Early-Onset Dementia: The Needs of Younger People with Dementia in Ireland

Trutz Haase (August 2005)

The Action Plan for Dementia (O'Shea and O’Reilly, 1999) provides a blueprint for the development of policies and services in the dementia field in Ireland. However, little is known about the specific issues confronting people with early-onset dementia and there are no special programmes for people in this category. The reality is one of choosing from a range of services that were originally set up with other needs or age groups in mind. The Action Plan recommends ‘that particular attention should be paid to the needs of people with early-onset dementia with appropriate care packages drawn up to reflect the special circumstances of people in this group and their caregivers’ (ibid). This study was initiated by the Alzheimer Society of Ireland in an attempt to contribute to the discussion about how this recommendation might best be implemented.

Aims of the Analysis
The overall aim of the study is to carry out a needs analysis of people with early-onset dementia in Ireland.

The Terms of Reference outline the following objectives:

• To present a statistical analysis of persons with early-onset dementia, in particular a demographic profile including age, age of onset and diagnosis, gender, socio-economic and family status.
• To provide an insight into and understanding of the day-to-day lives of persons with earlyonset dementia and their caregivers.
• To produce a profile of the services used by those with early-onset dementia.
• To evaluate current policies and available services from a number of stakeholder perspectives.
• To examine the service, economic, social, emotional and support needs of the target group (including caregivers).
• To examine and to present good practice models in other comparable jurisdictions and to identify the lessons for policy and service planning in Ireland.
• To offer a set of recommendations for the future development of policies and services for the target group.