Variable judgments of decisional capacity in cognitively impaired research subjects.

Objectives: To compare assessments of the decisional capacity of cognitively impaired patients by research assistants (RAs) and by family caregiver/proxies and to determine whether either or both groups judge capacity differently depending on the specific (hypothetical) research enrollment decision being made.

Design: Cross-sectional.

Setting: Three clinics, one each in Ohio, Kentucky, and Illinois.

Patients dying with dementia: experience at the end of life and impact of hospice care.

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.

Dementia, diagnostic disclosure, and self-reported health status.

Objectives: To investigate the general awareness of cognitive impairment in persons with documented dementia, evaluate the subject's recall of a diagnostic disclosure from a physician and their recollection of the discussion, and determine whether this awareness of cognitive impairment or the recall of diagnostic disclosure is associated with poorer self-rated health scores.

Design: Secondary data analysis.

Setting: Three university-based clinical referral sites for dementia illnesses.

Empirical assessment of a research advance directive for persons with dementia and their proxies.

Objectives: To evaluate a research advance directive for persons with established dementia diagnoses and their family caregivers or proxies.

Design: Prospective randomized, controlled trial.

Setting: Three clinics, one each in Ohio, Kentucky, and Illinois.

Management of noncancer pain in community-dwelling persons with dementia.

Objectives: To explore the pharmacological treatment of noncancer pain in persons with dementia and identify predictors associated with insufficient analgesia.

Design: Cross-sectional analysis of an observational cohort study.

Setting: Academic outpatient geriatric clinic in Chicago, Illinois.

Factors associated with self- and caregiver report of pain among community-dwelling persons with dementia.

Background: Among cognitively intact patients, self- and caregiver report of patient pain has been associated with worse psychological health for both the patient and caregiver. Little existing research examines factors associated with patient self-report of pain and caregiver report of patient pain among community-dwelling persons with dementia.

Objective: To identify patient and caregiver factors associated with self- and caregiver report of patient pain among community-dwelling persons with dementia.

Pain in community-dwelling persons with dementia: frequency, intensity, and congruence between patient and caregiver report.

To better understand the pain experience of persons with dementia and to describe what factors are related to congruence of pain reports within patient-caregiver dyads, a cohort study enrolled patient-caregiver dyads at a primary care geriatrics clinic. Thirty-two percent of persons with dementia self-report pain "right now." Of these, 65% report slight/mild pain, 27% moderate pain, and 8% severe pain or greater.

Barriers to limiting the practice of feeding tube placement in advanced dementia.

Objective: In advanced dementia, many difficult decisions may arise as the disease progresses, including whether to use feeding by tube. Several recent articles question the benefit of percutaneous endoscopic gastrostomy (PEG) tube placement in persons with advanced dementia. However, patients with advanced dementia are still referred for PEG tubes.

Ethics reporting in publications about research with Alzheimer's disease patients.

Persons with impaired decision-making capacity require special ethical protections during recruitment for and participation in research. To assess how fully basic protections for these persons were reported in the literature, the first structured review of a sample of reports of trials including Alzheimer's subjects was performed in 62 journals between January 1992 and December 1998. Neither institutional review board review nor informed consent was mentioned in 28% of the studies.

Are the rules for research with subjects with dementia changing?: views from the field.

Deliberative bodies have recommended additional protections for persons with dementia included in clinical trials. This survey of experienced dementia researchers revealed that 45 to 64% considered that specific ones of these recommendations would increase subject protection, and 40 to 86% considered they would make research less feasible. The real tradeoff between protection and difficulty in conducting research on devastating illnesses needs to be confronted when new regulations in this area are debated.