Goals for the care of frail older adults: do caregivers and clinicians agree?

PURPOSE: Establishing shared treatment goals for patients may improve the quality of care by facilitating achievement of appropriate and desired outcomes. The purpose of this study was to describe types of family caregiver and physician treatment goals for frail elderly patients who had a high prevalence of cognitive impairment, and to ascertain the level of agreement between family caregivers and physicians on principal treatment goals. SUBJECTS AND METHODS: We surveyed family caregivers and physicians for 200 consecutive older adults who were initially evaluated at the outpatient geriatric assessment center of a major teaching hospital. Treatment goals for patients were measured after a comprehensive geriatric assessment. RESULTS: Goals commonly chosen as most important by family caregivers and physicians pertained to day-to-day functioning (61 [31%] family caregivers, 81 [41%] physicians), behavior and emotional health (56 [28%] family caregivers, 50 [25%] physicians), and safety (40 [20%] family caregivers, 29 [15%] physicians). Although a substantial proportion of family caregiver and physician pairs shared at least one goal (157 [79%] of 200), agreement on presence or absence of individual categories of goals was poor (kappas from -0.19 to 0.28), and agreement on the most important goal was also poor (kappa 0.20). CONCLUSIONS: Agreement on treatment goals between family caregivers and physicians for patients at the study site was low. These results suggest that encounters between family caregiver and physician may need improvement. Further research is needed to assess whether lack of agreement is found in other settings, persists over time, and affects achievement of goals and optimal health outcomes.     

Guided care for multimorbid older adults

PURPOSE: The purpose of this study was to test the feasibility of a new model of health care designed to improve the quality of life and the efficiency of resource use for older adults with multimorbidity. DESIGN AND METHODS: Guided Care enhances primary care by infusing the operative principles of seven chronic care innovations: disease management, self-management, case management, lifestyle modification, transitional care, caregiver education and support, and geriatric evaluation and management. To practice Guided Care, a registered nurse completes an educational program and uses a customized electronic health record in working with two to five primary care physicians to meet the health care needs of 50 to 60 older patients with multimorbidity. For each patient, the nurse performs a standardized comprehensive home assessment and then collaborates with the physician, the patient, and the caregiver to create two comprehensive, evidence-based management plans: a Care Guide for health care professionals, and an Action Plan for the patient and caregiver. Based in the primary care office, the nurse then regularly monitors the patient's chronic conditions, coaches the patient in self-management, coordinates the efforts of all involved health care professionals, smoothes the patient's transitions between sites of care, provides education and support for family caregivers, and facilitates access to community resources. RESULTS: A 1-year pilot test in a community-based primary care practice suggested that Guided Care is feasible and acceptable to physicians, patients, and caregivers. IMPLICATIONS: If successful in a controlled trial, Guided Care could improve the quality of life and efficiency of health care for older adults with multimorbidity.     

Improving health care communication for caregivers: A pilot study

With the growing older adult population, there will also be more informal caregivers assisting friends and family with their health care. With the increasing complexity of health care, improved caregiver communication skills have the potential to reduce caregiver burden and frustration and improve care recipient health. The primary goal of this project was to develop and refine the content and teaching methods of a small-group behavioral change program to improve communication between caregivers of older adults and health care professionals. The authors developed the Care Talks program for improving communication between caregivers and health care professionals. They conducted a prospective cohort feasibility study of the intervention to assess caregiver communication confidence at baseline and one month postintervention. Six participants were enrolled. Of the 15 participants who answered the question, 15 (100%) would recommend this program to a friend. There was significant improvement in a 10-question composite of communication confidence pre/post scores from 74.1 to 79.6 p = .03. This small-group behavioral change intervention significantly improved communication confidence for this sample of caregivers. Further research is needed to determine the long-term effects of this program on caregivers and care recipients.     

