Former dementia caregivers' high and low point narratives: what is remembered, and how is it shared?

OBJECTIVES: To characterize core themes conveyed by caregivers when sharing narratives of high and low caregiving points and to describe how caregivers structured these narratives. METHODS: Using consensual qualitative research and thematic analysis, high and low point narratives from 32 former caregivers of persons living with dementia were examined. RESULTS: High point narrative themes involved strengthening relationships with care partners, fulfillment derived from care, lighthearted moments, and fostering the care partners' joy and dignity. Low point narratives involved family conflict and lack of support, personal deficiencies, loss of the caregivers' 'pre-caregiving' life, health system failures, and alienation from their care partner. Across high and low points, caregivers' narratives were structured by three types of narrative elaborations; details unnecessary for factual recall but which enriched narrative sharing. CONCLUSION: Themes across high and low point narratives encompassed relational issues, how caregiving shaped the caregiver's self-efficacy, and factors that made navigating caregiving easier or more difficult. Both high point and low point narration often involved describing positive aspects of caregiving (PAC). Narrative elaborations may be used by former caregivers to engage in deeper evaluation of their caregiving experiences. We consider how psychotherapeutic techniques can help former caregivers reframe maladaptive narratives, supporting their mental health.

Trajectories of physical functioning among US adults with cognitive impairment.

BACKGROUND: physical functioning impairment is common among persons with cognitive impairment, but little is known about physical functioning trajectories across the US population or how trajectories may differ among persons with dementia and mild cognitive impairment (MCI). OBJECTIVE: to examine trajectories of physical functioning among persons with MCI and dementia in the USA. DESIGN: we used data from the National Health and Aging Trends study (NHATS) 2011-18. Physical functioning was assessed using the NHATS Expanded Short Physical Performance Battery. PARTICIPANTS: the 661 individuals with MCI and 980 individuals with dementia were included in this study. METHODS: we applied group-based trajectory models to identify latent groups and estimate their trajectories. Multinomial logistic regressions were applied to examine relationships between sociodemographic and health characteristics and trajectory group memberships. RESULTS: both MCI- and dementia-specific trajectories differed at baseline levels and declined at varying rates across groups. Approximately, 78.43% of persons with MCI were in trajectories with a moderate rate of decline, with only 9.75% in a trajectory with good physical function and 11.82% with poor physical function without as much change over time. Among persons with dementia, approximately 81.4% experienced moderate or fast declines, and 18.52% with virtually no functional ability remained at this same low level. Worse physical functioning trajectories were found among persons who were females, Blacks, with at least four comorbidities, and among persons who had a low socioeconomic status. CONCLUSIONS: persons with both dementia and MCI experienced steady declines in physical functioning. Socioeconomically disadvantaged groups have worse physical functioning trajectories.

Prediction of physical functioning and general health status trajectories on mortality among persons with cognitive impairment.

BACKGROUND: The concern posed by the confluence of aging and cognitive impairment is growing in importance as the U.S. population rapidly ages. As such, we sought to examine the predictive power of physical functioning (PF) and general health status (GHS) trajectories on mortality outcomes among persons with cognitive impairment (PCIs). METHODS: We used group-based trajectory models to identify latent group memberships for PF trajectories in 1,641 PCIs and GHS trajectories in 2,021 PCIs from the National Health and Aging Trends Survey (2011-2018) and applied logistic regressions to predict mortality using these memberships controlling for individual characteristics. RESULTS: We identified six trajectory groups for PF and four groups for GHS. Trajectory group memberships for both outcomes significantly predicted mortality. For PF, group memberships largely captured the average levels over time, and worse trajectories (i.e., lower baselines and faster declines) were associated with higher odds of death. The highest mortality risk was associated with the group experiencing a sharp decline early in its PF trajectory, although its average level across time was not the lowest. For GHS, we observed two groups with comparable average levels across time, but the one with a convex-shape trajectory had much higher mortality risks compared to the one with a concave-shape trajectory. CONCLUSIONS: Our findings highlighted that health trajectories predicted mortality among PCIs, not only because of general levels but also because of the shapes of declines. Close monitoring health deterioration of PCIs is crucial to understand the health burden of this population and to make subsequent actions.

