Hostname: page-component-76fb5796d-qxdb6 Total loading time: 0 Render date: 2024-04-25T15:52:22.867Z Has data issue: false hasContentIssue false
  • English
  • Français

Better self-management and meaningful activities thanks to tablets? Development of a person-centered program to support people with mild dementia and their carers through use of hand-held touch screen devices

Published online by Cambridge University Press:  18 July 2016

Yvonne J. F. Kerkhof ,
Maud J. L. Graff ,
Ad Bergsma ,
Hilde H. M. de Vocht  and
Rose-Marie Dröes
Yvonne J. F. Kerkhof*
Affiliation:
Center for Nursing Research, Saxion University of Applied Sciences, Deventer/Enschede, the Netherlands Department of Psychiatry, Alzheimer Center, EMGO Institute for Health and Care Research, VU University medical center, Amsterdam, the Netherlands
Maud J. L. Graff
Affiliation:
Donders Institute for Brain, Cognition and behaviour, Scientific Institute for Quality of Healthcare, Radboud Alzheimer Center, Radboud University Medical Center, Nijmegen, the Netherlands
Ad Bergsma
Affiliation:
Center for Nursing Research, Saxion University of Applied Sciences, Deventer/Enschede, the Netherlands
Hilde H. M. de Vocht
Affiliation:
Center for Nursing Research, Saxion University of Applied Sciences, Deventer/Enschede, the Netherlands
Rose-Marie Dröes
Affiliation:
Department of Psychiatry, Alzheimer Center, EMGO Institute for Health and Care Research, VU University medical center, Amsterdam, the Netherlands
*
Correspondence should be addressed to: Yvonne JF Kerkhof, Centre for Nursing Research, Saxion University of Applied Sciences, Handelskade 75, 7417 DH Deventer, the Netherlands. Phone: 0031612373111. Email: y.j.f.kerkhof@saxion.nl.
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

To offer good support to people with dementia and their carers in an aging and Internet society the deployment of hand-held touch screen devices, better known as tablets, and its applications (apps) can be viable and desirable. However, at the moment it is not clear which apps are usable for supporting people with dementia in daily life. Also, little is known about how people with dementia can be coached to learn to use a tablet and its apps.

Methods:

A person-centered program, with tools and training, will be developed that aims to support people with mild dementia and their (in)formal carers in how to use the tablet for self-management and meaningful activities. The program will be developed in accordance with the Medical Research Council's (MRC) framework for developing and evaluating complex interventions and the study will cover the following phases: a preclinical or theoretical (0) phase; a modeling phase (I) and the exploratory trial phase (II). The users (people with dementia and their carers) will be involved intensively during all these phases, by means of individual interviews, workshops, focus groups, and case studies.

Discussion:

The iterative process inherent to this framework makes it possible to develop a user-oriented intervention, in this case a person-centered program, for the use of tablets in dementia care. Preparatory work will be done to perform a methodologically sound randomized controlled trial (RCT) in the near future, which aims to investigate the contribution of this person-centered program for tablet use to the quality of life of people with dementia and their carers.

Keywords

dementiaperson-centered programself-managementmeaningful activitiestabletappsMRC framework
Type
Protocol-only paper
Information
International Psychogeriatrics , Volume 28 , Issue 11 , November 2016 , pp. 1917 - 1929
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

