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. Their mental capacity to make everyday financial decisions was assessed by clinician ratings and the Chinese version of the Assessment of Capacity for Everyday Decision-Making (ACED). Based on the clinician ratings, only 53.5% were found to be mentally competent in the AD group, compared with 94.6% in the MCI group. However, participants with MCI had mild but significant impairment in understanding, appreciating, and reasoning abilities as measured by the ACED. The ACED provided a reliable and clinically applicable structured framework for assessment of mental capacity to make financial decisions.

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. RESULTS: Ninety-nine participants (34%) were diagnosed with MCI and ninety-five (33%) with mild AD. Although almost all (96%) of the participants in the MCI group were found to be mentally competent to make decisions on medication management in clinician ratings, their decision-making abilities as measured by the ACED were significantly lower than those of the cognitively normal controls. CONCLUSIONS: Results from this study suggest that abilities related to decisions on medication management are impaired before the clinical diagnosis of dementia is made. Use of specific and structured assessment of the relevant decisional abilities may enhance clinical judgment.

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. METHODS: DSRS and Mini Mental State scores were prospectively collected on 702 patients with AD from first evaluation until they became too impaired to return to clinic. RESULTS: DSRS score increased an average of 4.48 points/y [95% confidence interval (CI): 4.14-4.82] throughout the entire range of severity. In contrast, the Mini Mental State declined an average of 2.15 points/y (95% CI: 1.85-2.46) during the first 2 years, accelerated to 3.83 points/y (95% CI: 3.28-4.38) during the subsequent 3 years, and then slowed to an annual decline of 1.63 points during the last 2 years (95% CI: 0.21-3.05). A younger age of symptom onset was associated with an increased rate of DSRS change (P=0.03). CONCLUSIONS: The DSRS provides a clinical measure of functional impairment in AD that increases about 4.48 points/y from the earliest symptomatic stage until patients become too severely impaired to return to clinic.

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. Descriptive statistics were used to represent our findings. RESULTS: Most of the 262 participants approached for the study completed the interview (199; 76%). Of those interviewed, 122 (61%) were African American, 54 (27%) were white, 83 (42%) were male, and the mean (+/-standard deviation [SD]) age was 36.2 +/- 14.4 years. Most, (194; 97%), identified that they belonged to a community and most (177; 89%), said that researchers could consult at least one of their communities for consultation about an exception from informed consent study. Participants typically named geographic and religious-affiliated communities and leaders as appropriate for consultation. CONCLUSION: Most participants identified a community and a leader of that community who researchers could consult about research with exception from informed consent. Geographic and faith-based organizations could play an important role in 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. Family members reported some themes that prompted planning and others that were barriers to planning. Events that most often triggered planning were medical, living situation, or financial issues associated with a friend or family member of the patient (57%). Barriers to planning included both passive and active avoidance. The most common form of passive avoidance was not realizing the importance of planning until it was too late to have the discussion (63%). The most common form of active avoidance was avoiding the discussion (53%). These data suggest potentially remediable strategies to address barriers to advance planning discussions.

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. Nearly two-thirds of facilities indicated they assessed residents' voting capacity before the election. However, methods differed and may have disenfranchised residents who were actually competent to vote. Current procedures in many facilities fail to protect voting rights. These data suggest that rights might be better protected if election officials took charge of registration, filing absentee ballot requests, ballot completion, and trained LTC facility staff on voters' rights and reasonable accommodations.

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. RESULTS: Family members were split almost evenly in the standard they used when making medical decisions for their relative: substituted judgment (43%) or best interests (57%). However, few who used the substituted judgment standard viewed it as distinct from best interests. Instead, both standards were taken into consideration when making medical decisions. In addition to not having discussions about healthcare preferences, the reasons for not using a substituted judgment included: the need for family consensus, unrealistic expectations of the patient, the need to incorporate their relative's quality of life into the decision, and the influence of healthcare professionals. Family members who did not have discussions about healthcare preferences identified various barriers to the discussion, including waiting too long, avoiding the topic, and the patient's denial of dementia. CONCLUSION: These data suggest several reasons why surrogate decision-makers for persons with advanced dementia do not use the substituted judgment standard and the potential value of interventions that would allow patients with early-stage dementia and their family members to discuss healthcare preferences.

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. Logistic regression showed that having less dementia severity, being a female caregiver, and a spousal relationship were all associated with caregivers' involving their relative in this decision. Among the caregivers who said they would involve their relative, the majority said they would resolve disagreements over whether to use the treatment in favor of what the patient wanted, versus what the family wanted for the patient. Male caregivers were less likely to resolve disagreements in favor of the patients' preferences. CONCLUSION: Although most caregivers of patients in mild-to-moderate stages would include these patients in an AD treatment decision, certain caregiver characteristics, such as gender and relationship, are associated with not involving patients in this decision. Physicians working with dementia patients and their family members should take these characteristics into account when discussing treatment options and work with patient-caregiver dyads to improve the communication of preferences.

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. Most patients rated their QOL as "good" (35%) or "very good" (36%). Latino patients, patients with less education, and depressed patients were more likely to rate their QOL lower. Among patients able to estimate how they thought their family caregiver would rate their QOL (N=173; 90%), there was moderate agreement between this estimate and their self-ratings. CONCLUSION: A single-item global rating of patient QOL could prove useful in assessing QOL of most mild-to-severe-stage AD patients. Affective impairment, more than cognitive or functional impairment, drives this assessment. Screening for and addressing depressive symptoms could improve AD patients' QOL. Despite impairments in insight, patients see a difference in how their caregivers would rate their QOL.