Effect of the STAMP (Sharing and Talking About My Preferences) Intervention on Completing Multiple Advance Care Planning Activities in Ambulatory Care : A Cluster Randomized Controlled Trial.

BACKGROUND: Interventions with the potential for broad reach in ambulatory settings are necessary to achieve a life course approach to advance care planning. OBJECTIVE: To examine the effect of a computer-tailored, behavioral health model-based intervention on the engagement of adults in advance care planning recruited from ambulatory care settings. DESIGN: Cluster randomized controlled trial with participant-level analysis. (ClinicalTrials.gov: NCT03137459). SETTING: 10 pairs of primary and selected specialty care practices matched on patient sociodemographic information. PARTICIPANTS: English-speaking adults aged 55 years or older; 454 adults at practices randomly assigned to usual care and 455 at practices randomly assigned to intervention. INTERVENTION: Brief telephone or web-based assessment generating a mailed, individually tailored feedback report with a stage-matched brochure at baseline, 2 months, and 4 months. MEASUREMENTS: The primary outcome was completion of the following 4 advance care planning activities at 6 months: identifying and communicating with a trusted person about views on quality versus quantity of life, assignment of a health care agent, completion of a living will, and ensuring that the documents are in the medical record-assessed by a blinded interviewer. Secondary outcomes were completion of individual advance care planning activities. RESULTS: Participants were 64% women and 76% White. The mean age was 68.3 years (SD, 8.3). The predicted probability of completing all advance care planning activities in usual care sites was 8.2% (95% CI, 4.9% to 11.4%) versus 14.1% (CI, 11.0% to 17.2%) in intervention sites (adjusted risk difference, 5.2 percentage points [CI, 1.6 to 8.8 percentage points]). Prespecified subgroup analysis found no statistically significant interactions between the intervention and age, education, or race. LIMITATIONS: The study was done in a single region and excluded non-English speaking participants. No information was collected about nonparticipants. CONCLUSION: A brief, easily delivered, tailored print intervention increased participation in advance care planning in ambulatory care settings. PRIMARY FUNDING SOURCE: National Institute of Nursing Research and National Institute of Aging.

Qualitative analysis of reasons for hospitalization for severe hypoglycemia among older adults with diabetes.

BACKGROUND: Hospital admissions for severe hypoglycemia are associated with significant healthcare costs, decreased quality of life, and increased morbidity and mortality, especially for older adults with diabetes. Understanding the reasons for hypoglycemia hospitalization is essential for the development of effective interventions; yet, the causes and precipitants of hypoglycemia are not well understood. METHODS: We conducted a qualitative study of non-nursing home patients aged 65 years or older without cognitive dysfunction admitted to a single tertiary-referral hospital with diabetes-related hypoglycemia. During the hospitalization, we conducted one-on-one, in-depth, semi-structured interviews to explore: (1) experiences with diabetes management among patients hospitalized for severe hypoglycemia; and (2) factors contributing and leading to the hypoglycemic event. Major themes and sub-themes were extracted using the constant comparative method by 3 study authors. RESULTS: Among the 17 participants interviewed, the mean age was 78.9 years of age, 76.5% were female, 64.7% African American, 64.7% on insulin, and patients had an average of 13 chronic conditions. Patients reported: (1) surprise at hypoglycemia despite living with diabetes for many years; (2) adequate support, knowledge, and preparedness for hypoglycemia; (3) challenges balancing a diet that minimizes hyperglycemia and prevents hypoglycemia; (4) the belief that hyperglycemia necessitates medical intervention, but hypoglycemia does not; and (5) tension between clinician-prescribed treatment plans and self-management based on patients' experience. Notably, participants did not report the previously cited reasons for hypoglycemia, such as food insecurity, lack of support or knowledge, or treatment errors. CONCLUSIONS: Our findings suggest that some hypoglycemic events may not be preventable, but in order to reduce the risk of hypoglycemia in older individuals at risk: (1) healthcare systems need to shift from their general emphasis on the avoidance of hyperglycemia towards the prevention of hypoglycemia; and (2) clinicians and patients need to work together to design treatment regimens that fit within patient capacity and are flexible enough to accommodate life's demands.

