No abstract

While great strides have been made recently in improving endof-life care in the United States, people with dementia often die with inadequate pain control, with feeding tubes in place, and without the benefits of hospice care. In this paper, we discuss the most important and persistent challenges to providing excellent end-of-life care for patients with dementia, including dementia not being viewed as a terminal illness; the nature of the course and treatment decisions in advanced dementia; assessment and management of symptoms; the caregiver experience and bereavement; and health systems issues. We suggest approaches for overcoming these barriers in the domains of education, clinical practice, and public policy. As the population ages, general internists increasingly will be called upon to provide primary care for a growing number of patients dying with dementia. There are great opportunities to improve end-of-life care for this vulnerable and underserved population.KEY WORDS: palliative care; end-of-life care; dementia; Alzheimer's disease; hospice.

Based on these preliminary findings, consensus criteria for prescribing in advanced dementia are needed to decrease polypharmacy and reduce the use of medications that are of minimal benefit or high risk.

BACKGROUND-Recent randomized controlled trials have demonstrated the effectiveness of the collaborative dementia care model targeting both patients suffering from dementia and their informal caregivers.

Importance: Although there is a growing recognition that older adults and those with extensive comorbid conditions undergo cancer screening too frequently, there is little information about patients' perceptions regarding cessation of cancer screening. Information on older adults' views of screening cessation would be helpful both for clinicians and for those designing interventions to reduce overscreening.Objective: To obtain a deeper understanding of older adults' perspectives on screening cessation and their experiences communicating with clinicians about this topic.Design: Semistructured interview study.Setting: Senior health center affiliated with an urban hospital. Participants:We interviewed 33 older adults presenting to a senior health center. Their median age was 76 years (range, 63-91 years). Of the 33 participants, 27 were women; 15 were African American, 16 were white, 1 was Asian, and 1 was American Indian. Main Outcome Measures:We transcribed audio recordings of interviews and analyzed them using methods of grounded theory to identify themes and illustrative quotes.Results: Undergoing screening tests was perceived by participants as morally obligatory. Although many saw continued screening as a habit or custom not involving any decision, cessation of screening would require a major decision. Many asserted that they had never discussed screening cessation with their physicians or considered stopping on their own; some reported being upset when their physician recommended stopping. Although some would accept a physician's strong recommendation to stop, others thought that such a physician's recommendation would threaten trust or lead them to get another opinion. Participants were skeptical about the role of statistics and the recommendations of government panels in screening decisions but were more favorable toward stopping because of the balance of risks and benefits, complications, or test burdens.Conclusions and Relevance: For many older adults, stopping screening is a major decision, but continuing screening is not. A physician's recommendation to stop may threaten patient trust. Effective strategies to reduce nonbeneficial screening may include discussion of the balance of risks and benefits, complications, or burdens.

Objectives-Many medications commonly used to treat chronic conditions have unclear benefits for nursing home (NH) residents with advanced dementia. This study describes the pattern and factors associated with daily medication use in this population.Design, Setting, Participants-Residents with advanced dementia (N=323) from 22 Bostonarea NHs were followed prospectively for 18 months.Measurements-Data from residents' records were used to determine the number or daily medications, specific drugs prescribed, and use of drugs deemed 'never appropriate' in advanced dementia. Resident characteristics associated with the use of more daily medications and drugs deemed inappropriate were examined.Results-Residents were prescribed a mean of 5.9 ± 3.0 daily medications, and 37.5% received at least one medication considered 'never appropriate' in advanced dementia. Acetylcholinesterase inhibitors (15.8%) and lipid-lowering agents (12.1%) were the most common inappropriate drugs. Twenty-eight percent of residents took antipsychotics daily. Modest reductions of most daily medications only occurred during the last week of life. Factors independently associated with taking more daily medications included older age, male, non-white, dementia not due Alzheimer's, better cognition, cardiovascular disease, acute illness, and hospice referral. Factors independently associated with greater likelihood of taking inappropriate medications included male, shorter NH

Agency for Healthcare Research and Quality.

To evaluate the impact hospice enrollment has on the terminal care of patients with dementia and describe the symptom burden these patients experience, caregivers of dementia decedents were assessed in a mortality follow-back survey. Patients had been managed through academic outpatient geriatric clinics in Chicago, IL. A total of 135 family members or other knowledgeable informants of persons who had died with dementia were queried about the patient's preferred location of death, location of death, satisfaction with patient care, and assessment of patient's pain and most bothersome symptom. Patients who were enrolled in hospice were significantly more likely to die in their location of choice (odds ratio [OR] 9.67; 95% confidence interval [CI] 2.57-37.0), and less likely to die in the hospital, (OR 0.04; 95% CI 0.01-0.18), compared to nonenrollees. Caregivers of hospice enrollees were more likely to rate patient care as excellent or very good (OR 5.65; 95% CI 2.61-10.34), compared to nonenrollees. Over 50% of caregivers of hospice enrollees and nonenrollees reported patient pain at a moderate intensity or higher on average in the last two weeks of life. No effect was observed between a caregiver reporting pain at a moderate level or higher and whether the patient was enrolled in hospice (OR 0.58; 95% CI 0.22-1.54). Hospice enrollees did not experience improvement in their most bothersome symptom's frequency, severity, or amount of distress caused (P=0.21, 0.39, 0.95, respectively), compared to nonenrollees. These results suggest that dying patients with dementia who are enrolled in hospice programs are more likely to die in their locations of choice and their caregivers are more likely to perceive that care is excellent or good than those who do not obtain hospice services. No effect on pain or other symptoms could be demonstrated in this analysis.