PMID- 31464187 OWN - NLM STAT- PubMed-not-MEDLINE LR - 20201001 IS - 1929-0748 (Print) IS - 1929-0748 (Electronic) IS - 1929-0748 (Linking) VI - 8 IP - 8 DP - 2019 Aug 28 TI - Development of a Caregivers' Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study. PG - 13280 LID - 10.2196/13280 [doi] LID - e13280 AB - BACKGROUND: Dementia disease is a chronic condition that leads a person with dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their activities of daily living (ADL). It is believed nowadays that PwDs 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 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 health care providers as a method for dementia home care management. OBJECTIVE: This study aims to describe the development and implementation protocol of a CH platform system to support informal caregivers of PwDs 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 into 2 groups: the intervention group, which will receive the CH technology package at home, and the usual care group, which will not have any CH technology at all. Dyads will be followed up for 12 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 6 months (months 3 to 9 of the yearly follow-up). Further comprehensive assessments related to the caregiver's and PwD's emotional and physical well-being will be performed at the initial assessment and at 3, 6, 9, and 12 months using international and standardized validated questionnaires and semistructured individual interviews. RESULTS: This 3-year funded study (2016-2019) is currently in its implementation phase and is expected to finish by December 2019. We believe that CH can potentially change the PwD current care model, facilitating a proactive and preventive model, utilizing self-management-based strategies, and enhancing caregivers' involvement in the management of health care at home for PwDs. CONCLUSIONS: We foresee that our CH platform will provide knowledge and promote autonomy for the caregivers, which may empower them into greater control of the care for PwDs, and with it, improve the quality of life and well-being for the person they are caring for and for themselves through a physical and cognitive decline predictive model. We also believe that facilitating information sharing between all the PwDs' care stakeholders may enable a stronger relationship between them, facilitate a more coordinated care plan, and increase the feelings of empowerment in the informal caregivers. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13280. CI - (c)Estefania Guisado-Fernandez, Brian Caulfield, Paula Alexandra Silva, Laura Mackey, David Singleton, Daniel Leahy, Sebastien Dossot, Dermot Power, Diarmuid O'Shea, Catherine Blake. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 28.08.2019. FAU - Guisado-Fernandez, Estefania AU - Guisado-Fernandez E AUID- ORCID: 0000-0003-2437-7200 AD - Insight Centre for Data Analytics, School of Public Health, Physiotherapy and Sports Science, University College Dublin, Dublin, Ireland. FAU - Caulfield, Brian AU - Caulfield B AUID- ORCID: 0000-0003-0290-9587 AD - Insight Centre for Data Analytics, School of Public Health, Physiotherapy and Sports Science, University College Dublin, Dublin, Ireland. FAU - Silva, Paula Alexandra AU - Silva PA AUID- ORCID: 0000-0003-1573-7446 AD - DigiMedia Research Center, Universidade de Aveiro, Aveiro, Portugal. FAU - Mackey, Laura AU - Mackey L AUID- ORCID: 0000-0003-4261-0563 AD - School of Public Health, Physiotherapy and Sports Science, University College Dublin, Dublin, Ireland. FAU - Singleton, David AU - Singleton D AUID- ORCID: 0000-0003-0616-3954 AD - Applied Research for Connected Health, University College Dublin, Dublin, Ireland. FAU - Leahy, Daniel AU - Leahy D AUID- ORCID: 0000-0002-4882-6704 AD - Applied Research for Connected Health, University College Dublin, Dublin, Ireland. FAU - Dossot, Sebastien AU - Dossot S AUID- ORCID: 0000-0002-3972-3105 AD - Applied Research for Connected Health, University College Dublin, Dublin, Ireland. FAU - Power, Dermot AU - Power D AUID- ORCID: 0000-0003-1040-9515 AD - Medicine for the Older Person, Mater University Hospital, Dublin, Ireland. FAU - O'Shea, Diarmuid AU - O'Shea D AUID- ORCID: 0000-0002-8313-5423 AD - Department of Geriatric Medicine, St. Vincent's University Hospital, Dublin, Ireland. FAU - Blake, Catherine AU - Blake C AUID- ORCID: 0000-0002-0600-629X AD - School of Public Health, Physiotherapy and Sports Science, University College Dublin, Dublin, Ireland. LA - eng PT - Journal Article DEP - 20190828 PL - Canada TA - JMIR Res Protoc JT - JMIR research protocols JID - 101599504 PMC - PMC6786855 OTO - NOTNLM OT - caregivers OT - connected health OT - dementia OT - home care OT - home monitoring COIS- Conflicts of Interest: DS acknowledges change of employment as the product manager for Kinesis while being the information technology support for the CHESS project. EDAT- 2019/08/30 06:00 MHDA- 2019/08/30 06:01 PMCR- 2019/08/28 CRDT- 2019/08/30 06:00 PHST- 2019/01/02 00:00 [received] PHST- 2019/06/04 00:00 [accepted] PHST- 2019/06/04 00:00 [revised] PHST- 2019/08/30 06:00 [entrez] PHST- 2019/08/30 06:00 [pubmed] PHST- 2019/08/30 06:01 [medline] PHST- 2019/08/28 00:00 [pmc-release] AID - v8i8e13280 [pii] AID - 10.2196/13280 [doi] PST - epublish SO - JMIR Res Protoc. 2019 Aug 28;8(8):13280. doi: 10.2196/13280.