Evaluation of virtual caregiver support groups for young-onset dementia family caregivers

References

• Alzheimer Society of Canada. (n.d.). Young onset dementia. https://alzheimer.ca/en/about-dementia/other-types-dementia/young-onset-dementia
   Google Scholar
• Billow, R. M. (2017). Relational group psychotherapy: An overview: Part I: Foundational principles and practices. Group Analysis, 50(1), 6–22. https://doi.org/10.1177/0533316416689657
   Google Scholar
• Blake, C., & Hopper, L. (2022). Childhood perspectives of parental young onset dementia: Qualitative data synthesis. Dementia, 21(4), 1304–1327. https://doi.org/10.1177/14713012221077531
   PubMedGoogle Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
   Google Scholar
• Brouzos, A., Vassilopoulos, S. P., Stavrou, V., Baourda, V. C., Tassi, C., & Brouzou, K. O. (2021). Therapeutic factors and member satisfaction in an online group intervention during the COVID‑19 pandemic. Journal of Technology in Behavioral Science, 6(4), 609–619. https://doi.org/10.1007/s41347-021-00216-4
   PubMedGoogle Scholar
• Bruinsma, J., Peetoom, K., Bakker, C., Boots, L., Millenaar, J., Verhey, F., & de Vugt, M. (2021). Tailoring and evaluating the web-based ‘Partner in Balance’ intervention for family caregivers of persons with young-onset dementia. Internet Interventions, 25, 100390. https://doi.org/10.1016/j.invent.2021.100390
   PubMedGoogle Scholar
• Chiari, A., Pistoresi, B., Galli, C., Tondelli, M., Vinceti, G., Molinari, M. A., Addabbo, T., & Zamboni, G. (2021). Determinants of caregiver burden in early-onset dementia. Dementia and Geriatric Cognitive Disorders Extra, 11(2), 189–197. https://doi.org/10.1159/000516585
   PubMed Web of Science ®Google Scholar
• Cole, J. C., Ito, D., Chen, Y. J., Cheng, R., Bolognese, J., & Li-McLeod, J. (2014). Impact of Alzheimer’s disease on caregiver questionnaire: Internal consistency, convergent validity, and test-retest reliability of a new measure for assessing caregiver burden. Health and Quality of Life Outcomes, 12(1), 114. https://doi.org/10.1186/s12955-014-0114-3
   PubMed Web of Science ®Google Scholar
• Cummings, J. L., Mega, M., Gray, K., Rosenberg-Thompson, S., Carusi, D. A., & Gornbein, J. (1994). The neuropsychiatric inventory: Comprehensive assessment of psychopathology in dementia. Neurology, 44(12), 2308–2314. https://doi.org/10.1212/wnl.44.12.2308
   PubMed Web of Science ®Google Scholar
• Damianakis, T., Climans, R., & Marziali, E. (2008). Social workers’ experiences of virtual psychotherapeutic caregivers groups for Alzheimer’s, Parkinson’s, stroke, frontotemporal dementia and traumatic brain injury. Social Work with Groups, 31(2), 99–116. https://doi.org/10.1080/01609510801960833
   Google Scholar
• Damianakis, T., Wilson, K., & Marziali, E. (2018). Family caregiver support groups: Spiritual reflections’ impact on stress management. Aging & Mental Health, 22(1), 70–76. https://doi.org/10.1080/13607863.2016.1231169
   PubMed Web of Science ®Google Scholar
• Etxeberria, I., Salaberria, K., & Gorostiaga, A. (2021). Online support for family caregivers of people with dementia: A systematic review and meta-analysis of RCTs and quasi-experimental studies. Aging & Mental Health, 25(7), 1165–1180. https://doi.org/10.1080/13607863.2020.1758900
   PubMed Web of Science ®Google Scholar
• Giebel, C., Eastham, C., Cannon, J., Wilson, J., Wilson, J., & Pearson, A. (2020). Evaluating a young-onset dementia service from two sides of the coin: Staff and service user perspectives. BMC Health Services Research, 20(1), 187. https://doi.org/10.1186/s12913-020-5027-8
   PubMed Web of Science ®Google Scholar
• Haase, K. R., Cosco, T., Kervin, L., Riadi, I., & O’Connell, M. (2021). Older adults’ experiences with using technology for socialization during the COVID-19 pandemic: Cross-sectional survey study. JMIR Aging, 4(2), e28010. https://doi.org/10.2196/28010
   PubMedGoogle Scholar
• Hopwood, J., Walker, N., McDonagh, L., Rait, G., Walters, K., Iliffe, S., Ross, J., & Davies, N. (2018). Internet-based interventions aimed at supporting family caregivers of people with dementia: Systematic review. Journal of Medical Internet Research, 20(6), e216. https://doi.org/10.2196/jmir.9548
   PubMed Web of Science ®Google Scholar
• Husted, J. A., Cook, R. J., Farewell, V. T., & Gladman, D. D. (2000). Methods for assessing responsiveness: A critical review and recommendations. Journal of Clinical Epidemiology, 53(5), 459–468. https://doi.org/10.1016/S0895-4356(99)00206-1
   PubMed Web of Science ®Google Scholar
• Kaiser, S., & Panegyres, P. K. (2007). The psychosocial impact of young onset dementia on spouses. American Journal of Alzheimer’s Disease & Other Dementias, 21(6), 398–402. https://doi.org/10.1177/1533317506293259
