Il vissuto esperienziale riferito alla qualità di vita nei caregiver di persone con malattia d’Alzheimer che vivono nel Lazio ed in Sardegna: uno studio fenomenologico comparativo

Journal title SALUTE E SOCIETÀ
Author/s Carlo Talucci, Ercole Vellone, Giovanni Piras, Marlene Z. Cohen, Rosaria Alvaro
Publishing Year 2013 Issue 2013/3
Language Italian Pages 15 P. 126-140 File size 112 KB
DOI 10.3280/SES2013-003009
DOI is like a bar code for intellectual property: to have more infomation click here

Below, you can see the article first page

If you want to buy this article in PDF format, you can do it, following the instructions to buy download credits

Article preview

FrancoAngeli is member of Publishers International Linking Association, Inc (PILA), a not-for-profit association which run the CrossRef service enabling links to and from online scholarly content.

The aim of this study was to describe and compare the meaning of quality of life (QOL) for caregivers of patients with Alzheimer’s Disease living in Lazio and Sardinia region and to identify factors worsening and improving caregiver’s QOL in the two contexts. A hermeneutic phenomenological design was used to study 73 informal caregivers. Emerged themes related to the meaning of QOL were: freedom, independence, having time for themselves; serenity, tranquility; general wellbeing and good health; good financial status; unity and cooperation in the family. Themes related to factors worsening QOL were: worries about the future and illness progression; stress; fear about the future: for the care needed and the illness progression; continuous care, not having time for themselves. Factor improving QOL were: patients’ good health; formal and informal help in caregiving; independence from the patient; help and support from family; reward and satisfaction for the delivered care; more free time; more public sensitization on AD. Similarities and differences were found between the two regions and were discussed as well.

Keywords: Quality of life, informal caregivers, Alzheimer’s Disease, nursing, interview, phenomenological research

