Living at risk: The sibling's perspective of early-onset alzheimer's disease

Journal of Genetic Counseling

Volumn 18, Issue 3, 2009, Pages 239-251

  Wain, Karen E ^a,c   Uhlmann, Wendy R ^b   Heidebrink, Judith ^a   Roberts, J Scott ^b  

^a UNIVERSITY OF MICHIGAN MEDICAL SCHOOL   (United States)

^b UNIVERSITY OF MICHIGAN   (United States)

^c MAYO CLINIC   (United States)

Author keywords

Decision making; Early onset Alzheimer's disease; Genetics; Lived experience; Risk; Sibling; Worry

Indexed keywords

ADULT; AGED; ALZHEIMER DISEASE; ARTICLE; CLINICAL ARTICLE; DECISION MAKING; DEMOGRAPHY; EARLY ONSET ALZHEIMER DISEASE; EDUCATIONAL STATUS; FAMILY HISTORY; FEMALE; GENETIC COUNSELING; HEALTH CARE; HEALTH CARE PERSONNEL; HUMAN; INFORMED CONSENT; INTERVIEW; KNOWLEDGE; MALE; MARRIAGE; MEMORY; MENTAL HEALTH; PERCEPTION; QUESTIONNAIRE; RISK FACTOR; SIBLING; STATISTICAL ANALYSIS;

ADULT; AGED; AGED, 80 AND OVER; ALZHEIMER DISEASE; CAREGIVERS; DEMOGRAPHY; FEMALE; GENETIC PREDISPOSITION TO DISEASE; HUMANS; MALE; MIDDLE AGED; PERCEPTION; QUESTIONNAIRES; RISK FACTORS; SIBLINGS;

EID: 67349275659     PISSN: 10597700     EISSN: 15733599     Source Type: Journal    
DOI: 10.1007/s10897-008-9206-8     Document Type: Article

References (30)