   Google Scholar
• Kroenke, K., Spitzer, R. L., & Williams, J. B. W. (2003). The patient health questionnaire-2: Validity of a two-item depression screener. Medical Care, 41(11), 1284–1292. https://doi.org/10.1097/01.MLR.0000093487.78664.3C
   PubMed Web of Science ®Google Scholar
• Kurz, A., Bakker, C., Böhm, M., Diehl-Schmid, J., Dubois, B., Ferreira, C., Gage, H., Graff, C., Hergueta, T., Jansen, S., Jones, B., Komar, A., de Mendonça, A., Metcalfe, A., Milecka, K., Millenaar, J., Orrung Wallin, A., Oyebode, J., Schneider-Schelte, H., & De Vugt, M. (2016). RHAPSODY – Internet-based support for caregivers of people with young onset dementia: Program design and methods of a pilot study. International Psychogeriatrics, 28(12), 2091–2099. https://doi.org/10.1017/S1041610216001186
   PubMed Web of Science ®Google Scholar
• Lee, E. (2015). Do technology-based support groups reduce care burden among dementia caregivers? A review. Journal of Evidence-Informed Social Work, 12(5), 474–487. https://doi.org/10.1080/15433714.2014.930362
   PubMed Web of Science ®Google Scholar
• Leng, M., Zhao, Y., Xiao, H., Li, C., & Wang, Z. (2020). Internet-based supportive interventions for family caregivers of people with dementia: Systematic review and meta-analysis. Journal of Medical Internet Research, 22(9), e19468. https://doi.org/10.2196/19468
   PubMed Web of Science ®Google Scholar
• Marziali, E., & Climans, R. (2009). New technology to connect frontotemporal dementia spousal caregivers online. The Canadian Review of Alzheimer´s Disease and Other Dementias, 12(2), 23–26. https://scholar.google.com/scholar_lookup?journal=Canadian+Review+of+Alzheimer%27s+Disease+and+Other+Dementias.&title=New+technology+to+connect+frontotemporal+dementia+spousalcaregivers+online&author=E+Marziali&author=R+Climans&volume=12&publication_year=2009&pages=23-27&.
   Google Scholar
• Marziali, E., & Garcia, L. J. (2011). Dementia caregivers’ responses to 2 internet-based intervention programs. American Journal of Alzheimer’s Disease & Other Dementias, 26(1), 36–43. https://doi.org/10.1177/1533317510387586
   PubMed Web of Science ®Google Scholar
• Mayrhofer, A. M., Mathie, E., McKeown, J., Goodman, C., Irvine, L., Hall, N., & Walker, M. (2020). Young onset dementia: Public involvement in co-designing community-based support. Dementia, 19(4), 1051–1066. https://doi.org/10.1177/1471301218793463
   PubMedGoogle Scholar
• Metcalfe, A., Jones, B., Mayer, J., Gage, H., Oyebode, J., Boucault, S., Aloui, S., Schwertel, U., Böhm, M., Tezenas du Montcel, S., Lebbah, S., De Mendonça, A., De Vugt, M., Graff, C., Jansen, S., Hergueta, T., Dubois, B., & Kurz, A. (2019). Online information and support for carers of people with young-onset dementia: A multi-site randomised controlled pilot study. International Journal of Geriatric Psychiatry, 34(10), 1455–1464. https://doi.org/10.1002/gps.5154
   PubMed Web of Science ®Google Scholar
• Nolan, M., Keady, J., & Grant, G. (1995). CAMI: A basis for assessment and support with family carers. British Journal of Nursing, 4(14), 822–826. https://doi.org/10.12968/bjon.1995.4.14.822
   PubMedGoogle Scholar
• O’Malley, M., Parkes, J., Stamou, V., LaFontaine, J., Oyebode, J., & Carter, J. (2019). Young-onset dementia: Scoping review of key pointers to diagnostic accuracy. BJPsych Open, 5(3), e48. https://doi.org/10.1192/bjo.2019.36
   PubMed Web of Science ®Google Scholar
• Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30(5), 583–594. https://doi.org/10.1093/geront/30.5.583
   PubMed Web of Science ®Google Scholar
• Pearlin, L. I., & Schooler, C. (1978). The structure of coping. Journal of Health and Social Behavior, 19(1), 2–21. https://doi.org/10.2307/2136319
   PubMed Web of Science ®Google Scholar
• Rasera, E. F. (2021). Social constructionist perspectives on group work. Taos Institute Publications.
   Google Scholar
• Shnall, A. (2015). When least expected: Stories of love, commitment, loss and survival - The experience and coping strategies of spouses of people with an early-onset dementia. [Doctoral Dissertation, University of Toronto]. T-Space University of Toronto. https://tspace.library.utoronto.ca/bitstream/1807/69383/3/Shnall_Adriana_N_201503_PhD_thesis.pdf
   Google Scholar
• Tuckman, B. W., & Jensen, M. A. (1977). Stages of small-group development revisited. Group & Organization Studies, 2(4), 419–427. https://doi.org/10.1177/105960117700200404
   Google Scholar
• Yalom, I., & Leszcz, M. (2020). The theory and practice of group psychotherapy (6th ed.). Basic Books.
   Google Scholar