Structured assessment of mental capacity to make financial decisions in Chinese older persons with mild cognitive impairment and mild Alzheimer disease.

Previous studies suggested that patients with mild cognitive impairment (MCI) or dementia can have impaired and declining financial skills and abilities. The purpose of this study is to test a clinically applicable method, based on the contemporary legal standard, to examine directly the mental capacity to make financial decisions and its component decision-making abilities among patients with MCI and early dementia. A total of 90 patients with mild Alzheimer disease (AD), 92 participants with MCI, and 93 cognitively normal control participants were recruited for this study.

Capacity to make decisions on medication management in Chinese older persons with mild cognitive impairment and mild Alzheimer's disease.

Background: This study aimed to assess if decisional capacity and the four decision-making abilities related to decisions concerning medication management were impaired among community-dwelling Chinese older persons in Hong Kong with amnestic mild cognitive impairment (MCI) and mild Alzheimer's disease (AD), as compared with cognitively normal older adults.

Methods: Two hundred and ninety-one Chinese community-dwelling older adults were recruited. The four decision-making abilities and decisional capacity were assessed by using the Chinese version of the Assessment of Capacity for Everyday Decision-Making (ACED) and independent clinician ratings based on the definition in the UK Mental Capacity Act 2005, respectively.

Rate of decline in Alzheimer disease measured by a Dementia Severity Rating Scale.

Objective: To measure clinically relevant change in Alzheimer disease (AD) using a family member-completed Dementia Severity Rating Scale (DSRS) questionnaire.

Background: Measuring rate of change provides important clinical information. Most neuropsychologic scores change nonlinearly, complicating their use as a predictor of change throughout the illness.

Who can speak for the emergently ill? Testing a method to identify communities and their leaders.

Objectives: The Food and Drug Administration (FDA) requires researchers to consult with the community prior to conducting research with exception from informed consent, but little is known about whether people support this and, if they do, who researchers should consult. We sought to determine if people could identify communities and leaders of those communities who researchers should consult with to represent their views about research that requires an exception from informed consent.

Methods: We conducted a cross-sectional interview study using a convenience sample of patients seeking care in an urban emergency department (ED) to determine if people belonged to specific communities and, if they did, if they could identify communities and leaders appropriate for consultation.

Identifying the factors that facilitate or hinder advance planning by persons with dementia.

We performed semistructured interviews with 30 family members of patients with advanced dementia to identify the factors that facilitate or hinder advance planning by persons with dementia. All interviews were analyzed using qualitative data analysis techniques. The majority (77%) of family members reported that their relative had some form of written advance directive, and at least half reported previous discussions about health care preferences (57%), living situation or placement issues (50%), and finances or estate planning (60%) with the patient.

Identifying the barriers and challenges to voting by residents in nursing homes and assisted living settings.

To ascertain the need for and to inform development of guidelines for voting in long-term care settings, we conducted a telephone survey of Philadelphia nursing (n = 31) and assisted living (n = 20) settings following the 2003 election. Substantial variability existed in procedures used for registration and voting, in staff attitudes, and in the estimated proportion of residents who voted (29%+/-28, range 0-100%). Residents who wanted to vote were unable to do so at nearly one-third of sites, largely due to procedural problems.

Why doesn't a family member of a person with advanced dementia use a substituted judgment when making a decision for that person?

Objective: The objective of this study was to identify what standard of decision making a family member uses when making medical decisions for their relative with advanced dementia.

Methods: Thirty family members of patients with advanced dementia from an Alzheimer disease center and a suburban long-term care facility were interviewed using a semistructured interview. All interviews were audiotaped, transcribed, and analyzed using qualitative data analysis techniques.

Would caregivers of Alzheimer disease patients involve their relative in a decision to use an AD-slowing medication?

Objectives: The authors examined the factors associated with 1) caregivers' willingness to involve a relative with Alzheimer disease (AD) in a decision to use an AD-slowing treatment; and 2) how caregivers would resolve a disagreement over this decision with the their relative.

Methods: This was a cross-sectional interview study of 102 caregivers of patients with mild-to-severe-stage AD, enrolled in a University Memory Disorders Clinic.

Results: Forty-four percent of caregivers (45/102) said that his or her relative would participate in a decision to use an AD-slowing treatment.

How do patients with Alzheimer disease rate their overall quality of life?

