Palliative and Supportive Care (2015), 13, 583– 589. # Cambridge University Press, 2014 1478-9515/14 doi:10.1017/S1478951513001259
Caregiver burden in end-of-life care: Advanced cancer and final stage of dementia
GEMA COSTA-REQUENA, ` FOL, MD2 RAMON CRISTO
1 MSC,
MaCARMEN ESPINOSA VAL,
MD,
2
AND
1
Clinical Psychologist. Department of Psychiatry, Hospital Universitari Vall d’Hebron, CIBERSAM, Universitat Auto`noma de Barcelona, Barcelona, Spain Medical Degree. Department of Geriatric Medicine, Antic Hospital Sant Jaume i Santa Magdalena, Consorci Sanitari del Maresme, Mataro´, Barcelona, Spain
2
(RECEIVED August 8, 2013; ACCEPTED August 29, 2013)
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 ¼ 0.06; p ¼ 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 distress, Caregiver burden, Advanced cancer, Dementia, Palliative care INTRODUCTION
and relieving physical, psychosocial, and spiritual issues that cause suffering (WHO, 2002). This situation has been complicated due to the absence of a straightforward model of how palliative care should be provided to patients with advanced dementia (Hughes et al., 2007). Palliative care has been proved to be beneficial for patients with advanced dementia when they experience a range of complicated symptoms and the suffering associated with a short life expectancy. These symptoms were similar to the progression of other chronic diseases in patients with reduced survival rates (Rexach, 2012). The pattern of distressing symptoms in advanced dementia is similar to that in patients with terminal cancer, both of which should be understood as precursors of death (Mitchell et al., 2009). A retrospective study comparing symptoms suffered in the final year of life between
Offering psychological support to families and caregivers is an integral element of palliative care for advanced cancer patients. The challenge for healthcare professionals is to make palliative care treatment accessible to all patients with advanced life-threatening illnesses, including elderly patients with such progressive diseases as dementia, in order to guarantee quality of care at the end of life (WHO, 2002). The World Health Organization (WHO), considers palliative care an interdisciplinary approach provided to improve the quality of end-of-life care for patients and their families that includes preventing Address correspondence and reprint requests to: Gema CostaRequena, Department of Psychiatry, Hospital Universitari Vall d’Hebron, Passeig Vall d’Hebron, 119-129, 08035 Barcelona, Spain. E-mail: [email protected].
583
584 dementia patients and cancer patients showed common symptom burden and similar health care needs (McCarthy et al., 1997). However, while the advanced stages of dementia may be recognized as a terminal condition, healthcare professionals often fail to adopt a palliative approach to patient care that would recognize the end of life in advanced dementia (Campbell et al., 2004; Mitchell et al., 2004; Formiga et al., 2005). The failure to recognize these key indicators of imminent death in dementia could explain why deaths from dementia are more likely to take place in a nursing home (61%) compared with deaths from cancer, which frequently (70%) occurred at home, in a hospital, or in a hospice, considering that these were institutional forms of palliative care (Houttekier et al., 2010). With regard to the quality of end-of-life care in the elderly in Europe, patients dying from dementia or from nonmalignant diseases are most frequently left without support from specialized palliative healthcare providers, while patients dying from cancer are not. In addition, support for family caregivers may not be viewed as a priority (McCarthy et al., 1997; Piers et al., 2010). Sampson and colleagues (2006) reported that patients with end-stage dementia were less likely referred to palliative care teams than patients with other non-oncological end-stage disease (9 vs. 25%), and that dementia patients were prescribed fewer palliative medications (28 vs. 51%). Some investigators have found that it is important to provide measures of comfort and improve patient quality of life (e.g., Cordner et al., 2010) for patients with advanced dementia and a terminal prognosis, since this lessens the psychological distress of their families (Rexach, 2012; Kiely et al., 2008), as worsened patient discomfort contributes to increased caregiver distress and burden of caring (Given et al., 1993; Harding et al., 2003). Especially in dementia patients, palliative care should not merely provide patient comfort in terms of symptom relief, but it should also include their families, who often have suffered the burden of care for many years. Likewise, the caregivers’ emotional fragility can be affected by the unpredictable course of the disease. The periods of stability in dementia patients can be interrupted by acute exacerbations, in contrast to the usually inevitable but predictable decline of advanced cancer. Caregiver distress includes the emotional state felt with respect to an ill relative. These feelings can encompass anger, anxiety, guilt, and depression. Caregiver burden is related to the impact of taking care of a relative (Vernooij-Dassen et al., 2011). This is a multidimensional construct that involves the physical, social, financial, and emotional com-
Costa-Requena et al.
