OJN  Vol.3 No.1 , March 2013
Professional caregivers’ perceptions on the prerequisites for and consequences of people with mild dementia using a digital photo diary
Abstract: Research is currently ongoing to investigate the use of assistive technology by people with mild dementia to support independent living at home. The aim of this study was to describe professional caregivers’ perceptions on the prerequisites for and consequences of people with mild dementia using a digital photo diary to facilitate their talks about daily events with their family members. A questionnaire was sent out to 582 participants (response rate 70.1%) to elucidate the professional caregivers’ perceptions on the use of the digital photo diary. The questionnaire contained both quantitative and qualitative data and was analyzed with descriptive statistics, factor analysis, multivariate analysis of covariance and qualitative content analysis. This study reports the results related to prerequisites and consequences of using the photo diary. The results from the factor analysis revealed four factors: Trust, Vulnerability, Dependency/Independency and Control. The qualitative content analysis resulted in five categories: Immediate implementation after receiving a diagnose is required, Relatives’ participation is a necessity, Strengthened self-esteem and meaningful everyday life, Increased alienation and a feeling of isolation and Assistive digital devices provide opportunities. The theme was interpreted as: Personalization and the preservation of dignity. The conclusion that can be drawn from this study is that the participants had an overall positive view of the usage of this specific digital photo diary for people suffering from dementia, but rigorous considerations needs before implementation of the device and regularly follow ups if dignity is to be maintained for people with dementia.
Cite this paper: Harrefors, C. , Axelsson, K. , Lundquist, A. , Lundquist, B. and Sävenstedt, S. (2013) Professional caregivers’ perceptions on the prerequisites for and consequences of people with mild dementia using a digital photo diary. Open Journal of Nursing, 3, 42-54. doi: 10.4236/ojn.2013.31006.

[1]   Sanders, S. (1986) Development of a tool to measure subjective time experience. Nursing Research, 35, 178182. doi:10.1097/00006199-198605000-00016

[2]   S?venstedt, S., Sandman, P.O. and Zingmark, K. (2006) The duality in using information and communication technology in elder care. Journal of Advanced Nursing, 56, 17-25. doi:10.1111/j.1365-2648.2006.03975.x

[3]   Thompson, H.J. and Thielke, S.M. (2009) How do health care providers perceive technologies for monitoring older adults? Annual International Conference of the Institute of Electrical and Electronics Engineers (IEEE) Engineering in Medicine and Biology Society, Seattle, 3-6 September 2009, 4315-4318.

[4]   van Thiel, G. and van Delden, J. (2001) The principle of respect for autonomy in the care of nursing home residents. Nursing Ethics, 8, 419-431.

[5]   Randers, I. and Mattiasson, A.C. (2004) Autonomy and integrity: Upholding older adult patients’ dignity. Journal of Advanced Nursing, 45, 63-71. doi:10.1046/j.1365-2648.2003.02861.x

[6]   Boisaubin, E., Chu, A. and Catalano, J. (2007) Perceptions of long-term care, autonomy and dignity, by residents, family and caregivers: The houstone experience. Journal of Medicine and Philosophy, 32, 447-464. doi:10.1080/03605310701626414

[7]   Bullock, R. and Hammond, G. (2003) Realistic expectations: The management of severe Alzheimer disease. Alzheimer Disease and Associated Disorders, 17, 80-85. doi:10.1097/00002093-200307003-00004

[8]   Steeman, E., Groddies, J., Grypdonck, M., De Bal, N. and Dierckx de Casterlé, B. (2007) Living with dementia from the perspective of older people: Is it a positive story? Aging and Mental Health, 11, 119-130. doi:10.1080/13607860600963364

[9]   Steeman, E., De Casterlé, B.D., Godderis, J. and Grypdonck, M. (2006) Living with early-stage dementia: A review of qualitative studies. Journal of Advanced Nursing, 54, 722-738. doi:10.1111/j.1365-2648.2006.03874.x

