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

Kurz, Alexander; Bakker, Christian; Böhm, Markus; Diehl‐Schmid, Janine; Dubois, Bruno; Ferreira, Catarina; Gage, Heather; Graff, Caroline; Hergueta, T.; Jansen, Sabine; Jones, Bridget; Komar, Alexander; Mendonça, Alexandre de; Metcalfe, Anna; Milecka, Katrina; Millenaar, Joany; Wallin, Annika; Oyebode, Jan R.; Schneider-Schelte, Helga; Saxl, Susanna; Vugt, Marjolein de

doi:10.1017/s1041610216001186

Cited by 26 publications

(23 citation statements)

References 43 publications

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“…The potential value of online programs is recognised for this cohort given their pre-morbid computer literacy. Piloting is underway in the Netherlands for an online psychoeducation program for YOD supporters [39], and support groups on social media are increasingly popular [40]. …”

Section: Discussionmentioning

confidence: 99%

Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

et al. 2017

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Background/AimsDespite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters.MethodsEighty-six people with consensus-confirmed YOD (mean onset age 55.3 years) and/or their primary supporter participated in quantitative interviews, and 50 also participated in one of seven qualitative focus groups. Interview participants reported levels of community service use and reasons for non-use, functional impairment, behavioural and psychological symptoms, supporter burden, social network, and informal care provision. Focus group participants expanded on reasons for non-use and aspects of an ideal service.ResultsAlthough at least one community service was recommended to most participants (96.8%), 66.7% chose not to use one or more of these. Few of the clinical or demographic factors included here were related to service use. Qualitative analyses identified that lack of perceived need, availability, and YOD-specific barriers (including ineligibility, unaffordability, lack of security, lack of childcare) were commonly reported. Five aspects of an ideal service were noted: unique, flexibile, affordable, tailored, and promoting meaningful engagement.ConclusionPeople with YOD and their families report that formal community services do not meet their personal and psychological needs. Researchers can provide ongoing assessment of program feasibility, suitability, and generalisability.

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Section: Discussionmentioning

confidence: 99%

Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

et al. 2017

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“…9 Caregivers of people with YOD report high levels of depression, stress, and burden associated with the psychosocial consequences of disease onset. 13 Services specifically designed for people with YOD are available at only a few centres across Europe, 14,15 therefore access may be hindered by geographical and logistic barriers. 12 Existing health and social care structures for people with dementia rarely meet the needs of this particular group of patients and carers, having typically been designed for older adults.…”

Section: Introductionmentioning

confidence: 99%

Online information and support for carers of people with young‐onset dementia: A multi‐site randomised controlled pilot study

Metcalfe

Jones

Mayer

et al. 2019

Int J Geriat Psychiatry

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Objectives The European RHAPSODY project sought to develop and test an online information and support programme for caregivers of individuals diagnosed with young onset dementia. The objectives were to assess user acceptability and satisfaction with the programme and to test outcome measures for a larger effectiveness study. Design A pilot randomised controlled trial in England, France, and Germany was conducted with 61 caregivers for adults with young onset Alzheimer's disease or frontotemporal degeneration. Evaluations at baseline, week 6, and week 12 assessed user acceptability and satisfaction. Use of the programme was measured from online back‐end data. Qualitative feedback on user experiences was collected via semi‐structured interviews. Measures of caregiver well‐being (self‐efficacy, stress, burden, frequency of patient symptoms, and caregiver reactions) were explored for use in a subsequent trial. Results Participants logged in online on average once a week over a 6‐week period, consulting approximately 31% of programme content. Seventy percent of participants described the programme as useful and easy to use. Eighty‐five percent expressed intent to use the resource in the future. Reductions in reported levels of stress and caregivers' negative reactions to memory symptoms were observed following use of the programme. Conclusions Results indicated that the RHAPSODY programme was acceptable and useful to caregivers. The programme may be complementary to existing services in responding to the specific needs of families affected by young onset dementia. Distribution of the programme is underway in England, France, Germany, and Portugal.

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“…C-MMD main platform was developed using the Ruby on Rails 4 web development framework and makes use of a Git source control to encourage distant developers to maintain multiple local independent branches and a merging and deploying protocol. React library 5 was used for building the user interfaces, Redux 6 to emit state updates in response to actions and Twitter Bootstrap was used as a front-end framework.…”

Section: Technology and Architecturesmentioning

confidence: 99%

“…RHAPSODY (Research to Access Policies and Strategies for Dementia in the Young) [4] is another EU funded dementia research project which aims to improve care for people with Young Onset Dementia (YOD) by providing an internet-based information and skill-building interventions programme for family caregivers through an e-learning platform.…”

Section: Introductionmentioning

confidence: 99%

Two examples of online eHealth platforms for supporting people living with cognitive impairments and their caregivers

Solachidis

Paliokas

Vretos

et al. 2018

Proceedings of the 11th PErvasive Technologies Related to Assistive Environments Conference

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This paper compares two methodological approaches derived from the EU Horizon 2020 funded projects CAREGIVERSPRO-MMD (C-MMD) 1 and ICT4LIFE 2 . Both approaches were initiated in 2016 with the ambition to provide new integrated care services to people living with cognitive impairments, including Dementia, Alzheimer and Parkinson disease, as well as to their home caregivers towards a long-term increase in quality of life and autonomy at home. An outline of the disparities and similarities related to non-pharmacological interventions introduced by the two projects to foster treatment adherence was made. Both approaches have developed software solutions, including social platforms, notifications, Serious Games, user monitoring and support services aimed at developing the concepts of self-care, active patients and integrated care. Besides their differences, both projects can be benefited by knowledge and technology exchange, pilot results sharing and possible user's exchange if possible in the near future. CCS CONCEPTS• Applied computing → Life and medical sciences → Health care information systems 1 https://caregiversprommd-project.eu/ 2

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

Cited by 26 publications

References 43 publications

Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

Online information and support for carers of people with young‐onset dementia: A multi‐site randomised controlled pilot study

Two examples of online eHealth platforms for supporting people living with cognitive impairments and their caregivers

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