A qualitative analysis of patients’ day-to-day living with functional cognitive disorder (FCD)

Nadia Mantovani; Norman Poole; Sarah Cope; Serena Vanzan; Aimee Duffus; T Williams; Jared Smith; Barbara Barrett; Martin Scicluna; Sarah Beardmore; Mark Edwards; Robert Howard

doi:10.1080/09638288.2025.2460725

A qualitative analysis of patients’ day-to-day living with functional cognitive disorder (FCD)

Nadia Mantovani, Norman Poole, Sarah Cope, Serena Vanzan, Aimee Duffus, T Williams, Jared Smith, Barbara Barrett, Martin Scicluna, Sarah Beardmore, Mark Edwards, Robert Howard

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

Abstract

Purpose: Functional cognitive disorder (FCD) is an increasingly recognised condition which causes significant disability and distress. While it is known to be associated with depression, anxiety and reduced functioning, like other functional neurological disorders it may be marred by stigma. To date, little is known about the lived experience of those with FCD. Materials & methods: As part of a randomised controlled feasibility trial of online group Acceptance and Commitment Therapy (ACT) for FCD we conducted in-depth qualitative interviews and utilised a thematic analysis approach to explore the challenges of living with FCD; how individuals cope with the symptoms; and their experiences of healthcare services. Results: We recruited six women and three men, with a median age of 54. They described living with FCD which included experiences of loss of identity, altered role, feelings of confusion, frustration and low self-esteem, stigma, social isolation, and dismissal by healthcare services. Nevertheless, suffers strove to find strategies to ameliorate their symptoms. Conclusions: FCD is a common and disabling condition which like other functional neurological symptoms leads to altered sense of self and unsatisfactory interactions with others, including healthcare professionals. The diagnosis should be made on positive grounds, clearly explained, and potential therapies investigated.

Original language	English
Journal	Disability & Rehabilitation
Early online date	4 Feb 2025
DOIs	https://doi.org/10.1080/09638288.2025.2460725
Publication status	E-pub ahead of print - 4 Feb 2025

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10.1080/09638288.2025.2460725

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title = "A qualitative analysis of patients{\textquoteright} day-to-day living with functional cognitive disorder (FCD)",

abstract = "Purpose: Functional cognitive disorder (FCD) is an increasingly recognised condition which causes significant disability and distress. While it is known to be associated with depression, anxiety and reduced functioning, like other functional neurological disorders it may be marred by stigma. To date, little is known about the lived experience of those with FCD. Materials & methods: As part of a randomised controlled feasibility trial of online group Acceptance and Commitment Therapy (ACT) for FCD we conducted in-depth qualitative interviews and utilised a thematic analysis approach to explore the challenges of living with FCD; how individuals cope with the symptoms; and their experiences of healthcare services. Results: We recruited six women and three men, with a median age of 54. They described living with FCD which included experiences of loss of identity, altered role, feelings of confusion, frustration and low self-esteem, stigma, social isolation, and dismissal by healthcare services. Nevertheless, suffers strove to find strategies to ameliorate their symptoms. Conclusions: FCD is a common and disabling condition which like other functional neurological symptoms leads to altered sense of self and unsatisfactory interactions with others, including healthcare professionals. The diagnosis should be made on positive grounds, clearly explained, and potential therapies investigated.",

author = "Nadia Mantovani and Norman Poole and Sarah Cope and Serena Vanzan and Aimee Duffus and T Williams and Jared Smith and Barbara Barrett and Martin Scicluna and Sarah Beardmore and Mark Edwards and Robert Howard",

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T1 - A qualitative analysis of patients’ day-to-day living with functional cognitive disorder (FCD)

AU - Mantovani, Nadia

AU - Poole, Norman

AU - Cope, Sarah

AU - Vanzan, Serena

AU - Duffus, Aimee

AU - Williams, T

AU - Smith, Jared

AU - Barrett, Barbara

AU - Scicluna, Martin

AU - Beardmore, Sarah

AU - Edwards, Mark

AU - Howard, Robert

PY - 2025/2/4

Y1 - 2025/2/4

N2 - Purpose: Functional cognitive disorder (FCD) is an increasingly recognised condition which causes significant disability and distress. While it is known to be associated with depression, anxiety and reduced functioning, like other functional neurological disorders it may be marred by stigma. To date, little is known about the lived experience of those with FCD. Materials & methods: As part of a randomised controlled feasibility trial of online group Acceptance and Commitment Therapy (ACT) for FCD we conducted in-depth qualitative interviews and utilised a thematic analysis approach to explore the challenges of living with FCD; how individuals cope with the symptoms; and their experiences of healthcare services. Results: We recruited six women and three men, with a median age of 54. They described living with FCD which included experiences of loss of identity, altered role, feelings of confusion, frustration and low self-esteem, stigma, social isolation, and dismissal by healthcare services. Nevertheless, suffers strove to find strategies to ameliorate their symptoms. Conclusions: FCD is a common and disabling condition which like other functional neurological symptoms leads to altered sense of self and unsatisfactory interactions with others, including healthcare professionals. The diagnosis should be made on positive grounds, clearly explained, and potential therapies investigated.

AB - Purpose: Functional cognitive disorder (FCD) is an increasingly recognised condition which causes significant disability and distress. While it is known to be associated with depression, anxiety and reduced functioning, like other functional neurological disorders it may be marred by stigma. To date, little is known about the lived experience of those with FCD. Materials & methods: As part of a randomised controlled feasibility trial of online group Acceptance and Commitment Therapy (ACT) for FCD we conducted in-depth qualitative interviews and utilised a thematic analysis approach to explore the challenges of living with FCD; how individuals cope with the symptoms; and their experiences of healthcare services. Results: We recruited six women and three men, with a median age of 54. They described living with FCD which included experiences of loss of identity, altered role, feelings of confusion, frustration and low self-esteem, stigma, social isolation, and dismissal by healthcare services. Nevertheless, suffers strove to find strategies to ameliorate their symptoms. Conclusions: FCD is a common and disabling condition which like other functional neurological symptoms leads to altered sense of self and unsatisfactory interactions with others, including healthcare professionals. The diagnosis should be made on positive grounds, clearly explained, and potential therapies investigated.

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DO - 10.1080/09638288.2025.2460725

M3 - Article

SN - 0963-8288

JO - Disability & Rehabilitation

JF - Disability & Rehabilitation

ER -

A qualitative analysis of patients’ day-to-day living with functional cognitive disorder (FCD)

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