Abma, T. and Broerse, J. E. W. (2007). Zeggenschap in wetenschap. Patiëntenparticipatie in theorie en praktijk [Control in science. Patient participation in theory and practice]. the Netherlands: Den Haag: Lemma.Google Scholar
Alzheimer's Disease International (2013). Policy Brief for Heads of Government: the Global Impact of Dementia 2013–2050, London: Alzheimer's Disease International. Available at: http://www.alz.co.uk/research/GlobalImpactDementia2013.pdf.Google Scholar
Astell, A. J., Ellis, M. P., Bernardi, L., Alm, N., Dye, R., Gowans, G. and Campbell, J. (2010). Using a touch screen computer to support relationships between people with dementia and caregivers. Interacting with Computers, 22, 267–275.CrossRefGoogle Scholar
Astell, A. J., Joddrell, P., Groenewoud, H., de Lange, J., Goumans, M., Cordia, A. and Schikhof, Y. (2016). Does familiarity affect the enjoyment of touchscreen games for people with dementia?. International Journal of Medical Informatics, 91, e1–e8.Google Scholar
Baaijen, R., Boon, J. and Tichelaar, E. (2008). De Nederlandse samenvattende handleiding van de OPHI-II (versie 2.1.) Occupational Performance History Interview-II NL., The Netherlands: Amsterdam: Hogeschool van Amsterdam, Expertise Centrum Ergotherapie.Google Scholar
Barlow, J., Wright, C., Sheasby, J., Turner, A. and Hainsworth, J. (2002). Self-management approaches for people with chronic conditions: a review. Patient Education and Counseling, 48, 177–187.Google Scholar
Bello, G., Bouwmeester, F. and Westerik, E. (2013). Make my iDays, onderzoeksverslag hbo-v [research report Bachelor of Nursing]. Bachelor of Nursing, Saxion University of Applied Sciences, Deventer/Enschede.Google Scholar
Black, B. S., Johnston, D., Rabins, P. V., Morrison, A., Lyketsos, C. and Samus, Q. M. (2013). Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing independence at home study. Journal of the American Geriatrics Society, 61, 2087–2095.CrossRefGoogle ScholarPubMed
Brooker, D. (2003). What is person-centred care in dementia?. Reviews in Clinical Gerontology, 13, 215–222.CrossRefGoogle Scholar
Campbell, M. et al. (2000). Framework for design and evaluation of complex interventions to improve health. British Medical Journal, 321, 694–696.Google Scholar
Campbell, N. C. et al. (2007). Designing and evaluating complex interventions to improve health care. British Medical Journal, 334, 455–459.Google Scholar
Castillo, C. M., Woods, B. and Orrell, M. (2010). People with dementia living alone: what are their needs and what kind of support are they receiving?. International Psychogeriatrics, 22, 607–617.Google Scholar
Castillo, C. M., Woods, B. and Orrell, M. (2013). The needs of people with dementia living at home from user, caregiver and professional perspectives: a cross-sectional survey. BMC Health Services Research, 13, 43.CrossRefGoogle Scholar
Clare, L. (2008) Neuropsychological rehabilitation and people with dementia. Neuropsychological Rehabilitation: A Modular Handbook Hove. New York: Psychology Press.Google Scholar
Clare, L. and Jones, R. S. (2008). Errorless learning in the rehabilitation of memory impairment: a critical review. Neuropsychology Review, 18, 1–23.CrossRefGoogle ScholarPubMed
Corbin, J. and Strauss, A. (2008). Basics of Qualitative Research: Techniques for Developing Grounded Theory (p. 379). Thousand Oaks, CA: Sage publication.Google Scholar
Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I. and Petticrew, M. (2013). Developing and evaluating complex interventions: the new medical research council guidance. International Journal of Nursing Studies, 50, 587–592.Google Scholar
De Boer, M. E., Hertogh, C. M. P. M., Dröes, R.-M., Riphagen, I. I., Jonker, C. and Eefsting, J. A. (2007). Suffering from dementia – the patient's perspective: a review of the literature. International Psychogeriatrics, 19, pp. 1021–1039.CrossRefGoogle ScholarPubMed
