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Help-Seeking in Informal Family Caregivers of People with Dementia: A Qualitative Study with iSupport as a Case in Point

Author

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  • Anna Messina

    (Institute of Public Health, Faculty of Biomedical Sciences, Università della Svizzera Italiana, 6900 Lugano, Switzerland)

  • Rebecca Amati

    (Institute of Public Health, Faculty of Biomedical Sciences, Università della Svizzera Italiana, 6900 Lugano, Switzerland)

  • Emiliano Albanese

    (Institute of Public Health, Faculty of Biomedical Sciences, Università della Svizzera Italiana, 6900 Lugano, Switzerland)

  • Maddalena Fiordelli

    (Institute of Public Health, Faculty of Biomedical Sciences, Università della Svizzera Italiana, 6900 Lugano, Switzerland)

Abstract

Supportive measures and training interventions can improve the care of people with dementia and reduce the burden on informal caregivers, whose needs remain largely unmet. iSupport is an evidence-based online intervention developed by the World Health Organization to provide support and self-guided education to informal family caregivers of people with dementia. This qualitative study explored barriers and facilitators in the access and use of supportive measures for family caregivers of people with dementia living in Southern Switzerland (Ticino). We conducted five focus groups and explored experiences, beliefs, and attitudes toward seeking help (SH), and used thematic analysis to identify key themes. Participants (N = 13) reported a general reluctance to SH. We identified four main barriers to SH: high level of burden; sense of duty; fear of being misunderstood by others; and difficulty in reaching information. We also identified facilitators of help seeking behaviors and unveiled the need of caregivers to be assisted by a dementia case manager to facilitate access to support resources. Local services and interventions should be adapted to caregivers’ needs and expectations, with the aim of facilitating the acceptance of, access to, and service integration of existing and future support measures, including iSupport.

Suggested Citation

  • Anna Messina & Rebecca Amati & Emiliano Albanese & Maddalena Fiordelli, 2022. "Help-Seeking in Informal Family Caregivers of People with Dementia: A Qualitative Study with iSupport as a Case in Point," IJERPH, MDPI, vol. 19(12), pages 1-18, June.
    • Handle: RePEc:gam:jijerp:v:19:y:2022:i:12:p:7504-:d:842456
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    References listed on IDEAS

    as
    1. Jian-An Su & Chih-Cheng Chang, 2020. "Association Between Family Caregiver Burden and Affiliate Stigma in the Families of People with Dementia," IJERPH, MDPI, vol. 17(8), pages 1-10, April.
    2. Carmen K.M. Ng & Dara K.Y. Leung & Xinxin Cai & Gloria H.Y. Wong, 2021. "Perceived Help-Seeking Difficulty, Barriers, Delay, and Burden in Carers of People with Suspected Dementia," IJERPH, MDPI, vol. 18(6), pages 1-11, March.
    3. Jinpitcha Mamom & Hanvedes Daovisan, 2022. "Listening to Caregivers’ Voices: The Informal Family Caregiver Burden of Caring for Chronically Ill Bedridden Elderly Patients," IJERPH, MDPI, vol. 19(1), pages 1-15, January.
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    Cited by:

    1. Sally C. Duplantier & Francesca A. Williamson, 2023. "Barriers and Facilitators of Health and Well-Being in Informal Caregivers of Dementia Patients: A Qualitative Study," IJERPH, MDPI, vol. 20(5), pages 1-17, February.
    2. Andrew Wormald & Eimear McGlinchey & Maureen D’Eath & Iracema Leroi & Brian Lawlor & Philip McCallion & Mary McCarron & Roger O’Sullivan & Yaohua Chen, 2023. "Impact of COVID-19 Pandemic on Caregivers of People with an Intellectual Disability, in Comparison to Carers of Those with Other Disabilities and with Mental Health Issues: A Multicountry Study," IJERPH, MDPI, vol. 20(4), pages 1-14, February.

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