Hostname: page-component-586b7cd67f-rdxmf Total loading time: 0 Render date: 2024-11-25T21:19:49.190Z Has data issue: false hasContentIssue false
  • English
  • Français

RHAPSODY – Internet-based support for caregivers of people with young onset dementia: program design and methods of a pilot study

Published online by Cambridge University Press:  30 August 2016

Alexander Kurz ,
Christian Bakker ,
Markus Böhm ,
Janine Diehl-Schmid ,
Bruno Dubois ,
Catarina Ferreira ,
Heather Gage ,
Caroline Graff ,
Thierry Hergueta  and
Sabine Jansen
...Show all authors
Alexander Kurz*
Affiliation:
Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Christian Bakker
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, the Netherlands
Markus Böhm
Affiliation:
Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Janine Diehl-Schmid
Affiliation:
Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Bruno Dubois
Affiliation:
Université Pierre et Marie Curie, Hôpital Pitié Salpêtrière, Paris, France
Catarina Ferreira
Affiliation:
Institute of Molecular Medicine and Faculty of Medicine, University of Lisbon, Portugal
Heather Gage
Affiliation:
School of Economics, University of Surrey, Guildford, Surrey, UK
Caroline Graff
Affiliation:
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden
Thierry Hergueta
Affiliation:
Université Pierre et Marie Curie, Hôpital Pitié Salpêtrière, Paris, France
Sabine Jansen
Affiliation:
Deutsche Alzheimer Gesellschaft, Selbsthilfe Demenz, Berlin, Germany
Bridget Jones
Affiliation:
School of Economics, University of Surrey, Guildford, Surrey, UK
Alexander Komar
Affiliation:
Information Multimedia Communication GmbH (IM-C), Saarbrücken, Germany
Alexandre de Mendonça
Affiliation:
Institute of Molecular Medicine and Faculty of Medicine, University of Lisbon, Portugal
Anna Metcalfe
Affiliation:
Université Pierre et Marie Curie, Hôpital Pitié Salpêtrière, Paris, France
Katrina Milecka
Affiliation:
Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Munich, Germany
Joany Millenaar
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, the Netherlands
Anneli Orrung Wallin
Affiliation:
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden Department of Health and Society, Kristianstad University, Kristianstad, Sweden
Jan Oyebode
Affiliation:
School of Economics, University of Surrey, Guildford, Surrey, UK
Helga Schneider-Schelte
Affiliation:
Deutsche Alzheimer Gesellschaft, Selbsthilfe Demenz, Berlin, Germany
Susanna Saxl
Affiliation:
Deutsche Alzheimer Gesellschaft, Selbsthilfe Demenz, Berlin, Germany
Marjolein de Vugt
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Center Limburg, Maastricht University Medical Center, Maastricht, the Netherlands
*
Correspondence should be addressed to: Alexander Kurz, Department of Psychiatry and Psychotherapy, Klinikum rechts der Isar, Technische Universität München, Ismaninger Strasse 22, 81675 Munich, Germany. Phone: +49 89 4140-4285; Fax: +49 89 4140-4923. Email: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

Young Onset Dementia (YOD), defined by first symptoms of cognitive or behavioral decline occurring before the age of 65 years, is relatively rare compared to dementia of later onset, but it is associated with diagnostic difficulty and heavy burden on affected individuals and their informal carers. Existing health and social care structures rarely meet the needs of YOD patients. Internet-based interventions are a novel format of delivering health-related education, counseling, and support to this vulnerable yet underserved group.

Methods:

The RHAPSODY (Research to Assess Policies and Strategies for Dementia in the Young) project is a European initiative to improve care for people with YOD by providing an internet-based information and skill-building program for family carers. The e-learning program focuses on managing problem behaviors, dealing with role change, obtaining support, and looking after oneself. It will be evaluated in a pilot study in three countries using a randomized unblinded design with a wait-list control group. Participants will be informal carers of people with dementia in Alzheimer's disease or behavioral-variant Frontotemporal degeneration with an onset before the age of 65 years. The primary outcome will be caregiving self-efficacy after 6 weeks of program use. As secondary outcomes, caregivers’ stress and burden, carer health-related quality of life, caring-related knowledge, patient problem behaviors, and user satisfaction will be assessed. Program utilization will be monitored and a health-economic evaluation will also be performed.

Conclusions:

The RHAPSODY project will add to the evidence on the potential and limitations of a conveniently accessible, user-friendly, and comprehensive internet-based intervention as an alternative for traditional forms of counseling and support in healthcare, aiming to optimize care and support for people with YOD and their informal caregivers.

