Participation of end users in the design of assistive technology for people with mild to severe cognitive problems; the European Rosetta project

Meiland, Franka; Hattink, Bart; Overmars-Marx, Tessa; Boer, M.E. de; Jedlitschka, Andreas; Ebben, Peter; Stalpers-Croeze, I; Flick, S E; Leeuw, Johan van der; Karkowski, I.; Dröes, Rose-Marie

doi:10.1017/s1041610214000088

Cited by 106 publications

(129 citation statements)

References 22 publications

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“…In practice, however, people with dementia have rarely been involved in technology development, with user acceptability tending to be assessed via family carers and others [11,24,34]. Successful examples of collaborative working with people with mild-to-moderate dementia are emerging [14,33,35-37]. However, people with more severe dementia are less often included in development of assistive technologies.…”

Section: Resultsmentioning

confidence: 99%

“…Usability issues: Little research so far has been conducted in community dementia care and support, with only a few studies exploring the usability of assistive technology in supporting everyday life [37,47,48]. The results showed that people with dementia were able to use the technology, but that additional support by informal caregivers or professionals was often needed.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Technologies to Support Community-Dwelling Persons With Dementia: A Position Paper on Issues Regarding Development, Usability, Effectiveness and Cost-Effectiveness, Deployment, and Ethics

Meiland

Innes

Mountain

et al. 2017

JMIR Rehabil Assist Technol

266

241

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BackgroundWith the expected increase in the numbers of persons with dementia, providing timely, adequate, and affordable care and support is challenging. Assistive and health technologies may be a valuable contribution in dementia care, but new challenges may emerge.ObjectiveThe aim of our study was to review the state of the art of technologies for persons with dementia regarding issues on development, usability, effectiveness and cost-effectiveness, deployment, and ethics in 3 fields of application of technologies: (1) support with managing everyday life, (2) support with participating in pleasurable and meaningful activities, and (3) support with dementia health and social care provision. The study also aimed to identify gaps in the evidence and challenges for future research.MethodsReviews of literature and expert opinions were used in our study. Literature searches were conducted on usability, effectiveness and cost-effectiveness, and ethics using PubMed, Embase, CINAHL, and PsycINFO databases with no time limit. Selection criteria in our selected technology fields were reviews in English for community-dwelling persons with dementia. Regarding deployment issues, searches were done in Health Technology Assessment databases.ResultsAccording to our results, persons with dementia want to be included in the development of technologies; there is little research on the usability of assistive technologies; various benefits are reported but are mainly based on low-quality studies; barriers to deployment of technologies in dementia care were identified, and ethical issues were raised by researchers but often not studied. Many challenges remain such as including the target group more often in development, performing more high-quality studies on usability and effectiveness and cost-effectiveness, creating and having access to high-quality datasets on existing technologies to enable adequate deployment of technologies in dementia care, and ensuring that ethical issues are considered an important topic for researchers to include in their evaluation of assistive technologies.ConclusionsBased on these findings, various actions are recommended for development, usability, effectiveness and cost-effectiveness, deployment, and ethics of assistive and health technologies across Europe. These include avoiding replication of technology development that is unhelpful or ineffective and focusing on how technologies succeed in addressing individual needs of persons with dementia. Furthermore, it is suggested to include these recommendations in national and international calls for funding and assistive technology research programs. Finally, practitioners, policy makers, care insurers, and care providers should work together with technology enterprises and researchers to prepare strategies for the implementation of assistive technologies in different care settings. This may help future generations of persons with dementia to utilize available and affordable technologies and, ultimately, to benefit from them.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Technologies to Support Community-Dwelling Persons With Dementia: A Position Paper on Issues Regarding Development, Usability, Effectiveness and Cost-Effectiveness, Deployment, and Ethics

Meiland

Innes

Mountain

et al. 2017

JMIR Rehabil Assist Technol

266

241

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“…In one case, a father became physically aggressive towards his daughter when she took his car key. Strang et al (2006), Meiland et al (2014), and Liken et al (2001) describe similar examples of safety issues resulting in carers deciding to take action because the situation had reached crisis point (Liken, 2001;Meiland et al, 2014;Strang, 2006). Reported examples of taking action to prevent harm included seeking professional advice, accessing services, and restricting or monitoring activity of the person with dementia.…”

Section: What Happens During Crisismentioning

confidence: 99%

What happens before, during and after crisis for someone with dementia living at home: A systematic review

Hopkinson¹,

King²,

Mullins

et al. 2020

Dementia

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BackgroundPeople living with dementia often experience crisis. Home treatment of crisis is an alternative to hospital admission that can have better outcomes. This systematic review is about people with dementia living at home and in crisis. It identifies modifiable factors in the crisis process that may facilitate crisis resolution. MethodsThe protocol is registered on PROSPERO. A systematic search of MEDLINE, EMBASE, CINAHL, AHMED, PsycINFO, Cochrane Library, and references of retrieved publications, identified empirical research in English language and date range 1/2000 to 2/2019. Two researchers independently screened abstracts, selected publications and extracted data using a framework based on published guidelines. This is a report of the analysis and narrative synthesis. ResultsThe search identified 2,755 titles and abstracts, 76 were selected for full-text examination and 13 agreed for inclusion. The included studies evidence that:For a person with dementia, crisis is a process that begins with a problem judged to put them or others at risk of harm. It leads to decision and action to treat this risk, thus resolve the crisis. Such crisis can be predicted or unpredicted and progress quickly or slowly.Medical treatment, community resources, and psychosocial support of personal resources, decision making, relationships, and social networks, are all modifiable factors that can treat the risk of harm during crisis. Carers' and professionals' knowledge and skills in dementia care are likely to play a key role in crisis resolution in the home. ConclusionThere has been limited investigation of the process and management of crisis at home for people living with dementia. The results of this review provide a foundation for future research. There is no consensus on critical components of home treatment to facilitate crisis resolution. However, education in dementia care for carers and professionals is likely to prove essential to successful home treatment.

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“…Additional assistive technologies are also being directed toward persons with dementia themselves to help monitor the movements of individuals at night, alert caregivers to their need for help, and provide soothing music, images, or gentle cuing to return to bed [37][38][39]. Technological strategies that might help reduce the unpredictability of dealing with care-receivers at night could be particularly helpful as there is evidence that caregiver perceptions about the inconsistency in their sleep may have as much impact on caregiver mood and burden as the actual sleep quality itself [40].…”

Section: Caregiver Sleep Interventionsmentioning

confidence: 99%

Sleep in caregivers

McCurry

Song

Martin

2015

Current Opinion in Psychiatry

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There is a growing literature describing the general determinants of sleep disturbances in caregivers, the health consequences of these disturbances, and intervention strategies for treating them. Identifying effective sleep treatments suited to more specialized caregiving situations and increasing intervention access will help caregivers continue to provide quality care while protecting their own health and well-being.

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Participation of end users in the design of assistive technology for people with mild to severe cognitive problems; the European Rosetta project

Abstract: The user participatory design resulted in valuable input from persons with dementia, informal carers and professional carers/dementia experts, based on which a first prototype Rosetta system was built.

Cited by 106 publications

References 22 publications

Technologies to Support Community-Dwelling Persons With Dementia: A Position Paper on Issues Regarding Development, Usability, Effectiveness and Cost-Effectiveness, Deployment, and Ethics

Technologies to Support Community-Dwelling Persons With Dementia: A Position Paper on Issues Regarding Development, Usability, Effectiveness and Cost-Effectiveness, Deployment, and Ethics

What happens before, during and after crisis for someone with dementia living at home: A systematic review

Sleep in caregivers

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