JOURNAL OF PALLIATIVE MEDICINE Volume 11, Number 7, 2008 © Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2008.0020 Dying with Advanced Dementia in Long-Term Care Geriatric Institutions: A Retrospective Study Paola Di Giulio, R.N., M.Sc., 1 Franco Toscani, M.D., 2 Daniele Villani, M.D., 3 Cinzia Brunelli, Sc.D., 2 Simona Gentile, M.D., 3 and Patrizia Spadin 4 Abstract Objective: The aim of this study is to describe the last month of life of severely demented elders in long-term care institutions, and the clinical decisions in the management of their end-of-life events. Design: Retrospective exploratory study. Setting: Seven Italian long-term care institutions with more than 200 beds. Participants: One hundred forty-one patients with advanced (FAST stage = 7c) dementia (Alzheimer disease, vascular, other kinds of dementia, severe cognitive impairment). Measurement: Diagnosis, Mini-Mental State Examination, cause of death. Data were collected from clinical and nursing records referring to the last 30 days of life: symptoms and signs, intensity and incidence, treatments (antibiotics, analgesics, anxiolytics, antidepressants, artificial nutrition/hydration, and use of restraints); the last 48 hours: cardiopulmonary resuscitation attempts and life-sustaining drugs. Results: Patients were given antibiotics (71.6%), anxiolytics (37.1%), and antidepressants (7.8%). Twenty-nine patients (20.5%) were tube- or percutaneous endoscopic gastrostomy (PEG)-fed. Most patients (66.6%) were also parenterally hydrated (72 intravenously, 15 by hypodermoclysis). Some form of physical restraint was used for 58.2% (bed-rails and other immobilizers). Almost half of the patients had pressure sores. In general, atten- tion to physical suffering was fairly good, but during the last 48 hours a number of interventions could be con- sidered inappropriate for these patients: tube feeding (20.5%), intravenous hydration (66.6%), antibiotics (71.6%), and life-sustaining drugs (34.0%). Conclusions: Some indicators imply a less than optimal quality of care (restraints, pressure sores, psychoactive drugs, and the lack of documentation of shared decision-making) and suggest that far advanced demented pa- tients are not fully perceived as “terminal.” 1023 Introduction D EMENTIA is a long and highly debilitating illness. Its du- ration cannot be estimated and is still much debated, with reports of average survival ranging from 3 to 16 years. 1 During the illness, the patient experiences a progressive loss of autonomy and capacity, up to complete dependence and cognitive impairment. This process is gradual and its pro- gression depends on the type of dementia, age, comorbidity, treatments, quality of care, and social networks. 2 In ad- vanced stages patients frequently have to be admitted to long-term care geriatric institutions and nursing homes, where they spend the last part of their lives 3 and where they are expected to receive palliative and end-of-life care. Their average age is generally more than 80 years. The prevalence of severe dementia in nursing homes may be as high as 80%. 3,4 Advanced dementia is unquestionably a terminal disease, but in nursing homes and long-term care institutions this is seldom acknowledged by doctors and health profession- als. 4,5 Patients are rarely referred to palliative care services and hospices, and are often exposed to aggressive treat- ments. 6 The literature highlights important differences not only between countries, but even between institutions and 1 Department of Public Health and Microbiology Faculty of Medicine and Surgery, Turin University, Turin, Italy. 2 Lino Maestroni Foundation–Palliative Medicine Research Institute, Cremona, Italy. 3 Department of Geriatrics, Sospiro Foundation, Cremona, Italy. 4 Italian Association of Alzheimer Patients, Milano, Italy.