Dröes, R. M., Bentvelzen, S., Meiland, F. and Graig, D. (2010a). Dementia-related and other factors to be taken into account when developing ICT support for people with dementia lessons from field trials. In Mulvenna, M. D. and Nugent, C. D. (eds.), Supporting People with Dementia using Pervasive Health Technologies (pp. 113–127). London: Springer.CrossRefGoogle Scholar
Dröes, R. M., Meiland, F. J. M., Schmitz, M. J. and Van Tilburg, W. (2011b). How do people with dementia and their carers evaluate the meeting centers support programme. Non-Pharmacological Therapies In Dementia, 2, 19–39.Google Scholar
Dröes, R. M., van der Roest, H. G., van Mierlo, L. and Meiland, F. J. (2011a). Memory problems in dementia: adaptation and coping strategies and psychosocial treatments. Expert Review of Neurotherapeutics, 11, 1769–1781.CrossRefGoogle ScholarPubMed
Dröes, R. M., Van Mierlo, L. D., Van der Roest, H. G. and Meiland, F. J. M. (2010b). Focus and effectiveness of psychosocial interventions for people with dementia in institutional care settings from the perspective of coping with the disease. Non-Pharmacological Therapies in Dementia, 1, 139–161.Google Scholar
Folstein, M. F., Folstein, S. E. and McHugh, P. R. (1975). “Mini-mental state”: a practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198.Google Scholar
GfK (2014). Evenveel Nederlanders met tablet als vaste computer. Nieuwe meting GfK trends in digitale media [Dutch use a tablet as often as a computer. New measurement GfK trends in digital media]. Available at: https://www.gfk.com/insights/press-release/evenveel-nederlanders-met-tablet-als-vaste-computer/; last accessed 05 February 2015.Google Scholar
Gitlin, L. N., Winter, L., Burke, J., Chernett, N., Dennis, M. P. and Hauck, W. W. (2008). Tailored activities to manage neuropsychiatric behaviors in persons with dementia and reduce caregiver burden: a randomized pilot study. The American Journal of Geriatric Psychiatry, 16, 229–239.CrossRefGoogle ScholarPubMed
Graff, M. J. L., Vernooij-Dassen, M. J. M., Thijssen, M., Dekker, J., Hoefnagels, W. H. L. and Rikkert, M. G. M. O. (2006a). Community based occupational therapy for patients with dementia and their care givers: randomised controlled trial. British Medical Journal, 333.Google ScholarPubMed
Graff, M. J. L., Vernooij-Dassen, M. J. M., Zajec, J., Olde-Rikkert, M. G. M., Hoefnagels, W. H. L. and Dekker, J. (2006b). How can occupational therapy improve the daily performance and communication of an older patient with dementia and his primary caregiver? A case study. Dementia: The International Journal of Social Research and Practice, 5, 503–532.Google Scholar
Graff, M., van Melick, M., Thijssen, M., Verstraten, P. and Zajec, J. (2010). Ergotherapie bij ouderen met dementie en hun mantelzorgers [Occupational therapy for dementia patients and their primary caregivers]. the Netherlands: Houten: Bohn Stafleu van Loghum.CrossRefGoogle Scholar
Groenewoud, J. H. H. and de Lange, J. J. (2014). Evaluatie van individuele happy games op de iPad voor mensen met dementie [evaluation of personalised happy games on the iPad for people with dementia]. Rotterdam: Kenniscentrum zorginnovatie, Hogeschool Rotterdam.Google Scholar
Haigh, C. (2008). Research governance and research ethics. In Watson, R., McKenna, H., Cowman, S. and Keady, J. (eds.), Nursing Research: Designs and Methods (pp. 125–135). Edinburgh: Churchill Livingstone Elsevier.Google Scholar
Hak, T., van der Veer, V. D. K. and Jansen, H. (2008). The Three-Step Test-Interview (TSTI): an observation-based method for presenting self-completion questionnaires. Survey Research Method, 2, 143–150.Google Scholar
Higgins, J. P. T. and Green, S. (2011). Handbook for systematic reviews of interventions version 5.1.0. The Cochrane Collaboration.Google Scholar
Hopper, T. et al. (2013). An evidence-based systematic review on cognitive interventions for individuals with dementia. American Journal of Speech-Language Pathology, 22, 126–145.Google Scholar
Huber, M. et al. (2011). How should we define health?. British Medical Journal, 343, d4163. doi: 10.1136/bmj.d4163.Google Scholar
