Jennifer H. Lingler

Caregiver-specific outcomes in antidementia clinical drug trials: a systematic review and meta-analysis.

Objectives: To describe the range of caregiver‐specific outcomes and approaches to their study within antidementia drug trials and to quantify the effect of cholinesterase inhibitors on burden and active time use of caregivers of persons with Alzheimers disease (AD).

Diagnostic Labels, Stigma, and Participation in Research Related to Dementia and Mild Cognitive Impairment

Health care professionals use diagnostic labels to classify individuals for both treatment and research purposes. Despite their clear benefits, diagnostic labels also serve as cues that activate stigma and stereotypes. Stigma associated with the diagnostic labels of dementia and mild cognitive impairment (MCI) can have a significant and negative impact on interpersonal relationships, interactions with the health care community, attitudes about service utilization, and participation in clinical research. The impact of stigma also extends to the family caregivers of individuals bearing such labels. In this article, we use examples from our investigations of individuals with dementia or MCI and their family caregivers to examine the impact of labeling and stigma on clinical research participation. We also discuss how stigma can affect numerous aspects of the nursing research process. Strategies are presented for addressing stigma-related barriers to participation in clinical research on dementia and MCI.

Marital Quality in the Context of Mild Cognitive Impairment

Profound behavioral changes in persons with dementia often negatively affect the quality of marital relationships. Yet, little is known about the extent to which the marital relationship may be affected when the care recipient has milder degrees of cognitive impairment. This study characterizes marital quality among 27 adults who live with a spouse with mild cognitive impairment (MCI). This study demonstrates that at mild levels of cognitive impairment, specific behaviors in the affected person are distressing and may degrade the quality of the marital relationship. These results have implications for clinical practice and the delivery of health care and social services to these families. It is important to develop interventions to address the needs of these individuals and their caregivers. Results of this study suggest the need for mental health interventions designed to preserve the quality of these marital relationships.

Measuring the Experience and Perception of Suffering

PURPOSE assess psychometric properties of scales developed to assess experience and perception of physical, psychological, and existential suffering in older individuals. DESIGN AND METHODS scales were administered to 3 populations of older persons and/or their family caregivers: individuals with Alzheimers disease (AD) and their family caregivers (N = 105 dyads), married couples in whom 1 partner had osteoarthritis (N = 53 dyads), and African American and Hispanic caregivers of care recipients with AD (N = 121). Care recipients rated their own suffering, whereas caregivers provided ratings of perceived suffering of their respective care recipients. In addition, quality of life, health, and functional status data were collected from all respondents via structured in-person interviews. RESULTS three scales showed high levels of internal consistency, test-retest reliability, and convergent and discriminant validity. The scales were able to discriminate differences in suffering as a function of type of disease, demonstrated high intra-person correlations and moderately high inter-person correlations and exhibited predicted patterns of association between each type of suffering and indicators of quality of life, health status, and caregiver outcomes of depression and burden. IMPLICATIONS suffering is an important but understudied domain. This article provides valuable tools for assessing the experience and perception of suffering in humans.

Incidence and Predictors of Advance Care Planning Among Persons With Cognitive Impairment

OBJECTIVE Persons with mild cognitive impairment (MCI) and Alzheimer disease (AD) are at heightened risk for future decisional incapacity. We sought to characterize advance care planning (ACP) rates over time in individuals who had no advance directives (living will or durable power of attorney) in place when they initially presented for a cognitive evaluation. DESIGN Retrospective analysis of data that had been prospectively collected. SETTING Alzheimers Disease Research Center memory disorders clinic. PARTICIPANTS Persons (N = 127) with a diagnosis of MCI or early AD (n = 72) or moderate to severe AD (n = 55) and no advance directives upon initial presentation for a cognitive evaluation. MEASUREMENTS Extraction of responses to items pertaining to ACP assessed during annual semistructured interviews. RESULTS By 5 years of follow-up, 39% of the sample had initiated ACP, with little difference by baseline diagnosis. Younger subjects (younger than 65 years) were significantly more likely to initiate advance directives (43%) than older subjects (37%). This age effect was more pronounced in men than in women as well as in married subjects, those with a family history of dementia, those with no depressive disorder, and subjects with moderate to severe AD (versus those with MCI or early AD) at baseline. CONCLUSION Only a minority of subjects initiated ACP. The findings suggest the need for interventions aimed at enhancing ACP completion rates, particularly among older adults with cognitive impairment, since these individuals may have a time-limited opportunity to plan for future medical, financial, and other major life decisions.

Conceptual challenges in the study of caregiver-care recipient relationships.

Background: In the literature on family caregiving, care receiving and caregiving are generally treated as distinct constructs, suggesting that informal care and support flow in a unidirectional manner from caregiver to care recipient. Yet, informal care dynamics are fundamentally relational and often reciprocal, and caregiving roles can be complex and overlapping. Objectives: To illustrate ways care dynamics may depart from traditional notions of dyadic unidirectional family caregiving and to stimulate a discussion of the implications of complex relational care dynamics for caregiving science. Approach: Exemplar cases of informal care dynamics were drawn from three ongoing and completed investigations involving persons with serious illness and their family caregivers. The selected cases provide examples of three unique, but not uncommon, care exchange patterns: (a) care dyads who are aging, are chronically ill, and who compensate for one anothers deficits in reciprocal relationships; (b) patients who present with a constellation of family members and other informal caregivers, as opposed to one primary caregiver; and (c) family care chains whereby a given individual functions as a caregiver to one relative or friend and care recipient to another. Conclusions: These cases illustrate such phenomena as multiple caregivers, shifting and shared caregiving roles, and care recipients as caregivers. As caregiving science enters a new era of complexity and maturity, there is a need for conceptual and methodological approaches that acknowledge, account for, and support the complex, web-like nature of family caregiving configurations. Research that contributes to, and is informed by, a broader understanding of the reality of family caregiving will yield findings that carry greater clinical relevance than has been possible previously.

