International Psychogeriatrics

Review Article

The impact of young onset dementia on the family: a literature review

Emma Svanberga1 c1, Aimee Spectora2 and Joshua Stotta2

a1 Primary Care Psychology and Counselling Service, Tower Hamlets, London, U.K.

a2 Research Department of Clinical, Educational and Health Psychology, University College London, U.K.


Background: The needs of younger people with dementia have become increasingly recognized in service development. However, little is known about the impact of a diagnosis of young onset dementia on people aged under 65 years and their families. This paper reviews the literature on the experiences of younger people with dementia and their families in the U.K., and outcomes for carers.

Methods: Twenty-six studies, encompassing a variety of themes concerning this population, were reviewed following a systematic literature search.

Results: Results are divided into the impact on the individual and the impact on the family, specifically carer outcomes and the impact on children.

Conclusions: The studies reviewed reveal a number of negative outcomes for the individual and carers, and highlight the need for further research.

(Received November 30 2009)

(Revised March 01 2010)

(Revised June 01 2010)

(Accepted June 03 2010)

(Online publication August 25 2010)


c1 Correspondence should be addressed to: Dr Emma Svanberg, Primary Care Psychology and Counselling Service, Steels Lane Health Centre, 384–398 Commercial Road, London E1 0LR, U.K. Phone: +44 2077913660. Email: