Challenges associated with transition to caregiver role following diagnostic disclosure of Alzheimer disease: A descriptive study

International Journal of Nursing Studies

Volumn 48, Issue 9, 2011, Pages 1109-1119

  Ducharme, Francine ^a   Levesque Louise L ^a   Lachance, Lise ^b   Kergoat, Marie Jeanne ^a   Coulombe, Renée ^a  

^a CENTRE DE RECHERCHE   (Canada)

^b UNIVERSITÉ DU QUÉBEC À CHICOUTIMI   (Canada)

Author keywords

Challenges; Dementia; Descriptive study; Early career; Family caregiver; Role transition

Indexed keywords

AGED; ALZHEIMER DISEASE; ARTICLE; CAREGIVER; FEMALE; HUMAN; INTERPERSONAL COMMUNICATION; MALE; MENTAL STRESS; MIDDLE AGED; NURSING; PSYCHOLOGICAL ASPECT; SELF CONCEPT;

AGED; ALZHEIMER DISEASE; CAREGIVERS; DISCLOSURE; FEMALE; HUMANS; MALE; MIDDLE AGED; SELF EFFICACY; STRESS, PSYCHOLOGICAL;

EID: 80052019660     PISSN: 00207489     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.ijnurstu.2011.02.011     Document Type: Article

References (44)

