Hostname: page-component-cb9f654ff-nr592 Total loading time: 0 Render date: 2025-08-07T00:39:54.811Z Has data issue: false hasContentIssue false
  • English
  • Français

Caregiver burden in end-of-life care: Advanced cancer and final stage of dementia

Published online by Cambridge University Press:  10 March 2014

Gema Costa-Requena ,
MaCarmen Espinosa Val  and
Ramon Cristòfol
Gema Costa-Requena*
Affiliation:
Clinical Psychologist. Department of Psychiatry, Hospital Universitari Vall d'Hebron, CIBERSAM, Universitat Autònoma de Barcelona, Barcelona, Spain
MaCarmen Espinosa Val
Affiliation:
Medical Degree. Department of Geriatric Medicine, Antic Hospital Sant Jaume i Santa Magdalena, Consorci Sanitari del Maresme, Mataró, Barcelona, Spain
Ramon Cristòfol
Affiliation:
Medical Degree. Department of Geriatric Medicine, Antic Hospital Sant Jaume i Santa Magdalena, Consorci Sanitari del Maresme, Mataró, Barcelona, Spain
*
Address correspondence and reprint requests to: Gema Costa-Requena, Department of Psychiatry, Hospital Universitari Vall d'Hebron, Passeig Vall d'Hebron, 119-129, 08035 Barcelona, Spain. E-mail: gcosta@vhebron.net.
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Considering two advanced illnesses, cancer and end-stage dementia, the aim of this study was to describe the symptoms of caregiver psychological distress and burden.

Method:

In this cross-sectional study, regression analyses were calculated to explain the influence of psychological distress in caregiver burden. A t test was employed to compare differences between the symptoms of caregiver burden.

Results:

The percentage of psychological distress was similar between caregivers of cancer patients (77.6%) and caregivers of dementia patients (72.4%). In the regression analysis, cancer caregiver distress accounted for 27.9% of the variance in symptoms of burden, while dementia caregiver distress accounted for 24.4% of the variance in symptoms of burden. No significant differences were revealed when comparing caregiver burden symptoms between caregivers of the two advanced illnesses (t = 0.06; p = 0.94).

Significance of Results:

In end-of-life care for patients with dementia, due to significant levels of caregiver distress and burden symptoms, there is a need to support caregivers in the same way as is done for caregivers of cancer patients.

Keywords

Caregiver distressCaregiver burdenAdvanced cancerDementiaPalliative care

Information

Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 583 - 589
Copyright
Copyright © Cambridge University Press 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.)

