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1997: Early onset dementia

Completed projects


The term “early onset dementia” is used to describe dementia affecting people under 65 years of age. Most are in their 50s and early 60s, but some are even younger. There is a huge difference between older people with dementia and their younger counterparts. For example, whereas older people with dementia are approaching or have passed retirement, younger sufferers face other kinds of problems, such as giving up their jobs and family responsibilities. Moreover, early onset dementia not only affects the younger sufferers themselves but in many cases their spouses and children too. We felt that it was important to look at some of the main problems encountered by people with early onset dementia and their carers/families.

Funding and duration

As a partner in a project organised by EACH (European Alzheimer Clearing House), Alzheimer Europe was responsible for writing a report in 1997 about younger people with dementia. This was funded by the European Commission under the programme "Actions in favour of people suffering from neurodegenerative diseases, more particularly Alzheimer type (DAT) and related disorders and their (informal) carers".


The main goals were to examine the problems experienced by younger people with dementia and their carers/families.


Information was collected from our member associations and experts in this domain and a meeting was held in 1997 in Brussels to discuss relevant issues. A report was then drafted, sent to member associations for comment, amended and completed.


The report briefly describes some of the main forms of dementia which affect younger people and examines the kind of problems encountered by younger people with dementia and their families/carers linked to employment, finances, legal issues, service provision, daily life, personal relationships, the impact on carers and the effects on children.



Last Updated: Wednesday 25 April 2012