1. Aneshensel C., Pearlin L., Mullan J., Zarit S., Whitlatch C. Profiles in Caregiving: The Unexpected Career 1995, Academic Press, San Diego.
2. Archbold P.G., Stewart B.J., Greenlick M.R., Harvath T. Mutuality and preparedness as predictors of caregiver role strain. Research in Nursing & Health 1990, 13:375-384.
3. Archbold P.G., Stewart B.J., Miller L.L., Harvath T.A., Greenlick M.R., Van Buren L., Kirschling J.M., Valanis B.G., Brody K.K., Schook J.E., Hagan J.M. The PREP system of nursing interventions: a pilot test with families caring for older members. Research in Nursing & Health 1995, 18:3-16.
4. Bamford C., Lamont S., Eccles M., Robinson L., May C., Bond J. Disclosing a diagnosis of dementia: a systematic review. International Journal of Geriatric Psychiatry 2004, 19:151-169.
5. Brodaty H., Thomson C., Thompson C., Fine M. Why caregivers of people with dementia and memory loss don't use services. International Journal of Geriatric Psychiatry 2005, 20:537-546.
6. Carpenter B., Dave J. Disclosing a dementia diagnosis: a review of opinion and practice, and a proposed research agenda. The Gerontologist 2004, 44(2):149-158.
7. Clark P.C., Shields C.G., Aycook D., Wolf S.L., Fapta P.T. Preliminary reliability and validity of a caregiver conflict scale for stroke. Progress in Cardiovascular Nursing Spring 2003, 77-92.
8. Connell C., Boise L., Stuckey J.C., Holmes S.B., Hudson M.L. Attitudes toward the diagnosis and disclosure of dementia among family caregivers and primary care physicians. The Gerontologist 2004, 44(4):500-507.
9. Derksen M., Vernooij-Dassen M., Gillissen F., Kikkert M., Scheltens P. Impact of diagnostic disclosure in dementia patients and carers: qualitative case series analysis. Aging & Mental Health 2006, 10(5):525-531.
10. Ducharme, F., Lévesque, L., Lachance, L., Kergoat, M.-J., Legault, A., Zarit, S.H. " Learning to Become a Family Caregiver": efficacy of an intervention program for caregivers following diagnostic disclosure of dementia in a relative. The Gerontologist, in press, doi:10.1093/geront/gnr014.
11. Ducharme F., Beaudet L., Legault A., Kergoat M.-J., Lévesque L., Caron C. Development of an intervention program for Alzheimer's family caregivers following diagnostic disclosure. Clinical Nursing Research 2009, 18(1):44-67.
12. Ducharme F., Lévesque L., Caron C., Hanson E., Magnusson L., Nolan M., Nolan J. Mise à l'essai d'un outil d'évaluation des besoins de soutien des proches-aidants d'un parent âgé à domicile. Recherche en soins infirmiers no. 2010, 101:67-80.
13. Ducharme F., Lévesque L., Lachance L., Legault A., Préville M. Taking care of myself: efficacy of an intervention program for caregivers of a relative suffering from dementia living in a long-term setting. Dementia: The International Journal of Social Research and Practice 2005, 4(1):23-47.
14. Ducharme F., Lévesque L., Lachance L., Zarit S., Vézina J., Gangbè M., Caron C. Older husbands as caregivers of their wives: a descriptive study of the context of care and relational aspects of care. International Journal of Nursing Studies 2006, 43:567-579.
15. Ducharme F., Lévesque L., Zarit S., Lachance L., Giroux F., Vézina J., Caron C. Changes in caregiving outcomes for older husband caregivers: a one-year longitudinal study. International Journal of Aging and Human Development 2007, 65(1):73-96.
16. Georges J., Gove D. Disclosing a diagnosis: the Alzheimer Europe position. Journal of Dementia Care November/December 2007, 28-30.
17. Gouvernement du Québec Enquête sociale et de santé de 1992-1993 1996, Ministère de la Santé et des Services sociaux, Québec, Canada.
18. Haccoun R.R. Une nouvelle technique de vérification de l'équivalence de mesures psychologiques traduites. Revue québécoise de psychologie 1987, 8(3):30-39.
19. Hanson E., Magnusson L., Nolan J. Swedish experience of a negotiated approach to carer assessment: the carers outcome agreement tool. Journal of Research in Nursing 2008, 13(5):391-407.
20. Hanson E., Nolan J., Magnusson L., Sennemark E., Johansson L., Nolan M.R. COAT: The Carers Outcome Agreement Tool; A new approach to working with family carers. Getting Research into Practice (GRiP), Report No. 1 2006, University of Sheffield, Sheffield.
21. Ilfeld F. Further validation of a psychiatric symptom index in a normal population. Psychological Report 1976, 39(30):1215-1228.
22. Keady J., Nolan M. The dynamics of dementia: working together, working separately or working alone?. Partnerships in Family Care 2003, 15-32. Open University, Philadelphia. M. Nolan, U. Lundh, G. Grant, J. Keady (Eds.).
23. Krause N., Markides K. Measuring social support among older adults. International Journal of Human Development 1990, 30(1):37-53.
24. Laakkonen M.-L., Raivio M.M., Eloniemi-Sulkava U., Saarenheimo M., Pietilä M., Tilvis R.S., Pitkälä K.H. How do elderly spouse care givers of people with Alzheimer disease experience the disclosure of dementia diagnosis and subsequent care?. Journal of Medical Ethics 2008, 34:427-430.
25. Lauzon, S., Voyer, P., 1999. Validation de la version française de l'ISSB-M, une mesure du soutien social [Validation of the French version of the ISSB-M, a social support measure]. Unpublished manuscript. Montreal, Canada: Université de Montréal, Faculté des sciences infirmières.
26. Lavoie J.-P., Ducharme F., Lévesque L., Hébert R., Vézina J., Gendron C., Voyer L. Understanding the outcomes of a psycho-educational group intervention for caregivers of person with dementia living at home: a process evaluation. Aging & Mental Health 2005, 9(1):25-34.
27. Magnusson L., Nolan M., Hanson E., Berthold H., Andersson B. Developing partnerships with older people and their family carers: the ÄldreVästSjuhärad modelsssss. Quality in Ageing - Policy, Practice and Research 2001, 2(2):32-38.
28. Meleis A., Sawyer L., Im E.-O., Hilfinger Messias D.K., Schumacher K. Experiencing transitions: an emerging middle-range theory. Advances in Nursing Science 2000, 23(1):12-28.
29. Nolan M., Grant G., Keady J. Understanding Family Care: A Multidimensional Model of Caring and Coping 1996, Open University Press, Buckingham.
30. Nolan M., Hanson E., Magnusson L., Andersson B.-A. Gauging quality in constructivist research. The ÄldreVäst Sjuhärad model revisited. Quality in Ageing - Policy, Practice and Research 2003, 4(2):22-27.
31. Pearlin L.I., Mullan J.T., Semple S.J., Skaff M.M. Caregiving and the stress process: an overview of concepts and their measures. The Gerontologist 1990, 30(5):583-594.
32. Préville M., Potvin L., Boyer R. The structure of psychological distress. Psychological Reports 1995, 77:275-293.
33. Quinn C., Clare L., Pearce A., van Dijkhuizen M. The experience of providing care in the early stages of dementia: an interpretative phenomenological analysis. Aging & Mental Health 2008, 12(6):769-778.
34. Robinson L., Clare L., Evans K. Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Aging & Mental Health 2005, 9(4):337-347.
35. Schulz R., Burgio L., Burns R., Eisdorfer C., Gallagher-Thompson D., Gitlin L.N., Feeney Mahoney D. Resources for enhancing Alzheimer's Caregiver Health (REACH): overview, site-specific outcomes, and future directions. The Gerontologist 2003, 43(4):514-520.
36. Schumacher K.L., Stewart B.J., Archblod P.G. Mutuality and preparedness moderate the effects of caregiving on cancer family caregiver outcomes. Nursing Research 2007, 56(6):425-433.
37. Schumacher K.L., Stewart B.J., Archbold P.G., Caparro M., Mutale F. Effects of caregiving demand, mutuality, and preparednees on family caregivers outcomes during cancer treatment. Oncology Nursing Forum 2008, 35(1):49-56.
38. Seltzer M.M., Li L.W. The dynamics of caregiving: transitions during a three-year prospective study. The Gerontologist 2000, 40(2):165-178.
39. Sörensen S., Pinquart M. Developing a measure of older adults' preparation for future care needs. International Journal of Human Development 2001, 53:137-165.
40. Steffen A.M., McKibbin C., Zeiss A.M., Gallagher-Thompson D., Bandura A. The revised scale for caregiving self-efficacy: reliability and validity studies. Journal of Gerontology, Psychological Sciences 2002, 57B(1):P74-P86.
41. Tabachnick B., Fidell L.S. Using Multivariate Statistics 2001, Allyn and Bacon, Boston. 4th ed.
42. World Alzheimer Disease Report The Global Economic Impact of Dementia 2010, Alzheimer's Disease International.
43. Wright L.M., Watson W.L., Bell J.M. Beliefs: The Heart of Healing in Families and Illness 1996, F.A. Davis, Philadelphia.
44. Zwicker, D., 2010. Preparedness for caregiving scale. Try This: Best Practices in Nursing Care to Older Adults, Issue no. 28.