Hostname: page-component-78c5997874-fbnjt Total loading time: 0 Render date: 2024-11-08T03:29:40.574Z Has data issue: false hasContentIssue false
  • English
  • Français

Spouse-caregivers’ quality of life in Alzheimer's disease

Published online by Cambridge University Press:  11 December 2014

Marcela Moreira Lima Nogueira ,
Jose Pedro Simões Neto ,
Maria Fernanda B. Sousa ,
Raquel L. Santos ,
Rachel D. L. Rosa ,
Tatiana Belfort ,
Bianca Torres  and
Marcia Cristina Nascimento Dourado
Marcela Moreira Lima Nogueira*
Affiliation:
Center for Alzheimer's Disease, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, Brazil
Jose Pedro Simões Neto
Affiliation:
Department of Political Sociology, Universidade Federal de Santa Catarina, Brazil
Maria Fernanda B. Sousa
Affiliation:
Center for Alzheimer's Disease, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, Brazil
Raquel L. Santos
Affiliation:
Center for Alzheimer's Disease, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, Brazil
Rachel D. L. Rosa
Affiliation:
Center for Alzheimer's Disease, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, Brazil
Tatiana Belfort
Affiliation:
Center for Alzheimer's Disease, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, Brazil
Bianca Torres
Affiliation:
Center for Alzheimer's Disease, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, Brazil
Marcia Cristina Nascimento Dourado
Affiliation:
Center for Alzheimer's Disease, Institute of Psychiatry, Universidade Federal do Rio de Janeiro, Brazil
*
Correspondence should be addressed to: Marcela Moreira Lima Nogueira, Rua Ronald de Carvalho, 265/303, Copacabana, Rio de Janeiro, RJ, 22021-020, Brasil. Phone: +55 21 980514000. Email: [email protected].
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

The relationship between sexuality and quality of life (QoL) of spouse-caregivers remains unclear. We designed this study to evaluate the relationship between sexual satisfaction and spouse-caregivers’ QoL, and to determine the influence of the clinical characteristics of people with dementia (PWD) on spouse-caregivers’ self-reported QoL.

Methods:

Using a cross-sectional design, 54 PWD and their spouse-caregivers completed the QoL in Alzheimer's Disease scale (QoL-AD), questionnaire on sexual experience and satisfaction (QSES), Mini-Mental State Examination (MMSE), Clinical Dementia Rating scale (CDR), Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), Pfeffer functional activities questionnaire (FAQ), the Cornell scale for depression in dementia (CSDD) and Zarit burden interview (ZBI). Univariate and multivariate regression analyses were conducted to identify the factors that influenced the spouse-caregivers’ QoL ratings.

Results:

We did not find a significant difference in QoL between male and female spouse-caregivers (p = 0.71). We also found that 13% of males and 48.1% of females demonstrated moderate to severe sexual dissatisfaction. However, we did not find a significant correlation between spouse-caregivers’ QoL and sexual satisfaction (p = 0.41). The linear regression indicated that impaired awareness and lower QoL of PWD were significantly related to spouse-caregivers’ QoL (p = 0.000).

Conclusions:

The spouse-caregivers’ QoL is influenced by awareness of disease and PWD QoL. Our study would be helpful for the development of adequate psycho-educational approaches to increase spouse-caregivers’ QoL, considering the specificities of the couples’ relationship.

