Linked Life Data

19132519

Source:http://linkedlifedata.com/resource/pubmed/id/19132519

Statements in which the resource exists as a subject.
PredicateObject
rdf:type
lifeskim:mentions
pubmed:issue
3
pubmed:dateCreated
2009-5-14
pubmed:abstractText
Early-onset Alzheimer's disease (EOAD) is an increasingly diagnosed condition and is associated with genetic risk factors. This is one of the first studies exploring the lived experience of siblings of individuals with EOAD. We used structured questionnaires and semi-structured interviews to assess a broad range of siblings' experiences with and beliefs about EOAD, including knowledge, perceptions of personal risk, level of worry, and effects on life decisions. Participants (n = 24) were predominantly female (62.5%) and middle-aged (mean = 56.8 years; range 37-83). When asked about risk factors, genetics was cited most frequently (62.5%). Several potential means of reducing AD risk were endorsed, with 54% reporting engagement in behaviors for this purpose (e.g., keeping mentally active). Participants ranged widely in their perceived personal risk of AD (range: 0-100; mean = 35.6%), with higher perceived risk associated with worry about AD (p < 0.01). Understanding siblings' experiences with EOAD can inform how genetic counselors and healthcare professionals work with this population to facilitate risk communication and decision-making about testing and healthcare.
pubmed:grant
pubmed:language
eng
pubmed:journal
pubmed:citationSubset
IM
pubmed:status
MEDLINE
pubmed:month
Jun
pubmed:issn
1573-3599
pubmed:author
pubmed:issnType
Electronic
pubmed:volume
18
pubmed:owner
NLM
pubmed:authorsComplete
Y
pubmed:pagination
239-51
pubmed:meshHeading
pubmed:year
2009
pubmed:articleTitle
Living at risk: the sibling's perspective of early-onset Alzheimer's disease.
pubmed:affiliation
Department of Human Genetics, University of Michigan, Ann Arbor, MI, USA. wain.karen@mayo.edu
pubmed:publicationType
Journal Article, Research Support, Non-U.S. Gov't, Research Support, N.I.H., Extramural