Telecare and Dementia
Dementia has been defined as ‘…an acquired and persistent impairment of intellectual faculties, affecting several cognitive domains, that is sufficiently severe to impair competence in daily living, occupation or social interaction’ (Grabowski & Damasio, 1997). It is estimated that approximately 42,000 people in Ireland are likely to have dementia (Cahill, O’Shea & Pierce, 2012). There are an estimated 50,000 carers in Ireland looking after someone with one of six specified symptoms of dementia (O’Shea, 2000; O’Shea, 2007).
Current health and social policy in Ireland is to provide support so that people with dementia can live in their own homes for as long as possible (Jones, 2004) and many people with dementia want to live at home and manage daily tasks themselves. Family carers are essential in facilitating someone with dementia to stay in their own home. In this context, the aim of telecare is to support people with dementia and their family carers in living at home, safely and securely, for as long as possible.
Telecare involves the installation of sensors in the home in order to monitor and detect risk situations with a view to facilitating the independence and safety of the person with dementia, as well as providing reassurance for the informal carer. The sensors are linked to a monitoring centre that alerts the relevant parties (for example, informal carers or emergency services) when a risk situation is detected, who then make the appropriate response (for example call to the house to check on the person). Sensors may include those that monitor environmental risks (such as fire or flooding) as well as for movement and activity detection (for example, leaving the house at inappropriate times, or relevant patterns of movement/activity within the home). In some cases, alerts may be sent directly to the carer via a pager or as an SMS to a mobile phone.
The INDEPENDENT Project in Ireland
The INDEPENDENT project in Ireland consisted of the collaboration of the Alzheimer Society of Ireland (ASI), a not-for-profit organization providing services for people with dementia and their family carers, and Tunstall Emergency Response (TER), a commercial telecare provider organization. Before the INDEPENDENT project, communication between these two organizations was restricted to occasional provision by TER of paper reports on telecare events to ASI Service Managers and Care Co-ordinators. The INDEPENDENT project enabled close-to-real-time provision of client-related information on patterns of telecare events. Figure 1 summarizes the service delivery process in the INDEPENDENT project in Ireland. Clients of the ASI receive regular home support by a care assistant employed by the ASI on the basis of a personalized care plan overseen by an ASI Care Co-ordinator. They also received a core telecare package consisting of a base unit connected to the landline phone, a smoke detector, a carbon monoxide sensor, a property exit sensor, a flood detector, bath and sink magiplugs (a magiplug is a plug that opens when the water over it reaches a certain level) and a temperature extremes sensor. Additional devices could be added to this core package if necessary. The monitoring and management of responses to alerts triggered by the telecare system was provided by TER.
Figure 1. Illustration of the localized pilot implementation in Dublin
The INDEPENDENT infrastructure enabled TER call centre staff to document all the information and actions associated with an incoming call in a joint client database. ASI Care Co-ordinators could access the joint database via a login to a dedicated server (referred to as a web portal in the rest of this chapter), providing patterns of alerts and events over time. This information was used to review and update personal care plans in response to changing client needs. The information was also used as a new source of evidence when advising family members about the proactive management of significant risky events (‘red flag’ events), such as the person with dementia leaving the home at inappropriate times.