Keywords

quality of lifeAlzheimer’s diseasespouse-caregivergenderdementiasexual satisfaction
Type
Research Article
Information
International Psychogeriatrics , Volume 27 , Issue 5 , May 2015 , pp. 837 - 845
Copyright
Copyright © International Psychogeriatric Association 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Abdo, C. H. N. and Oliveira, W. M. (2004). Validação de questionário para investigação de disfunções sexuais. Revista Brasileira de Psiquiatria, 26,45.Google Scholar
American Psychiatric Association (2000). Diagnostic and Statistical Manual of Mental Disorders – Text Revision, 4th edn, (DSM-IV-TR). Washington, DC: American Psychiatric Association.Google Scholar
Bertolucci, P. H., Brucki, S. M., Campacci, S. R. and Juliano, Y. (1994). O Mini-exame do estado mental em uma população geral: impacto da escolaridade. Arquivos de Neuropsiquiatria, 52, 1–7. doi:10.1590/S0004-282X1994000100001.CrossRefGoogle Scholar
Boylsten, C. and Hayes, J. (2012). Reconstructing marital closeness while caring for a spouse with Alzheimer's. Journal of Family Issues, 33, 584–612. doi: 10.1177/0192513X11416449.CrossRefGoogle Scholar
Carthery-Goulart, M. T. et al. (2007). Brazilian version of the Cornell depression scale in dementia. Arquivos de Neuropsiquiatria, 65, 912–915. doi:10.1590/S0004-282X2007000500037.CrossRefGoogle ScholarPubMed
Clare, L. et al. (2012). Marital relationship quality in early-stage dementia perspectives from people with dementia and their spouses. Alzheimer Disease and Associated Disorders, 26, 148–158. doi: 10.1097/WAD.0b013e318221ba23.CrossRefGoogle ScholarPubMed
Conde-Sala, J. L., Garre-Olmo, J., Turró-Garriga, O., López-Pousa, S. and Vilalta-Franch, J. (2009). Factors related to perceived quality of life in patients with Alzheimer's disease: the patient's perception compared with that of caregivers. International Journal of Geriatric Psychiatry, 24, 585–594. doi:10.1002/gps.2161.CrossRefGoogle ScholarPubMed
Conde-sala, J. L. et al. (2013). Clinical differences in patients with Alzheimer's disease according to the presence or absence of anosognosia: implications for perceived quality of life. Journal of Alzheimer's Disease, 33, 1105–1116. doi: 10.3233/JAD-2012-121360.CrossRefGoogle ScholarPubMed
Cooper, C., Katona, C., Orrell, M. and Livingston, G. (2008). Coping strategies, anxiety and depression in caregivers of people with Alzheimer's disease. International Journal of Geriatric Psychiatry, 23, 929–936. doi: 10.1002/gps.2007.CrossRefGoogle ScholarPubMed
Davies, H. D. et al. (2010). The impact of dementia and mild memory impairment (MMI) on intimacy and sexuality in spousal relationships. International Psychogeriatrics, 22, 618–628. doi:10.1017/S1041610210000177.CrossRefGoogle ScholarPubMed
Dourado, M., Finamore, C., Barroso, M. F., Santos, R. and Laks, J. (2010). Sexual satisfaction in dementia: perspectives of patients and spouses. Sexuality and Disability, 28, 195–203. doi:10.1007/s11195-010-9165-5.CrossRefGoogle Scholar
Dourado, M. C. et al. (2014). Awareness of disease in dementia: factor structure of the assessment scale of psychosocial impact of the diagnosis of dementia. Journal of Alzheimer's Disease, 41, 947–956. doi: 10.3233/JAD-140183.CrossRefGoogle ScholarPubMed
Hong, S. and Coogle, C. L. (2014). Spousal caregiving for partners with dementia: a deductive literature review testing Calasanti's gendered view of care work. Journal of Applied Gerontology, 7, 1–29. doi: 10.1177/0733464814542246.Google Scholar
Karttunen, K. et al. (2011). Neuropsychiatric symptoms and quality of life in patients with very mild and mild Alzheimer's disease. International Journal of Geriatric Psychiatry, 26, 473–482. doi:10.1002/gps.2550.CrossRefGoogle ScholarPubMed