Assessing an Interprofessional Polypharmacy and Deprescribing Educational Intervention for Primary Care Post-graduate Trainees: a Quantitative and Qualitative Evaluation.

BACKGROUND: Polypharmacy and potentially inappropriate medications (PIMs) are increasingly common and associated with adverse health effects. However, post-graduate education in polypharmacy and complex medication management for older adults remain limited. OBJECTIVE: The Initiative to Minimize Pharmaceutical Risk in Older Veterans (IMPROVE) polypharmacy clinic was created to provide a platform for teaching internal medicine (IM) and nurse practitioner (NP) residents about outpatient medication management and deprescribing for older adults. We aimed to assess residents' knowledge of polypharmacy and perceptions of this interprofessional education intervention. DESIGN: A prospective cohort study with an internal comparison group. PARTICIPANTS: IM residents and NP residents; Veterans ≥ 65 years and taking ≥ 10 medications. INTERVENTION: IMPROVE consists of a pre-clinic conference, shared medical appointment, individual appointment, and interprofessional precepting model. MAIN MEASURES: We assessed residents' performance on a pre-post knowledge test, residents' qualitative assessment of the educational impact of IMPROVE, and the number and type of medications discontinued or decreased. KEY RESULTS: The IMPROVE intervention group (n = 18) had a significantly greater improvement in test scores than the control group (n = 18) (14% ± 15% versus - 1.3% ± 16%) over a period of 6 months (Wilcoxon rank sum, p = 0.019). In focus groups, residents (n = 17) reported perceived improvements in knowledge and skills, noting that the experience changed their practice in other clinical settings. In addition, residents valued the unique interprofessional experience. Veterans (n = 71) had a median of 15 medications (IQR 12-19), and a median of 2 medications (IQR 1-3) was discontinued. Vitamins, supplements, and cardiovascular medications were the most commonly discontinued medications, and cardiovascular medications were the most commonly decreased in dose or frequency. CONCLUSIONS: Overall, IMPROVE is an effective model of post-graduate primary care training in complex medication management and deprescribing that improves residents' knowledge and skills, and is perceived by residents to influence their practice outside the program.

Utilizing patient data from the veterans administration electronic health record to support web-based clinical decision support: informatics challenges and issues from three clinical domains.

BACKGROUND: The US Veterans Administration (VA) has developed a robust and mature computational infrastructure in support of its electronic health record (EHR). Web technology offers a powerful set of tools for structuring clinical decision support (CDS) around clinical care. This paper describes informatics challenges and design issues that were confronted in the process of building three Web-based CDS systems in the context of the VA EHR. METHODS: Over the course of several years, we implemented three Web-based CDS systems that extract patient data from the VA EHR environment to provide patient-specific CDS. These were 1) the VACS (Veterans Aging Cohort Study) Index Calculator which estimates prognosis for HIV+ patients, 2) Neuropath/CDS which assists in the medical management of patients with neuropathic pain, and 3) TRIM (Tool to Reduce Inappropriate Medications) which identifies potentially inappropriate medications in older adults and provides recommendations for improving the medication regimen. RESULTS: The paper provides an overview of the VA EHR environment and discusses specific informatics issues/challenges that arose in the context of each of the three Web-based CDS systems. We discuss specific informatics methods and provide details of approaches that may be useful within this setting. CONCLUSIONS: Informatics issues and challenges relating to data access and data availability arose because of the particular architecture of the national VA infrastructure and the need to link to that infrastructure from local Web-based CDS systems. Idiosyncrasies of VA patient data, especially the medication data, also posed challenges. Other issues related to specific functional needs of individual CDS systems. The goal of this paper is to describe these issues so that our experience may serve as a useful foundation to assist others who wish to build such systems in the future.

