Implementing Policy for Dementia Care in Ireland: The Time for Action is Now

by Professor Eamon O'Shea (2007)
Commissioned by The Alzheimer Society of Ireland.

Introduction
Dementia is a relatively new area of policy focus, despite the expanding number of people worldwide affected by different dementia disorders. Few countries have specific health and social care policies for the condition and where there is a policy it is mostly encompassed in wider generic policies and statements on ageing. In addition, discussions of public policy issues in respect of dementia are relatively rare in the research literature (OECD, 2004). Similarly, the health economics of dementia is in its infancy. This too is surprising, given that dementia is one of the most devastating and costly group of diseases and its impact on the care systems of all countries will increase in the future due to population ageing.

In Ireland, the stated objective of public policy for people with dementia is to encourage and facilitate their continued living in their own homes for as long as is possible and practicable (Report of the Working Party on Services for the Elderly, 1988). The Action Plan for Dementia (APD) (O'Shea and O'Reilly, 1999) reinforced the need for a social model of dementia that is focused on care in the community and on maintaining and developing, what Kitwood, (1997) called, the personhood of the person with dementia. The APD emphasises the need for the development of coordinated, multi-layered and well-resourced services, which are responsive to the individual needs of people with dementia and of those who care for them. The APD also describes a model of best practice for the provision and planning of dementia care in Ireland that seeks to maximise the autonomy and capabilities of people with the disease. Unfortunately, progress has been slow in embracing this person-centred, holistic model of care for people with dementia. The medical model is still dominant.

There is a great ethical challenge in dementia care since the diseases themselves influence the person's capacity to advocate for their own interests. A person-centred approach would facilitate people with dementia having their voices heard both in public awareness work and in policy formulation and implementation. This is now possible due to improvements in the diagnostic process which for many people is happening at an earlier stage in the condition. The involvement of people with dementia in policy and service planning would be a radical shift in the traditional approach to dementia care and would represent a new paradigm; one which places rights and advocacy at the centre of decision-making. This will be a challenge for the future direction of dementia care in all countries, irrespective of how services are organised and financed. The challenge will have to be faced, however, if people with dementia are to play a central role in the planning and delivery of their own care.

The Government's 2001 Health Strategy: Quality and Fairness: A Health System for you (Department of Health and Children, 2001) accepted the general thrust of the APD and committed to its implementation over a seven year period. However, despite some improvements in recent years in enhanced training and education for staff, increased at-home respite care, additional specialised dementia units and more old age psychiatry consultants, progress has been slow in implementing the Action Plan. A reluctance to commit significant additional resources to dementia care is at the heart of the problem. The original APD was modest in terms of its demands on the Exchequer, requiring less than 20 million per year over a three year period for its full implementation. This is equivalent to an annual grant of just over 500 per person with dementia. When presented in this way, the cost is minimal relative to the potential gains to be had, but not everyone appreciates the returns from investing in dementia care. Even caregivers and members of the general public do not have sufficient information about the benefits of treatment and care (Bond et al, 2005).

This paper makes the case for a significant public investment in dementia care as part of a new strategy of making dementia a national health priority.