What Do Family Caregivers of Alzheimer’s Disease Patients Desire in Smart Home Technologies?

Summary

Objectives: The authors’ aim was to investigate the representations, wishes, and fears of family caregivers (FCs) regarding 14 innovative technologies (IT) for care aiding and burden alleviation, given the severe physical and psychological stress induced by dementia care, and the very slow uptake of these technologies in our society.

Methods: A cluster sample survey based on a selfadministered questionnaire was carried out on data collected from 270 families of patients with Alzheimer’s disease or related disorders, located in the greater Paris area. Multiple Correspondence Analysis was used in addition to usual statistical tests to identify homogenous FCs clusters concerning the appreciation or rejection of the considered technologies.

Results: Two opposite clusters were clearly defined: FCs in favor of a substantial use of technology, and those rather or totally hostile. Furthermore the distributions of almost all the answers of appreciations were U-shaped. Significant relations were demonstrated between IT appreciation and FC‘s family or gender statuses (e.g., female FCs appreciated a tracking device for quick recovering of wandering patients more than male FCs: p = 0.0025, N = 195).

Conclusions: The study provides further evidence of the contrasted perception of technology in dementia care at home, and suggests the development of public debates based on rigorous assessment of practices and a strict ethical aim to protect against misuse.

Keywords

Smart homes - dementia care - Alzheimer’s disease - family caregivers - acceptability