A Delphi process to address medication appropriateness for older persons with multiple chronic conditions.

BACKGROUND: Frameworks exist to evaluate the appropriateness of medication regimens for older patients with multiple medical conditions (MCCs). Less is known about how to translate the concepts of the frameworks into specific strategies to identify and remediate inappropriate regimens. METHODS: Modified Delphi method involving iterative rounds of input from panel members. Panelists (n = 9) represented the disciplines of nursing, medicine and pharmacy. Included among the physicians were two geriatricians, one general internist, one family practitioner, one cardiologist and two nephrologists. They participated in 3 rounds of web-based anonymous surveys. RESULTS: The panel reached consensus on a set of markers to identify problems with medication regimens, including patient/caregiver report of non-adherence, medication complexity, cognitive impairment, medications identified by expert opinion as inappropriate for older persons, excessively tight blood sugar and blood pressure control among persons with diabetes mellitus, patient/caregiver report of adverse medication effects or medications not achieving desired outcomes, and total number of medications. The panel also reached consensus on approaches to address these problems, including endorsement of strategies to discontinue medications with known benefit if necessary because of problems with feasibility or lack of alignment with patient goals. CONCLUSIONS: The results of the Delphi process provide the basis for an algorithm to improve medication regimens among older persons with MCCs. The algorithm will require assessment not only of medications and diagnoses but also cognition and social support, and it will support discontinuation of medications both when risks outweigh benefits and when regimens are not feasible or do not align with goals.

Patient-defined goals for the treatment of severe aortic stenosis: a qualitative analysis.

BACKGROUND: Patients with severe aortic stenosis (AS) at high risk for aortic valve replacement are a unique population with multiple treatment options, including medical therapy, surgical aortic valve replacement and transcatheter aortic valve replacement (TAVR). Traditionally, in elderly populations, goals of treatment may favour quality of life over survival. Professional guidelines recommend that clinicians engage patients in shared decision making, a process that may lead to decisions more aligned with patient-defined goals of care. Goals of care for high-risk patients with AS are not well defined in the literature, and patient-reported barriers to shared decision making highlight the need for explicit encouragement from clinicians for patient involvement. OBJECTIVE: The purpose of this study was to elicit and report patient-defined goals from elderly patients facing treatment decisions for severe AS. METHODS: This analysis was conducted at Dartmouth-Hitchcock Medical Center, an academic medical institution. In a retrospective manner, we qualitatively analysed goal statements reported by high-risk, elderly patients with severe AS evaluated for TAVR between June 2012 and August 2014. RESULTS: Forty-six patients provided treatment goals during consideration of TAVR and defined preferred outcomes as maintaining independence, staying alive, reducing symptoms or, most commonly, increasing their ability to do a specific activity or hobby. CONCLUSIONS: In the high-risk patient population considering TAVR, patient-reported goals may be obtained with a simple question delivered during the clinical encounter. Encouraging patients to define their goals may lead to a greater degree of shared decision making, as advocated in current professional guidelines.

Functional disability among older women with fecal incontinence.

OBJECTIVE: The prevalence of functional disability for basic activities of daily living (ADLs) in older women with fecal incontinence (FI) is not well characterized. Our objective was to determine the prevalence of functional disability among community-dwelling older women with FI. STUDY DESIGN: We conducted a secondary database analysis of the 2005-2006 National Social Life, Health and Aging Project, a cross-sectional study of community-dwelling older adults that had been conducted by single in-home interviews. FI was defined as an affirmative answer to the question, "Have you lost control of your bowels (stool incontinence or anal incontinence)?" with a frequency of "at least monthly." We then examined functional status. Women were asked about 7 basic ADLs. Statistical analyses with percentage estimates and 95% confidence intervals (CIs) were performed. RESULTS: We included 1412 women in our analysis. FI, at least monthly, was reported by 5.5% of community-dwelling older women (n = 77); 63.2% (95% CI, 50.1-76.4) of the women with FI reported difficulty or dependence with ≥1 ADLs, and 31.2% (95% CI, 18.9-43.6) of the women specifically reported difficulty or dependence with using the toilet. After adjustment for age category, race/ethnicity, education level, women with FI had 2.6 increased odds (95% CI, 1.26-5.35) of difficulty or dependence compared with women with no FI. Other significant risk factors for increased functional difficulty/dependence included obesity (body mass index, ≥30 kg/m(2)) and depressive symptoms. CONCLUSION: Consistent with other large epidemiologic studies, we found monthly FI was reported by 5.5% of older women (n/N = 77/1412). More than 60% of community-dwelling older women with FI report functional difficulty or dependence with ≥1 ADL and specifically; more than 30% of women with FI report difficulty or dependence using/reaching the toilet. Because of the high prevalence of functional disability in older women with FI, we purpose that initial evaluation and treatment of FI may be improved by considering functional status.

