ArticleJournal of geriatric psychiatry and neurology2023
Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia.
Article in Journal of geriatric psychiatry and neurology, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
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Who cites it
13 citing papers in PubMed, 1 synthesis or guideline pooled it, 15 citations in OpenAlex.
- Caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia: A systematic review of qualitative evidence.Palliative medicine · 2025Pooled it
- Multidisciplinary recommendations for palliative and supportive care in Creutzfeldt-Jakob disease and related disorders.Age and ageing · 2026Review
- Communication when bone and joint infection in children is suspected : a qualitative study of patients, families, and health professionals.Bone & joint open · 2026Article
- Developing and translating a theory of informal caregiving in Sporadic Creutzfeldt-Jakob disease: a two-phase constructivist grounded theory study.Frontiers in neuroscience · 2026Article
- "It may cost you your money, it costs you your life": a framework for financial hardship in dementia.The Gerontologist · 2025Article
- Article
- "By the Time We Knew …": Poetic Analysis of End-of-Life Caregiving Experiences for Rapidly Progressive and Slower-Duration Dementia Syndromes.Journal of the American Geriatrics Society · 2025Article
- A mapping review of studies exploring the barriers and facilitators to a dementia diagnosis through an intersectionality lens.BJPsych open · 2025Review
- Using a Trauma-Informed Care Approach to Understand Family Caregivers' Experiences of Accessing Formal Supports in Dementia Care.Journal of family nursing · 2025Article
- Dementia Specialty Care Clinicians' Perspectives on Their Role in the Dementia Diagnostic Process and Diagnostic Disclosure.Journal of geriatric psychiatry and neurology · 2025Article
- Single-encounter elicitation framework for diagnostic excellence patient-reported measures: SEE-Dx-PRM.PEC innovation · 2024Article
- Strengthening Primary Care Workforce Capacity in Dementia Diagnosis and Care: A Qualitative Study of Project Alzheimer's Disease-ECHO.Medical care research and review : MCRR · 2024Article
- Caregiver Burden in Prion Disease.Dementia and geriatric cognitive disorders extraArticle
Corrections and comments
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Authors and funding
7 authors at 2 institutions in 2 countries.
Funding
Abstract
introductionPeople 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).
methodseIn 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.
resultsWe 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.
conclusionsFindings 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.
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