[10]   Niemeijer, A.R., Frederiks, B.J.M., Riphagen, I.I., Legemaate, J., Eefsting, J.A. and Hertogh, C. (2010) Ethical and practical concerns of surveillance technologies in residential care for people with dementia or intellectual disabilities: an overview of the literature. International Psychogeriatrics, 22, 1129-1142. doi:10.1017/S1041610210000037

[11]   Powell, J., Gunn, L., Lowe, P., Sheehan, B., Griffiths, F. and Clarke, A. (2010) New networked technologies and carers of people with dementia: An interview study. Ageing and Society, 30, 1073-1088. doi:10.1017/S0144686X1000019X

[12]   Nugent, C., Mulvenna, M., Moelaert, F., Bergvall-K?reborn, B., Meiland, F., Craig, D., Davies, R., Reinersmann, A., Hettinga, M., Andersson, A.L., Dr?es, R.M. and Bengtsson, J.E. (2007) Home based assistive technologies for people with mild dementia. Lecture Notes in Computer Science (LNCS), 63-69.

[13]   Landau, R., Werner, S., Auslander, G.K., Shoval, N. and Heinik, J. (2010) What do cognitively intact older people think about the use of electronic tracking devices for people with dementia? A preliminary analysis. International Psychogeriatrics, 22, 1301-1309. doi:10.1017/S1041610210001316

[14]   Engstr?m, M., Lindqvist, R., Ljunggren, B. and Carlsson, M. (2009) Staff members’ perceptions of a ICT support package in dementia care during the process of implementation. Journal of Nursing Management, 17, 781-789. doi:10.1111/j.1365-2834.2009.00985.x

[15]   Bowlby, S., Gregory, S. and McKie, L. (1997) Doing home: Patriarchy, caring and space. Women’s Studies International Forum, 20, 343-350. doi:10.1016/S0277-5395(97)00018-6

[16]   Moore, J. (2000) Placing home in context. Journal of Environmental Psychology, 20, 207-217. doi:10.1006/jevp.2000.0178

[17]   Borg, M. (2005) What makes a house a home: The role of material resources in recovery from severe mental illness. American Journal of Psychiatric Rehabilitation, 8, 243256. doi:10.1080/15487760500339394

[18]   Oswald, F. and Wahl, H.W. (2005) Dimensions of the meaning of home. In: Rowles, G.D. and Chaudhury, H., Eds., Home and Identity in Late Life: International Perspectives, Springer, New York, 21-45.

[19]   Haak, M., F?nge, A., Iwarsson, S., and Dahlin-Ivanoff, S. (2007) Home as a signification of independence and autonomy: Experiences among old Swedish people. Scandinavian Journal of Occupational Therapy, 14, 16-24. doi:10.1080/11038120601024929

[20]   Harrefors, C., Axelsson, K. and S?venstedt, S. (2010) Using assistive technology services at differing levels of care: Healthy older couples’ perceptions. Journal of Advanced Nursing, 66, 1523-1532. doi:10.1111/j.1365-2648.2010.05335.x

[21]   Topo, P. (1998) Technology in everyday life and care of elderly living at home and suffering from dementia. In: Graafmans, J., Taipale, V. and Charness, N., Eds., Gerontology; A Sustainable Investment in the Future, IOS Press, Amsterdam, 320-323.

[22]   Rauhala, M. and Topo, P. (2003) Independent living, technology and ethics. Technology and Disability, 15, 205214.

[23]   Magnusson, L. and Hanson, E. (2003) Ethical issues arising from a research, technology and development project to support frail older people and their family carers at home. Health and Social Care in the Community, 11, 431-439. doi:10.1046/j.1365-2524.2003.00446.x

[24]   Kikhia, B. (2009) Context-aware life-logging for persons with mild dementia. Annual International Conference of the Institute of Electrical and Electronics Engineers (IEEE), 6183-6186.