ponents of a caregiver’s function (Higginson et al., 2010). Based on the above-mentioned studies, there is a great need for palliative care at the end of life for patients with dementia and their caregivers that are not being met, or even being accorded due regard. Our study aimed to describe caregivers’ psychological distress during end-of-life care in cancer and the final stage of dementia, and to compare caregiver burden related to these two advanced illnesses. METHODS Our study included caregivers recruited at the Antic Hospital Sant Jaume i Santa Magdalena, which is a socio-health center in Barcelona, Spain. Participants were identified from two departments at the hospital—palliative care and psychogeriatrics. Data were recorded on patients admitted to each unit from January 2009 to December 2011. To be eligible, participants needed to: (1) be the primary caregiver (identified by the patient or by nursing staff), the person most involved in actual care; (2) have an ill relative admitted to an acute medical ward with either end-stage metastatic cancer or advanced primary dementia whose prognosis was considered to be less than 6 months; (3) be 18 years of age or older; and (4) be able to understand the study and read the questionnaires. An assessment was done at least one day after the patient was admitted to the hospital. The criteria for defining end-stage dementia were based on the medical guidelines of the National Hospice and Palliative Care Organization for determining a prognosis of dementia and eligibility for hospice care. This included a Functional Assessment Staging (FAST) of stage 7b or worse, as determined by a physician, in addition to the presence of medical complications (e.g., aspiration pneumonia, sepsis, pressures ulcers) (National Hospice Organization, 1996). Permission to conduct this study was received from the institutional review board at the Antic Hospital and was approved by their research ethics committees. All participants enrolled in the study provided a signed informed consent form. Procedure Family caregivers were recruited and invited to participate in the study. All eligible caregivers were informed about the objectives of the study before being asked to complete the questionnaires, and then signed consent forms. Caregivers were interviewed by a clinical psychologist in a private area without the patients being present. Subjects offered data on their sociodemographic characteristics and
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Caregiver burden in end-of-life care
were asked to complete the self-reporting instruments. Carers completed questionnaires by themselves, with an interviewer available for questions at all times. The assessment protocol lasted 10 to 20 minutes. Measurements The demographic questionnaire collected data about the patient’s sociodemographic characteristics and medical status. Patient characteristics and diseaserelated variables included gender, age, diagnosis, and length of stay in the hospital. The characteristics of caregivers were registered—including gender, age, and relationship—along with the patient. Caregiver burden was assessed with the Zarit Burden Inventory (ZBI), short form version. It is a validated seven-item questionnaire that has been found to be appropriate for measuring caregiver burden in palliative care (Higginson et al., 2010). Responses to each item were on a five-point (0 –4) Likert scale. Gort and colleagues (2005) found the ZBI-7 short form to be strongly valid and internally consistent, identifying a cutoff score of 17 or higher to discriminate clinically significant burden. Different instruments for assessment of psychological distress were utilized in each caregiver group, because our study was part of a previous project about caregiver psychological distress in a palliative care unit. Caregivers of dementia patients completed the General Health Questionnaire (GHQ-28), which is employed to assess morbidity in four dimensions: depression, anxiety-related symptoms, social dysfunction, and somatic symptoms (seven items each). The items were rated on a four-point Likert scale. A cutoff score of 5/6 was utilized to discriminate clinically significant morbidity, which had been validated in a Spanish population with acceptable psychometric properties (Lobo et al., 1986). In cancer patient caregivers, psychological distress was measured with the Hospital Anxiety and Depression Scale (HADS) (Zigmond & Snaith, 1983). This is a 14-item instrument to measure depression and anxiety symptomatology. Each item was rated on a four-point scale from 0 to 3. The HADS has been previously validated and has good internal consistency with Spanish cancer patients (Quintana et al., 2003). An optimal cutoff score of 12 or higher was used to identify clinically significant distress in a Spanish population (Herrero et al., 2003). Although psychological distress was measured for each group of caregivers with different instruments, empirical studies have evidenced no significant differences between the GHQ and the HADS (z ¼ 0.13; p ¼ 0.9) in their ability to detect minor psychiatric
disorders (Lewis & Wessely, 1990); nor have any significant differences been evinced between the GHQ and the HADS depression (z ¼ –0.58; p ¼ 0.56) and anxiety (z ¼ –01.15; p ¼ 0.25) subscales in their ability to detect clinical cases of depression or anxiety symptomatology (O’Rourke et al., 1998). Moreover, no significant differences were found in a palliative care setting between the two screening instruments for detection of psychological distress (Le Fevre et al., 1999). Statistical Analysis Descriptive statistics have been reported to characterize the sample. Considering each caregiver sample (cancer and dementia patients) separately, linear regression analyses were utilized to calculate the variance explained by psychological distress in the dependent variable (caregiver burden). Regression analyses were performed controlling for caregiver age, gender, and relationship to patients. A t test was then used to compare differences between samples in terms of caregiver burden. For all statistical tests, a p score ,0.01 was considered statistically significant. Statistical analyses were conducted using the Statistical Package for Social Sciences (SPSS, version 15). RESULTS Subjects Originally, 69 caregivers of dementia patients and 78 caregivers of cancer patients were approached, and 9 dementia caregivers and 11 cancer caregivers declined to participate. The main reasons for not filling out the questionnaire included disinterest in the study (n ¼ 3 in each caregiver sample), patient’s death (n ¼ 5 in dementia, n ¼ 7 in cancer), and or failure to hand in questionnaires (n ¼ 1 in each caregiver sample). The remaining 60 (86.95%) caregivers of dementia patients and 67 (85.89%) of cancer patients participated. The median age of patients was 76.7 years (SD ¼ 12.42); there were 73 men (57.5%). Regarding the patients admitted, 118 died (92.9%) in hospital; the patients discharged alive were either sent home or transferred to other departments of the hospital. The mean duration of hospital stay for all patients was 46.68 days (SD ¼ 65.27). These data are presented in Table 1. The median age of caregivers was 57.38 years (SD ¼ 12.90); there were 97 women (76.4%). Their relationships to patients were mainly described as child 67 (52.8%) and spouse 49 (38.6%); other relationships included grandchild, niece, and nephew. Nonsignificant
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Costa-Requena et al.
