Search

Family caregivers offer essential support to persons living with dementia (PLWD). Providing care for more than one family member or close other across adulthood is becoming increasingly common, yet little is known about the ways that caregiving experiences shape caregiver preparedness. The current study presents a grounded theory of future caregiver preparedness in former caregivers of PLWD.A coding team (five coders and two auditors) used Consensual Qualitative Research and grounded theory techniques to analyze transcripts from 32 semi-structured interviews with midlife former caregivers of parents who died following advanced Alzheimer's disease and related dementias.Qualitative analysis revealed two dimensions of future caregiver preparedness: caregiving confidence and caregiving insights. Narratives from caregiving experiences informed participants' descriptions of their future caregiver preparedness. Though some former caregivers described a positive (i.e., boosted or sustained) sense of caregiving confidence following care for their parents, others described a diminished (i.e., restricted or impeded) sense of confidence. Regardless of their confidence, all caregivers described specific caregiving insights related to one or more categories (i.e., caregiving self-conduct, care systems and resources, and relating with a care partner).Preparedness for future caregiving following recent care for a PLWD varies: For some, past experiences appear to offer cumulative advantages in anticipating future care roles, whereas for others, past experiences may contribute to apprehension towards, or rejection of, future care roles. Entering new caregiving roles with diminished confidence may have negative consequences for caregivers' and care partners' wellbeing. Multidimensional assessment of future caregiver preparedness in former caregivers of PLWD may support development of resources for former caregivers entering new caregiving roles.

The merits and effectiveness of advance care planning (ACP) continue to be debated a full 30 years after the passage of the Patient Self-Determination Act. This act gave patients the right to create advance directives, with the objective of ensuring that the care they received at the end of life was consistent with their preferences and goals. ACP has definitively moved beyond the completion of advance directives to encompass the identification of a healthcare agent and the facilitation of communication among patients, surrogates, and clinicians. Nonetheless, the provision of goal-concordant care remains a primary objective for ACP. This article argues that this cannot and should not be the objective for ACP. Patients' goals change, and the provision of goal-concordant care is sometimes incompatible with other critical determinants of appropriate care. Instead, ACP should focus on the objective of improving caregiver outcomes. Surrogate decision-making by caregivers is associated with an elevated risk of post-traumatic stress disorder and other adverse outcomes, and these outcomes can be improved with ACP. ACP focused on caregivers involves helping caregivers to understand how they can help to shape the final chapter in a patient's life story, preventing caregivers from making promises they cannot keep, and preparing them to use all relevant information at the time decisions need to be made.

Objectives To investigate the rate and patterns of accumulation of frailty manifestations in relationship to all-cause mortality and whether there is a point in the progression of frailty beyond which the process becomes irreversible and death becomes imminent (a.k.a. point of no return). Design Longitudinal observational study. Setting Community or a non-nursing home residential care setting. Participants Two thousand five hundred and fifty seven robust older adults identified at baseline in 2011 with follow-up for all-cause mortality between 2011 and 2018. Measurements Frailty was measured by the physical frailty phenotype. Cox models were used to study the relationships of the number of frailty criteria (0-5) at each point in time and its accumulation patterns with all-cause mortality. Markov state-transition models were used to study annual transitions between health states (i.e., frailty, recovery, and death) after becoming frail among those with frailty onset (n = 373). Results There was a nonlinear association between greater number of frailty criteria and increasing risk of mortality, with a notable risk acceleration after having accumulated all five criteria (hazard ratio (HR) = 32.6 vs none, 95% confidence interval (CI) = 15.7-67.5). In addition, the risk of one-year mortality tripled, and the likelihood of recovery (i.e., reverting to be robust or pre-frail) halved among those with five frailty criteria compared to those with three or four criteria. A 50% increase in mortality risk was also associated with frailty onset without (vs with) a prior history of pre-frailty (HR = 1.51, 95% CI = 1.20-1.90). Conclusion Both the number and rate of accumulation of frailty criteria were associated with mortality risk. Although there was insufficient evidence to declare a point of no return, having all five-frailty criteria signals the beginning of a transition toward a point of no return. Ongoing monitoring of frailty progression could aid clinical and personal decision-making regarding timing of intervention and eventual transition from curative to palliative care.

