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Aging & Mental Health Volume 26, 2022 - Issue 2
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Family Caregivers

‘They simply do not understand’: a focus group study exploring the lived experiences of family caregivers of people with frontotemporal dementia

Jeroen Bruinsmaa Department of Psychiatry and Neuropsychology/Alzheimer Center Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the NetherlandsCorrespondence[email protected] [email protected]
ORCID Iconhttps://orcid.org/0000-0002-7964-0267View further author information
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Kirsten Peetooma Department of Psychiatry and Neuropsychology/Alzheimer Center Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the NetherlandsORCID Iconhttps://orcid.org/0000-0001-5933-0213View further author information
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Christian Bakkerb Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, the Netherlands;c Centre for Specialized Geriatric Care, Groenhuysen, Roosendaal, the NetherlandsORCID Iconhttps://orcid.org/0000-0002-7176-2796View further author information
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Lizzy Bootsa Department of Psychiatry and Neuropsychology/Alzheimer Center Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the NetherlandsORCID Iconhttps://orcid.org/0000-0002-8309-4502View further author information
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Frans Verheya Department of Psychiatry and Neuropsychology/Alzheimer Center Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the NetherlandsORCID Iconhttps://orcid.org/0000-0002-8307-8406View further author information
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Marjolein de Vugta Department of Psychiatry and Neuropsychology/Alzheimer Center Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the NetherlandsCorrespondence[email protected] [email protected]
ORCID Iconhttps://orcid.org/0000-0002-2113-4134View further author information
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Pages 277-285 | Received 07 Aug 2020, Accepted 25 Nov 2020, Published online: 16 Dec 2020

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Maud M. J. Daemen, Lizzy M. M. Boots, Mayke Oosterloo, Marjolein E. de Vugt & Annelien A. Duits. (2023) Facilitators and barriers in caring for a person with Huntington’s disease: input for a remote support program. Aging & Mental Health 0:0, pages 1-10.
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Victoria A. Grunberg, Sarah M. Bannon, Paula Popok, Mira Reichman, Bradford C. Dickerson & Ana-Maria Vranceanu. (2022) A race against time: couples’ lived diagnostic journeys to young-onset dementia. Aging & Mental Health 26:11, pages 2223-2232.
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Articles from other publishers (8)

Stevie Hendriks, Kirsten Peetoom, Huibert Tange, Janne Papma, Wiesje M. van der Flier, Raymond Koopmans, Christian Bakker, Sebastian Köhler & Marjolein de Vugt. (2023) Diagnosis and Care Use for People with Young-Onset Dementia in Primary Care in the Netherlands. Journal of Alzheimer's Disease 91:2, pages 653-662.
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Jay L.P. Fieldhouse, Gaby van Dijk, Freek Gillissen, Marie‐Paule E. van Engelen, Sterre C.M. de Boer, Annemiek Dols, Hendrik‐Jan van der Waal, Barbara J. Regeer, Everard G.B. Vijverberg & Yolande A.L. Pijnenburg. (2022) A caregiver's perspective on clinically relevant symptoms in behavioural variant frontotemporal dementia: tools for disease management and trial design. Psychogeriatrics 23:1, pages 11-22.
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Jeroen Bruinsma, Kirsten Peetoom, Frans Verhey, Christian Bakker & Marjolein de Vugt. (2022) Behind closed doors. A case study exploring the lived experiences of a family of a person with the behavioral variant of frontotemporal dementia. Dementia 21:8, pages 2569-2583.
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Claire Waddington, Emma Harding, Emilie V Brotherhood, Ian Davies Abbott, Suzanne Barker, Paul M Camic, Victory Ezeofor, Hannah Gardner, Adetola Grillo, Chris Hardy, Zoe Hoare, Roberta McKee-Jackson, Kirsten Moore, Trish O’Hara, Jennifer Roberts, Samuel Rossi-Harries, Aida Suarez-Gonzalez, Mary Pat Sullivan, Rhiannon Tudor Edwards, Millie Van Der Byl Williams, Jill Walton, Alicia Willoughby, Gill Windle, Eira Winrow, Olivia Wood, Nikki Zimmermann, Sebastian J Crutch & Joshua Stott. (2022) The Development of Videoconference-Based Support for People Living With Rare Dementias and Their Carers: Protocol for a 3-Phase Support Group Evaluation. JMIR Research Protocols 11:7, pages e35376.
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Stevie Hendriks, Kirsten Peetoom, Huibert Tange, Marloes A. van Bokhoven, Wiesje M. van der Flier, Christian Bakker, Janne M. Papma, Raymond Koopmans, Frans Verhey, Sebastian Köhler & Marjolein de Vugt. (2022) Pre-Diagnostic Symptoms of Young-Onset Dementia in the General Practice up to Five Years Before Diagnosis. Journal of Alzheimer's Disease 88:1, pages 229-239.
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Samantha M. Loi, Yolande Pijnenberg & Dennis Velakoulis. (2022) Recent research advances in young-onset dementia. Current Opinion in Psychiatry Publish Ahead of Print.
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Jeroen Bruinsma, Kirsten Peetoom, Lizzy Boots, Maud Daemen, Frans Verhey, Christian Bakker & Marjolein de Vugt. (2021) Tailoring the web-based ‘Partner in Balance’ intervention to support spouses of persons with frontotemporal dementia. Internet Interventions 26, pages 100442.
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Jeroen Bruinsma, Kirsten Peetoom, Christian Bakker, Lizzy Boots, Joany Millenaar, Frans Verhey & Marjolein de Vugt. (2021) Tailoring and evaluating the web-based ‘Partner in Balance’ intervention for family caregivers of persons with young-onset dementia. Internet Interventions 25, pages 100390.
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