Supporting Spousal Carers of Persons with Alzheimer's disease
Alzheimer's disease is a common cause of dementia in older adults. Dementia is a constellation of symptoms which can include difficulties with memory, language, judgement, insight and social skills. In Ireland at present, there are 44,000 people living with Alzheimer's disease and this figure is expected to reach 100,000+ by 2036. With an ageing population, there is much concern about what we can do for those living with Alzheimer's disease. The likelihood of developing Alzheimer's disease increases with age, with one in 20 individuals living with Alzheimer's disease over the age of 65, and one in 5 living with it over the age of 80. Most adults with Alzheimer's disease live at home, and it is estimated that family caregivers provide 57% of all informal dementia care, without receiving any compensation. In Ireland today there are approximately 274,000 family carers.
Living in the home, this creates enormous demands on the families of patients to ensure they are well cared for, and in doing so, often the carers themselves can neglect their own wellbeing. Carers may become socially isolated as the role becomes more demanding and their time is consumed with providing care; they may not take breaks for themselves or feel guilty if they do; they may become emotionally and physically exhausted from dealing with the demanding daily routines; they may suffer poor diet, sleep and exercise habits and may regularly feel stressed or anxious. Three quarters of all caregivers report that they find it difficult to cope with their loved one's dementia-related behaviours and a third report feeling completely overwhelmed by the role. The demands placed on family carers are well known and well documented, as are the effects that they may have on the quality of care they can provide. It is clear that supporting caregivers of adults with Alzheimer's disease should be a priority. Support can take the form of social support, providing information about Alzheimers and help available, and making sure that the stress levels of the caregiver are not being ignored.
Within TRIL, we are designing a technology intervention targeted specifically at helping carers deal with these challenges. To help us achieve this, we are employing an inclusive design process in which the carers of persons with Alzheimers, care professionals and relevant support organisation are involved in all stages of the project to help shape the nature of the technology we develop. By consulting with these varied groups, we can hope to better understand many of the situational and contextual factors which are important to support and engineer a solution best suited to supporting spousal carers. This, for example, includes how the technology may be incorporated into carers demanding daily routines and how it may encourage a carer to take breaks, maintain their own wellbeing and discover strategies for coping.
Already within 2011, we have developed a network within the community to support this endeavor. We have consulted with many of the care professionals and organisations central to supporting carers in Ireland today. They have engaged in a number of design workshops with us and helped us move towards a conceptual solution. In addition to this, the needs of carers have been surveyed through several in-situ interviews and this has revealed key insights for the technology. The focus groups with care organisations and interviews with carers inform the technology solution ensuring it is relevant to their needs.
Now, by leveraging the information elicited in these user-centred activities, and building on many of the findings of prior investigations within TRIL, a conceptual research prototype has already been realised. This support tool, known as the Care Companion, is currently being refined for use within the home and will be deployed to ten homes later in 2011. The support tool will provide carers with digital resources to support them in their demanding daily roles. We are excited at the potential for the Care Companion and look forward to reporting on the outcomes of this project later in 2011.
[1] http://carealliance.ie/userfiles/file/CareAlliancePreBudget2011.pdf