  1. Sansoni J., Vellone E., Piras G. (2004). Anxiety and depression in communitydwelling, Italian Alzheimer’s disease caregivers. International Journal of Nursing Practice, 10, 2: 93-100, DOI: 10.1111/j.1440-172X.2003.00461.x
  2. Schulz R., Martire L.M. (2004). Family caregiving of persons with dementia: prevalence, health effects, and support strategies. American Journal of Geriatric Psychiatry, 12, 3: 240-249.
  3. Scott N.W., Fayers P.M., Aaronson N.K., Bottomley A., de Graeff A., Groenvold M. et al. (2008). The relationship between overall quality of life and its subdimensions was influenced by culture: analysis of an international database. Journal of Clinical Epidemiology, 61, 8: 788-795, DOI: 10.1016/j.jclinepi.2007.08.015
  4. Spadin P. (2008). The caregiver of a person with Alzheimer’s disease. Giornale Italiano di Medicina del Lavoro ed Ergonomia, 30 (3 Suppl B): B15-21.
  5. Spurlock W.R. (2005). Spiritual well-being and caregiver burden in Alzheimer’s caregivers. Geriatric Nursing, 26, 3: 154-161, DOI: 10.1016/j.gerinurse.2005.03.006
  6. Steadman P.L., Tremont G., Davis J.D. (2007). Premorbid relationship satisfaction and caregiver burden in dementia caregivers. Journal of Geriatric Psychiatry and Neurology, 20, 2: 115-119, DOI: 10.1177/0891988706298624
  7. Strang V.R., Haughey M. (1999). Respite-a coping strategy for family caregivers. Western Journal of Nursing Research, 21, 4: 450-466.
  8. Suchorzepka D., Nasilowska-Barud A. (2004). Selected conceptions of defining the quality of life. Annales Universitatis Mariae Curie Sklodowska Medicine, 59, 2: 447-450.
  9. Vellone E., Piras G., Talucci C., Cohen M.Z. (2008). Quality of life for caregivers of people with Alzheimer’s disease. Journal of Advanced Nursing, 61, 2: 222-231, DOI: 10.1111/j.1365-2648.2007.04494.x
  10. Vellone E., Piras G., Venturini G., Alvaro R., Cohen M.Z. (2012). The Experience of quality of life for caregivers of people with Alzheimer’s Disease living in Sardinia, Italy. Journal of Transcultural Nursing, 23, 1: 46-55, DOI: 10.1177/1043659611414199
  11. Vellone E., Sansoni J., Cohen M.Z. (2002). The experience of Italians caring for family members with Alzheimer’s disease. Journal of Nursing Scholarship, 34, 4: 323-329, DOI: 10.1111/j.1547-5069.2002.00323.x
  12. White C.L., Lauzon S., Yaffe M.J., Wood-Dauphinee S. (2004). Toward a model of quality of life for family caregivers of stroke survivors. Quality of Life Research, 13, 3: 625-638, DOI: 10.1023/B:QURE.0000021312.37592.4f
  13. Wilks S.E., Croom B. (2008). Perceived stress and resilience in Alzheimer’s disease caregivers: testing moderation and mediation models of social support. Aging & Mental Health, 12, 3: 357-365, DOI: 10.1080/13607860801933323
  14. Wimo A., Winblad B., Jonsson L. (2007). An estimate of the total worldwide societal costs of dementia in 2005. Alzheimers Dement, 3, 2: 81-91, DOI: 10.1016/j.jalz.2007.02.001
  15. Andren S., Elmstahl S. (2007). Relationships between income, subjective health and caregiver burden in caregivers of people with dementia in group living care: a cross-sectional community-based study. International Journal of Nursing Studies, 44, 3: 435-446, DOI: 10.1016/j.ijnurstu.2006.08.016
  16. Arai Y., Arai A., Zarit S.H. (2008). What do we know about dementia?: a survey on knowledge about dementia in the general public of Japan. International Journal of Geriatric Psychiatry, 23, 4: 433-438, DOI: 10.1002/gps.1977
  17. Bedard M., Kuzik R., Chambers L., Molloy D.W., Dubois S., Lever J.A. (2005). Understanding burden differences between men and women caregivers: the contribution of care-recipient problem behaviors. International Psychogeriatric, 17, 1: 99-118, DOI: 10.1017/S1041610204000857
  18. Belle S.H., Burgio L., Burns R., Coon D., Czaja SJ., Gallagher-Thompson D., Gitlin L.N., Klinger J., Koepke K.M., Lee C.C. Martindale-Adams J., Nichols L., Schulz R., Stahl S., Stevens A., Winter L., Zhang S. (2006). Enhancing the quality of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Annals of Internal Medicine, 145, 10: 727-738.
  19. Bond M.J., Clark M.S., Davies S. (2003). The quality of life of spouse dementia caregivers: changes associated with yielding to formal care and widowhood. Social Science & Medicine, 57, 12: 2385-2395, DOI: 10.1016/S02779536(03)00133-3
  20. Bowling A., Gabriel Z., Dykes J., Dowding L.M., Evans O., Fleissig A. et al. (2003). Let’s ask them: a national survey of definitions of quality of life and its enhancement among people aged 65 and over. International Journal of Aging Human Development, 56, 4: 269-306, 10.2190/BF8G-5J8L-YTRF-6404.