Background/objectives Non-steroidal anti-inflammatory drugs (NSAIDs) can cause kidney injury, especially in older adults. However, previously reported associations between NSAID use and kidney health outcomes are inconsistent and limited by reliance on serum creatinine-based GFR estimates. This analysis investigated the association of NSAID use with kidney damage in older adults using multiple kidney health measures. Design Cross-sectional and longitudinal analyses. Setting Multicenter, community-based cohort. Participants Two thousand nine hundred and ninty nine older adults in the Health ABC Study. A subcohort (n = 500) was randomly selected for additional biomarker measurements. Exposure Prescription and over-the-counter NSAID use ascertained by self-report. Measurements Baseline estimated glomerular filtration rate (eGFR) by cystatin C (cysC), urine albumin-to-creatinine ratio (ACR), kidney injury molecule-1 (KIM-1), and interleukin-18 (IL-18) were measured in 2,999 participants; alpha-1 microglobulin (α1m), neutrophil gelatinase-associated lipocalin (NGAL), propeptide type III procollagen (PIIINP), and uromodulin (UMOD) were measured in 500 participants. GFR was estimated three times over 10 years and expressed as percent change per year. Results Participants had a mean age of 74 years, 51% were female, and 41% African-American. No eGFR differences were detected between NSAID users (n = 655) and non-users (n = 2,344) at baseline (72 ml/min/1.73 m2 in both groups). Compared to non-users, NSAID users had lower adjusted odds of having ACR greater than 30 mg/g (0.67; 95% confidence interval (CI) = 0.51-0.89) and lower mean urine IL-18 concentration at baseline (-11%; 95% CI = -4% to -18%), but similar mean KIM-1 (5%; 95% CI = -5% to 14%). No significant differences in baseline concentrations of the remaining urine biomarkers were detected. NSAID users and non-users did not differ significantly in the rate of eGFR decline (-2.2% vs -2.3% per year). Conclusion Self-reported NSAID use was not associated with kidney dysfunction or injury based on multiple measures, raising the possibility of NSAID use without kidney harm in ambulatory older adults. More research is needed to define safe patterns of NSAID consumption.

Although advance care planning (ACP) is beneficial if dementia develops, and virtually all older adults are at risk for this disease, older adults do not consistently engage in ACP. Health behavior models have highlighted the importance of perceived susceptibility to medical conditions in motivating behavior. Following these models, we sought to determine how often older adults believe they are not at risk of developing dementia and to examine the association between perceived dementia risk and ACP participation.We performed a cross-sectional study of community-dwelling adults without cognitive impairment, aged ≥65 years, who were interviewed for the Health and Retirement Study in 2016 and asked about their perceived dementia risk (n = 711). Perceived dementia risk was ascertained with this question: "on a scale of 0 to 100, what is the percent chance that you will develop dementia sometime in the future?" We used multivariable-adjusted logistic regression to evaluate the association between perceived risk (0% versus0%) and completion of a living will, appointment of a durable power of attorney for healthcare decisions, and discussion of treatment preferences.Among respondents, 10.5% reported a perceived dementia risk of 0%. Perceived risk of 0% was associated with lower odds of completing a living will (OR 0.53; 95% CI, 0.30-0.93) and discussing treatment preferences (OR 0.51; 95% CI, 0.28-0.93) but not appointment of a durable power of attorney (OR 0.77; 95% CI, 0.42-1.39). Many respondents with perceived dementia risk0% had not completed ACP activities, including a substantial minority of those with perceived risk50%.Older adults with no perceived dementia risk are less likely to participate in several forms of ACP, but the fact that many older adults with high levels of perceived risk had not completed ACP activities suggests that efforts beyond raising risk awareness are needed to increase engagement.