Table 1. Patient sociodemographic and clinical characteristics
Age Mean (SD) Median Range Time admitted (days) Mean (SD) Median Range Gender Male Female Cause of dementia Alzheimer’s disease Vascular dementia Mixed dementia Parkinson’s disease Other Primary tumor site Gastrointestinal Respiratory Head and neck Genitourinary Other tumors Site of Source Hospital Home Other Institution Outcome of admissions Died Discharged home Still admitted
Cancer Patients
Dementia Patients
76.48 (12.70) 77 19– 98
76.95 (12.30) 77 19–98
37.37 (41.18) 22 3 –202
59.40 (87.12) 31 5– 452
n 49 18
% 73.1 26.9
n 24 36
% 40 60
– – – – –
– – – – –
30 13 10 3 4
50 21.7 16.7 5 6.6
28 14 4 17 4
41.8 20.8 6 25.4 6
– – – – –
– – – – –
45 18 4
67.2 26.9 6
38 8 4
76 16 8
64 3 –
95.5 4.5 –
54 2 4
90 3.3 6.7
differences between cancer and dementia patients and caregiver sociodemographic characteristics were found, even considering the time admitted into the unit, which appeared longer for dementia patients. None of the comorbidity variables (time admitted, referral to admission, and admission outcome) were significantly correlated with caregiver burden. Table 2
provides a summary of caregiver sociodemographic characteristics for each sample. Caregiver Psychological Distress Psychological morbidity among cancer caregivers was found in greater proportion (77.6%, n ¼ 52)
Table 2. Caregiver sociodemographic characteristics
Age Mean (SD) Median Range Gender Male Female Caregiver’s relationship Spouse Son/daughter Other
Caregivers, Cancer Patients
Caregivers, Dementia Patients
56.96 (13) 57 19– 81
57.85 (12.89) 59.5 19–81
n 15 52
% 22.4 77.6
n 15 45
% 25 75
25 35 7
37.3 52.2 10.5
24 32 4
40 53.2 6.8
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Caregiver burden in end-of-life care
along with probable clinically significant morbidity when using a total HADS cutoff score 12; the mean total score for HADS was 20.5 (SD ¼ 9.32). A multiple regression analysis was conducted to evaluate the contribution of psychological distress to caregiver burden. Multicollinearity was not a concern based on its indicators, with condition index values of 4.64 – 3.29. Regarding the regression analysis, caregiver distress accounted for 27.9% of variance in caregiver burden (F1, 66 ¼ 26.51; p , 0.01). These findings (see Table 3) pointed to the fact that caregiver distress for cancer patients was a significant predictor of burden symptomatology. With regard to caregivers of dementia patients, 72.4% (n ¼ 42) of participants had probable clinical symptoms using a GHQ-28 cutoff score .5; the mean score for morbidity symptoms on GHQ-28 was 9.01 (SD ¼ 6.07). When considering the regression analysis, caregiver distress accounted for 24.4% of variance in caregiver burden (F1, 66 ¼ 19.10; p , 0.01). This result indicated that caregiver distress in dementia patients was a significant predictor of burden symptomatology, as shown in Table 3.
Comparing Caregiver Burden Considering caregiver burden, 48.3% (n ¼ 28) of caregivers for dementia patients had significant burden symptoms using a ZBI cutoff score 17 (Gort et al., 2005). Similarly, in caregivers for cancer patients, 50.7% (n ¼ 34) had significant burden symptoms. Using t tests to compare caregiver burden, no significant differences in burden symptoms were observed (t ¼ 0.06; p ¼ 0.94) in ZBI-7 score between caregivers for dementia (ZBI-7 mean, 17.09, SD ¼ 5.62) and cancer patients (ZBI-7 mean, 17.03, SD ¼ 6.88). DISCUSSION The current study underlines the fact that caregivers for cancer and dementia patients at the end of life suffer a similar degree of caregiver burden symptoms. Moreover, a high percentage of caregivers (72 – 77%) demonstrated significant psychoTable 3. Regression analysis predicting caregiver burden Variable Cancer caregiver distress Dementia caregiver distress **p , 0.01.