1. Alzheimer's Association. (2006). Early-onset dementia: A national challenge, a future crisis. Accessible at www.alz.org ; search "early-onset".
2. Alzheimer's Association. (2007). Alzheimer's disease facts and figures. Accessible at www.alz.org ; search "facts and figures".
3. D. L. Beebe-Dimmer D. P. Wood Jr S. B. Gruber D. M. Chilson K. A. Zuhlke G. B. Claeys 2004 Risk perception and concern among brothers of men with prostate carcinoma Cancer 100 1537 1544 (Pubitemid 38366859)
4. L. Bertram R. E. Tanzi 2004 The current status of Alzheimer's disease genetics: what do we tell the patients? Pharmacological Research 50 385 396 (Pubitemid 39078530)
5. T. D. Bird 2005 Genetic factors in Alzheimer's disease The New England Journal of Medicine 352 862 864 (Pubitemid 40300294)
6. K. L. Brickell E. J. Steinbart M. Rumbaugh H. Payami G. D. Schellenberg V. Van Deerlin 2006 Early-onset Alzheimer disease in families with late-onset Alzheimer disease Archives of Neurology 63 1307 1311
7. M. Broadstock S. Michie T. Marteau 2000 Psychological consequences of predictive genetic testing: a systematic review European Journal of Human Genetics 8 731 738
8. M. Decruynaere G. Evers-Kiebooms A. Boogaerts J. J. Cassiman T. Cloostermans K. Demyttenaere 1999 Psychological functioning before predictive testing for Huntington's disease: the role of the parental disease, risk perception, and subjective proximity of the disease Journal of Medical Genetics 36 897 905 (Pubitemid 30003846)
9. M. Decruyenaere G. Evers-Kiebooms M. Weldenhuysen L. Denayer E. Claes 2000 Cognitive representations of breast cancer, emotional distress, and preventive health behavior: a theoretical perspective Psycho-Oncology 9 528 536 (Pubitemid 32010926)
10. H. Etchegary 2006 Discovering the family history of Huntington disease (HD) Journal of Genetic Counseling 2 105 117 (Pubitemid 43876104)
11. J. H. Fanos 1999 "My crooked vision": the well sib views Ataxia-Telangiectasia American Journal of Medical Genetics 87 420 425 (Pubitemid 30007726)
12. J. H. Fanos J. P. Johnson 1995 Barriers to carrier testing for adult Cystic Fibrosis sibs: the importance of not knowing American Journal of Medical Genetics 59 85 91
13. J. H. Fanos R. A. Gatti 1999 A mark on the arm: myths of carrier status in sibs of individuals with Ataxia-Telangiectasia American Journal of Medical Genetics 86 338 346 (Pubitemid 29461496)
14. J. H. Fanos J. Davis J. M. Puck 2001 Sib understanding of genetics and attitudes toward carrier testing for X-Linked severe combined immunodeficiency American Journal of Medical Genetics 98 46 56 (Pubitemid 32041850)
15. L. A. Farrer L. A. Cupples J. L. Haines B. Hyman W. A. Kukull R. Mayeux 1997 Effects of age, sex, and ethnicity on the association between Apolipoprotien E Genotype and Alzheimer's disease: a meta-analysis Journal of the American Medical Association 278 1349 1356 (Pubitemid 27449696)
16. L. Gershenson Hodgson S. J. Cutler 2003 Looking for signs of Alzheimer's disease International Journal of Aging & Human Development 56 323 343 (Pubitemid 38057326)
17. R. C. Green L. A. Cupples R. Go K. S. Benke T. Edeki P. A. Griffith 2002 Risk of dementia among white and African American relatives of patients with Alzheimer disease Journal of the American Medical Association 287 329 336 (Pubitemid 34251966)
18. H. Heath S. Cowley 2004 Developing a grounded theory approach: a comparison of Glaser and Strauss International Journal of Nursing Studies 41 141 150 (Pubitemid 38058777)
19. H. C. Hendrie M. S. Albert M. A. Butters S. Gao D. S. Knopman L. J. Launer 2006 The NIH cognitive and emotional health project: report of the critical evaluation study committee Alzheimer's & Dementia 2 12 32
20. N. T. Lautenschlager L. A. Cupples V. S. Rao S. A. Auerbach R. Becker J. Burke 1996 Risk of dementia among relatives of Alzheimer's disease patients in the MIRAGE study: what is in store for the oldest old? Neurology 46 641 650 (Pubitemid 26099626)
21. M. McAllister K. Payne S. Nicholls R. MacLeod D. Donnai L. M. Davies 2007 Improving service evaluation in clinical genetics: identifying effects of genetic diseases on individuals and families Journal of Genetic Counseling 16 71 83 (Pubitemid 46355047)
22. M. Pinquart S. Sorensen 2006 Gender differences in caregiver stressors, social resources, and health: an updated meta-analysis Journal of Gerontology 61B 33 45 (Pubitemid 43068536)
23. J. S. Roberts 2000 Anticipating response to predictive genetic testing for Alzheimer's disease: a survey of first-degree relatives The Gerontologist 40 43 52 (Pubitemid 30170189)
24. J. S. Roberts C. M. Connell 2000 Illness representations among first-degree relatives of people with Alzheimer disease Alzheimer Disease and Associated Disorders 14 129 136
25. J. S. Roberts M. Barber T. M. Brown L. A. Cupples L. A. Farrer S. A. LaRusse 2004 Who seeks genetic susceptibility testing for Alzheimer's disease? findings from a multisite, randomized clinical trial Genetics in Medicine 6 197 203 (Pubitemid 39005859)
26. S. Shiloh 2006 Illness representations, self-regulation, and genetic counseling: a theoretical review Journal of Genetic Counseling 15 325 337 (Pubitemid 44563995)
27. S. Sivell G. Elwyn C. L. Gaff A. J. Clarke R. Iredale C. Shaw 2008 How risk is perceived, constructed and interpreted by clients in clinical genetics, and the effects on decision making: systematic review Journal of Genetic Counseling 17 30 63
28. J. A. Suhr J. H. Kinkela 2007 Perceived threat of Alzheimer disease (AD): the role of personal experience with AD Alzheimer Disease and Associated Disorders 21 225 231 (Pubitemid 47367975)
29. F. M. Walter J. Emery D. Braithwaite T. M. Marteau 2004 Lay understanding of familial risk of common chronic diseases: a systematic review and synthesis of qualitative research Annals of Family Medicine 2 583 594 (Pubitemid 39643434)
30. C. D. Zick C. J. Mathews J. S. Roberts R. Cook-Deegan R. J. Pokorski R. C. Green 2005 Genetic testing for Alzheimer's disease and its impact on insurance purchasing behavior Health Affairs 24 483 490 (Pubitemid 40528968)