Objectives Concerns have repeatedly been raised about end-of-life decision making when a patient with diminished capacity is represented by a professional guardian, a paid official appointed by a judge. Such guardians are said to choose high-intensity treatment even when it is unlikely to be beneficial or to leave pivotal decisions to the court. End-of-life decision making by professional guardians has not been examined systematically, however. Design Retrospective cohort study. Setting Inpatient and outpatient facilities in the Department of Veterans Affairs (VA) Connecticut Healthcare System. Participants Decedent patients represented by professional guardians who received care at Connecticut VA facilities from 2003 to 2013 and whose care in the last month of life was documented in the VA record. Measurements Through chart reviews, we collected data about the guardianship appointment, the patient's preferences, the guardian's decision-making process, and treatment outcomes. Results There were 33 patients with professional guardians who died and had documentation of their end-of-life care. The guardian sought judicial review for 33%, and there were delays in decision making for 42%. In the last month of life, 29% of patients were admitted to the intensive care unit, intubated, or underwent cardiopulmonary resuscitation; 45% received hospice care. Judicial review and high-intensity treatment were less common when information about the patient's preferences was available. Conclusion Rates of high-intensity treatment and hospice care were similar to older adults overall. Because high-intensity treatment was less likely when the guardian had information about a patient's preferences, future work should focus on advance care planning for individuals without an appropriate surrogate. J Am Geriatr Soc 67:2161-2166, 2019.

Background/objectives To determine the feasibility of conducting a cluster randomized controlled trial providing individualized feedback reports to increase advance care planning (ACP) engagement in the primary care setting. Design Pilot cluster randomized controlled trial. Setting Two primary care practices selected for geographic colocation. Participants Adults aged 55 years and older. Intervention Brief assessment of readiness to engage in (stage of change for) three ACP behaviors (healthcare agent assignment, communication with agent about quality vs quantity of life, and living will completion) generating an individualized feedback report, plus a stage-matched brochure. Measures Patient recruitment and retention, intervention delivery, baseline characteristics, and stage of change movement. Results Recruitment rates differed by practice. Several baseline sociodemographic characteristics differed between the 38 intervention and 41 control participants, including employment status, education, and communication with healthcare agent. Feedback was successfully delivered to all intervention participants, and over 90% of participants completed a 2-month follow-up. More intervention participants demonstrated progression in readiness than did control participants, without testing for statistical significance. Conclusions This pilot demonstrates opportunities and challenges of performing a clustered randomized controlled trial in primary care practices. Differences in the two practice populations highlight the challenges of matching sites. There was a signal for behavior change in the intervention group. J Am Geriatr Soc 67:1917-1921, 2019.

Frailty has long been an important concept in the practice of geriatric medicine and in gerontological research, but integration and implementation of frailty concepts into clinical practice in the United States has been slow. The National Institute on Aging (NIA) Intramural Research Program and the Johns Hopkins Older Americans Independence Center sponsored a symposium to identify potential barriers that impede the movement of frailty into clinical practice and to highlight opportunities to facilitate the further integration of frailty into clinical practice. Primary and subspecialty care providers, and investigators working to integrate and translate new biological aging knowledge into more specific preventive and treatment strategies for frailty provided the meeting content. Recommendations included a call for more specific language that clarifies conceptual differences between frailty definitions and measurement tools; the development of randomized controlled trials to test whether specific intervention strategies for a variety of conditions differently affect frail and non-frail individuals; development of implementation studies and therapeutic trials aimed at tailoring care as a function of pragmatic frailty markers; the use of deep learning and dynamic systems approaches to improve the translatability of findings from epidemiological studies; and the incorporation of advances in aging biology, especially focused on mitochondria, stem cells, and senescent cells, toward the further development of biologically targeted intervention and prevention strategies that can be used to treat or prevent frailty. J Am Geriatr Soc 67:1559-1564, 2019.