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

Background  Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care. Objective  To understand how the end-of-life care experiences of older patients and their caregivers can inform the development of new approaches to ACP. Design  Qualitative cross-sectional study. Participants  Caregivers of community-dwelling persons age ≥ 60 years who died with advanced cancer, chronic obstructive pulmonary disease, or heart failure during follow-up in a longitudinal study. Approach  In-depth interviews were conducted 6 months after the patient’s death with 64 caregivers. Interviews began with open-ended questions to encourage the caregiver to tell the story of the patient’s experiences at the end of life. Additional questions asked about how decisions were made, patient–caregiver, patient–clinician, and caregiver–clinician communication. Main Results  Although the experiences recounted by caregivers were highly individual, several common themes emerged from the interviews. These included the following: 1) the lack of availability of treatment options for certain patients, prompting patients and caregivers to consider broader end-of-life issues, 2) changes in preferences at the very end of an illness, 3) variability in patient and caregiver desire for and readiness to hear information about the patient’s illness, and 4) difficulties with patient–caregiver communication. Discussion  The experiences of older patients at the end of life and their caregivers support a form of ACP that includes a broader set of issues than treatment decision-making alone, recognizes the dynamic nature of preferences, and focuses on addressing barriers to patient–caregiver communication. Presented at the 2006 annual meeting of the American Geriatrics Society. Supported by grant PCC 02–192 from VA HSR&D, R01 AG19769 from the National Institute on Aging, and a Paul Beeson Physician Faculty Scholars Award. Dr. Fried is supported by K24 AG28443from the National Institute on Aging.     

Association of care recipients’ care‐need level with family caregiver participation in health check‐ups in Japan

Aim

The public mandatory long‐term care insurance system in Japan has supposedly mitigated the care burden for family caregivers of older adults, whereas family caregivers still play a considerable role in providing care. The effect of informal caregiving on the caregiver's health has been of great interest. We investigated the relationship between the amplitude of informal caregiving and caregiver participation in health check‐ups in Japan.

Methods

The present study was a cross‐sectional analysis of nationally representative data in Japan (2010 Comprehensive Survey of Living Conditions). We investigated the relationship between care recipients’ care‐need level and in‐home caregiver participation in health check‐ups during the last year of the survey for caregivers.

Results

A total of 3354 caregiver/recipient pairs were included in the study. Crude proportions of caregivers completing a health check‐up by care‐need level were 68.4% (support required 1 and 2), 63.5% (care required 1–3) and 60.3% (care required 4 and 5). Higher care‐need level was negatively associated with caregiver participation in health check‐ups (support required 1 and 2as reference, care required 1–3: odds ratio 0.82, 95% confidence interval 0.75–0.90), care required 4 and 5: odds ratio 0.76, 95% confidence interval 0.74–0.79) after adjustment for possible confounders. Inclusion of the caregiver time devoted to care per day and caregiver self‐rating of health as independent variables did not change the result.

Conclusions

These results suggest that facilitating health check‐up participation for family caregivers of care recipients with higher care‐need levels might be an effective intervention for decreasing the gap in health behavior possibly caused by informal caregiving. Geriatr Gerontol Int 2018; 18: 26–32 .     

Physician communication with family caregivers of long-term care residents at the end of life

OBJECTIVES: To assess family perceptions of communication between physicians and family caregivers of individuals who spent their last month of life in long-term care (LTC) and to identify associations between characteristics of the family caregiver, LTC resident, facility, and physician care with these perceptions. DESIGN: Retrospective study of family caregivers of persons who died in LTC. SETTING: Thirty-one nursing homes (NHs) and 94 residential care/assisted living (RC/AL) facilities. PARTICIPANTS: One family caregiver for each of 440 LTC residents who died (response rate 66.0%) was interviewed 6 weeks to 6 months after the death. MEASUREMENTS: Demographic and facility characteristics and seven items rating the perception of family caregivers regarding physician-family caregiver communication at the end of life, aggregated into a summary scale, Family Perception of Physician-Family caregiver Communication (FPPFC) (Cronbach alpha=0.96). RESULTS: Almost half of respondents disagreed that they were kept informed (39.9%), received information about what to expect (49.8%), or understood the doctor (43.1%); the mean FPPFC score (1.73 on a scale from 0 to 3) was slightly above neutral. Linear mixed models showed that family caregivers reporting better FPPFC scores were more likely to have met the physician face to face and to have understood that death was imminent. Daughters and daughters-in-law tended to report poorer communication than other relatives, as did family caregivers of persons who died in NHs than of those who died in RC/AL facilities. CONCLUSION: Efforts to improve physician communication with families of LTC residents may be promoted using face-to-face meetings between the physician and family caregivers, explanation of the patient's prognosis, and timely conveyance of information about health status changes, especially when a patient is actively dying.     