Keating, N. and Gaudet, N. (2012). Quality of life of persons with dementia. Journal of Nutrition, Health & Aging, 5, 454–456. doi: 10.1007/s12603-011-0346-4.CrossRefGoogle Scholar
Logsdon, R. G., Gibbons, L. E., McCurry, S. M. and Teri, L. (1999). Quality of life in Alzheimer's disease: patient and caregiver reports. Journal of Mental Health and Aging, 5, 21–32.Google Scholar
Logsdon, R. G., Gibbons, L. E., McCurry, S. M. and Teri, L. (2002). Assessing quality of life in older adults with cognitive impairment. Psychosomatic Medicine, 64, 510–519. doi: 0033-3174/02/6403-0510.CrossRefGoogle ScholarPubMed
Maia, A. L. G. et al. (2006). Application of the Brazilian version of the CDR scale in samples of dementia patients. Arquivos de Neuropsiquiatria, 64, 485–489. doi: 10.1590/S0004-282X2006000300025.CrossRefGoogle ScholarPubMed
Nitrini, R., Caramelli, P., Bottino, C.M.C., Damasceno, B.P., Brucki, S.M.D. and Anghinah, R. (2005). Diagnóstico de doença de Alzheimer no Brasil: avaliação cognitiva e funcional. Recomendações do departamento científico de neurologia cognitiva e do envelhecimento da academia Brasileira de neurologia. Arquivos de Neuropsiquiatria, 63, 720–727. doi 10.1590/S0004-282X2005000400034.CrossRefGoogle Scholar
Nogueira, M. M. L., Brasil, D., Sousa, M. F. B., Santos, R. L. and Dourado, M. C. N. (2013). Satisfação sexual na demência. Sexual satisfaction in dementia. Revista de Psiquiatria Clinica, 40, 77–80. doi: 10.1590/S0101-60832013000200005.CrossRefGoogle Scholar
Novelli, M. M. P. C., Nitrini, R. and Caramelli, P. (2010). Validation of the Brazilian version of the quality of life scale for patients with Alzheimer disease and their caregivers (QOL-AD). Aging and Mental Health, 14, 624–631. doi:10.1080/13607861003588840.CrossRefGoogle ScholarPubMed
Scazufca, M. (2002). Brazilian version of the Burden Interview scale for the assessment of burden of care in carers of people with mental illnesses. Revista Brasileira de Psiquiatria, 24, 12–17. doi:10.1590/S1516-44462002000100006.CrossRefGoogle Scholar
Schiffczyk, C., Romero, B., Jonas, C., Lahmeyer, C., Müller, F. and Riepe, M. W. (2010). Generic quality of life assessment in dementia patients: a prospective cohort study. BioMed Central Neurology, 10, 1–8. doi:10.1186/1471-2377-10-48.Google ScholarPubMed
Simonelli, C. et al. (2008). The influence of caregiver burden on sexual intimacy and marital satisfaction in couples with an Alzheimer spouse. International Journal of Clinical Practice, 62, 47–52. doi: 10.1111/j.1742-1241.2007.01506.x.CrossRefGoogle ScholarPubMed
Sousa, M. F. B. et al. (2013). Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers. International Psychogeriatrics, 25, 1097–1105. doi:10.1017/S1041610213000410.CrossRefGoogle ScholarPubMed
Svetlik, R. N. D., Dooley, W. K., Weiner, M. F., Williamson, G. M. and Walters, A. S. (2005). Declines in satisfaction with physical intimacy predict caregiver perceptions of overall relationship loss: a study of elderly caregiving spousal dyads.Sexuality and Disability, 23, 65–79. doi: 10.1007/s11195-005-4670-7.CrossRefGoogle Scholar
Vogel, A., Mortensen, E. L., Hasselbalch, S. G., Andersen, B. B. and Waldemar, G. (2006). Patient versus informant reported quality of life in the earliest phases of Alzheimer's disease. International Journal of Geriatric Psychiatry, 21, 1132–1138. doi:10.1002/gps. 1619.CrossRefGoogle ScholarPubMed
Vugt, M. E. et al. (2003). Behavioural disturbances in dementia patients and quality of the marital relationship. International Journal of Geriatric Psychiatry, 18, 149–154.CrossRefGoogle ScholarPubMed
Wright, L. K. (1991). The impact of Alzheimer's disease on the marital relationship. The Gerontologist, 31, 224–237. doi: 10.1093/geront/31.2.224.CrossRefGoogle ScholarPubMed