Husbands' and Wives' Physical Activity and Depressive Symptoms: Longitudinal Findings from the Cardiovascular Health Study.

BACKGROUND: When examining older adults' health behaviors and psychological health, it is important to consider the social context. PURPOSE: The purpose of this study was to examine in older adult marriages whether each spouse's physical activity predicted changes in their own (actor effects) and their partner's (partner effects) depressive symptoms. Gender differences were also examined. METHOD: Each spouse within 1260 married couples (at baseline) in the Cardiovascular Health Study completed self-report measures at wave 1 (1989-1990), wave 3 (1992-1993), and wave 7 (1996-1997). Dyadic path analyses were performed. RESULTS: Husbands' physical activity significantly predicted own decreased depressive symptoms (actor effect). For both spouses, own physical activity did not significantly predict the spouse's depressive symptoms (partner effects). However, husbands' physical activity and depressive symptoms predicted wives' physical activity and depressive symptoms (partner effects), respectively. Depressive symptoms did not predict physical activity. CONCLUSION: Findings suggest that husbands' physical activity is particularly influential for older married couples' psychological health.

Frailty, cognitive impairment, and functional disability in older women with female pelvic floor dysfunction.

INTRODUCTION AND HYPOTHESIS: There is a growing body of evidence demonstrating frailty as an important predictor of surgical outcomes in older adults undergoing major surgeries. The age-related onset of many symptoms of female pelvic floor dysfunction (PFD) in women suggests that many women seeking treatment for PFD may also have a high prevalence of frailty, which could potentially impact the risks and benefits of surgical treatment options. Our primary objective was to determine the prevalence of frailty, cognitive impairment, and functional disability in older women seeking treatment for PFD. METHODS: We conducted a cross-sectional study with prospective recruitment between September 2011 and September 2012. Women, age 65 years and older, were recruited at the conclusion of their new patient consultation for PFD at a tertiary center. A comprehensive geriatric screening including frailty measurements (Fried Frailty Index), cognitive screening (Saint Louis University Mental Status score), and functional status evaluation for activities of daily living (Katz ADL score) was conducted. RESULTS: Sixteen percent (n/N = 25/150) of women were categorized as frail according to the Fried Frailty Index score. After adjusting for education level, 21.3 % of women (n/N = 32/150) screened positive for dementia and 46 (30.7 %) reported functional difficulty or dependence in performing at least one Katz ADL. Sixty-nine women (46.0 %) chose surgical options for treatment of their PFD at the conclusion of their new patient visit with their physician. CONCLUSIONS: Frailty, cognitive impairment, and functional disability are common in older women seeking treatment for PFD.

Macrophage migration inhibitory factor deficiency in chronic obstructive pulmonary disease.

