JMIR Publications

ABSTRACT

Background:

Dementia disease is a chronic condition that leads the Person with Dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their Activities of Daily Living (ADLs). It is believed nowadays that PwD and their informal caregivers can have a better life when provided with the appropriate services and support. Connected Health (CH) is a new technology-enabled model of chronic care delivery where are the stakeholders are ‘connected’ through a health portal, ensuring continuity and efficient flow of information. CH has demonstrated promising results regarding supporting informal home care and aging in place, and it has been increasingly considered by researchers and healthcare providers as a method for Dementia home care management.

Objective:

This paper describes the development and implementation protocol of a CH online platform system to support informal caregivers of PwD at home.

Methods:

This is a longitudinal observational mixed methods study where quantitative and qualitative data will be combined for determining the utility of the CH platform for Dementia home care. Dyads, consisting of a PwD and their informal caregiver living in the community, will be divided in two groups: the ‘intervention group’, that will receive the CH technology package at home, and the ‘usual care’ group, that will not have any CH technology at all. Dyads will be followed up for twelve months during which they will continue with their traditional care plan but in addition, the intervention group will receive the CH package for their use at home during six months (months three to nine of the year follow up). Further comprehensive assessments related to the caregiver and PwD emotional and physical wellbeing will be performed at the initial assessment, 3-6-9 and 12 months, using international and standardized validated questionnaires and semi-structured individual interviews.

Results:

This is three years funded study (2016-2019) is currently in its implementation phase and expected to finish by December 2019. Preliminary data results will be submitted for publication early 2019. We believe that CH can potentially change PwD current care model, facilitating a proactive and preventive model, utilizing self-management based strategies, and enhancing caregivers’ involvement in the management of PwD’s healthcare at home.

Conclusions:

We want to show that CH can offer outstanding help for traditional home care, promoting the PwD and caregiver well-being and reducing the amount of burden and stress experienced by the informal caregiver. We support the idea that a better understanding and more involvement in Dementia home care can improve the informal caregivers' caring experience along with their quality of life and wellbeing.