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. 2013 Apr 3;34(4):170–177. [Article in Spanish] doi: 10.1016/S0212-6567(04)78904-0

Calidad de vida, tiempo de dedicación y carga percibida por el cuidador principal informal del enfermo de Alzheimer

Quality of life, time commitmentand burden perceived by the principal informal caregiver of alzheimer's patients

X Badia Llach a,b,*, N Lara Suriñachb b, M Roset Gamisansb b
PMCID: PMC7668642  PMID: 15388064

Abstract

Objective

To evaluate the impact in Health Related Quality of Life (HRQoL), the time commitment and the burden perceived by the principal informal caregiver (PC) of Alzheimer's patients (AP) in Spain, as well as the typeand amount of external help received

Design

Multicentric descriptive crosssectional study

Patients

A randomised sample of 268 PICwere included from 19 Alhzeimer's Patient Family Associations (APFA) randomly selected from all Spanish regions

Measures

Data were collected using a structured telephone interview with the CATI system.HRQoL was measured using the questionnaire EuroQoL-5D. Information was also collected on the health problems of the PIC, the burden perceived (using the specific Zarit scale), the time commitment of PICs (hours per day), type of activity, as well as the amount and type of external help received

Results

The HRQoL of the PIC showed to be worse than the general population in the EQ-5D, except inthe self-care dimension. A total of 84% of PIC had physical problems related to the care given to the AP and 94,4% had psycological problems. The Zarit scale showed that 46,5% of caregivers had a level of burden between severe and moderated, while in 34,7% was severe.Time commitment was more than 8 hours per day in 72,1% of them and more than 20 hours per day in 39,6%. Only 26,9% of the PIC received some sort of socio-sanitary help and 76,5% received help from the APFA

Conclusions

Caregivers of AP suffer a neg tive impact on their health state and HRQoL; the time they dedicate to the patient is very high