Leveraging the Experiences of Informal Caregivers to Create Future Healthcare Workforce Options

The objective of this study was gather pilot data from informal caregivers regarding the potential for a training program to assist current or past caregivers in reentering the job market, and thus offering a pathway to economic resilience. In an effort that could foster a sustainable and competent caregiving market to help meet the needs of an aging America, whether training informal caregivers might help them transition into a paid caregiving or other health service role was explored. Caregivers (N = 55) of a chronically or terminally ill family member or friend in a suburban county near Chicago were interviewed. The interview guide addressed household economic effect of illness, emotional burden, and training program interest. Fifty‐six percent of caregivers were interested in training to work outside the home, caring for people in other households, 84% indicated a desire to learn more about health care, and 68% reported a desire to explore job possibilities in health care. Eighty‐two percent were experienced in working with an individual aged 50 and older. Informal caregivers' interest in a training program to bolster their qualifications for a role in the healthcare workforce, including the option of a formal caregiver position, supports the demand for such a program. Considering the need for healthcare workers to serve the growing elderly population and the desire of informal caregivers to find gainful employment, these informal caregivers could provide the impetus to invest in informal caregiver training.     

Predictors of adherence to a skill-building intervention in dementia caregivers

BACKGROUND: Treatment adherence is a widely recognized problem in health services but understudied in caregiver intervention research. This study examines caregiver sociodemographic and psychological characteristics, patient illness severity, and treatment implementation factors as predictors of caregiver adherence to a skills training intervention to help families manage dementia care problems at home. METHODS: The sample consisted of 105 caregivers randomized to the Home Environmental Skill-Building Program at the Philadelphia site of the National Institutes of Health (NIH) Resources for Enhancing Alzheimer's Caregiver Health (REACH I). The intervention, implemented by occupational therapists, consisted of education, problem solving, communication, environmental and task simplification techniques, and home modifications. Adherence was measured by a proportion score representing the percentage of strategies used by participants compared to the total number of strategies prescribed during intervention (Strategy Use). RESULTS: Regression analysis with intraclass correlation adjustment for interventionist effects revealed that caregivers with better physical health (p <.001), greater treatment exposure (p <.001), more problem areas addressed (p =.012), and for whom more active therapeutic techniques (role play) were used (p =.004) demonstrated greater adherence. Other caregiver characteristics, patient cognitive impairment, and troublesome behaviors were not significantly related to caregiver adherence. CONCLUSIONS: Modifiable caregiver and treatment implementation factors, including active engagement of caregivers, were associated with adherence, whereas patient characteristics were not. Caregivers with poor health may be at risk for not benefiting from intervention, suggesting that efforts, including instruction in preventive care and allocating time to attend to their own health care needs, be directed towards improving their health.     

Elder abuse.

Elder abuse encompasses physical, psychological, and financial abuse and also includes the violation of an individual's rights, or social abuse. Detection of elder abuse is often obstructed by the denial or shame of the abused older adult and the denial or improper assessment by health care professionals. The ethical struggle professionals face when they suspect abuse may also impede assessment or intervention. Preliminary data on etiologic factors related to elder abuse suggest that misinformation, the caregiver's lack of understanding of the needs of older adults, social isolation, a history of dysfunctional family relationships, and the psychopathologic factors of the caregiver are salient factors for understanding elder abuse. In addition, caregiver burden related to the care of the impaired elder and other external life events is a risk factor for elder abuse. Self-neglect is the type of elder abuse most often reported and the most difficult to handle, because older adults have a right to refuse services. Home care providers often face practical and ethical dilemmas in cases of self-neglect. When making an assessment for elder abuse, it is best to use a multidisciplinary approach. In addition to physical indicators (bruises, malnutrition, fractures), attention must be paid to the social, family, and sexual history of the patient. The psychological history of the patient and caregiver is also important. Reporting laws exist in all states, and health care practitioners must become familiar with the laws in their states. Awareness of elder abuse by professionals working in home care is essential, because the failure to detect abuse can interfere with interventions and in some cases lead to death.     

