Requirements gathering with alzheimer's patients and caregivers

ABSTRACT

Technology may be able to play a role in improving the quality of life for Alzheimer's patients and their caregivers. We are evaluating the feasibility of an information appliance with the goal of alleviating repetitive questioning behaviour, a contributing factor to caregiver stress. Interviews were conducted with persons with Alzheimer's disease and their caregivers to determine the nature of the repetitive questioning behaviour, the information needs of patients, and the interaction abilities of both the patients and the caregivers. We report results of these interviews and discuss the challenges of requirements gathering with persons with Alzheimer's disease and the feasibility of introducing an information appliance to this population.

REFERENCES

• 1: Alzheimer's Association. Glossary, www.alz.org/Resources/Glossary.asp, (2005).
• 2: Alzheimer's Disease and Related Disorders Association of NSW Inc., Repetitive Behaviour in Dementia Helpnote. 1997.
• 3: Alzheimer's Pakistan. Repetitive questioning and behaviour, www.alz.org.pk/Tips.htm, (2003).
• 4: Alzheimer's Society. Unusual behaviour, Alzheimer's Society Advice Sheet, http://www.alzheimers.org.uk/carers/advice_unusual.html, (2000).
• 5: Beers, M.H. Behaviour Disorders in Dementia, The Merck Manual of Geriatrics, www.merck.com/pubs/mm_geriatrics/sec5/ch41.htm, (2002).
• 6: Bourgeois, M.S., Burgio, L.D., Schulz, R., Beach, S. and Palmer, B. Modifying Repetitive Verbalizations of Community-Dwelling Patients with AD. The Gerontologist, 37 (1) (1997). 30--39.
• 7: Britten, N. Qualitative Interviews in Health Care Research. in Pope, C. ed. Qualitative Research in Health Care, BMJ Books, London, England, 1999.
• 8: Stefan Carmien, End user programming and context responsiveness in handheld prompting systems for persons with cognitive disabilities and caregivers, CHI '05 extended abstracts on Human factors in computing systems, April 02-07, 2005, Portland, OR, USA [doi>10.1145/1056808.1056889]
• 9: Tira Cohene , Ron Baecker , Elsa Marziali, Designing interactive life story multimedia for a family affected by alzheimer's disease: a case study, CHI '05 extended abstracts on Human factors in computing systems, April 02-07, 2005, Portland, OR, USA [doi>10.1145/1056808.1056901]
• 10: R. Eisma , A. Dickinson , J. Goodman , A. Syme , L. Tiwari , F. Newell, Early user involvement in the development of information technology-related products for older people, Universal Access in the Information Society, v.3 n.2, p.131-140, June 2004 [doi>10.1007/s10209-004-0092-z]
• 11: Feinberg, L.F. and Whitlatch, C.J. Are Persons with Cognitive Impairment Able to State Consistent Choices? The Gerontologist, 41 (3) (2001). 374--382.
• 12: Gary Gowans , Jim Campbell , Norm Alm , Richard Dye , Arlene Astell , Maggie Ellis, Designing a multimedia conversation aid for reminiscence therapy in dementia care environments, CHI '04 extended abstracts on Human factors in computing systems, April 24-29, 2004, Vienna, Austria [doi>10.1145/985921.985943]
• 13: Haigh, K.Z. and Yanco, H.A., Automation as Caregiver: A Survey of Issues and Technologies. In AAAI 02 Workshop "Automation as Caregiver", (2002), 39--53.
• 14: International Psychogeriatric Association, International Experts Reach Consensus on Definitions of Behavioral and Pychological Symptoms of Dementia. In Report on the International Consensus Conference on Behavioural Disturbances of Dementia, (Washington, DC, 1996).
• 15: Kautz, H., Fox, D., Etzioni, O., Boriello, G. and Arnstein, L. An overview of the Assisted Cognition Project, American Association for Artificial Intelligence, www.aai.org, (2002).
• 16: Lorna Lines , S. Hone, Eliciting user requirements with older adults: lessons from the design of an interactive domestic alarm system, Universal Access in the Information Society, v.3 n.2, p.141-148, June 2004 [doi>10.1007/s10209-004-0094-x]
• 17: Margaret Morris , Jay Lundell , Eric Dishman, Catalyzing social interaction with ubiquitous computing: a needs assessment of elders coping with cognitive decline, CHI '04 extended abstracts on Human factors in computing systems, April 24-29, 2004, Vienna, Austria [doi>10.1145/985921.986011]
• 18: David Mosberger, Scout: a path-based operating system, University of Arizona, Tucson, AZ, 1998
• 19: Donald A. Norman, The invisible computer, MIT Press, Cambridge, MA, 1998
• 20: Petersen, R.C., Stevens, J.C., Ganguli, M., Tangalos, E.G., Cummings, J.L. and DeKosky, S.T. Practice parameter: Early detection of dementia: Mild cognitive impairment (an evidence-based review), Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology (56) (2001). 1133--1142.
• 21: Pollack, M.E., Brown, L., Colbry, D., McCarthy, C.E., Orosz, C., Peintner, B., Ramakrishnan, S. and Tsamardinos, I. Autominder: An Intelligent Cognitive Orthotic System for People with Memory Impairment. Robotics and Autonomous Systems, 44 (2003). 273--282.
• 22: Pope, C. and Mays, N. Qualitative Methods in Health Research. in Pope, C. ed. Qualitative Research in Health Care, BMJ Books, London, England, 1999.
• 23: Pope, C., Ziebland, S. and Mays, N. Analysing Qualitative Data. in Pope, C. ed. Qualitative Research in Health Care, BMJ Books, London, England, 1999.
• 24: Ready, R.E., Ott, B.R. and Grace, J. Amnestic Behavior in Dementia: Symptoms to Assist in Early Detection and Diagnosis. JAGS, 51 (2003). 32--37.
• 25: Rockwood, K., Graham, J.E. and Fay, S. Goal setting and attainment in Alzheimer's disease patients treated with donepezil. Journal of Neurology, Neurosurgery and Psychiatry (73) (2002). 500--507.
• 26: Rockwood, K. and MacKnight, C. Understanding dementia, A primer of diagnosis and management. Pottersfield Press Ltd., Halifax, 2001.
• 27: Andrea Szymkowiak , Kenny Morrison , Peter Gregor , Prveen Shah , J. Evans , A. Wilson, A memory aid with remote communication using distributed technology, Personal and Ubiquitous Computing, v.9 n.1, p.1-5, January 2005 [doi>10.1007/s00779-004-0259-x]

INDEX TERMS

Primary Classification:
  K. Computing Milieux
  K.4 COMPUTERS AND SOCIETY
      K.4.2 Social Issues
          Subjects: Assistive technologies for persons with disabilities

Additional Classification:
  H. Information Systems
  H.5 INFORMATION INTERFACES AND PRESENTATION (I.7)
      H.5.2 User Interfaces (D.2.2, H.1.2, I.3.6)
          Subjects: User-centered design

General Terms:
Design, Experimentation, Human Factors

Keywords:
alzheimer's disease, assistive technology, cognitive aging, information appliance, user-centered design