For the past century, nursing homes and hospitals have increasingly become the site of death. Approximately half of all Americans who live to the age of 65 years will enter a nursing home before they die, and 20 percent will die there (
+26). However, because nursing home care is more focused on restorative services, the palliative needs of persons with end-stage Alzheimer's disease in nursing homes are not adequately managed (
+27). Additionally, a shortage of nursing staff and high rates of staff turnover are most likely to negatively affect the quality of end-of-life care in nursing homes (
+27).
In an extensive survey of family members of 1,578 decedents, Teno and colleagues (
+28) concluded that many people dying in nursing homes or hospitals have unmet needs for symptom amelioration, communication with a physician, emotional support, and respectful attention. Also, they found that family members of decedents who received care at home with hospice services had fewer concerns about the amount of emotional support that was provided to the patients.
Multiple issues can be addressed with the caregivers of persons with end-stage Alzheimer's disease. Ideally, patients have already prepared advance directives and a living will and appointed durable power of attorney before the onset of dementia. When these advance directives are unavailable, clinicians should help caregivers think through the relevant issues and come to their own decisions. These issues can be best addressed with caregivers in terms of the outcomes of various treatment options, goals of medical care, and risks. Clinicians need to be clear and direct, avoid medical jargon, and be empathic with caregivers' feelings. It is important to assure caregivers that their loved ones will receive supportive measures, even if caregivers decide not to opt for acute medical interventions.
Caregivers of persons with Alzheimer's disease experience stressful demands, especially because of the length of time that care is required, the behavioral symptoms of patients, and the severity of decline of patients during the course of the illness (
+29). Insufficient attention has been given to how end-of-life care affects caregivers or to caregivers' responses to the death of the patient. A study conducted by Schulz and associates (
+30) indicated that caregivers needed intervention, and support services were needed most often immediately before the patient's death.
Caregivers may need help in resuming their own lives after the patient's death. Psychiatrists who are called in as consultants or who have a long-term relationship with the patient or caregiver are uniquely positioned to assist the caregiver with his or her emotional needs that are associated with end-of-life care or the patient's demise (
+31,
+32). Support can also be obtained from local chapters of the Alzheimer's Association (www.alz.org) and the National Hospice and Palliative Care Organization (www.nhpco.org). The guidelines recently developed by the National Consensus Project for Quality Palliative Care offer a comprehensive format to improve the quality of care, efficiency of care delivery, and patient and caregiver satisfaction in the psychological and psychiatric aspects of care (
+33).