Frequency and Correlates of Advance Planning Among Cognitively Impaired Older Adults

OBJECTIVE To examine the prevalence and sociodemographic correlates of written advance planning among patients with or at risk for dementia-imposed decisional incapacity. DESIGN Retrospective, cross-sectional. SETTING University-based memory disorders clinic. PARTICIPANTS Persons with a consensus-based diagnosis of mild cognitive impairment (N = 112), probable or possible Alzheimer disease (AD; N = 549), and nondemented comparison subjects (N = 84). INTERVENTION N/A. MEASUREMENTS Semistructured interviews to assess durable power of attorney (DPOA) and living will (LW) status upon initial presentation for a dementia evaluation. RESULTS Sixty-five percent of participants had a DPOA and 56% had a LW. Planning rates did not vary by diagnosis. European Americans (adjusted odds ratio = 4.75; 95% CI, 2.40-9.38), older adults (adjusted odds ratio = 1.05; 95% CI, 1.03-1.07) and college graduates (adjusted odds ratio = 2.06; 95% CI, 1.33-3.20) were most likely to have a DPOA. Findings were similar for LW rates. CONCLUSIONS Although a majority of persons with and at risk for the sustained and progressive decisional incapacity of AD are formally planning for the future, a substantial minority are not.

Anticipatory grief in new family caregivers of persons with mild cognitive impairment and dementia.

Anticipatory grief is the process of experiencing normal phases of bereavement in advance of the loss of a significant person. To date, anticipatory grief has been examined in family caregivers to individuals who have had Alzheimer disease (AD) an average of 3 to 6 years. Whether such grief is manifested early in the disease trajectory (at diagnosis) is unknown. Using a cross-sectional design, we examined differences in the nature and extent of anticipatory grief between family caregivers of persons with a new diagnosis of mild cognitive impairment (MCI, n=43) or AD (n=30). We also determined whether anticipatory grief levels were associated with caregiver demographics, caregiving burden, depressive symptoms, and marital quality. The mean anticipatory grief levels were high in the total sample, with AD caregivers endorsing significantly more anticipatory grief than MCI caregivers. In general, AD caregivers endorsed difficulty in functioning, whereas MCI caregivers focused on themes of “missing the person” they once knew. Being a female caregiver, reporting higher levels of objective caregiving burden, and higher depression levels each had independent, statistically significant relationships with anticipatory grief. Given these findings, family caregivers of individuals with mild cognitive deficits or a new AD diagnosis may benefit from interventions specifically addressing anticipatory grief.

Peer-Mentored Research Development Meeting: A Model for Successful Peer Mentoring among Junior Level Researchers.

ObjectiveThis report describes a model for the development, process, and tracking methods of a Peer-mentored Research Development Meeting (PRDM), an interdisciplinary peer mentoring program. The program was initiated in 2004 by a group of post-doctoral scholars and junior faculty from the Schools of the Health Sciences at the University of Pittsburgh.MethodFrom February 2004 through February 2006, PRDM’s first five members tracked and documented their research activity (e.g., manuscripts, grants) every 4 months. The defining features of PRDM are adherence to a structured frequency and format for meetings, systematic tracking and evaluation of research development activities, and maintenance of ongoing relationships with senior mentors.ResultsDuring the 24-month data collection period, members were involved in 91 research development projects including grant applications, journal article manuscripts, book chapters, and conference abstracts. Members’ productivity increased during the 24-month period, as did the efficiency and focus of the completed projects.ConclusionMembers increased the efficiency and focus of their research development activities during the study period. Structured peer-mentoring groups have the potential to enhance research productivity among junior investigators in research intensive environments.

Verbal communication among Alzheimer's disease patients, their caregivers, and primary care physicians during primary care office visits

OBJECTIVE Primary care visits of patients with Alzheimers disease (AD) often involve communication among patients, family caregivers, and primary care physicians (PCPs). The objective of this study was to understand the nature of each individuals verbal participation in these triadic interactions. METHODS To define the verbal communication dynamics of AD care triads, we compared verbal participation (percent of total visit speech) by each participant in patient/caregiver/PCP triads. Twenty-three triads were audio taped during a routine primary care visit. Rates of verbal participation were described and effects of patient cognitive status (MMSE score, verbal fluency) on verbal participation were assessed. RESULTS PCP verbal participation was highest at 53% of total visit speech, followed by caregivers (31%) and patients (16%). Patient cognitive measures were related to patient and caregiver verbal participation, but not to PCP participation. Caregiver satisfaction with interpersonal treatment by PCP was positively related to caregivers own verbal participation. CONCLUSION Caregivers of AD patients and PCPs maintain active, coordinated verbal participation in primary care visits while patients participate less. PRACTICE IMPLICATIONS Encouraging verbal participation by AD patients and their caregivers may increase the AD patients active role and caregiver satisfaction with primary care visits.