Imbeault, H. et al. (2014). Electronic organiser and Alzheimer's disease: fact or fiction?. Neuropsychological Rehabilitation, 24, 71–100.CrossRefGoogle ScholarPubMed
Kerkhof, Y. J. F., den Ouden, M. E. M., Ben Allouch, S., Soeteman, S., Scholten, A. and Willems, C. G. (2016). Development of a memory application to support independence of clients with dementia or intellectual disabilities. International Journal of Mobile Human Computer Interaction. Submitted: June 2016.Google Scholar
Kerkhof, Y. J. F., Rabiee, F. and Willems, C. G. (2015). Experiences of using a memory aid to structure and support daily activities in a small-scale group accommodation for people with dementia. Dementia: The International Journal of Social Research and Practice, 14, 633–649.CrossRefGoogle Scholar
Kessels, R. P. C. and Joosten-Weyn Banningh, L. (2008). Het impliciete geheugen en de effectiviteit van foutloos leren bij dementie [The implicit memory and the effectiveness of error-lees learning in dementia]. Gedragstherapie, 41, 91–103.Google Scholar
Kielhofner, G. (2008). A Model of Human Occupation: theory and Application. Baltimore, MD: Lippincott Williams & Wilkins. Google Scholar
Kitwood, T. (1997). Dementia Reconsiderid: the Person Comes First (p. 160). Buckingham: Open University Press.Google Scholar
Krijgsman, J., Bie de, J., Burghouts, A., Cath, G. J., Gennip van, L. and Friele, R. (2013). eHealth, verder dan je denkt: eHealth-monitor 2013 [eHealth further than you think: monitoring eHealth 2013], Den Haag, Utrecht: Nictiz, NIVEL. Available at: http://www.nivel.nl/nieuws/ehealth-verder-dan-je-denkt.Google Scholar
Krijgsman, J., Klein, and Wolterink, G. (2012). Ordening in the wereld van eHealth [Organisation in the world of eHealth]. Available at: https://www.nictiz.nl/SiteCollectionDocuments/Whitepapers/Whitepaper%20Ordening%20in%20de%20wereld%20van%20eHealth.pdf.Google Scholar
Lekeu, F., Wojtasik, V., Van der Linden, M. and Salmon, E. (2002). Training early Alzheimer patients to use a mobile phone. Acta Neurologica Belgica, 102, 114–121.Google ScholarPubMed
Leontjevas, R., Gerritsen, D. L., Smalbrugge, M., Teerenstra, S., Vernooij-Dassen, M. J. F. J. and Koopmans, R. T. C. M. (2013). A structural multidisciplinary approach to depression management in nursing-home residents: a multicentre, stepped-wedge cluster-randomised trial. The Lancet, 381, 2255–2264.CrossRefGoogle ScholarPubMed
Leuty, V., Boger, J., Young, L., Hoey, J. and Mihailidis, A. (2013). Engaging older adults with dementia in creative occupations using artificially intelligent assistive technology. Assistive Technology, 25, 72–79.Google Scholar
Lim, F. S., Wallace, T., Luszcz, M. A. and Reynolds, K. J. (2013). Usability of tablet computers by people with early-stage dementia. Gerontology, 59, 174–182.CrossRefGoogle ScholarPubMed
Lund, A. M. (2001). Measuring Usability with the USE Questionnaire. STC Usability SIG Newsletter. Available at: http://hcibib.org/perlman/question.cgi; last accessed 05 March 2009.Google Scholar
Marceglia, S., Bonacina, S., Zaccaria, V., Pagliari, C. and Pinciroli, F. (2012). How might the iPad change healthcare?. Journal of the Royal Society of Medicine, 105, 233–241.CrossRefGoogle ScholarPubMed
Martin, F., Turner, A., Wallace, L. M. and Bradbury, N. (2013). Conceptualisation of self-management intervention for people with early stage dementia. European Journal of Ageing, 10, 75–87.Google Scholar
Martin, F., Turner, A., Wallace, L. M., Choudhry, K. and Bradbury, N. (2012). Perceived barriers to self-management for people with dementia in the early stages. Dementia: The International Journal of Social Research and Practice 12, 481–493.Google Scholar
Meiland, F. J. M. et al. (2010). User-participatory development of assistive technology for people with dementia–from needs to functional requirements. First results of the COGKNOW project. Non-Pharmacological Therapies in Dementia, 1, 73–93.Google Scholar
Meiland, F. J. M. et al. (2012). Usability of a new electronic assistive device for community-dwelling persons with mild dementia. Aging Mental Health, 16, 584–591.Google Scholar
