Dataset Information

Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.

ABSTRACT:

Introduction

People with suspected Alzheimer's disease and related dementias (ADRD) and their families experience a burdensome process while seeking a diagnosis. These challenges are problematic in the most common dementia syndromes, but they can be even more distressing in rarer, atypical syndromes such as rapidly progressive dementias (RPDs), which can be fatal within months from onset. This study is an examination of the diagnostic journey experience from the perspective of caregivers of people who died from the prototypic RPD, sporadic Creutzfeldt-Jakob Disease (sCJD).

Methods

eIn this mixed-methods study, qualitative data were drawn from interviews with former caregivers of 12 people who died from sCJD. Chart review data were drawn from research and clinical chart data about the person with sCJD. Data were analyzed by a multidisciplinary research team using qualitative and descriptive statistical analysis.

Results

We identified 4 overarching themes that characterized the experience of the diagnostic journey in sCJD: clinician knowledge, clinician communication, experiences of uncertainty, and the caregiver as advocate. We also identified 4 phases along the diagnostic journey: recognition, the diagnostic workup, diagnosis, and post-diagnosis. Sub-themes within each phase include struggles to recognize what is wrong, complex processes of testing and referrals, delay and disclosure of diagnosis, and access to resources post-diagnosis.

Conclusions

Findings suggest that more work is needed to improve clinician diagnostic knowledge and communication practices. Furthermore, caregivers need better support during the diagnostic journey. What we learn from studying sCJD and other RPDs is likely applicable to other more common dementias.

SUBMITTER: Sideman AB

PROVIDER: S-EPMC10265278 | biostudies-literature | 2023 Jul

REPOSITORIES: biostudies-literature

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Publications

Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.

Sideman Alissa Bernstein AB Gilissen Joni J Harrison Krista L KL Garrett Sarah B SB Terranova Michael J MJ Ritchie Christine S CS Geschwind Michael D MD

Journal of geriatric psychiatry and neurology 20221122 4

<h4>Introduction</h4>People with suspected Alzheimer's disease and related dementias (ADRD) and their families experience a burdensome process while seeking a diagnosis. These challenges are problematic in the most common dementia syndromes, but they can be even more distressing in rarer, atypical syndromes such as rapidly progressive dementias (RPDs), which can be fatal within months from onset. This study is an examination of the diagnostic journey experience from the perspective of caregivers ...[more]

PMID: 36412170

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Dataset Information

Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.

Introduction

Methods

Results

Conclusions

Publications

Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.

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