b
t
0.39 0.47
5.15** 4.37**
logical distress in each advanced disease. These data support the notion of providing care for those who are caring for patients with advanced disease. The prevalence of psychiatric morbidity in caregivers of patients with advanced dementia (43%) was greater compared to some other studies (e.g., Schulz et al., 2003) and was similar (84%) to home caregivers of cancer patients receiving palliative treatment. Our study demonstrates that the level of caregiver distress is an important predictor of caregiver burden in patients’ final stages of dementia or advanced cancer. Previous studies found similar results, that is, the level of caregiver psychological distress is significantly associated with caregiver burden in cancer patients with palliative treatment (Grov et al., 2006). Our findings indicate that caregiver clinical burden symptoms are fewer (48–51%) than that reported in other studies (72%) when caregiver burden is calculated only by a subjective assessment (Schulz et al., 2003). Caregiver burden did not differ significantly between the two types of advanced disease, cancer and dementia. Furthermore, family caregivers of end-stage dementia patients have more than symptoms of discomfort during the final stages of the disease. This is associated with the behaviors typical of the disease, the loss experienced when the patient is transferred to a hospice or admitted to hospital, and factors involved in end-of-life care decision making (Goodman et al., 2010). Caregiver burden among those caring for patients with dementia has been shown to be a predictor of institutional placement (Schulz et al., 2004). Likewise, institutionalization of dementia patients has been associated with greater caregiver psychological distress (specifically, pre-death grieving) (Kiely et al., 2008; Sampson et al., 2010). Psychological distress among caregivers of dementia patients may be exacerbated by patient stability, which leads to prolongation of the terminal phase due to improved patient comfort and prevention of complications (Formiga et al., 2009). A holistic approach is required in palliative care for patients at the final stage of dementia, similar to that for advanced cancer patients. In addition to symptom management when a patient is admitted to hospital, support for family caregivers of dementia patients is essential. Support for caregiver distress, providing interventions to engage families in structured discussion for end-of-life planning, should also be considered (Sampson et al., 2010; MahtaniChugani et al., 2010). Further, family caregivers of patients with dementia who are approaching the end of life have equivalent needs in response to bereavement as caregivers of patients dying from other diseases that could require psychological support (Schulz et al., 2003).
588 Inclusion of palliative care in advanced dementia is a hallmark of good end-of-life care. It requires a well-rounded approach and interdisciplinary interventions that may improve the quality of care to attenuate symptoms, along with attention to the full range of needs of the dying patient and consideration of the psychosocial concerns arising in caregivers when living with a patient’s life-limiting illness (WHO, 2002). LIMITATIONS Our study has some limitations. First, we employed a cross-sectional design that looked at random points during patients’ hospitalization, and so we were bound to miss changes in caregiver psychological distress and burden symptoms over time. Second, we did not analyze the relevance of patient physical comorbidities to caregiver burden and distress and how they might affect progression of the disease, nor did we analyze the sociodemographic characteristics of caregivers that could have influenced their burden. Third, many end-of-life outcomes that might affect caregiver psychological distress were not included, such as their decision-making process related to patient end-of-life care. Finally, the data were collected in only one Southern European country. Nevertheless, although there are limitations to our study, the current findings highlight the need for psychological support for family caregivers of patients with advanced dementia, recognizing that this condition is a terminal illness with similar needs as in advanced oncological disease. ACKNOWLEDGMENTS The authors thank those caregivers who kindly volunteered to participate in our study and to share their experiences. The authors also thank all the staff of the socio-health center at Antic Hospital Sant Jaume i Santa Magdalena for their kind and gracious support in this research.
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. 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. Formiga, F., Vidaller, A., Mascaro´, J.. et al. (2005). Morir en el hospital por demencia en fase terminal: Ana´lisis de la toma de decisiones despue´s de un programa educativo. Revista Espan˜ola de Geriatrı´a y Gerontologı´a, 40(1), 18–21. Formiga, F., Robles, M.J. & Fort, I. (2009). Demencia, una enfermedad evolutiva: Demencia severa. Identificacion
Costa-Requena et al. de demencia terminal. Revista Espan˜ola de Geriatrı´a y Gerontologı´a, 44(S2), 2 –8. 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. Goodman, C., Evans, C., Wilcock, J., et al. (2010). End-oflife care for community-dwelling older people with dementia: An integral review. International Journal of Geriatric Psychiatry, 25, 329– 337. Gort, A.M., March, J., Go´mez, X., et al. (2005). Escala de Zarit reducida en cuidados paliativos. Medicina Clı´nica (Barcelona), 124(17), 651 –653. 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. 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. 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. Higginson, I.J., Gao, W., Jackson, D., et al. (2010). Shortform Zarit Caregiver Burden Interviews were valid in advanced conditions. Journal of Clinical Epidemiology, 63, 535 –542. 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. Hughes, J.C., Jolley, D., Jordan, A., et al. (2007). Palliative care in dementia: Issues and evidence. Advances in Psychiatric Treatment, 13, 251– 260. 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. 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. 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. Lobo, A., Pe´rez-Echeverrı´a, 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. Mahtani-Chugani, V., Gonza´lez-Castro, I., Sa´ez de Ormijana-Herna´ndez, 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. 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. 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.
