Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia

Alissa Bernstein Sideman; Joni Gilissen; Krista L Harrison; Sarah B Garrett; Michael J Terranova; Christine S Ritchie; Michael D Geschwind

doi:10.1177/08919887221135552

Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia

Alissa Bernstein Sideman, Joni Gilissen, Krista L Harrison, Sarah B Garrett, Michael J Terranova, Christine S Ritchie, Michael D Geschwind

Research output: Contribution to journal › Article › peer-review

3 Citations (Scopus)

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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.

Original language	English
Pages (from-to)	282-294
Number of pages	13
Journal	Journal of Geriatric Psychiatry and Neurology
Volume	36
Issue number	4
Early online date	22 Nov 2022
DOIs	https://doi.org/10.1177/08919887221135552
Publication status	Published - Jul 2023

Bibliographical note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Global Brain Health Institute (GBHI), Alzheimer’s Association, and Alzheimer’s Society Pilot Awards for Global Brain Health Leaders, as well as the National Institutes of Health (NIH), National Institute on Aging (NIA) grants R01-AG031189 (MDG), R56 AG055619 (MDG) and R01 AG062562 (MDG) and the Michael J. Homer Family Fund (MDG). Additional funding supporting investigators’ time included the Atlantic Fellowship for Equity in Brain Health (KLH, ABS, JG), AHRQ T32HS022241(SBG), Maurange Fund, King Baudouin Foundation (JG), NIH/NIA K01AG059831 (KLH) and K01AG059840 (ABS), and California State Alzheimer’s Disease Program Grant 19-10,615 (ABS).

Publisher Copyright:
© The Author(s) 2022.

Copyright:
Copyright 2022 Elsevier B.V., All rights reserved.

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2022_SidemanAB_JGeriatrPsychiatryNeurolAccepted author manuscript, 322 KBLicence: Unspecified
92263332Final published version, 560 KBLicence: CC BY

Cite this

@article{8a3d8e568c35492d996c2034fa4b1bd7,

title = "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.",

author = "Sideman, {Alissa Bernstein} and Joni Gilissen and Harrison, {Krista L} and Garrett, {Sarah B} and Terranova, {Michael J} and Ritchie, {Christine S} and Geschwind, {Michael D}",

note = "Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Global Brain Health Institute (GBHI), Alzheimer{\textquoteright}s Association, and Alzheimer{\textquoteright}s Society Pilot Awards for Global Brain Health Leaders, as well as the National Institutes of Health (NIH), National Institute on Aging (NIA) grants R01-AG031189 (MDG), R56 AG055619 (MDG) and R01 AG062562 (MDG) and the Michael J. Homer Family Fund (MDG). Additional funding supporting investigators{\textquoteright} time included the Atlantic Fellowship for Equity in Brain Health (KLH, ABS, JG), AHRQ T32HS022241(SBG), Maurange Fund, King Baudouin Foundation (JG), NIH/NIA K01AG059831 (KLH) and K01AG059840 (ABS), and California State Alzheimer{\textquoteright}s Disease Program Grant 19-10,615 (ABS). Publisher Copyright: {\textcopyright} The Author(s) 2022. Copyright: Copyright 2022 Elsevier B.V., All rights reserved.",

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Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia. / Sideman, Alissa Bernstein; Gilissen, Joni; Harrison, Krista L; Garrett, Sarah B; Terranova, Michael J; Ritchie, Christine S; Geschwind, Michael D.

In: Journal of Geriatric Psychiatry and Neurology, Vol. 36, No. 4, 07.2023, p. 282-294.

Research output: Contribution to journal › Article › peer-review

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AU - Sideman, Alissa Bernstein

AU - Gilissen, Joni

AU - Harrison, Krista L

AU - Garrett, Sarah B

AU - Terranova, Michael J

AU - Ritchie, Christine S

AU - Geschwind, Michael D

N1 - Funding Information: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Global Brain Health Institute (GBHI), Alzheimer’s Association, and Alzheimer’s Society Pilot Awards for Global Brain Health Leaders, as well as the National Institutes of Health (NIH), National Institute on Aging (NIA) grants R01-AG031189 (MDG), R56 AG055619 (MDG) and R01 AG062562 (MDG) and the Michael J. Homer Family Fund (MDG). Additional funding supporting investigators’ time included the Atlantic Fellowship for Equity in Brain Health (KLH, ABS, JG), AHRQ T32HS022241(SBG), Maurange Fund, King Baudouin Foundation (JG), NIH/NIA K01AG059831 (KLH) and K01AG059840 (ABS), and California State Alzheimer’s Disease Program Grant 19-10,615 (ABS). Publisher Copyright: © The Author(s) 2022. Copyright: Copyright 2022 Elsevier B.V., All rights reserved.

PY - 2023/7

Y1 - 2023/7

N2 - 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.

AB - 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.

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Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia

Abstract

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SRP69: SRP-Onderzoekszwaartepunt: Addressing the challenges around serious illness, palliative care and the end of life: public health, health services and clinical innovations

AIIFUND73: Inequities at the end-of-life-in cancer and Dementia: A Mixed-Methods study

ANI274: Navigating community dwelling persons living with dementia and family caregivers through stages of dementia: Acceptability and adaptation of the personalized, scalable Care Ecosystem via stakeholder interviews and workshops

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Caregiver Experiences Navigating the Diagnostic Journey in a Rapidly Progressing Dementia

Abstract

Bibliographical note

Access to Document

Other files and links

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Projects

SRP69: SRP-Onderzoekszwaartepunt: Addressing the challenges around serious illness, palliative care and the end of life: public health, health services and clinical innovations

AIIFUND73: Inequities at the end-of-life-in cancer and Dementia: A Mixed-Methods study

ANI274: Navigating community dwelling persons living with dementia and family caregivers through stages of dementia: Acceptability and adaptation of the personalized, scalable Care Ecosystem via stakeholder interviews and workshops

Cite this