  21. Campbell P., Wright J., Oyebode J., Job D., Crome P., Bentham P. et al. (2008). Determinants of burden in those who care for someone with dementia. International Journal of Geriatric Psychiatry, 23, 10: 1078-1085, DOI: 10.1002/gps.2071
  22. Carpenter B., Dave J. (2004). Disclosing a dementia diagnosis: a review of opinion and practice, and a proposed research agenda. Gerontologist, 44, 2: 149-158, DOI: 10.1093/geront/44.2.149
  23. Chappell N.L., Reid R.C. (2002). Burden and well-being among caregivers: examining the distinction. Gerontologist, 42, 6: 772-780, DOI: 10.1093/geront/42.6.772
  24. Cohen M.Z., Kahn D., Steeves R. (2000). Hermeneutic phenomenological research: a practical guide for nurse researchers. Thousand Oaks, CA: Sage.
  25. Rimmer E., Wojciechowska M., Stave C., Sganga A., O’Connell B. (2005). Implications of the Facing Dementia Survey for the general population, patients and caregivers across Europe. International Journal of Clinical Practice Supplements, 146: 17-24, DOI: 10.1111/j.1368-504X.2005.00482.x.RinaldiP.,SpazzafumoL.,MastrifortiR.,MattioliP.,MarvardiM.,PolidoriM.C.etal.(2005).Predictorsofhighlevelofburdenanddistressincaregiversofdementedpatients:resultsofanItalianmulticenterstudy.InternationalJournalofGeriatricPsychiatry,20,2:168-174,doi:10.1002/gps.1267
  26. Pouryamout L., Dams J., Wasem J., Dodel R., Neumann A. (2012). Economic evaluation of treatment options in patients with Alzheimer’s disease: a systematic review of cost-effectiveness analyses. Drugs, 72, 6: 789-802, DOI: 10.2165/11631830-000000000-00000
  27. Markowitz J.S., Gutterman E.M., Sadik K., Papadopoulos G. (2003). Health-related quality of life for caregivers of patients with Alzheimer disease. Alzheimer Disease and Associated Disorders, 17, 4: 209-214, DOI: 10.1097/00002093200310000-00003
  28. Kuroda A., Tanaka K., Kobayashi R., Ito T., Ushiki A., Nakamura K. (2007). Effect of care manager support on health-related quality of life of caregivers of impaired elderly: one-year longitudinal study. Industrial Health, 45, 3: 402-408, DOI: 10.2486/indhealth.45.402
  29. Kitrungroter L., Cohen M.Z. (2006). Quality of life of family caregivers of patients with cancer: a literature review. Oncology Nursing Forum, 33, 3: 625-632, DOI: 10.1188/06.ONF.625-632
  30. Kaplan R.M., Ries A.L. (2007). Quality of life: concept and definition. Chronic Obstructive Pulmonary Disease, 4, 3: 263-271, DOI: 10.1080/15412550701480356
  31. Kalaria R.N., Maestre G.E., Arizaga R., Friedland R.P., Galasko D., Hall K. et al. (2008). Alzheimer’s disease and vascular dementia in developing countries: prevalence, management, and risk factors. Lancet Neurology, 7, 9: 812-826, DOI: 10.1016/S1474-4422(08)70169-8
  32. Heru A.M., Ryan C.E. (2006). Family functioning in the caregivers of patients with dementia: one-year follow-up. Bulletin of the Menninger Clinic, 70, 3: 222-231, DOI: 10.1521/bumc.2006.70.3.222
  33. Hendry F., McVittie C. (2004). Is quality of life a healthy concept? Measuring and understanding life experiences of older people. Qualitative Health Research, 14, 7: 961-975, DOI: 10.1177/1049732304266738
  34. Hall K.S., Gao S., Baiyewu O., Lane K.A., Gureje O., Shen J. et al. (2009). Prevalence rates for dementia and Alzheimer’s disease in African Americans: 1992 versus 2001. Alzheimers Dement, 5, 3: 227-233, DOI: 10.1016/j.jalz.2009.01.026
  35. Gitlin L.N., Hauck W.W., Dennis M.P., Winter L. (2005). Maintenance of effects of the home environmental skill-building program for family caregivers and individuals with Alzheimer’s disease and related disorders. Journal of Gerontology, 60, 3: 368-374, DOI: 10.1093/gerona/60.3.368
  36. Ferrara M., Langiano E., Di Brango T., De Vito E., Di Cioccio L., Bauco C. (2008). Prevalence of stress, anxiety and depression in with Alzheimer caregivers. Health and Quality of Life Outcomes, 6: 93, DOI: 10.1186/1477-7525-6-93
  37. Edelman P., Kuhn D., Fulton B.R., Kyrouac G.A. (2006). Information and service needs of persons with Alzheimer’s disease and their family caregivers living in rural communities. American Journal of Alzheimers Disease and Other Dementias, 21, 4: 226-233, DOI: 10.1177/1533317506290664
  38. Dooley N.R., Hinojosa J. (2004). Improving quality of life for persons with Alzheimer’s disease and their family caregivers: brief occupational therapy in tervention. American Journal of Occuational Therapy, 58, 5: 561-569, DOI: 10.5014/ajot.58.5.561

Carlo Talucci, Ercole Vellone, Giovanni Piras, Marlene Z. Cohen, Rosaria Alvaro, Il vissuto esperienziale riferito alla qualità di vita nei caregiver di persone con malattia d’Alzheimer che vivono nel Lazio ed in Sardegna: uno studio fenomenologico comparativo in "SALUTE E SOCIETÀ" 3/2013, pp 126-140, DOI: 10.3280/SES2013-003009