Meussen, E., Wensink, K., Bannink, L., Nagtzaam, N. and Steghuis, V. (2014). Make my iDays, onderzoeksverslag hbo-v [research report Bachelor of Nursing]. Bachelor of Nursing, Saxion University of applied sciences, Deventer/Enschede.Google Scholar
Moniz-Cook, E., Vernooij-Dassen, M., Woods, B. and Orrell, M. (2011). Psychosocial interventions in dementia care research: the INTERDEM manifesto. Aging & Mental Health, 15, 283–290.Google Scholar
Moore, G. F. et al. (2015). Process evaluation of complex interventions: medical research council guidance. British Medical Journal, 350, h1258. doi: 10.1136/bmj.h1258.Google Scholar
Mountain, G. A. (2006). Self-management for people with early dementia. An exploration of concepts and supporting evidence. Dementia: The International Journal of Social Research and Practice, 5, 429–446.Google Scholar
Mountain, G. A. and Craig, C. L. (2012). What should be in a self-management programme for people with early dementia?. Aging & Mental Health, 16, 576–83.Google Scholar
Murphy, K., Jordan, F., Hunter, A., Cooney, A. and Casey, D. (2015). Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies. Dementia: The International Journal of Social Research and Practice, 14, 800–824.CrossRefGoogle ScholarPubMed
Naumann, A. B., Hurtienne, J., Göllner, S., Langdon, P. M. and Clarkson, P. J. (2011). Technology supporting the everyday life of people with dementia. Proceedings of the Conference on Inclusive Design – The Role of Inclusive Design in Making Social Innovation Happen, London.Google Scholar
Nauta, J. M., Brangert, J., Roest, M., Janssen, R. and Hettinga, M. (2013). TalkMeHome: an in situ evaluation of a service to guide a lost person with dementia home safely. Journal of the International Society for Telemedicine and eHealth, 1, 54–61.Google Scholar
Nijhof, N., van Gemert-Pijnen, J. E. W. C., Burns, C. M. and Seydel, E. R. (2013). A personal assistant for dementia to stay at home safe at reduced cost. Gerontechnology, 11, 469–479.CrossRefGoogle Scholar
Nijland, N. (2011). Grounding eHealth: towards a holistic framework for sustainable eHealth technologies. PhD Thesis, University of Twente.Google Scholar
O'Connor, D. W., Ames, D., Gardner, B. and King, M. (2009). Psychosocial treatments of behavior symptoms in dementia: a systematic review of reports meeting quality standards. International Psychogeriatrics, 21, 225–40.Google Scholar
Olazaran, J. et al. (2010). Nonpharmacological therapies in Alzheimer's disease: a systematic review of efficacy. Dementia and Geriatric Cognitive Disorders, 30, 161–78.Google Scholar
Oren, S., Willerton, C. and Small, J. (2014). Effects of spaced retrieval training on semantic memory in Alzheimer's disease: a systematic review. Journal of Speech Language, and Hearing Research, 57, 247–70.Google Scholar
Orpwood, R. et al. (2010). Designing technology to improve quality of life for people with dementia: user-led approaches. Universal Access in the Information Society, 9, 249–259.Google Scholar
Phinney, A., Chaudhury, H. and O'connor, D. L. (2007). Doing as much as I can do: the meaning of activity for people with dementia. Aging and Mental Health, 11, 384–393.Google Scholar
Pratesi, A., Sixsmith, J. and Woolrych, R. (2013). Genuine partnership and equitable research: working “with” older people for the development of a smart activity monitoring system. The Innovation Journal: The Public Sector Innovation Journal, 18, 1–17. Available at: http://www.innovation.cc/scholarly-style/18_3_6_pratesi_partner-equal-research.pdf.Google Scholar
Pringle, A. and Somerville, S. (2013). Computer-assisted reminiscence therapy: developing practice. Mental Health Practice, 17, 34–37.Google Scholar
Quinn, C., Toms, G., Anderson, D. and Clare, L. (2015). A review of self-management interventions for people with dementia and mild cognitive impairment. Journal of Applied Gerontology, Epublished ahead of print, doi: 10.1177/0733464814566852.Google Scholar