Keywords

dementiayoungearlyonsetcaregivere-learningeducationguide
Type
Protocol-only paper
Information
International Psychogeriatrics , Volume 28 , Issue 12 , December 2016 , pp. 2091 - 2099
Copyright
Copyright © International Psychogeriatric Association 2016 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Bakker, C., de Vugt, M. E., Vernooij-Dassen, M., van Vliet, D., Verhey, F. R. J. and Koopmans, R. T. C. (2010). Needs in early onset dementia: a qualitative case from the NeedYD study. American Journal of Alzheimer's Disease & Other Dementias, 25, 634–640.Google Scholar
Belle, S. H. et al. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups. A randomized, controlled trial. Annals of Internal Medicine, 145, 727–738.Google Scholar
Blom, M. M., Zarit, S. H., Groot-Zwaaftink, R. B. M., Cuijpers, P. and Pot, A. M. (2015). Effectiveness of an internet interention for family caregivers of people with dementi: results of a randomized controlled trial. Plos One, 10, e0116622.Google Scholar
Boots, L. M. M., de Vugt, M. E., van Knippenberg, R. J. M., Kempen, G. I. J. M. and Verhey, F. R. J. (2014). A systematic review of internet-based supportive interventionw for caregivers of patients with dementia. International Journal of Geriatric Psychiatry, 29, 331–344.Google Scholar
Brodaty, H., Green, A. and Koschera, A. (2003). Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of American Geriatrics Society, 51, 657–664.Google Scholar
Burgio, L. D., Collins, I. B., Schmid, B., Wharton, T., McCallum, D. and DeCoster, J. (2009). Translating the REACH caregiver intervention for use by area Agency on Aging Personnel: the REACH OUT Program. Gerontologist, 49, 103–116.Google Scholar
Cohen, S., Kamarck, T. and Mermelstein, R. (1983). A global measure of perceived stress. Journal of Health and Social Behavior, 24, 386–396.Google Scholar
Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I. and Petticrew, M. (2008). Developing and Evaluating Complex Interventions: New Guidance. London: Medical Research Council.Google Scholar
Cristancho-Lacroix, V., Thompson, T. and Low, L. F. (2015). A web-based psychoeducational program for informal carers of patients with Alzheimer's disease: a pilot randomized controlled trial. Journal of Medical Internet Research, 17, e117.Google Scholar
Ducharme, F., Kergoat, M. J., Pasquier, F. and Coulombe, R. (2013). The unique experience of spouses in early-onset dementia. American Journal of Alzheimer's Disease & Other Dementias, 28, 634–641.Google Scholar
Etters, L., Goodall, D. and Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423–428.Google Scholar
EuroQuol-Group (2009). EQ-5D-5L. Rotterdam: EuroQuol Group.Google Scholar
Gell, N. M., Rosenberg, D. E., Demiris, G., LaCroix, A. Z. and Patel, K. V. (2015). Patterns of technology use among older adults with and without disabilities. Gerontologist, 55, 412–421.Google Scholar
Goldberg, E. L. (2011). Filling an unmet need: a support group for early stage/young onset Alzheimer's disease and related dementias. The West Virginia Medicine Journal, 107, 64–68.Google Scholar
Goodwin, K. M., Mills, W. L., Anderson, J. A. and Kunik, M. E. (2013). Technology-driven interventions for caregivers of persons with dementia: a systematic review. American Journal of Alzheimer's Disease & Other Dementias, 28, 216–222.Google Scholar
Gräsel, E., Chiu, T. and Oliver, R. (2003). Development and Validation of the Burden Scale for Family Caregivers (BSFC). Toronto, Ontario: Comprehensive Rehabilitation and Mental Health Services.Google Scholar
Harris, P. B. (2009). Intimacy, sexuality, and early-stage dementia: the changing marital relationship. Alzheimer's Care Today, 10, 63–77.Google Scholar
Harvey, R. J., Skelton-Robinson, M. and Rossor, M. N. (2003). The prevalence and causes of dementia in people under the age of 65 years. Journal of Neurology Neurosurgery & Psychiatry, 74, 126–129.Google Scholar
Hattink, B. et al. (2015). Web-based STAR e-learning course increases empathy and understanding in dementia caregivers: results from a randomized controlled trial in the Netherlands and the United Kingdom. Journal of Medicine Internet Research, 17, e241.Google Scholar
Hooghiemstra, A. M. et al. (2012). Study protocol: EXERcise and Cognition in Sedentary adults with Early-ONset dementia (EXERCISE-ON). BMC Neurology, 12, 75.Google Scholar
Huis in het Veld, J. G., Verkaik, R., Mistiaen, P., van Meijel, B. and Francke, A. L. (2015). The effectiveness of interventions in supporting self-management of informal caregivers of people with dementia; a systematic meta review. BMC Geriatrics, 15, 147.Google Scholar
