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Nobody asked me how I felt: experiences of adult children of persons with young-onset dementia

Published online by Cambridge University Press:  15 January 2014

Maria Lage Barca ,
Kirsten Thorsen ,
Knut Engedal ,
Per Kristian Haugen  and
Aud Johannessen
Maria Lage Barca*
Affiliation:
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway
Kirsten Thorsen
Affiliation:
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway Faculty of Health Science, Buskerud University College, Drammen, Norway
Knut Engedal
Affiliation:
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway
Per Kristian Haugen
Affiliation:
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway
Aud Johannessen
Affiliation:
Ageing and Health, Norwegian Centre for Research, Education and Service Development, Vestfold Hospital Trust, Tønsberg, Norway
*
Correspondence should be addressed to: Maria Lage Barca, Ageing and Health, Norwegian Centre for Research, Education and Service, Vestfold Hospital Trust, Postbox 2136 3103, Tønsberg, Norway. Phone: +47-4684-4366. Email: maria.barca@aldringoghelse.no.
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Abstract

Background:

There are few studies of young persons (<65 years old) with dementia, and the situation of their children has been a neglected research field. The aim is explore how adult children of a parent with young-onset dementia have experienced the development of their parents’ dementia and what needs they have for assistance.

Method:

Qualitative interviews with 14 informants (aged 20–37 years; 12 daughters, 2 sons) during 2011 were conducted and analyzed thematically.

Results:

The informants experienced great burdens and felt neglected during the development of their parents’ dementia, both by their family and by health and social services. They emphasized a need to be seen as individuals, with their experiences, feelings, and personal needs for assistance. The stresses experienced during the development of parental dementia seemed to increase conflicts in the family. There were variations in reactions between children, depending on age, gender, family structure and relationships, responsibilities, personal relations with both parents, and whether there was an adult primary caregiver. The length of time living together with the parent with dementia seemed to increase the stress and burden to the children. They expressed a great need for information and support.

Conclusion:

The findings strengthen the notion of the need for family-oriented support, combined with person-centered care for the children according to their needs. In addition, group meetings and contact with other young people in the same stage of life could be of interest for some.

Keywords

Experiencesneedschildrenparents with young-onset dementiahealth promotionhealth and social servicessupport
Type
Review Article
Information
International Psychogeriatrics , Volume 26 , Special Issue 12: young onset dementia , December 2014 , pp. 1935 - 1944
Copyright
Copyright © International Psychogeriatric Association 2014 

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