Caregiver burden in end-of-life care 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. National Hospice Organization (1996). Medical guidelines for determining prognosis in selected non-cancer diseases. The Hospice Journal, 11, 47–63. 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. Piers, R., Pautex, S., Curale, V., et al. (2010). Palliative care for the geriatric patient in Europe. Zeitschrift fu¨r Gerontologie und Geriatrie, 43, 381– 385. 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. Rexach, L. (2012) Palliative care in dementia. European Geriatric Medicine, 3, 131 –140. 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.
589 Sampson, E.L., Jones, L., Thune´-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. 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. 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. 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. World Health Organization (WHO) (2002). National cancer control programmes: Policies and managerial guidelines. 2nd ed. Geneva: WHO. www.who.int/cancer/ palliative/definition/en/. Zigmond, A.S. & Snaith, R.P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67, 361 –370.
Caregiver burden in end-of-life care: Advanced cancer and final stage of dementia
GEMA COSTA-REQUENA, ` FOL, MD2 RAMON CRISTO
1 MSC,
MaCARMEN ESPINOSA VAL,
MD,
2
AND
1
Clinical Psychologist. Department of Psychiatry, Hospital Universitari Vall d’Hebron, CIBERSAM, Universitat Auto`noma de Barcelona, Barcelona, Spain Medical Degree. Department of Geriatric Medicine, Antic Hospital Sant Jaume i Santa Magdalena, Consorci Sanitari del Maresme, Mataro´, Barcelona, Spain
2
(RECEIVED August 8, 2013; ACCEPTED August 29, 2013)
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 ¼ 0.06; p ¼ 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 distress, Caregiver burden, Advanced cancer, Dementia, Palliative care INTRODUCTION
and relieving physical, psychosocial, and spiritual issues that cause suffering (WHO, 2002). This situation has been complicated due to the absence of a straightforward model of how palliative care should be provided to patients with advanced dementia (Hughes et al., 2007). Palliative care has been proved to be beneficial for patients with advanced dementia when they experience a range of complicated symptoms and the suffering associated with a short life expectancy. These symptoms were similar to the progression of other chronic diseases in patients with reduced survival rates (Rexach, 2012). The pattern of distressing symptoms in advanced dementia is similar to that in patients with terminal cancer, both of which should be understood as precursors of death (Mitchell et al., 2009). A retrospective study comparing symptoms suffered in the final year of life between
Offering psychological support to families and caregivers is an integral element of palliative care for advanced cancer patients. The challenge for healthcare professionals is to make palliative care treatment accessible to all patients with advanced life-threatening illnesses, including elderly patients with such progressive diseases as dementia, in order to guarantee quality of care at the end of life (WHO, 2002). The World Health Organization (WHO), considers palliative care an interdisciplinary approach provided to improve the quality of end-of-life care for patients and their families that includes preventing Address correspondence and reprint requests to: Gema CostaRequena, Department of Psychiatry, Hospital Universitari Vall d’Hebron, Passeig Vall d’Hebron, 119-129, 08035 Barcelona, Spain. E-mail: [email protected].
583
584 dementia patients and cancer patients showed common symptom burden and similar health care needs (McCarthy et al., 1997). However, while the advanced stages of dementia may be recognized as a terminal condition, healthcare professionals often fail to adopt a palliative approach to patient care that would recognize the end of life in advanced dementia (Campbell et al., 2004; Mitchell et al., 2004; Formiga et al., 2005). The failure to recognize these key indicators of imminent death in dementia could explain why deaths from dementia are more likely to take place in a nursing home (61%) compared with deaths from cancer, which frequently (70%) occurred at home, in a hospital, or in a hospice, considering that these were institutional forms of palliative care (Houttekier et al., 2010). With regard to the quality of end-of-life care in the elderly in Europe, patients dying from dementia or from nonmalignant diseases are most frequently left without support from specialized palliative healthcare providers, while patients dying from cancer are not. In addition, support for family caregivers may not be viewed as a priority (McCarthy et al., 1997; Piers et al., 2010). Sampson and colleagues (2006) reported that patients with end-stage dementia were less likely referred to palliative care teams than patients with other non-oncological end-stage disease (9 vs. 25%), and that dementia patients were prescribed fewer palliative medications (28 vs. 51%). Some investigators have found that it is important to provide measures of comfort and improve patient quality of life (e.g., Cordner et al., 2010) for patients with advanced dementia and a terminal prognosis, since this lessens the psychological distress of their families (Rexach, 2012; Kiely et al., 2008), as worsened patient discomfort contributes to increased caregiver distress and burden of caring (Given et al., 1993; Harding et al., 2003). Especially in dementia patients, palliative care should not merely provide patient comfort in terms of symptom relief, but it should also include their families, who often have suffered the burden of care for many years. Likewise, the caregivers’ emotional fragility can be affected by the unpredictable course of the disease. The periods of stability in dementia patients can be interrupted by acute exacerbations, in contrast to the usually inevitable but predictable decline of advanced cancer. Caregiver distress includes the emotional state felt with respect to an ill relative. These feelings can encompass anger, anxiety, guilt, and depression. Caregiver burden is related to the impact of taking care of a relative (Vernooij-Dassen et al., 2011). This is a multidimensional construct that involves the physical, social, financial, and emotional com-
Costa-Requena et al.
