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

  • Emma Svanberg (a1), Aimee Spector (a2) and Joshua Stott (a2)

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.

Corresponding author
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:
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International Psychogeriatrics
  • ISSN: 1041-6102
  • EISSN: 1741-203X
  • URL: /core/journals/international-psychogeriatrics
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