The TECH@HOME study, a technological intervention to reduce caregiver burden for informal caregivers of people with dementia: study protocol for a randomized controlled trial

Abstract

BackgroundIt is estimated that global dementia rates will more than triple by 2050 and result in a staggering economic burden on families and societies. Dementia carries significant physical, psychological and social challenges for individuals and caregivers. Informal caregiving is common and increasing as more people with dementia are being cared for at home instead of in nursing homes. Caregiver burden is associated with lower perceived health, lower social coherence, and increased risk of morbidity and mortality. The aim of this trial is to evaluate the effects of information and communication technology (ICT) on caregiver burden among informal caregivers of people with dementia by reducing the need for supervision.Methods/designThis randomized controlled trial aims to recruit 320 dyads composed of people with dementia living in community settings and their primary informal caregivers. In the intervention group, people with dementia will have a home monitoring kit installed in their home while dyads in the control group will receive usual care. The ICT kit includes home-leaving sensors, smoke and water leak sensors, bed sensors, and automatic lights that monitor the individual’s behavior. Alerts (text message and/or phone call) will be sent to the caregiver if anything unusual occurs. All study dyads will receive three home visits by project administrators who have received project-specific training in order to harmonize data collection. Home visits will take place at enrollment and 3 and 12 months following installation of the ICT kit. At every home visit, a standardized questionnaire will be administered to all dyads to assess their health, quality of life and resource utilization. The primary outcome of this trial is the amount of informal care support provided by primary informal caregivers to people with dementia.DiscussionThis is the first randomized controlled trial exploring the implementation of ICT for people with dementia in a large sample in Sweden and one of the first at the international level. Results hold the potential to inform regional and national policy-makers in Sweden and beyond about the cost-effectiveness of ICT and its impact on caregiver burden.Trial RegistrationClinicalTrials.gov, NCT02733939. Registered on 10 March 2016.Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-017-1796-8) contains supplementary material, which is available to authorized users.

Potential for Digital Monitoring to Enhance Wellbeing at Home for People with Mild Dementia and Their Family Carers

“…The reported reduction in burden for the FC group (18 of 30) was noted and important to recognize in relation to both increases in PwD frailty and decline in PwD wellbeing. This supports the suggestion that remote monitoring technology has the potential to reduce the stress and burden felt by FC [11], perhaps due to the behavioral feedback and regular patterns [12], which gives families 'peace of mind' [18,35]. While FC mostly want to support PwD to maintain their independence and 'age in place' for as long as possible [1,17], many FC have a range of other social commitments and caring responsibilities that are competing for their attention.…”

“…While FC mostly want to support PwD to maintain their independence and 'age in place' for as long as possible [1,17], many FC have a range of other social commitments and caring responsibilities that are competing for their attention. Remote monitoring can enable FC to have a greater understanding of their relative's daily routine [11,36], which can assist in planning and reduce conflicting demands; this is a direct product of being able to predict risk and assume routine behaviors. It may also provide useful insights on behaviors they were not aware of [37], for example, where early rising or night time routines diverted from a regular pattern and an intervention can be planned [6].…”

“…In primary care, for those caring at home, the level of burden was lower than reported in other settings [9]. The focus on maintaining independence and detecting decline was important to both parties [10,11] with an important distinction between burden and wellbeing [12]. Burden appears to be associated with any behavioral changes in the PwD and the hours when care is needed [12], and overall psychological wellbeing of the carer is significantly associated with social support and coping mechanisms [13].…”

“…Caregiving can feel stressful [9][10][11][12] with variation in wellbeing and levels of burden depending on the duration and the severity of the dementia and the consequent need of the PwD for support [4]. In primary care, for those caring at home, the level of burden was lower than reported in other settings [9].…”

“…This may also support PwD to live independently at home [15]. Smart technology is seen as a cost-effective means of maintaining the wellbeing of the PwD [5,11,[16][17][18] demonstrating how most older adults recognize the convenience and support for daily activities. Barriers to digital technology usage and home monitoring are well documented too [5,[17][18][19][20][21][22][23], with issues of privacy invasion being the greatest concern.…”