Objective: The authors asked how Alzheimer disease (AD) patients assess their overall quality of life (QOL) and sought to determine the characteristics associated with this assessment.

Methods: The authors performed a cross-sectional survey of 193 persons with mild-to-severe-stage AD in a University Memory Disorders Clinic using a single-item self-assessment of overall QOL.

Results: The 181 of 193 patients (94%) able to complete a single-item QOL self-rating had less severe dementia than patients not able to complete, but some had Mini-Mental State Exam scores as low as 0.

Do Alzheimer's disease patients want to participate in a treatment decision, and would their caregivers let them?

Purpose: This study was designed to examine the factors associated with the preferences of Alzheimer's disease patients to participate in a decision to use an Alzheimer's disease-slowing medication and how involved their caregivers would let them be in this decision.

Design And Methods: Interviews were conducted with 48 patients in the mild-to-moderate stage of Alzheimer's disease and their caregivers.

Results: Ninety-two percent of patients indicated they would participate in an Alzheimer's disease treatment decision, whereas 71% of caregivers thought the patient would participate.

The development of a rapid screen for caregiver burden.

Objectives: To develop a shortened screen for burden associated with caring for a patient with Alzheimer's disease (AD).

Design: Cross-sectional.

Setting: The Memory Disorders Clinic of an AD center.

Are depressed patients more likely to share health care decisions with others?

Objectives: To determine whether psychological variables, particularly depression, influence patients' willingness to share medical decisions with family members or friends.

Design: Cross-sectional interviews.

Setting: Oncology and general geriatrics outpatient clinics of an urban VA medical center.

How does an Alzheimer's disease patient's role in medical decision making change over time?

As persons with Alzheimer's disease (AD) lose their ability to make decisions, someone else has to make decisions for them. We performed a prospective cohort study of 77 AD patient-caregiver dyads to examine when this transition occurs. When dementia severity surpassed a threshold marked by a Mini-Mental State Examination (MMSE) score less than 20, the level of caregiver-reported patient involvement in the medical decision-making process declined (Moderate [MMSE = 19-12]: Odds Ratio [OR] = 2.

Empirical assessment of whether moderate payments are undue or unjust inducements for participation in clinical trials.

Background: Paying patients to participate in clinical trials is ethically controversial. However, there has been no empirical documentation regarding whether payment represents an undue or unjust inducement.

Methods: To evaluate these questions, we described hypothetical placebo-controlled trials of a new antihypertensive drug to 126 patients with mild-to-moderate hypertension recruited from hypertension and general medicine clinics at a university hospital.

Hypertensive patients' willingness to participate in placebo-controlled trials: implications for recruitment efficiency.

Background: Underenrollment and selective enrollment plague many clinical trials. Little is known about why hypertensive patients agree or refuse to participate in placebo-controlled trials (PCT) of antihypertensive drugs, whether the prospect of receiving placebo influences willingness to participate (WTP), or whether patients who participate differ from those who do not.

Methods: We described a hypothetical PCT of a new antihypertensive drug to 126 patients who would be eligible for ongoing phase III trials.

Why would caregivers not want to treat their relative's Alzheimer's disease?

Objectives: To determine family caregivers' willingness to use Alzheimer's disease (AD)-slowing medicines and to examine the relationships between this willingness, dementia severity, and caregiver characteristics.

Design: Cross-sectional survey.

Setting: In-home interviews of patients from the Memory Disorders Clinic of the University of Pennsylvania's Alzheimer's Disease Center.

Identifying ambulatory cancer patients at risk of impaired capacity to consent to research.

Ethicists and others have expressed concerns that some patients with cancer might lack adequate decision-making capacity to give consent for research. Although this concern is plausible, it is not known what patient characteristics might be used to identify those patients who are at risk and who therefore should undergo a formal assessment of decision-making capacity. Forty-five patients with cancer were presented with a description of a randomized controlled trial, accompanied by an Institutional Review Board-approved consent form.

Conducting research that involves subjects at the end of life who are unable to give consent.

This paper examines the conditions that describe when it is appropriate to conduct research that enrolls a subject near the end-of-life who cannot provide an informed consent. Specifically, it describes conditions that justify when it is acceptable to expose a person to the risks, burdens or discomforts of an intervention that is not intended to benefit that person but to produce generalizable knowledge that will benefit other people. These conditions are: (1) acceptable research risks, (2) proxy decision making, (3) subject assent and dissent, and (4) subject advance consent.