Reflections on intergenerational drinking were voiced by Aboriginal caregivers, who expressed shame at receiving diagnosis. These findings advance our appreciation of cultural difference in receiving a diagnosis, the examination of which is in its nascent stages. We also suggest ways to mitigate harm from a stigmatising diagnosis and soften the well-established effects of medical dominance over the process of defining a person's capacity and status.

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Section: Introductionmentioning

confidence: 99%

‘That thing in his head’: Aboriginal and non‐Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses

Hamilton

Maslen

Watkins

et al. 2020

Sociology Health & Illness

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“…Similarly, people with dementia who felt supported by their social circle coped better with the diagnosis. Interestingly, Brossard and Carpentier [23] noted the influence of patients’ living arrangement in the timing of the diagnosis. Whereas older adults living with someone were diagnosed in the early stages of their condition, older adults living alone often received a diagnosis of dementia later, once serious manifestations of symptoms occurred, such as hygiene problems.…”

Section: Introductionmentioning

confidence: 99%

“…Those living alone are often responsible for their household [23, 24], and they might lack informal caregivers nearby [25]. Further, older adults living alone are often independent and eager to remain in their home as long as possible [26], a goal which can be threatened by a diagnosis of MCI or AD.…”

Section: Introductionmentioning

confidence: 99%

The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer’s Disease When One Lives Alone

Portacolone

Johnson

Covinsky

et al. 2018

JAD

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Background One third of older adults with cognitive impairment live alone and are at high risk for poor health outcomes. Little is known about how older adults who live alone experience the process of receiving a diagnosis of mild cognitive impairment (MCI) or Alzheimer’s disease (AD). Objective The aim of this study was to understand the effects and meanings of receiving a diagnosis of MCI or AD on the lived experience of older adults living alone. Methods This is a qualitative study of adults age 65 and over living alone with cognitive impairment. Participants’ lived experiences were elicited through ethnographic interviews and participant observation in their homes. Using a qualitative content analysis approach, interview transcripts and fieldnotes were analyzed to identify codes and themes. Results Twenty-nine older adults and 6 members of their social circles completed 114 ethnographic interviews. Core themes included: relief, distress, ambiguous recollections, and not knowing what to do. Participants sometimes felt uplifted and relieved by the diagnostic process. Some participants did not mention having received a diagnosis or had only partial recollections about it. Participants reported that, as time passed, they did not know what to do with regard to the treatment of their condition. Sometimes they also did not know how to prepare for a likely worsening of their condition, which they would experience while living alone. Conclusion Findings suggest the need for more tailored care and follow-up as soon as MCI or AD is diagnosed in persons living alone.

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“…quality of life (EQ-5D and C-DEMQOL) higher. The framework for interviews and analysis will draw on stress, appraisal and coping theory 23. Our primary analysis will be a multiple linear regression model with DEMQOL-Proxy as outcome, baseline DEMQOL-Proxy as covariate, and stage at diagnosis as our main covariate.…”

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confidence: 99%

“…Interview guides will be developed with the research team from the literature21,22 and our PPI panel. The framework for interviews and analysis will draw on stress, appraisal and coping theory 23. Based on earlier work we anticipate three broad areas that are likely to be affected by when and how they receivedtheir dementia diagnosis: (a) how it affects individuals' sense of self, relationships and ability to maintain activities that are important to them as active citizens; (b) how it enables them (or not) to adapt and use technologies and existing networks of support; and (c) how it links to the use of information and the ability to connect with and navigate professional systems of support.…”

mentioning

confidence: 99%

DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper

Farina

Hicks

Baxter

et al. 2019

Int J Geriat Psychiatry

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Objectives: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers. Method: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings.Outcomes: During the life of the programme, analysing baseline results and then followup of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia.

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To what extent does diagnosis matter? Dementia diagnosis, trouble interpretation and caregiving network dynamics

Cited by 13 publications

References 41 publications

‘That thing in his head’: Aboriginal and non‐Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses

‘That thing in his head’: Aboriginal and non‐Aboriginal Australian caregiver responses to neurodevelopmental disability diagnoses

The Effects and Meanings of Receiving a Diagnosis of Mild Cognitive Impairment or Alzheimer’s Disease When One Lives Alone

DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper

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