ponents of a caregiver’s function (Higginson et al., 2010). Based on the above-mentioned studies, there is a great need for palliative care at the end of life for patients with dementia and their caregivers that are not being met, or even being accorded due regard. Our study aimed to describe caregivers’ psychological distress during end-of-life care in cancer and the final stage of dementia, and to compare caregiver burden related to these two advanced illnesses. METHODS Our study included caregivers recruited at the Antic Hospital Sant Jaume i Santa Magdalena, which is a socio-health center in Barcelona, Spain. Participants were identified from two departments at the hospital—palliative care and psychogeriatrics. Data were recorded on patients admitted to each unit from January 2009 to December 2011. To be eligible, participants needed to: (1) be the primary caregiver (identified by the patient or by nursing staff), the person most involved in actual care; (2) have an ill relative admitted to an acute medical ward with either end-stage metastatic cancer or advanced primary dementia whose prognosis was considered to be less than 6 months; (3) be 18 years of age or older; and (4) be able to understand the study and read the questionnaires. An assessment was done at least one day after the patient was admitted to the hospital. The criteria for defining end-stage dementia were based on the medical guidelines of the National Hospice and Palliative Care Organization for determining a prognosis of dementia and eligibility for hospice care. This included a Functional Assessment Staging (FAST) of stage 7b or worse, as determined by a physician, in addition to the presence of medical complications (e.g., aspiration pneumonia, sepsis, pressures ulcers) (National Hospice Organization, 1996). Permission to conduct this study was received from the institutional review board at the Antic Hospital and was approved by their research ethics committees. All participants enrolled in the study provided a signed informed consent form. Procedure Family caregivers were recruited and invited to participate in the study. All eligible caregivers were informed about the objectives of the study before being asked to complete the questionnaires, and then signed consent forms. Caregivers were interviewed by a clinical psychologist in a private area without the patients being present. Subjects offered data on their sociodemographic characteristics and
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Caregiver burden in end-of-life care
were asked to complete the self-reporting instruments. Carers completed questionnaires by themselves, with an interviewer available for questions at all times. The assessment protocol lasted 10 to 20 minutes. Measurements The demographic questionnaire collected data about the patient’s sociodemographic characteristics and medical status. Patient characteristics and diseaserelated variables included gender, age, diagnosis, and length of stay in the hospital. The characteristics of caregivers were registered—including gender, age, and relationship—along with the patient. Caregiver burden was assessed with the Zarit Burden Inventory (ZBI), short form version. It is a validated seven-item questionnaire that has been found to be appropriate for measuring caregiver burden in palliative care (Higginson et al., 2010). Responses to each item were on a five-point (0 –4) Likert scale. Gort and colleagues (2005) found the ZBI-7 short form to be strongly valid and internally consistent, identifying a cutoff score of 17 or higher to discriminate clinically significant burden. Different instruments for assessment of psychological distress were utilized in each caregiver group, because our study was part of a previous project about caregiver psychological distress in a palliative care unit. Caregivers of dementia patients completed the General Health Questionnaire (GHQ-28), which is employed to assess morbidity in four dimensions: depression, anxiety-related symptoms, social dysfunction, and somatic symptoms (seven items each). The items were rated on a four-point Likert scale. A cutoff score of 5/6 was utilized to discriminate clinically significant morbidity, which had been validated in a Spanish population with acceptable psychometric properties (Lobo et al., 1986). In cancer patient caregivers, psychological distress was measured with the Hospital Anxiety and Depression Scale (HADS) (Zigmond & Snaith, 1983). This is a 14-item instrument to measure depression and anxiety symptomatology. Each item was rated on a four-point scale from 0 to 3. The HADS has been previously validated and has good internal consistency with Spanish cancer patients (Quintana et al., 2003). An optimal cutoff score of 12 or higher was used to identify clinically significant distress in a Spanish population (Herrero et al., 2003). Although psychological distress was measured for each group of caregivers with different instruments, empirical studies have evidenced no significant differences between the GHQ and the HADS (z ¼ 0.13; p ¼ 0.9) in their ability to detect minor psychiatric
