Jeroen Bruinsma1, Kirsten Peetoom1, Christian Bakker2,3, Lizzy Boots1, Frans Verhey1, Marjolein de Vugt1. 1. Department of Psychiatry and Neuropsychology/Alzheimer Center Limburg, School for Mental Health and Neuroscience, Maastricht University, Maastricht, the Netherlands. 2. Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, the Netherlands. 3. Centre for Specialized Geriatric Care, Groenhuysen, Roosendaal, the Netherlands.
Abstract
BACKGROUND: Frontotemporal dementia (FTD) has a profound impact on the spouse and other family caregivers involved. While caregivers have a need for support, it is difficult for healthcare providers to respond to their specific needs. This qualitative study explores the lived experiences and needs of caregivers of persons with FTD to facilitate the development of support. METHODS: Three focus group discussions were organized to explore the lived experiences of Dutch FTD caregivers. The included caregivers (n = 24) were aged 16 years or older and were involved in the care of a relative with FTD. Two researchers independently performed an inductive content analysis using open and axial coding. RESULTS: The main category emerging from the data was a lack of recognition, acknowledgment, and understanding experienced by caregivers. This was linked to caregivers' experiences with (1) complex emotional and behavioral symptoms in the person with FTD, (2) the trivializing responses of family and friends, (3) a perceived lack of knowledge and support from healthcare professionals, and (4) the bureaucratic procedures that accompany caregiving. As a result, caregivers felt lonely and solely responsible for the caregiving role. CONCLUSION: Caregivers of persons with FTD experience a lack of understanding in caring for their relative with FTD, which contributes to feelings of loneliness. A specialized support approach is needed to address the specific needs of caregivers of persons with FTD. Support should address strategies that caregivers can use to inform and involve family and friends in the caregiving situation to prevent loneliness in FTD caregivers.
BACKGROUND: Frontotemporal dementia (FTD) has a profound impact on the spouse and other family caregivers involved. While caregivers have a need for support, it is difficult for healthcare providers to respond to their specific needs. This qualitative study explores the lived experiences and needs of caregivers of persons with FTD to facilitate the development of support. METHODS: Three focus group discussions were organized to explore the lived experiences of Dutch FTD caregivers. The included caregivers (n = 24) were aged 16 years or older and were involved in the care of a relative with FTD. Two researchers independently performed an inductive content analysis using open and axial coding. RESULTS: The main category emerging from the data was a lack of recognition, acknowledgment, and understanding experienced by caregivers. This was linked to caregivers' experiences with (1) complex emotional and behavioral symptoms in the person with FTD, (2) the trivializing responses of family and friends, (3) a perceived lack of knowledge and support from healthcare professionals, and (4) the bureaucratic procedures that accompany caregiving. As a result, caregivers felt lonely and solely responsible for the caregiving role. CONCLUSION: Caregivers of persons with FTD experience a lack of understanding in caring for their relative with FTD, which contributes to feelings of loneliness. A specialized support approach is needed to address the specific needs of caregivers of persons with FTD. Support should address strategies that caregivers can use to inform and involve family and friends in the caregiving situation to prevent loneliness in FTD caregivers.
Authors: Victoria A Grunberg; Sarah M Bannon; Paula Popok; Mira Reichman; Bradford C Dickerson; Ana-Maria Vranceanu Journal: Aging Ment Health Date: 2021-08-26 Impact factor: 3.514
Authors: 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 Journal: J Alzheimers Dis Date: 2022 Impact factor: 4.160
Authors: Maud Daemen; Jeroen Bruinsma; Christian Bakker; Rob Groot Zwaaftink; Raymond Koopmans; Andrea Oostijen; Bernard Loose; Frans Verhey; Marjolein de Vugt; Kirsten Peetoom Journal: Internet Interv Date: 2022-03-26
Authors: 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 Journal: JMIR Res Protoc Date: 2022-07-20