Older adults are prescribed a growing number of medications. Polypharmacy, commonly considered the receipt of five or more medications, is associated with a range of adverse outcomes. There is a debate about the reason(s) why. On one side is the assertion that older persons are being prescribed too many medications, with the number of medications increasing the risk of adverse events. On the other side is the observation that polypharmacy is associated both with overprescribing of inappropriate medications and underprescribing of appropriate medications. This leads to the concept of "inappropriate" vs "appropriate" polypharmacy, with the latter resulting from the prescription of many correct medications to persons with multiple chronic conditions. Few studies have examined the health outcomes associated with adding and/or removing medications to address this debate directly. The criteria used to identify underutilized medications are based on results of randomized controlled trials that may not be generalizable to older adults. Several randomized controlled trials and many more observational studies provide evidence that these criteria overestimate medication benefits and underestimate harms. In addition, evidence suggests that the marginal effects of medications added to an already complex regimen differ from their effects when considered individually. Although in selected circumstances adding medications results in benefit to patients, patients with multimorbidity and frailty/disability have susceptibilities that can decrease the likelihood of medication benefit and increase the likelihood of harms. The identification of appropriate polypharmacy requires more robust criteria to evaluate the net effects of complex medication regimens.

OBJECTIVES To examine factors associated with caregiver burden from a multifactorial perspective by examining caregiver and care recipient characteristics and a full range of caregiving tasks. DESIGN Nationally representative surveys of community‐dwelling older adults and their family caregivers residing in the United States. SETTING 2011 National Health and Aging Trends Study and National Study of Caregiving. PARTICIPANTS Community‐dwelling older adults and their family caregivers. MEASUREMENTS Caregiver burden, comprising emotional, physical, and financial difficulties associated with caregiving. RESULTS An estimated 14.9 million caregivers assisted 7.6 million care recipients. More than half of caregivers reported burden related to caregiving. In a multivariable regression model, caregivers who assisted with more activities of daily living and instrumental activities of daily living, health management tasks, and health system logistics were more likely to experience burden, as were female caregivers, adult child caregivers, caregivers in poor health, caregivers with anxiety symptoms, and those using respite care. Dementia was the only care recipient characteristic associated with burden. CONCLUSION Caregiver characteristics and provision of caregiving tasks determine caregiver burden more than care recipient characteristics. Absence of an association between type of a care recipient's chronic conditions and burden, except for dementia, suggests that the tasks that caregivers who assist older adults with a variety of health conditions undertake shape the experience of caregiving. J Am Geriatr Soc 67:277–283, 2019.

Background/objectives Advance care planning (ACP) traditionally involves asking individuals about their treatment preferences during a brief period of incapacity near the end of life. Because dementia leads to prolonged incapacity, with many decisions arising before a terminal event, it has been suggested that dementia-specific ACP is necessary. We sought to elicit the perspectives of older adults with early cognitive impairment and their caregivers on traditional and dementia-specific ACP. Design Qualitative study with separate focus groups for patients and caregivers. Setting Memory disorder clinics. Participants Twenty eight persons aged 65+ with mild cognitive impairment or early dementia and 19 caregivers. Measurements Understanding of dementia trajectory and types of planning done; how medical decisions would be made in the future; thoughts about these decisions. Results No participants had engaged in any written form of dementia-specific planning. Barriers to dementia-specific ACP emerged, including lack of knowledge about the expected trajectory of dementia and potential medical decisions, the need to stay focused in the present because of fear of loss of self, disinterest in planning because the patient will not be aware of decisions, and the expectation that involved family members would take care of issues. Some patients had trouble engaging in the discussion. Patients had highly variable views on what the quality of their future life would be and on the leeway their surrogates should have in decision making. Conclusions Even among patients with early cognitive impairment seen in specialty clinics and their caregivers, most were unaware of the decisions they could face, and there were many barriers to planning for these decisions. These issues would likely be magnified in more representative populations, and highlight challenges to the use of dementia-specific advance directive documents.

