Depression of Family Caregivers Is Associated with Disagreements on Life-Sustaining Preferences for Treating Patients with Dementia

Abstract

BackgroundFamily caregivers may not agree with patients with dementia regarding attitudes toward end-of-life preferences, and the effects of this type of disagreement are not well understood. This study sought to identify such a disagreement and its predictors.MethodsA cross-sectional sample of 84 family caregivers and patients with dementia was recruited from memory clinics. We used the Mini-Mental State Examination, Neuropsychiatric Inventory, Clinical Dementia Rating, and Katz index of independence in activities of daily living to assess patient symptoms, functions, and severity of dementia. Caregivers completed questionnaires on perceived patient end-of-life care preferences, caregiver end-of-life care preferences for patients, Zarit Burden Interview (ZBI), Center for Epidemiological Studies–Depression Scale (CES-D), and knowledge of clinical complications of advanced dementia.ResultsThe self-disclosure rates of patient preferences were 34.5% for tube feeding, 39.3% for cardiopulmonary resuscitation, and 45.2% for mechanical ventilation. For patients who had disclosed preferences, the disagreement rate between them and their caregivers was 48.3% for tube feeding, 48.5% for cardiopulmonary resuscitation, and 60.3% for mechanical ventilation. Caregiver depression (i.e., CES-D ≥16) was associated with disagreements on cardiopulmonary resuscitation (adjusted odds ratio (aOR) = 6.6, 95% CI = 1.4–31.1, P = 0.01) and mechanical ventilation (aOR = 14, 95% CI = 2.2–87.2, P = 0.005) preferences.ConclusionThe preferences of end-of-life issues differed greatly between dementia patients and their caregivers. Depression in caregivers is associated with such discrepancy.

Changes in and modifiable patient- and family caregiver-related factors associated with cancer patients’ high self-perceived burden to others at the end of life: A longitudinal study

“…On the other hand, caregivers may hide or minimise their depressive symptoms to avoid causing patients further emotional distress (Proot et al., ). Such common practices of family caregivers may impede their open communication with patients (Tsai et al., ), making it difficult for patients to empathise with family caregivers’ depressive symptoms (Quinn et al., ), resulting in this variable not being associated with patients’ experience of high SPB.…”

“…Such common practices of family caregivers may impede their open communication with patients (Tsai et al, 2015), making it difficult for patients to empathise with family caregivers' depressive symptoms (Quinn et al, 2013), resulting in this variable not being associated with patients' experience of high SPB.…”

Terminally Ill Taiwanese Cancer Patients' and Family Caregivers' Agreement on Patterns of Life-Sustaining Treatment Preferences Is Poor to Fair and Declines Over a Decade: Results From Two Independent Cross-Sectional Studies

“…This lack of improvement suggests that diffusion of hospice philosophy to the public does not sufficiently influence terminally ill cancer patients' and their family caregivers' attitudes and behaviors when they face EOL-care decisions because the philosophy is too abstract. Another explanation for this lack of improvement may be that EOL-care discussions between Asian patients and their families remain rare 12,13 and culturally taboo, 7 as discussed above. To improve concordance on caregiver-patient LST preferences, interventions should be developed to involve patients in EOL-care planning and facilitate patient-family discussions on LST preferences.…”

“…5,7 Despite presumably benefiting patients, 6,8 surrogate decision making for terminally ill patients is challenging and difficult 3 because patients do not commonly discuss EOL-care preferences with their families. 9e11 These discussions are especially infrequent for patients in Asian countries such as Korea 12 and Taiwan, 13 where discussing issues related to death and dying is taboo. 7 Therefore, families frequently inadequately/inaccurately understand patients' preferences.…”

A Decade of Changes in Family Caregivers' Preferences for Life-Sustaining Treatments for Terminally Ill Cancer Patients at End of Life in the Context of a Family-Oriented Society

“…Worldwide, family caregivers' LST preferences for seriously/terminally ill patients have been studied in the U.S., 27 Canada, 5 the U.K., 28 Greece, 29 Israel, 7,30 Korea, 31e34 Singapore, 35 and Taiwan. 36,37 However, no studies were found on changes in LST preferences of family cohorts recruited at different times, despite an emphasis on avoiding LSTs that are nonbeneficial and discordant with patient preferences/wishes 1 and the substantial global hospice movement over the past decade, 38 including in Taiwan. Since 2004, Taiwan's government has launched multiple nationwide projects to facilitate dissemination of hospice philosophy and palliative care services.…”