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. Half of the caregivers who indicated that their relatives would participate had relatives who did not have the capacity to make the decision based on a consensus of three expert psychiatrists. Patients' insight into their diagnosis and prognosis, and having less cognitive impairment, being a female caregiver, and being a spousal caregiver were all associated with the likelihood that the patient would participate in the treatment decision. Patients talked about wanting to be involved in the process of making a treatment decision, whereas caregivers talked about assessing whether their relative could participate in the process of decision making. IMPLICATIONS: Mild-to-moderate stage Alzheimer's disease patients want to be involved in making treatment decisions, and caregivers are generally willing to involve them. Caregivers of Alzheimer's disease patients talk about patient participation in relation to elements of the capacity to make a treatment decision. Clinicians can provide guidance and education to assist caregivers in understanding how to assess their relatives' abilities to make decisions and navigate the decision-making process.

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. PARTICIPANTS: Ninety-five patients with a Charlson comorbidity index score greater than 5. MEASUREMENTS: Subjects described the way that they make health care decisions with friends or family as a dichotomous variable ("shared" versus "not shared") and as a 5-point ordinal variable (the degree to which they share decisions). Patients also completed the 15-item version of the Geriatric Depression Scale (GDS), the Global Distress Index of the Memorial Symptom Assessment Scale, and selected tests of cognitive function and health literacy. RESULTS: Patients with a GDS score higher than 5 were more likely to share decision-making (16/26 versus 26/69; odds ratio 2.58; p = 0.040), as were patients who were married (23/35 versus 19/60; odds ratio 3.63; p = 0.001). In multivariable regression models, a short form GDS score higher than 5 was independently associated with a willingness to share decision with others. CONCLUSION: These results suggest that depression may have a clinically significant influence on patients' willingness to share health care decisions with others. Health care providers should be alert to this possibility, particularly when the decision at hand is significant.

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. PARTICIPANTS: Two hundred fifty-one AD patient-caregiver dyads. MEASUREMENTS: Screen for Caregiver Burden (SCB), Center for Epidemiologic Studies Depression scale, Medical Outcomes Short Form, Mini-Mental State Examination, and patient and caregiver characteristics. RESULTS: At least 25% of the sample endorsed eight of the 25 items in the SCB subjective burden (SB) scale. Of these eight items with a prevalence of 25% or greater endorsement, seven items had item-total correlations of 0.55 or greater. The shortened seven-item SCB SB had an alpha of 0.86, indicating that the shortened scale has good internal consistency (Full SCB SB alpha=0.88). The seven-item SCB SB was highly associated with depression and overall mental health measures. CONCLUSION: This shortened version of the SCB allows a clinician to rapidly assess the burden associated with caregiving for a person with AD.

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] = 2.35, 95% confidence interval [95% CI] = 1.01-5.49; P =.048; Severe [MMSE < 12]: OR = 29.38, 95% CI = 5.98-144.25, P <.001). Furthermore, older patients (OR = 1.06, 95% CI = 1.00-1.12, P =.049) and mounting caregiver burden (OR = 1.12, 95% CI = 1.04-1.26, P =.003) were significant independent predictors of transitions to the caregiver-dominated medical decision-making process. These results provide clinicians with prognostic information that can help caregivers understand how their role in decision making will change over the course of a patient's dementing illness.

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. Using a 3 x 3, within-subjects design, we altered a risk to participation (either adverse effect rate or rate of randomization to placebo) and the payment participants would receive ($100, $1000, and $2000) and asked patients to indicate their willingness to participate (WTP) in each trial using a 6-point scale. RESULTS: Clustered ordinal logistic regression models revealed that patients' WTP decreased with higher risk of adverse effects (P<.001), higher risk of being assigned to placebo (P =.02), and lower payment level (P<.001). There were no significant interactions between payment level and either risk variable, suggesting that increasing payments do not alter peoples' perceptions of risk. There was a trend toward a positive interaction between income and the influence of payment on WTP (P =.09), suggesting that payment more strongly influences WTP among wealthier people. Wealthier patients were more likely to state that payment was important in their participation decision (37% vs 20%, P =.05). CONCLUSION: Although higher payment motivates research participation, we found no evidence that commonly used payment levels represent undue or unjust inducements.

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. We solicited patient motivations and concerns regarding trial participation by using open-ended questions, assessed the patients' stated WTP, and used logistic regression to determine patient characteristics associated with WTP. We reassessed WTP in 62 patients after revealing, in random order, that 10%, 30%, and 50% of patients would receive placebo. RESULTS: The most commonly cited motivations for participating included personal health benefits (40%), helping other patients (37%), and contributing to scientific knowledge (15%). The most common concerns were having to stop current medications (56%), inconvenience/annoyance (38%), fear of known side effects (35%), and the possibility of receiving placebo (24%). Overall, 47% of patients (95% confidence interval, 38% to 56%) were willing to participate. Younger patients (57% versus 37%; P =.01), nonsmokers (50% versus 24%; P =.04), and patients who had participated in research previously (77% versus 20%; P =.009) were all significantly more willing to participate. Fewer patients were willing to participate as the percentage who would receive placebo increased (P =.02), but randomly assigning fully half of patients to placebo still yielded maximal recruitment efficiency. CONCLUSIONS: Hypertensive patients participate in trials for altruistic and personal health reasons. Differences between patients who do or do not participate may influence trial outcomes. The proportion of patients receiving placebo influences some patients' enrollment decisions but is not a key determinant of recruitment efficiency.