Key words: Alzheimer disease, Quality of life, Caregiver, Zarit scale

bibliografía

  • 1.Boada-rovira M. El papel de las unidades de diagnóstico y evaluación de los trastornos cognitivos y de la conducta ante el diagnóstico precoz de la enfermedad de Alzheimer Análisis de 962 casos consecutivos, período 1996-1997. Fundación ACE. Rev Neurol. 1998;27(Supl 1):S5–S15. [Google Scholar]
  • 2.Durán M.A. El cuidado de la salud. In: Durán M.A., editor. De puertas a dentro. Ministerio de Asuntos Sociales. Instituto de la Mujer; Madrid: 1988. pp. 83–102. [Google Scholar]
  • 3.Durán M.A. El tiempo y la economía española. Economía y Tiempo. 1991;695:9–48. [Google Scholar]
  • 4.Pérez J.M., Abanto J., Labarta J. El síndrome del cuidador en los procesos de deterioro cognitivo (demencia) Aten Primaria. 1996;18:194–202. [PubMed] [Google Scholar]
  • 5.Mateo I., Millán A., García M.M., Gutiérrez P., Gonzalo E., López L. Cuidadores familiares de personas con enfermedad neurodegenerativa: perfil, aportaciones e impacto de cuidar. Aten Primaria. 2000;26:139–144. doi: 10.1016/S0212-6567(00)78630-6. [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 6.Padrón Municipal de Habitantes. Disponible en: http://www.ine.es
  • 7.The EuroQol Group EuroQoL a new facility for the measurement of health: related quality of life. Health Policy. 1990;16:199–208. doi: 10.1016/0168-8510(90)90421-9. [DOI] [PubMed] [Google Scholar]
  • 8.Badia X., Roset M., Montserrat S., Herdman M., Segura A. La versión española del EuroQoL, descripción y aplicaciones. Med Clin (Barc) 1999;112(Supl 1):79–85. [PubMed] [Google Scholar]
  • 9.Zarit S.H., Reever K.E., Bach-peterson J. Relatives of the impaired elderly: Correlates of feelings of burden. Gerontologist. 1980;20:649–654. doi: 10.1093/geront/20.6.649. [DOI] [PubMed] [Google Scholar]
  • 10.Martín M., Salvadó I., Nadal S., Miji L.C., Rico J.M., Lanz y Taussing M.L. Adaptación para nuestro medio de la Escala de Sobrecarga del Cuidador (Caregiver Burden Interview) de Zarit. Rev Gerontol. 1996;6:338–346. [Google Scholar]
  • 11.Lawton M.P., Brody E.M. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist. 1969;9:179–186. [PubMed] [Google Scholar]
  • 12.Badia X., Schiaffino A., Alonso J., Herdman M. Using the Euro-Qol 5-D in the Catalan general population: feasibility and construct validity. Qual Life Res. 1998;7:311–322. doi: 10.1023/a:1024933913698. [DOI] [PubMed] [Google Scholar]
  • 13.Cid-ruzafa J., Damián-Moreno J. Disability evaluation: Barthel's index. Rev Esp Salud Pública. 1997;71:127–137. [PubMed] [Google Scholar]
  • 14.Vallés M.N., Gutiérrez V., Luquín A.M., Martín A.M., López de Castro F. Problemas de salud y sociales de los pacientes con demencia. Aten Primaria. 1998;22:481–485. [PubMed] [Google Scholar]
  • 15.Thompson C, Briggs M. Support for carers of people with Alzheimer's type dementia. Cochrane Database Syst Rev 2000;(2):CD00454 [DOI] [PubMed]
  • 16.Ethgen O., Kahler K.H., Kong S.X., Reginster J.Y., Wolfe F. The effect of health related quality of life on reported use of health care resources in patients with osteoarthritis and rheumatoid arthritis: a longitudinal analysis. J Rheumatol. 2002;29:1147–1155. [PubMed] [Google Scholar]
  • 17.Bell C.M., Araki S.S., Neumann P.J. The association between caregiver burden and caregiver health-related quality of life in Alzheimer disease. Alzheimer Dis Assoc Disord. 2001;15:129–136. doi: 10.1097/00002093-200107000-00004. [DOI] [PubMed] [Google Scholar]
  • 18.Martin Carrasco M., Ballesteros Rodríguez J., Ibarra Gandiaga N., Loizaga Arnaiz C., Serrano Valenzuela B., Larumbe Lizarraga M.J. Alzheimer's caregiver burden and pshychological distress. A neglected association in the assessment of dementias. Actas Esp Psiquiatr. 2002;30:201–206. [PubMed] [Google Scholar]
  • 19.Garre-Olmo J., Hernández-Ferrándiz M., Lozano-Gallego M., Vilalta-Franch J., Turón-Estrada A., Cruz-reina M.M. Carga y calidad de vida en cuidadores de pacientes con demencia tipo Alzheimer. Rev Neurol. 2000;31:522–527. [PubMed] [Google Scholar]
  • 20.Rymer S., Salloway S., Norton L., Malloy P., Correia S., Monast D. Impaired awareness, behaviour disturbance, and caregiver burden in Alzheimer disease. Alzheimer Dis Assoc Disord. 2002;16:248–253. doi: 10.1097/00002093-200210000-00006. [DOI] [PubMed] [Google Scholar]
  • 21.Fuh J.L., Liu C.K., Mega MS,Wang S.J., Cumming J.L. Behavioral disorders and caregivers' reaction in Taiwanese patients with Alzheimer's disease. Int Psychogeriatr. 2001;13:121–128. doi: 10.1017/s1041610201007517. [DOI] [PubMed] [Google Scholar]
  • 22.Nagaratnam N., Lim W., Hutyn S. Some problematic behaviors in Alzheimer's dementia. Arch Gerontol Geriatr. 2001;32:57–65. doi: 10.1016/s0167-4943(01)00081-4. [DOI] [PubMed] [Google Scholar]
  • 23.Gallicchio L., Siddiqui N., Langenberg P., Baumgarten M. Gender differences in burden and depression among informal caregivers of demented elders in the community. Int J Geriatr Psychiatry. 2002;17:154–163. doi: 10.1002/gps.538. [DOI] [PubMed] [Google Scholar]
  • 24.Boada M., Peña-Casanova J., Bermejo F., Guillén F., Hart W.M., Espinosa C. Coste de los recursos sanitarios de los pacientes en régimen ambulatorio diagnosticados de enfermedad de Alzheimer en España. Med Clin (Barc) 1999;113:690–695. [PubMed] [Google Scholar]
  • 25.Sorensen S., Pinquart M., Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42:356–372. doi: 10.1093/geront/42.3.356. [DOI] [PubMed] [Google Scholar]
  • 26.Hebert R., Levesque L., Vecina J., Lavoie J.P., Ducharme F., Gendron C. Efficacy of a psychoeducative group program for caregivers of demented persons living at home: a randomized controlled trial. J Gerontol B Psychol Sci Soc Sci. 2003;58:S58–S67. doi: 10.1093/geronb/58.1.s58. [DOI] [PubMed] [Google Scholar]
  • 27.Coen R.F. Individual QoL and assessment by careers or «proxy» responders. In: O'Boyle H., McGee J., Joyce C.B.R., editors. Individual quality of life. Approaches to conceptualization and measurement. Harwood Academic; Reading: 1996. [Google Scholar]
  • 28.Argüelles S., Loewenstein D.A., Eisdorfer C., Arguelles T. Caregivers' judgments of the functional abilities of the Alzheimer's disease patient: impact of caregivers' depression and perceived burden. J Geriatr Psychiatry Neurol. 2001;14:91–98. doi: 10.1177/089198870101400209. [DOI] [PubMed] [Google Scholar]

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