disorders (Lewis & Wessely, 1990); nor have any significant differences been evinced between the GHQ and the HADS depression (z ¼ –0.58; p ¼ 0.56) and anxiety (z ¼ –01.15; p ¼ 0.25) subscales in their ability to detect clinical cases of depression or anxiety symptomatology (O’Rourke et al., 1998). Moreover, no significant differences were found in a palliative care setting between the two screening instruments for detection of psychological distress (Le Fevre et al., 1999). Statistical Analysis Descriptive statistics have been reported to characterize the sample. Considering each caregiver sample (cancer and dementia patients) separately, linear regression analyses were utilized to calculate the variance explained by psychological distress in the dependent variable (caregiver burden). Regression analyses were performed controlling for caregiver age, gender, and relationship to patients. A t test was then used to compare differences between samples in terms of caregiver burden. For all statistical tests, a p score ,0.01 was considered statistically significant. Statistical analyses were conducted using the Statistical Package for Social Sciences (SPSS, version 15). RESULTS Subjects Originally, 69 caregivers of dementia patients and 78 caregivers of cancer patients were approached, and 9 dementia caregivers and 11 cancer caregivers declined to participate. The main reasons for not filling out the questionnaire included disinterest in the study (n ¼ 3 in each caregiver sample), patient’s death (n ¼ 5 in dementia, n ¼ 7 in cancer), and or failure to hand in questionnaires (n ¼ 1 in each caregiver sample). The remaining 60 (86.95%) caregivers of dementia patients and 67 (85.89%) of cancer patients participated. The median age of patients was 76.7 years (SD ¼ 12.42); there were 73 men (57.5%). Regarding the patients admitted, 118 died (92.9%) in hospital; the patients discharged alive were either sent home or transferred to other departments of the hospital. The mean duration of hospital stay for all patients was 46.68 days (SD ¼ 65.27). These data are presented in Table 1. The median age of caregivers was 57.38 years (SD ¼ 12.90); there were 97 women (76.4%). Their relationships to patients were mainly described as child 67 (52.8%) and spouse 49 (38.6%); other relationships included grandchild, niece, and nephew. Nonsignificant
586
Costa-Requena et al.
Table 1. Patient sociodemographic and clinical characteristics
Age Mean (SD) Median Range Time admitted (days) Mean (SD) Median Range Gender Male Female Cause of dementia Alzheimer’s disease Vascular dementia Mixed dementia Parkinson’s disease Other Primary tumor site Gastrointestinal Respiratory Head and neck Genitourinary Other tumors Site of Source Hospital Home Other Institution Outcome of admissions Died Discharged home Still admitted
Cancer Patients
Dementia Patients
76.48 (12.70) 77 19– 98
76.95 (12.30) 77 19–98
37.37 (41.18) 22 3 –202
59.40 (87.12) 31 5– 452
n 49 18
% 73.1 26.9
n 24 36
% 40 60
– – – – –
– – – – –
30 13 10 3 4
50 21.7 16.7 5 6.6
28 14 4 17 4
41.8 20.8 6 25.4 6
– – – – –
– – – – –
45 18 4
67.2 26.9 6
38 8 4
76 16 8
64 3 –
95.5 4.5 –
54 2 4
90 3.3 6.7
differences between cancer and dementia patients and caregiver sociodemographic characteristics were found, even considering the time admitted into the unit, which appeared longer for dementia patients. None of the comorbidity variables (time admitted, referral to admission, and admission outcome) were significantly correlated with caregiver burden. Table 2
provides a summary of caregiver sociodemographic characteristics for each sample. Caregiver Psychological Distress Psychological morbidity among cancer caregivers was found in greater proportion (77.6%, n ¼ 52)
Table 2. Caregiver sociodemographic characteristics
Age Mean (SD) Median Range Gender Male Female Caregiver’s relationship Spouse Son/daughter Other
Caregivers, Cancer Patients
Caregivers, Dementia Patients
56.96 (13) 57 19– 81
57.85 (12.89) 59.5 19–81
n 15 52
% 22.4 77.6
n 15 45
% 25 75
25 35 7
37.3 52.2 10.5
24 32 4
40 53.2 6.8
587
Caregiver burden in end-of-life care
along with probable clinically significant morbidity when using a total HADS cutoff score 12; the mean total score for HADS was 20.5 (SD ¼ 9.32). A multiple regression analysis was conducted to evaluate the contribution of psychological distress to caregiver burden. Multicollinearity was not a concern based on its indicators, with condition index values of 4.64 – 3.29. Regarding the regression analysis, caregiver distress accounted for 27.9% of variance in caregiver burden (F1, 66 ¼ 26.51; p , 0.01). These findings (see Table 3) pointed to the fact that caregiver distress for cancer patients was a significant predictor of burden symptomatology. With regard to caregivers of dementia patients, 72.4% (n ¼ 42) of participants had probable clinical symptoms using a GHQ-28 cutoff score .5; the mean score for morbidity symptoms on GHQ-28 was 9.01 (SD ¼ 6.07). When considering the regression analysis, caregiver distress accounted for 24.4% of variance in caregiver burden (F1, 66 ¼ 19.10; p , 0.01). This result indicated that caregiver distress in dementia patients was a significant predictor of burden symptomatology, as shown in Table 3.