[25]   Bj?rneby, S., Topo, P. and Holthe, T. (1999) Technology, ethics and dementia. A guidebook on how to apply technology in dementia care. Norwegian Centre for Dementia Research, Oslo.

[26]   Osgood, C., Suci, G. and Tannenbaum, P. (1957) The Measurement of Meaning. Board of Trustees of University of Illinios, Urbana.

[27]   Tabachnick, B. and Fidell, F. (2001) Using multivariate statistics. 4th Edition, Allyn & Bacon, Boston.

[28]   Harrefors, C., S?venstedt, S., Lundquist, A., Lundquist, B. and Axelsson, K. (2011) Professional caregivers’ perceptions on how persons with mild dementia might experience the usage of a digital photo diary. The Open Nursing Journal, 6, 20-29. doi:10.2174/1874434601206010020

[29]   Elo, S. and Kyng?s, H. (2008) The qualitative content analysis process. Journal of Advanced Nursing, 62, 107115. doi:10.1111/j.1365-2648.2007.04569.x

[30]   Graneheim, U.H. and Lundman, B. (2004) Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105-112. doi:10.1016/j.nedt.2003.10.001

[31]   Edlund, M. (2002) The human dignity: a basic caring concept, (Swedish). Ph.D. Thesis, ?bo Academi University, ?bo.

[32]   Nordenfelt, L. (2004) The varieties of dignity. Health Care Analysis, 12, 69-81. doi:10.1023/B:HCAN.0000041183.78435.4b

[33]   Sletteb?, A., Caspari, S., Lohne, V., Aasgaard., T. and N?den., D. (2009) Dignity in the life of people with head injuries. Journal of Advanced Nursing, 65, 2426-2433. doi:10.1111/j.1365-2648.2009.05110.x

[34]   Cooley, C.H. (1964) Human nature and the social order. Schocken, New York.

[35]   Pohlmann, C. (2006) Who shapes the self of independents and interdependents? Explicit and implicit measures of the self’s relatedness to family, friends and partner. European Journal of Personality, 20, 525-547. doi:10.1002/per.599

[36]   Westius, A., Andersson, L. and Kallenberg, K. (2009) View of life in persons with dementia. Dementia, 8, 481499. doi:10.1177/1471301209350287

[37]   Westius, A., Kallenberg, K. and Norberg, A. (2010) Views of life and sense of identity in people with Alzheimer’s disease. Ageing and Society, 30, 1257-1278. doi:10.1017/S0144686X10000309

[38]   Kitwood, T. (1998) Toward a theory of dementia care: Ethics and interaction. The Journal of Clinical Ethics, 9, 23-34.

[39]   Flanagan, C. (2003) Trust, identity and civic hope. Applied Developmental Science, 7, 165-171. doi:10.1207/S1532480XADS0703_7

[40]   Andersson, M. (1994) Integrity as a concept and as a principle in health care ethics, (Swedish). Ph.D. Thesis, ?bo Academi University, ?bo.

[41]   Cahill, S., Macijauskiene, J., Nyg?rd, A.M., Faulkner, J.P. and Hagen, I. (2007) Technology in dementia care. Technology and Disability, 19, 55-60.

[42]   Cahill, S., Begley, E., Faulkner, J. and Hagen, I. (2007) “It gives me a sense of independence”—Findings from Ireland on the use and usefulness of assistive technology for people with dementia. Technology and Disability, 19, 133-142.

[43]   Fung, A.W.T., Lam, L.C.W. and Lui, V.W.C. (2010) Could hypothetical scenarios enhance understanding on decision for life-sustaining treatment in non-demented Chinese older persons? Aging and Mental Health, 14, 994999. doi:10.1080/13607863.2010.501065

[44]   Patton, M.Q. (2002) Qualitative evaluation and research methods. 3rd Edition, Sage, Newsbury Park.