Background/objectives Little is known about older adults who have intact capacity but do not have a desired surrogate to make decisions if their capacity becomes impaired. Design Cross-sectional study of a nationally representative sample. Setting National Social Life, Health, and Aging Project (NSHAP), 2005-2006. Participants Community-dwelling older adults without known cognitive impairment, aged 57 to 85, interviewed as part of NSHAP (n = 2,767). Measurements We examined demographic, medical, and social connectedness characteristics associated with answering "no" to this question: "Do you have someone who you would like to make medical decisions for you if you were unable, as for example if you were seriously injured or very sick?" Because many states permit nuclear family to make decisions for persons with no legally appointed health care agent, we used logistic regression to identify factors associated with individuals who were ill suited to this paradigm in the sense that they had nuclear family but did not have a desired surrogate. Results Among NSHAP respondents, 7.5% (95% confidence interval = 6.4-8.7) did not have a desired surrogate. Nearly 90% of respondents without desired surrogates had nuclear family. Compared with respondents with desired surrogates, those without desired surrogates had lower indicators of social connectedness. On average, however, they had four confidants, approximately 70% socialized at least monthly, and more than 90% could discuss their health with a confidant. Among respondents who had nuclear family, few characteristics distinguished those with and without desired surrogates. Conclusion Nearly 8% of older adults did not have a desired surrogate. Most had nuclear family and were not socially disconnected. Older adults should be asked explicitly about a desired surrogate, and strategies are needed to identify surrogates for those who do not have family or would not choose family to make decisions for them.

Background/objectives Experts have suggested that patients represented by professional guardians receive higher intensity end-of-life treatment than other patients, but there is little corresponding empirical data. Design Retrospective cohort study. Setting and participants Among veterans aged 65 and older who died from 2011 to 2013, we used Minimum Data Set assessments to identify those who were nursing home residents and had moderately severe or severe dementia. We applied methods developed in prior work to determine which of these veterans had professional guardians. Decedent veterans with professional guardians were matched to decedent veterans without guardians in a 1:4 ratio, according to age, sex, race, dementia severity, and nursing facility type (VA based vs non-VA). Measurements Our primary outcome was intensive care unit (ICU) admission in the last 30 days of life. Secondary outcomes included mechanical ventilation and cardiopulmonary resuscitation in the last 30 days of life, feeding tube placement in the last 90 days of life, three or more nursing home-to-hospital transfers in the last 90 days of life, and in-hospital death. Results ICU admission was more common among patients with professional guardians than matched controls (17.5% vs 13.7%), but the difference was not statistically significant (adjusted odds ratio = 1.33; 95% confidence interval = .89-1.99). There were no significant differences in receipt of any other treatment; nor was there a consistent pattern. Mechanical ventilation and cardiopulmonary resuscitation were more common among patients with professional guardians, and feeding tube placement, three or more end-of-life hospitalizations, and in-hospital death were more common among matched controls. Conclusion Rates of high-intensity treatment were similar whether or not a nursing home resident with dementia was represented by a professional guardian. This is in part because high-intensity treatment occurred more frequently than expected among patients without guardians.

Objectives To explore patient and caregiver experiences, preferences, and attitudes toward the provision and receipt of caregiving assistance with medical tasks. Design Qualitative study consisting of in‐depth interviews with 20 patient–caregiver dyads. Setting Community and academic‐affiliated primary care clinics. Participants Individuals aged 65 or older with 2 or more health conditions and their family caregivers (n=20 patient–caregiver dyads). Measurements Open‐ended questions were asked about the tasks that the patient and caregiver performed to manage the patient's health conditions; questions were designed to elicit participant reactions and attitudes toward the help they provided or received. Transcripts were analyzed using the constant comparative method. Results Participant preferences and attitudes toward the receipt and provision of disease management tasks were highly personal. Participant responses clustered into 2 caregiving typologies: supportive caregiving relationships and conflicted caregiving relationships. Supportive relationships were characterized by patient–caregiver agreement about caregiver level of involvement, agreement about one another's competency to perform disease‐related tasks, mutual understanding, collaborative decision‐making and disease management, and use of family and formal caregiving. Conflicted relationships were characterized by disagreement about caregiver level of involvement, disagreement about one another's competency to perform disease management tasks, underappreciation of one another's experiences, disagreement over decision‐making and disease management, and use of formal caregiving. Conclusions The views that patient–caregiver dyads expressed in this study illustrate the varied preferences and attitudes toward caregiving assistance with multiple health conditions. These findings support a dyadic approach to evaluating and addressing patient and caregiver needs and attitudes toward provision of assistance.