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The Experience of quality of life for caregivers of people with Alzheimer’s disease living in Lazio and Sardinia: a comparative phenomenological study
Titolo Rivista: SALUTE E SOCIETÀ 
Autori/Curatori: Carlo Talucci, Ercole Vellone, Giovanni Piras, Z. Marlene Cohen, Rosaria Alvaro 
Anno di pubblicazione:  2013 Fascicolo: 3EN Lingua: Inglese 
Numero pagine:  15 P. 125-139 Dimensione file:  668 KB

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 the Italian Regions of Lazio and Sardinia, and to identify the factors that worsened or improved caregiver’s QOL in the two contexts. A hermeneutic phenomenological design was used to study 73 informal caregivers. The themes that emerged in relation to the meaning of QOL were: freedom, independence, having time for oneself; serenity, tranquillity; general wellbeing and good health; good financial status; unity and cooperation in the family. The 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 progression of the disease; continuous care, not having time for oneself. The factors improving QOL were: patients’ good health; formal and informal help in caregiving; independence from the patient; help and support from the family; reward and satisfaction for care provided; more free time; more public sensitization about AD. The similarities and differences found between the two Regions were discussed.


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

  1. 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.2006.08.01
  2. 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.197
  3. 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/S104161020400085
  4. Belle S.H., Burgio L., Burns R., Coon D., Czaja S.J., 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 quali- ty of life of dementia caregivers from different ethnic or racial groups: a randomized, controlled trial. Annals of Internal Medicine, 145, 10: 727-738
  5. 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/S0277-9536(03)00133-
  6. 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
  7. 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.207
  8. 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/44.2.14
  9. 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/42.6.77
  10. Cohen M.Z., Kahn D., Steeves R. (2000). Hermeneutic phenomenological research: a practical guide for nurse researchers. Thousand Oaks, CA: Sage
  11. Dooley N.R., Hinojosa J. (2004). Improving quality of life for persons with Alzheimer’s disease and their family caregivers: brief occupational therapy intervention. American Journal of Occuational Therapy, 58, 5: 561-569,, DOI: 10.5014/ajot.58.5.56
  12. 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: 10.1177/153331750629066
  13. 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: 10.1186/1477-7525-6-9
  14. 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/60.3.36
  15. 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.2009.01.02
  16. 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: 10.1177/104973230426673
  17. 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.2006.70.3.22
  18. Kalaria R.N., Maestre G.E., Arizaga R., Friedland R.P., Galasko D., Hall K. et al.
  19. (2008). Alzheimer’s disease and vascular dementia in developing countries: prev- alence, management, and risk factors. Lancet Neurology, 7, 9: 812-826,, DOI: 10.1016/S1474-4422(08)70169-
  20. Kaplan R.M., Ries A.L. (2007). Quality of life: concept and definition. Chronic Obstructive Pulmonary Disease, 4, 3: 263-271,, DOI: 10.1080/1541255070148035
  21. 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.625-63
  22. 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.45.40
  23. 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: 10.1097/00002093-200310000-0000
  24. 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: 10.2165/11631830-000000000-0000
  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.
  26. Rinaldi P., Spazzafumo L., Mastriforti R., Mattioli P., Marvardi M., Polidori M.C. et al. (2005). Predictors of high level of burden and distress in caregivers of demented patients: results of an Italian multicenter study. International Journal of Geriatric Psychiatry, 20, 2: 168-174,, DOI: 10.1002/gps.126
  27. 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.
  28. 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
  29. 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.2007.08.01
  30. 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
  31. 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.2005.03.00
  32. 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: 10.1177/089198870629862
  33. Strang V.R., Haughey M. (1999). Respite-a coping strategy for family caregivers. Western Journal of Nursing Research, 21, 4: 450-466 Suchorzepka D., Nasilowska-Barud A. (2004). Selected conceptions of defining the quality of life. Annales Universitatis Mariae Curie Sklodowska Medicine, 59, 2: 447-450
  34. 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.
  35. 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: 10.1177/104365961141419
  36. 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.
  37. 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.0000021312.37592.4
  38. 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: 10.1080/1360786080193332
  39. 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.2007.02.00

Carlo Talucci, Ercole Vellone, Giovanni Piras, Z. Marlene Cohen, Rosaria Alvaro, in "SALUTE E SOCIETÀ" 3EN/2013, pp. 125-139, DOI:

   

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