Kajiyama, B. et al. (2013). Exploring the effectiveness of an internet-based program for reducing caregiver distress using the iCare stress management e-training program. Aging & Mental Health, 17, 544–554.Google Scholar
Lancaster, G. A., Dodd, S. and Williamson, P. R. (2004). Design and analysis of pilot studies: recommendations for good practice. Journal of Evaluation in Clinical Practice, 10, 307–312.Google Scholar
Lewis, M. L., Hobday, J. V. and Hepburn, K. W. (2010). Internet-based program for dementia caregivers. American Journal of Alzheimer's Disease & Other Dementias, 25, 674–679.Google Scholar
McKhann, G. M. et al. (2011). The diagnosis of dementia due to Alzheimer'sdisease: recommendations from the national institute on aging and the Alzheimer's Association workgroup. Alzheimer's & Dementia, 7, 263–269.Google Scholar
Mendez, M. F. (2006). The accurate diagnosis of early-onset dementia. The International Journal of Psychiatry in Medicine, 36, 401–412.Google Scholar
Mercy, L., Hodges, J. R., Dawson, K., Barker, R. A. and Brayne, C. (2008). Incidence of early-onset dementias in Cambridgeshire, United Kingdom. Neurology, 71, 1496–1499.Google Scholar
Millenaar, J., Bakker, C., Koopmans, R., Verhey, F., de Vugt, M. and Kurz, A. (2016). The care needs and experiences with the use of services of people with young-onset dementia and their caregivers: a systematic review. International Journal of Geriatric Psychiatry. Epublished ahead of print, doi: 10.1002/gps.4502.Google Scholar
Millenaar, J. K. et al. (2014). The experiences and needs of children living with a parent with young onset dementia: results form the NeedYD study. International Psychogeriatrics, 26, 2001–2010.Google Scholar
Millenaar, J. K. et al. (2015). The impact of young onset dementia on informal caregivers compared to late onset dementia: results from the NeedYD study. American Journal of Geriatric Psychiatry, 24, 467–474.Google Scholar
Parker, D., Mills, S. and Abbey, J. (2008). Effectiveness of interventions that assist caregivers to spport people with dementia living in the community: a systematic review. International Journal of Evidence-based Healthcare, 6, 137–172.Google Scholar
Pressler, A. et al. (2010). An internet-delivered exercise intervention for workplace health promotion in overweight sedentary employees: a randomized trial. Preventive Medicine, 51, 234–239.Google Scholar
Raskovsky, K. et al. (2011). Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain, 134, 2456–2477.Google Scholar
Sansoni, J., Duncan, C. and Grootemaat, P. (2014). Younger Onset Dementia: A Literature Review. Wollongong, New South Wales, Australia: Centre for Health Service Development, University of Wollongong.Google Scholar
Schulz, R. et al. (2002). Dementia caregiver intervention research: in search of clinical significance. Gerontologist, 42, 589–602.Google Scholar
Serafini, J. D., Damianakis, T. and Marziali, E. (2007). Clinical practice standard and ethical issues applied to virtual group intervention for spousal caregivers of people with Alzheimer's. Social Work in Halth Care, 44, 225–243.Google Scholar
Steffen, A. M., McKibbin, C., Zeiss, A. M., Gallagher-Thompson, D. and Bandura, A. (2002). The Revised Scale for Caregiving Self-Efficacy: reliability and validity studies. The Journals of Gerontology Psychological Sciences, 57B, P74–P86.Google Scholar
Svanberg, E., Spector, A. and Stott, J. (2014). The impact of young onset dementia on the family: a literature review. International Psychogeriatrics, 23, 356–371.Google Scholar
Teare, M. D., Dimairo, M., Shephard, N., Hayman, A., Whitehead, A. and Walters, S. J. (2014). Sample size requirements to extimate key design parameters from external pilot randomised controlled trials: a simulation study. Trials, 15, 264.Google Scholar
Teri, L., Truax, P., Logsdon, R., Uomoto, J., Zarit, S. and Vitaliano, P. P. (1992). Assessment of behavioral problems in dementia: the revised memory and behavior problems checklist. Psychology and Aging, 7, 622–631.Google Scholar
Thabane, L. et al. (2010). A tutorial on pilot studies: the what, why and how. BMC Medical Research Methodology, 10, 1.Google Scholar
Vandepitte, S., Van Den Noortgate, N., Putman, K., Verhaeghe, S., Faes, K. and Annemans, L. (2016). Effectiveness of supporting informal caregivers of people with dementia: a systematic review of randomized and non-randomized controlled trials. Journal of Alzheimer's Disease, 52, 929–965.Google Scholar
Venkatesh, V. and Bala, H. (2008). Technology acceptance model 3 and a research agenda on interventions. Decision Sciences, 39, 273–315.Google Scholar