• References

• 1 Nagaratnam N, Lewis-Jones M, Scott D, Palazzi L. Behavioral and psychiatric manifestations in dementia patients in a community: caregiver burden and outcome. Alzheimer Dis Assoc Disord 1998; 12 (04) 330-334.
• 2 Larson EB, Kukull WA, Katzman RL. Cognitive impairment: dementia and Alzheimer’s disease. Annu Rev Public Health 1992; 13: 431-449.
• 3 Letenneur L, Jacqmin H, Commenges D, Barberger-Gateau P, Dartigues JF, Salamon R. Cerebral and functional aging: first results on prevalence and incidence of the Paquid cohort. Methods Inf Med 1993; 32 (03) 249-251.
• 4 Takahashi M, Tanaka K, Miyaoka H. Depression and associated factors of informal caregivers versus professional caregivers of demented patients. Psychiatry Clin Neurosci 2005; 59 (04) 473-480.
• 5 Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA 1999; 23 (282) 2215-2219.
• 6 Demiris G. Home based E-health applications. Stud Health Technol Inform 2004; 106: 15-24.
• 7 Rialle V, Duchêne F, Noury N, Bajolle L, Demongeot J. Health ‘smart’ home: Information technology for patients at home. Telemedicine Journal and E-Health 2002; 8 (04) 395-409.
• 8 Rialle V, Rumeau P, Ollivet C, Hervé C. Smart Homes. In: Wootton R, Dimmick SL, Kvedar JC. editors. Home Telehealth. London: Royal Society of Medicine Press; 2006. pp 65-75.
• 9 Iliffe S, Austin T, Wilcock J, Bryans M, Turner S, Downs M. Design and implementation of a computer decision support system for the diagnosis and management of dementia syndromes in primary care. Methods Inf Med 2002; 41 (02) 98-104.
• 10 Magnusson L, Hanson E, Borg M. A literature review study of Information and Communication Technology as a support of frail older people living at home and their family carers. Technology and Disability 2004; 16: 223-235.
• 11 Bjorneby S, Topo P, Holthe T. Technology, ethics and dementia: A guidebook on how to apply technology in dementia care. Sem, Norway: The Norwegian Centre for Dementia Research & INFO Banken; 1999
• 12 Marshall M. editor. ASTRID: a social and technological response to meeting the needs of individuals with dementia and their carers. London: Hawker Publications; 2000
• 13 Czaja SJ, Rubert MP. Telecommunications technology as an aid to family caregivers of persons with dementia. Psychosom Med 2002; 64 (03) 469-476.
• 14 Hanson E, Magnusson L, Oscarsson T, Nolan M. Case study: benefits of IT for older people and their carers. Br J Nurs 2002; 11 (13) 867-869 72-74.
• 15 ENABLE-Consortium. Enabling technologies for people with dementia. HOPE Newsletter (Housing for Older People in Europe). 2001; November 2001: 16-17.
• 16 Marshall M. Technology and technophobia. Journal of Dementia Care 2002; 10 (05) 14-15.
• 17 Anderson NB, Hanson E, Magnusson L. Views of family carers and older people of information technology. Br J Nurs 2002; 11 (12) 827-831.
• 18 Heller T, Sherer MJ, Bodine C, Kirsch N, LoPresti E. Assessing Needs, Knowledge, Barriers and Use of Technology among Persons with Cognitive Disabilities. Proc ICADI. 2006 2nd International Conference on Aging, Disability and Independence; 2006; St. Petersburg, FL: Univ. Florida, Gainsville; 2006. p 27.
• 19 Haigh KZ, Kiff LM, Myers J, Guralnik V, Krichbaum K, Phelps J. et al. The Independent LifeStyle AssistantTM (I.L.S.A.): Lessons Learned. 2003
• 20 Hanson EJ, Teltley J, Clarke A. Respite care for frail older people and their family carers: concept analysis and user focus group findings of a pan European Nursing research Project. Journal of Advanced Nursing 1999; 30 (06) 1396-1407.
• 21 Demiris G, Speedie S, Finkelstein S. A questionnaire for the assessment of patients’ impressions of the risks and benefits of home telecare. J Telemed Telecare 2000; 6 (05) 278-284.
• 22 Morris M, Lundell J, Dishman E, Needham B. New Perspectives on Ubiquitous Computing from Ethnographic Study of Elders with Cognitive Decline. In: Dey AK, Schmidt A, McCarthy JF. editors. UbiComp 2003: Ubiquitous Computing: 5th International Conference Seattle, WA, USA: October 12-15, 2003, Proceedings: Springer-Verlag GmbH; 2003. pp 227-242.
• 23 Salvador T, Anderson K. Practical Considerations of Context for Context Based Systems: An Example from an Ethnographic Case Study of a Man Diagnosed with Early Onset Alzheimer's Disease. In: Dey AK, Schmidt A, McCarthy JF. editors. UbiComp 2003: Ubiquitous Computing: 5th International Conference, Seattle, WA, USA,: October 12-15, 2003, Proceedings: Springer-Verlag GmbH; 2003. pp 243-255.
• 24 Gillette-Guyonnet S, Andrieu S, Nourhashemi F, Balardy L, Micas M, Ousset PJ. et al. The French network multicenter study Predictive factors of hospitalization and management of Alzheimer's disease patients (REAL.FR). Rev Med Interne 2003; 24 (03) 278s-282s.
• 25 Ramaroson H, Helmer C, Barberger-Gateau P, Letenneur L, Dartigues JF. Prevalence of dementia and Alzheimer's disease among subjects aged 75 years or over: updated results of the PAQUID cohort. Rev Neurol (Paris). 2003; 159 (04) 405-411.
• 26 Thomas P, Lalloue F, Preux PM, Hazif-Thomas C, Pariel S, Inscale R. et al. Dementia patients caregivers quality of life: the PIXEL study. Int J Geriatr Psychiatry 2006; 21 (01) 50-56.
• 27 Revel Da Rocha V, Haritchabalet I, Kervinio C. et al. Construction d’une échelle simplifiée pour la détection en médecine générale du fardeau de l’aidant d’une personne âgée dépendante. L’Année Gérontologique 2002; 16: 131-137.
• 28 Benzecri JP. Correspondence analysis handbook. Paris: Dunod; 1992
• 29 Poulson D, Ashby M, Richardson S. editors. USERfit: A Practical Handbook on User-centred Design for Assistive Technology. Brussels- Luxembourg: 71-83: ECSC-EC-EAEC; 1996
• 30 Koester RJ. Lost Alzheimer’s Disease Search Management: A law enforcement guide to managing the initial response and investigation of the missing Alzheimer’s disease subject. Virginia: dbS Productions; 1999
• 31 McShane R, Hope T, Wilkinson J. Tracking patients who wander: ethics and technology. The Lancet 1994; 343: 1274.
• 32 Fisk MJ. Telecare equipment in the home Issues of intrusiveness and control. J Telemed Telecare 1997; 3 (01) 30-32.