The pathogenesis of chronic obstructive pulmonary disease (COPD) remains poorly understood. Cellular senescence and apoptosis contribute to the development of COPD; however, crucial regulators of these underlying mechanisms remain unknown. Macrophage migration inhibitory factor (MIF) is a pleiotropic cytokine that antagonizes both apoptosis and premature senescence and may be important in the pathogenesis of COPD. This study examines the role of MIF in the pathogenesis of COPD. Mice deficient in MIF (Mif(-/-)) or the MIF receptor CD74 (Cd74(-/-)) and wild-type (WT) controls were aged for 6 mo. Both Mif(-/-) and Cd74(-/-) mice developed spontaneous emphysema by 6 mo of age compared with WT mice as measured by lung volume and chord length. This was associated with activation of the senescent pathway markers p53/21 and p16. Following exposure to cigarette smoke, Mif(-/-) mice were more susceptible to the development of COPD and apoptosis compared with WT mice. MIF plasma concentrations were measured in a cohort of 224 human participants. Within a subgroup of older current and former smokers (n = 72), MIF concentrations were significantly lower in those with COPD [8.8, 95%CI (6.7-11.0)] compared with those who did not exhibit COPD [12.7 ng/ml, 95%CI (10.6-14.8)]. Our results suggest that both MIF and the MIF receptor CD74 are required for maintenance of normal alveolar structure in mice and that decreases in MIF are associated with COPD in human subjects.

A comparison of the willingness of resident and attending physicians to comply with the requests of patients at the end of life.

BACKGROUND: Little is known about the differences between physicians in training and post training in their willingness to comply with patient requests at the end of life. OBJECTIVE: To compare the attitudes of attendings and residents regarding a range of patient requests at the end of life DESIGN: Written, cross-sectional survey PARTICIPANTS: The cohort included 191 attendings randomly selected across the state of Connecticut and 240 residents from 2 university-affiliated Internal Medicine programs. MAIN MEASURES: We surveyed attendings and residents about their willingness to honor the requests of the same decisionally capable elderly patient in five scenarios involving different requests regarding end-of-life treatment. RESULTS: While a large majority of both attendings and residents were willing to comply with each of the requests to withhold intubation (100 % and 94 %, respectively), to extubate (92 % and 77 %), and to give increasingly higher doses of narcotics (94 % and 71 %), a significantly larger proportion of attendings versus residents was willing to comply with each of these requests. Small proportions of attendings and residents were willing to prescribe a lethal amount of sleeping pills (3 % and 5 %, respectively) and to give a lethal injection in its current illegal state (1 % and 4 %). A significantly larger proportion of residents (32 %) compared to attendings (19 %) was willing to give a lethal injection if legal. Adjusting for sociodemographic factors, attending status was independently associated with willingness to extubate [adjusted odds ratio (AOR) = 3.0, 95 % CI = 1.6-5.7] and to give a lethal injection if legal (AOR = 0.5, 95 % CI = 0.3-0.8). The proportion of physicians willing to extubate increased across years since graduation, with the greatest differences occurring across the residency years (69 % to 86 %). CONCLUSIONS AND RELEVANCE: Clinical experience was an important determinant of physicians' willingness to perform multiple patient requests at the end of life, with substantial changes in attitudes occurring during residency training. More research is needed to determine whether dedicated clinical exposure for physicians in training influences attitudes.

Rewriting the Story of Mid- and Late-Life Family Caregiving: Applying a Narrative Identity Framework.

Family caregivers of older people with health needs often provide long-term, intensive support. Caregivers are, in turn, shaped by these caregiving experiences. According to the narrative identity framework, self-narratives from lived experiences influence self-beliefs and behaviors. We assert that family caregiving experiences, filtered through individuals' memory systems as self-narratives, provide substantial scaffolding for navigating novel challenges in late life. Self-narratives from caregiving can guide positive self-beliefs and behaviors, leading to constructive health-focused outcomes, but they also have the potential to guide negative self-beliefs or behaviors, causing adverse consequences for navigating late-life health. We advocate for incorporating the narrative identity framework into existing caregiving stress models and for new programs of research that examine central mechanisms by which caregiving self-narratives guide self-beliefs and behavioral outcomes. To provide a foundation for this research, we outline 3 domains in which caregiving self-narratives may substantially influence health-related outcomes. This article concludes with recommendations for supporting family caregivers moving forward, highlighting narrative therapy interventions as innovative options for reducing the negative consequences of maladaptive caregiving self-narratives.