Comparing Caregiver Burden Considering caregiver burden, 48.3% (n ¼ 28) of caregivers for dementia patients had significant burden symptoms using a ZBI cutoff score 17 (Gort et al., 2005). Similarly, in caregivers for cancer patients, 50.7% (n ¼ 34) had significant burden symptoms. Using t tests to compare caregiver burden, no significant differences in burden symptoms were observed (t ¼ 0.06; p ¼ 0.94) in ZBI-7 score between caregivers for dementia (ZBI-7 mean, 17.09, SD ¼ 5.62) and cancer patients (ZBI-7 mean, 17.03, SD ¼ 6.88). DISCUSSION The current study underlines the fact that caregivers for cancer and dementia patients at the end of life suffer a similar degree of caregiver burden symptoms. Moreover, a high percentage of caregivers (72 – 77%) demonstrated significant psychoTable 3. Regression analysis predicting caregiver burden Variable Cancer caregiver distress Dementia caregiver distress **p , 0.01.
b
t
0.39 0.47
5.15** 4.37**
logical distress in each advanced disease. These data support the notion of providing care for those who are caring for patients with advanced disease. The prevalence of psychiatric morbidity in caregivers of patients with advanced dementia (43%) was greater compared to some other studies (e.g., Schulz et al., 2003) and was similar (84%) to home caregivers of cancer patients receiving palliative treatment. Our study demonstrates that the level of caregiver distress is an important predictor of caregiver burden in patients’ final stages of dementia or advanced cancer. Previous studies found similar results, that is, the level of caregiver psychological distress is significantly associated with caregiver burden in cancer patients with palliative treatment (Grov et al., 2006). Our findings indicate that caregiver clinical burden symptoms are fewer (48–51%) than that reported in other studies (72%) when caregiver burden is calculated only by a subjective assessment (Schulz et al., 2003). Caregiver burden did not differ significantly between the two types of advanced disease, cancer and dementia. Furthermore, family caregivers of end-stage dementia patients have more than symptoms of discomfort during the final stages of the disease. This is associated with the behaviors typical of the disease, the loss experienced when the patient is transferred to a hospice or admitted to hospital, and factors involved in end-of-life care decision making (Goodman et al., 2010). Caregiver burden among those caring for patients with dementia has been shown to be a predictor of institutional placement (Schulz et al., 2004). Likewise, institutionalization of dementia patients has been associated with greater caregiver psychological distress (specifically, pre-death grieving) (Kiely et al., 2008; Sampson et al., 2010). Psychological distress among caregivers of dementia patients may be exacerbated by patient stability, which leads to prolongation of the terminal phase due to improved patient comfort and prevention of complications (Formiga et al., 2009). A holistic approach is required in palliative care for patients at the final stage of dementia, similar to that for advanced cancer patients. In addition to symptom management when a patient is admitted to hospital, support for family caregivers of dementia patients is essential. Support for caregiver distress, providing interventions to engage families in structured discussion for end-of-life planning, should also be considered (Sampson et al., 2010; MahtaniChugani et al., 2010). Further, family caregivers of patients with dementia who are approaching the end of life have equivalent needs in response to bereavement as caregivers of patients dying from other diseases that could require psychological support (Schulz et al., 2003).
588 Inclusion of palliative care in advanced dementia is a hallmark of good end-of-life care. It requires a well-rounded approach and interdisciplinary interventions that may improve the quality of care to attenuate symptoms, along with attention to the full range of needs of the dying patient and consideration of the psychosocial concerns arising in caregivers when living with a patient’s life-limiting illness (WHO, 2002). LIMITATIONS Our study has some limitations. First, we employed a cross-sectional design that looked at random points during patients’ hospitalization, and so we were bound to miss changes in caregiver psychological distress and burden symptoms over time. Second, we did not analyze the relevance of patient physical comorbidities to caregiver burden and distress and how they might affect progression of the disease, nor did we analyze the sociodemographic characteristics of caregivers that could have influenced their burden. Third, many end-of-life outcomes that might affect caregiver psychological distress were not included, such as their decision-making process related to patient end-of-life care. Finally, the data were collected in only one Southern European country. Nevertheless, although there are limitations to our study, the current findings highlight the need for psychological support for family caregivers of patients with advanced dementia, recognizing that this condition is a terminal illness with similar needs as in advanced oncological disease. ACKNOWLEDGMENTS The authors thank those caregivers who kindly volunteered to participate in our study and to share their experiences. The authors also thank all the staff of the socio-health center at Antic Hospital Sant Jaume i Santa Magdalena for their kind and gracious support in this research.
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