"Flying by the seat of our pants": What dementia family caregivers want in an advanced caregiver training program

Research in Nursing and Health

Volumn 35, Issue 6, 2012, Pages 598-609

  Samia, Linda W ^a   Hepburn, Kenneth ^b   Nichols, Lynne ^c  

^a UNIVERSITY OF SOUTHERN MAINE   (United States)

^b EMORY UNIVERSITY   (United States)

^c Integr8 Health LCC   (United States)

Author keywords

Alzheimer's disease; Dementia family caregiving; Psychoeducational training; Savvy Caregiver Program

Indexed keywords

AGED; ALZHEIMER DISEASE; ARTICLE; BEHAVIOR; CAREGIVER; DECISION MAKING; DEMENTIA; DISEASE COURSE; EDUCATION; FEMALE; HEALTH EDUCATION; HOME CARE; HUMAN; INFORMATION PROCESSING; MALE; METHODOLOGY; MIDDLE AGED; MULTICENTER STUDY; NEEDS ASSESSMENT; PATIENT CARE; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH; SELF CARE; SOCIAL SUPPORT; UNITED STATES;

AGED; AGED, 80 AND OVER; ALZHEIMER DISEASE; BEHAVIORAL SYMPTOMS; CAREGIVERS; DECISION MAKING; DEMENTIA; DISEASE PROGRESSION; FEMALE; FOCUS GROUPS; HEALTH EDUCATION; HOME NURSING; HUMANS; MAINE; MALE; MIDDLE AGED; NEEDS ASSESSMENT; PATIENT NAVIGATION; QUALITATIVE RESEARCH; SELF CARE; SOCIAL SUPPORT;

EID: 84869097805     PISSN: 01606891     EISSN: 1098240X     Source Type: Journal    
DOI: 10.1002/nur.21504     Document Type: Article

References (28)

