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

SUBMITTER: Sideman AB 

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

REPOSITORIES: biostudies-literature