Reisberg, B., Ferris, S. H., de Leon, M. J. and Crook, T. (1982). The global deterioration scale for assessment of primary degenerative dementia. The American journal of psychiatry, 139, 1136–1139.Google ScholarPubMed
Riley, P., Alm, N. and Newell, A. (2009). An interactive tool to promote musical creativity in people with dementia. Computers in Human Behavior, 25, 599–608.Google Scholar
Ritchie, J. and Spencer, L. (1994). Qualitative data analysis for applied policy research In Bryman, and Burgess, (eds.), Analyzing Qualitative Data (pp. 173–194). London: Routledge.Google Scholar
Smith, S. K. and Mountain, G. A. (2012). New forms of information and communication technology (ICT) and the potential to facilitate social and leisure activity for people living with dementia. International Journal of Computers in Healthcare, 1, 332–345.Google Scholar
Span, M. et al. (2014). An interactive web tool to facilitate shared decision making in dementia: design issues perceived by caregivers and patients. International Journal On Advances in Life Sciences, 6, 107–121.Google Scholar
Steen, M., Kuijt-Evers, L. and Klok, J. (2007). Early user involvement in research and design projects–A review of methods and practices'. The 23rd EGOS Colloquium (European Group for Organizational Studies), Vienna.Google Scholar
Stunnenberg, L. and Adriaansen, M. (2015). Zorg op afstand. De oplossing in een kantelende zorgomgeving? [Care at a distance. The solution for reforms in long-term care?]. TvZ Tijdschrift Voor Verpleegkundig Experts, 4, 48–52.Google Scholar
Testad, I. et al. (2014). The value of personalized psychosocial interventions to address behavioral and psychological symptoms in people with dementia living in care home settings: a systematic review. International Psychogeriatrics, 26, 1083–1098.Google Scholar
Thivierge, S., Simard, M., Jean, L. and Grandmaison, É. (2008). Errorless learning and spaced retrieval techniques to relearn instrumental activities of daily living in mild Alzheimer's disease: a case report study. Neuropsychiatric Disease and Treatment, 4, 987–999.Google ScholarPubMed
Upton, D., Upton, P., Jones, T., Jutlla, K. and Brooker, D. (2011). Evaluation of the impact of touch screen technology on people with dementia and their carers within care home settings, Worcester: University of Worcester. Available at: http://memoryappsfordementia.org.uk/wp-content/uploads/University-of-Worcester-iPad-report-2011.pdf.Google Scholar
Van der Roest, H. G. et al. (2009). What do community-dwelling people with dementia need? a survey of those who are known to care and welfare services. International Psychogeriatrics, 21, 949–965.CrossRefGoogle Scholar
Van Gemert-Pijnen, E. W. C. J. et al. (2011). A holistic framework to improve the uptake and impact of ehealth technologies. Journal of Medical Internet Research, 13, e111. doi: 10.2196/jmir.1672.Google Scholar
Van't Leven, N., Prick, A. E. J., Groenewoud, J. G., Roelofs, P. D., de Lange, J. and Pot, A. M. (2013). Dyadic interventions for community-dwelling people with dementia and their family caregivers: a systematic review. International Psychogeriatrics, 25, 1581–1603.Google Scholar
Vegterlo, C., Folkers, I., van der Zee, D. and Grunder, W. (2014). Make my iDays, onderzoeksverslag hbo-v [research report Bachelor of Nursing]. Bachelor of Nursing, Saxion University of Applied Sciences, Deventer/Enschede.Google Scholar
Vernooij-Dassen, M. (2007). Meaningful activities for people with dementia. Aging & Mental Health, 11, 359–360.Google Scholar
Vernooij-Dassen, M. and Moniz-Cook, E. (2014). Raising the standard of applied dementia care research: addressing the implementation error. Aging & Mental Health, 18, 809–814.Google Scholar
Vernooij-Dassen, M., Vasse, E., Zuidema, S., Cohen-Mansfield, J. and Moyle, W. (2010). 'Psychosocial interventions for dementia patients in long-term care. International Psychogeriatrics, 22, 1121–1128.Google Scholar
Yin, R. K. (2003). Case study research. Design and Methods. Thousand Oaks, CA: Sage Publications.Google Scholar