My, your and our needs for safety and security: relatives' reflections on using information and communication technology in dementia care.

AIM The present paper reports on a study aimed at describing relatives' reflections on different kinds of information and communication technology (ICT) devices that are used or can be used in the daily care of persons with dementia. BACKGROUND Many persons with dementia continue living in their own homes, which requires the support of their relatives. One way to meet the needs of relatives and persons with dementia is to use ICT. METHODS An interview study was conducted in Sweden (2007-2008) with a purposive sample of 14 spouses of a person with dementia. Qualitative content analysis was used to identify categories and themes in the data. FINDINGS Relatives' reflections on the use of ICT were described as ICT - a support in daily life, ICT - internal and external conditions and ICT - the decision to use or not use. Based on these categories, a theme was revealed: shifting between different perspectives: my, your and our needs for safety and security. CONCLUSION Relatives struggle to create a situation of safety and security in daily life for themselves and the persons with dementia. ICT devices with the right functionality and used at the right time are regarded as useful in solving everyday problems. In the decision to use or not use ICT, the opportunity to create a safe and secure environment overshadows potential ethical problems. Providing early information about ICT to persons with dementia and their relatives could facilitate joint decision-making regarding use of ICT.

[1]  H O Dickinson,et al.  Effectiveness and acceptability of non‐pharmacological interventions to reduce wandering in dementia: a systematic review , 2007, International journal of geriatric psychiatry.

[2]  R. Allegri,et al.  Cognitive, functional and behavioral factors associated with the burden of caring for geriatric patients with cognitive impairment or depression: evidence from a South American sample , 2009, International journal of geriatric psychiatry.

[3]  P. Tiraboschi,et al.  Ethical questions in the treatment of subjects with dementia. Part I. Respecting autonomy: awareness, competence and behavioural disorders , 2007, Neurological Sciences.

[4]  O. Almeida,et al.  A systematic review of the association between the Behavioral and Psychological Symptoms of Dementia and burden of care , 2004, International Psychogeriatrics.

[5]  B. Lundman,et al.  Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. , 2004, Nurse education today.

[6]  J. Georges,et al.  Alzheimer's disease in real life – the dementia carer's survey , 2008, International journal of geriatric psychiatry.

[7]  F. Miskelly.  A novel system of electronic tagging in patients with dementia and wandering. , 2004, Age and ageing.

[8]  T Hope,et al.  Getting Lost in Dementia: A Longitudinal Study of a Behavioral Symptom , 1998, International Psychogeriatrics.

[9]  Vincent Rialle,et al.  What Do Family Caregivers of Alzheimer’s Disease Patients Desire in Smart Home Technologies? , 2009, Methods of Information in Medicine.

[10]  J. Bond,et al.  A systematic literature review of the effectiveness of non-pharmacological interventions to prevent wandering in dementia and evaluation of the ethical implications and acceptability of their use. , 2006, Health technology assessment.

[11]  Lennart Magnusson,et al.  A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway. , 2007, Health & social care in the community.

[12]  Shelby D Reed,et al.  A Multinational Review of Recent Trends and Reports in Dementia Caregiver Burden , 2004, Alzheimer disease and associated disorders.

[13]  F. Timmins.  Nursing Research Generating and Assessing Evidence for Nursing Practice , 2013 .

[14]  F. Miskelly,et al.  Assistive technology in elderly care. , 2001, Age and ageing.

[15]  Kristiina Saarikalle,et al.  Enabling Technologies for People with Dementia , 2004 .

[16]  M. Soede,et al.  The use of technical devices to support outdoor mobility of dementia patients , 2007 .

[17]  A. Wimo,et al.  Time spent on informal and formal care giving for persons with dementia in Sweden. , 2002, Health policy.

[18]  E. Papastavrou,et al.  Caring for a relative with dementia: family caregiver burden. , 2007, Journal of advanced nursing.

[19]  Birgitta Ljunggren,et al.  Relatives' opinions of IT support, perceptions of irritations and life satisfaction in dementia care , 2006, Journal of telemedicine and telecare.

[20]  P. van Schaik,et al.  The impact of early dementia on outdoor life , 2008 .

[21]  Lennart Magnusson,et al.  A literature review study of Information and Communication Technology as a support for frail older people living at home and their family carers , 2004 .

[22]  B. Elliott,et al.  Family decision-making in advanced dementia: narrative and ethics. , 2009, Scandinavian journal of caring sciences.

[23]  Gail K. Auslander,et al.  Attitudes of Family and Professional Care-Givers towards the Use of GPS for Tracking Patients with Dementia: An Exploratory Study , 2009 .

[24]  Olli Lagerspetz,et al.  The Ethical Demand , 1998 .

[25]  Ania Willman,et al.  Support for family carers who care for an elderly person at home - a systematic literature review. , 2004, Scandinavian journal of caring sciences.

[26]  Inger Hagen,et al.  Technology in dementia care , 2007 .

[27]  V Rialle,et al.  Electronic tracking system and wandering in Alzheimer's disease: a case study. , 2009, Annals of physical and rehabilitation medicine.

[28]  P. Olivier,et al.  Keeping In Touch Everyday (KITE) project: developing assistive technologies with people with dementia and their carers to promote independence , 2009, International Psychogeriatrics.

[29]  C. Nugent,et al.  Review of ICT-based services for identified unmet needs in people with dementia , 2007, Ageing Research Reviews.

[30]  Roger Orpwood,et al.  The installation and support of internationally distributed equipment for people with dementia , 2004, IEEE Transactions on Information Technology in Biomedicine.

[31]  J. Hughes,et al.  Dementia and ethics: the views of informal carers. , 2002, Journal of the Royal Society of Medicine.

[32]  A. Hassiotis,et al.  Big brother is watching you--the ethical implications of electronic surveillance measures in the elderly with dementia and in adults with learning difficulties , 2003, Aging & mental health.