1. Alzheimer's Association. (2011). 2011 Alzheimer's Disease facts and figures Alzheimer's & Dementia (Vol. 7). Chicago, IL: Author.
2. Brodaty, H., Thomson, C., Thompson, C., & Fine, M. (2005). Why caregivers of people with dementia and memory loss don't use services. International Journal of Geriatric Psychiatry, 20, 537-546, DOI: 510.1002/gps.1322. doi: 10.1002/gps.1322.
3. Coon, D. W., & Evans, B. (2009). Empirically based treatments for family caregiver distress: What works and where do we go from here? Geriatric Nursing, 30, 426-436, DOI: 10.1016/j.gerinurse.2009.09.010.
4. Gaugler, J. E., Kane, R. L., Kane, R. A., & Newcomer, R. (2005). The longitudinal effects of early behavior problems in the dementia caregiving career. Psychology and Aging, 20, 100-116, DOI: 10.1037/0882-7974.20.1.100.
5. Gaugler, J. E., & Teaster, P. (2006). The family caregiving career: Implications for community-based long-term care practice and policy. Journal of Aging and Social Policy, 18(3-4), 141-154, DOI: 10.1300/J031v18n03_10.
6. Greenwood, D. J., & Levin, M. (2005). Reform of the social sciences, and of universities through action research. In N. K. Denzin & Y. S. Lincoln (Eds.), The SAGE handbook of qualitative research (3rd ed., pp. 43-64). Los Angeles, CA: Sage.
7. Hepburn, K., Lewis, M., Narayan, S., Center, B., Tornatore, J., Bremer, K. L., & Kirk, L. N. (2005). Partners in caregiving: A psychoeducation program affecting dementia family caregivers' distress and caregiving outlook. Clinical Gerontologist, 29, 53-69, DOI: 10.1300/J018v29n1301_1305_1353.
8. Hepburn, K., Lewis, M., Tornatore, J., Sherman, C. W., & Bremer, K. L. (2007). The Savvy Caregiver program: The demonstrated effectiveness of a transportable dementia caregiver psychoeducation program. Journal of Gerontological Nursing, 33(3), 30-36.
9. Hepburn, K., Tornatore, J., Center, B., & Ostwald, S. W. (2001). Dementia family caregiver training: Affecting beliefs about caregiving and caregiver outcomes. Journal of the American Geriatrics Society, 49, 450-457.
10. Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277-1288, DOI: 10.1177/1049732305276687.
11. Kiecolt-Glaser, J. K., Preacher, K. J., MacCallum, R. C., Atkinson, C., Malarkey, W. B., & Glaser, R. (2003). Chronic stress and age-related increases in the proinflammatory cytokine IL-6. Proceedings of the National Academy of Sciences of the United States of America, 100, 9090-9095, DOI: 10.1073/pnas.15319031001531903100 [pii].
12. Krueger, R. A., & Casey, M. A. (2009). Focus groups: A practical guide for applied research (4th ed.). Los Angeles, CA: Sage.
13. Lazarus, R., & Folkman, S. (1984). Stress, appraisal, and coping. New York, NY: Springer.
14. Montgomery, R. J., & Kosloski, K. (2000). Family caregiving: Change, continuity and diversity. In M. P. Lawton & R. L. Rubenstien (Eds.), Interventions in dementia care: Toward improving quality of life (pp. 143-171). New York, NY: Springer.
15. Montgomery, R. J., & Kosloski, K. (2009). Caregiving as a process of changing identity: Implications for caregiver support. Generations, 33(1), 47-52.
16. National Alliance for Caregiving. (2009). Caregiving in the U.S. 2009. Retrieved from http://www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf.
17. Ostwald, S. K., Hepburn, K. W., & Burns, T. (2003). Training family caregivers of patients with dementia. A structured workshop approach. Journal of Gerontological Nursing, 29(1), 37-44.
18. Ostwald, S. K., Hepburn, K. W., Caron, W., Burns, T., & Mantell, R. (1999). Reducing caregiver burden: A randomized psychoeducational intervention for caregivers of persons with dementia. Gerontologist, 39, 299-309.
19. Parker, D., Mills, S., & Abbey, J. (2008). Effectiveness of interventions that assist caregivers to support people with dementia living in the community: A systematic review. International Journal of Evidence-Based Healthcare, 6, 137-172, DOI: 10.1111/j.1744-1609.2008.00090.x.
20. Pearlin, L. I., Mullan, J. T., Semple, S. J., & Skaff, M. M. (1990). Caregiving and the stress process: An overview of concepts and their measures. Gerontologist, 30, 583-594.
21. Pinquart, M., & Sorensen, S. (2005). Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: A meta-analysis. Gerontologist, 45, 90-106.
22. Pinquart, M., & Sorensen, S. (2006a). Gender differences in caregiver stressors, social resources, and health: An updated meta-analysis. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences, 61, P33-P45.
23. Pinquart, M., & Sorensen, S. (2006b). Helping caregivers of persons with dementia: Which interventions work and how large are their effects? International Psychogeriatrics, 18, 577-595, DOI: S1041610206003462 [pii] 10.1017/S1041610206003462.
24. Pinquart, M., & Sorensen, S. (2007). Correlates of physical health of informal caregivers: A meta-analysis. Journals of Gerontology. Series B Psychological Sciences and Social Sciences, 62, P126-P137, DOI: 62/2/P126 [pii].
25. Schulz, R., & Sherwood, P. R. (2008). Physical and mental health effects of family caregiving. American Journal of Nursing, 108(9 Suppl), 23-27, DOI: 10.1097/01.NAJ.0000336406.45248.4c.
26. Skaff, M. M., Pearlin, L. I., & Mullan, J. T. (1996). Transitions in the caregiving career: Effects on sense of mastery. Psychology and Aging, 11, 247-257, DOI: 210.1037/0882-7974.1011.1032.1247. doi: 10.1037/0882.-7974.11.2.247.
27. U.S. Department of Health and Human Services, Administration on Aging, Alzheimer's Disease Supportive Services Program. (2008). Alzheimer's Disease Supportive Services Program: Evidence-based caregiver programs to better serve people with Alzheimer's Disease and related disorders.: Retrieved from http://www.aoa.gov/aoaroot/Press_Room/Products_Materials/fact/pdf/ADSSP_Factsheet.pdf.
28. Zarit, S., & Femia, E. (2008). Behavioral and psychosocial interventions for family caregivers. American Journal of Nursing, 108(9 Suppl), 47-53, DOI: 10.1097/01.NAJ.0000336415.60495.34.