Article purchase

Temporarily unavailable

References

REFERENCES

Campbell, M.L. & Guzman, J.A. (2004). A proactive approach to improve end-of-life care in a medical intensive care unit for patients with terminal dementia. Critical Care Medicine, 32(9), 1839–1843.Google Scholar
Cordner, Z., Blass, D.M., Rabins, P.V., et al. (2010). Quality of life in nursing home residents with advanced dementia. Journal of the American Geriatrics Society, 58(12), 2394–2400.Google Scholar
Formiga, F., Vidaller, A., Mascaró, J.. et al. (2005). Morir en el hospital por demencia en fase terminal: Análisis de la toma de decisiones después de un programa educativo. Revista Española de Geriatría y Gerontología, 40(1), 18–21.Google Scholar
Formiga, F., Robles, M.J. & Fort, I. (2009). Demencia, una enfermedad evolutiva: Demencia severa. Identificacion de demencia terminal. Revista Española de Geriatría y Gerontología, 44(S2), 2–8.Google Scholar
Given, C.W., Stommel, M., Given, B., et al. (1993). The influence of cancer patients' symptoms and functional states on patients' depression and family caregivers' reaction and depression. Health Psychology, 12(4), 277–285.Google Scholar
Goodman, C., Evans, C., Wilcock, J., et al. (2010). End-of-life care for community-dwelling older people with dementia: An integral review. International Journal of Geriatric Psychiatry, 25, 329–337.Google Scholar
Gort, A.M., March, J., Gómez, X., et al. (2005). Escala de Zarit reducida en cuidados paliativos. Medicina Clínica (Barcelona), 124(17), 651–653.Google Scholar
Grov, E.K., Fossa, S.D., Sorebo, O., et al. (2006). Primary caregivers of cancer patients in the palliative phase: A path analysis of variables influencing their burden. Social Science & Medicine, 63, 2429–2439.Google Scholar
Harding, R., Higginson, I.J. & Donaldson, N. (2003). The relationship between patient characteristics and psychological status in home palliative cancer care. Supportive Care in Cancer, 11, 638–643.Google Scholar
Herrero, M.J., Blanch, J., Peri, J.M., et al. (2003). A validation study of the hospital anxiety and depression scale (HADS) in a Spanish population. General Hospital Psychiatry, 25, 277–283.Google Scholar
Higginson, I.J., Gao, W., Jackson, D., et al. (2010). Short-form Zarit Caregiver Burden Interviews were valid in advanced conditions. Journal of Clinical Epidemiology, 63, 535–542.Google Scholar
Houttekier, D., Cohen, J., Bilsen, J., et al. (2010). Place of death of older persons with dementia: A study in five European countries. Journal of the American Geriatrics Society, 58(4), 751–756.Google Scholar
Hughes, J.C., Jolley, D., Jordan, A., et al. (2007). Palliative care in dementia: Issues and evidence. Advances in Psychiatric Treatment, 13, 251–260.Google Scholar
Kiely, D.K., Prigerson, H. & Mitchell, S.L. (2008). Health care proxy grief symptoms before the death of nursing home residents with advanced dementia. The American Journal of Geriatric Psychiatry, 16(8), 664–673.Google Scholar
Le Fevre, P., Devereux, J., Smith, S., et al. (1999). Screening for psychiatric illness in the palliative care inpatient setting: A comparison between the Hospital Anxiety and Depression Scale and the General Health Questionnaire–12. Palliative Medicine, 13(5), 399–407.Google Scholar
Lewis, G. & Wessely, S. (1990). Comparison of the General Health Questionnaire and the Hospital Anxiety and Depression Scale. The British Journal of Psychiatry, 157, 860–864.Google Scholar
Lobo, A., Pérez-Echeverría, J.M. & Artal, J. (1986). Validity of the scaled version of the General Health Questionnaire (GHQ-28) in a Spanish population. Psychological Medicine, 16, 135–140.Google Scholar
Mahtani-Chugani, V., González-Castro, I., Sáez de Ormijana-Hernández, A., et al. (2010). How to provide care for patients suffering from terminal non-oncological diseases: Barriers to a palliative approach. Palliative Medicine, 24(8), 787–795.Google Scholar
McCarthy, M., Addington-Hall, J. & Altmann, D. (1997).The experience of dying with dementia: A retrospective study. International Journal of Geriatric Psychiatry, 12, 404–409.Google Scholar
Mitchell, S.L., Kiely, D.K. & Hamel, M.B. (2004). Dying with advanced dementia in the nursing home. Archive of Internal Medicine, 164, 321–326.Google Scholar
Mitchell, S.L., Teno, J.M., Kiely, D.K., et al. (2009). The clinical course of advanced dementia. The New England Journal of Medicine, 361(16), 1529–1538.Google Scholar
National Hospice Organization (1996). Medical guidelines for determining prognosis in selected non-cancer diseases. The Hospice Journal, 11, 47–63.Google Scholar
O'Rourke, S., MacHale, S., Signorini, D., et al. (1998). Detecting psychiatric morbidity after stroke: Comparison of the GHQ and the HAD Scale. Stroke, 29, 980–985.Google Scholar
Piers, R., Pautex, S., Curale, V., et al. (2010). Palliative care for the geriatric patient in Europe. Zeitschrift für Gerontologie und Geriatrie, 43, 381–385.Google Scholar
Quintana, J.M., Padierna, A., Esteban, C., et al. (2003). Evaluation of the psychometric characteristics of the Spanish version of the Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 107, 216–221.Google Scholar
Rexach, L. (2012) Palliative care in dementia. European Geriatric Medicine, 3, 131–140.Google Scholar
Sampson, E.L., Gould, V., Lee, D., et al. (2006). Differences in care received by patients with and without dementia who died during acute hospital admission: A retrospective case note study. Age and Ageing, 35, 187–189.Google Scholar
Sampson, E.L., Jones, L., Thuné-Boyle, I.C.V., et al. (2010). Palliative assessment and advanced care planning in severe dementia: An exploratory randomized controlled trial of a complex intervention. Palliative Medicine, 25(3), 197–209.Google Scholar
Schulz, R., Mendelsohn, A.B., Haley, W.E., et al. (2003). End-of-life care and the effects of bereavement on family caregivers of persons with dementia. The New England Journal of Medicine, 349(20), 1936–1942.Google Scholar
Schulz, R., Belle, S.H., Czaja, S.J., et al. (2004). Long-term care placement of dementia patients and caregiver health and well-being. The Journal of the American Medical Association, 292(8), 961–967.Google Scholar
Vernooij-Dassen, M., Draskovic, I. & Downs, M. (2011). Cognitive reframing for carers of people with dementia. The Cochrane Database of Systematic Reviews, 11. CD005318. doi: 10.1002/14651858.CD005318.pub2.Google Scholar
World Health Organization (WHO) (2002). National cancer control programmes: Policies and managerial guidelines. 2nd ed. Geneva: WHO. www.who.int/cancer/palliative/definition/en/.Google Scholar
Zigmond, A.S. & Snaith, R.P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67, 361–370.Google Scholar