Race and gender differences in perceived caregiver availability for community-dwelling middle-aged and older adults

PURPOSE: Informal family caregivers are increasingly recognized as critical for meeting the needs of individuals with chronic diseases associated with aging. This study examined race and gender differences in perceived informal caregiver availability for participants aged 45 and older in a large national epidemiological study. DESIGN AND METHODS: Cross-sectional data were collected in structured telephone interviews from 32,999 participants from the REasons for Geographic and Racial Differences in Stroke (REGARDS) study. Participants were asked if they believed that someone was available to provide care for them in the event of a serious illness or disability and, if so, to describe that person. RESULTS: More than 80% of the participants reported having an available caregiver. Variables associated with lower perceived caregiver availability from a multivariable logistic regression analysis included being female, White, or unmarried; living alone; being older than 85; and having worse self-rated health. Spouses were the most likely caregivers for all racial and gender groups except for African American women, who identified daughters as the most likely caregivers. African American women also showed the smallest differential in perceived caregiver availability between married and unmarried (82.8% vs 75.7%), whereas White men showed the largest differential (90.9% vs 60.4%). IMPLICATIONS: Most individuals believe they have an informal caregiver available to them, but certain factors increase the risk of reporting no available caregiver. Increased efforts are needed to anticipate future caregiving needs, particularly for individuals who perceive a lack of available informal caregivers and may require more formal care services.     

Family Caregiving in Serious Illness in the United States: Recommendations to Support an Invisible Workforce

Family caregivers provide the vast majority of care for individuals with serious illness living in the community but are not often viewed as full members of the healthcare team. Family caregivers are increasingly expected to acquire a sophisticated understanding of the care recipient's condition and new skills to execute complex medical or nursing tasks, often without adequate preparation and support, and with little choice in taking on the role. This review draws on peer‐reviewed literature, government reports, and other publications to summarize the challenges faced by family caregivers of older adults in the context of serious illness and to identify opportunities to better integrate them into the healthcare workforce. We discuss promising approaches such as inclusion of family caregivers in consensus‐based practice guidelines; the “no wrong door” function, directing consumers to needed resources, regardless of where initial contact is made; and caregiver‐friendly workplace policies allowing flexible arrangements. We present specific recommendations focusing on research, clinical practice, and policy changes that promote family‐centered care and improve outcomes for caregivers as well as persons with serious illness. J Am Geriatr Soc 67:S451–S456, 2019.     

Impact of a child's chronic illness on maternal sleep and daytime functioning

BACKGROUND: Chronic illness may not only directly impact the sleep of a patient but also indirectly impact the sleep of the family members who provide nighttime care. For parents of children with chronic illnesses, few studies have examined sleep disruptions that may account for elevated rates of depression and fatigue. Our objectives were to examine sleep patterns and causes of sleep disturbances in caregivers of children with and without chronic illnesses and to determine whether sleep mediates the relationship between a child's chronic illness and daytime functioning in caregivers. METHODS: A total of 118 mothers of children with ventilator dependency (VENT), cystic fibrosis (CF), or healthy children (HEALTHY) completed a series of self-reported measures during a structured telephone interview, including the Pittsburgh Sleep Quality Index, the 24-Hour Sleep Patterns Interview, the Child Health Questionnaire-General Health Scale, the Center for Epidemiological Studies-Depression Scale, and the Iowa Fatigue Scale. RESULTS: Ventilator dependency caregivers reported an earlier morning wake time and shorter total sleep time than both CF and HEALTHY caregivers. In addition, VENT caregivers reported more night wakings and poorer sleep quality than HEALTHY caregivers. Frequent sleep disruptions for VENT caregivers were due to nighttime caregiving, while almost 40% of both VENT and CF caregivers reported sleep disruptions due to stress related to their child's health. Finally, caregiver sleep quality was found to mediate the relationship between child health and caregiver depression and fatigue. CONCLUSIONS: Sleep in caregivers of children with chronic illnesses, in particular ventilator dependency, is significantly disrupted, resulting in chronic partial sleep deprivation. Owing to the level of attention and care required by these children, interventions and support for caregivers to improve their sleep quality and quantity are necessary.     

Training community consultants to help family members improve dementia care: a randomized controlled trial

PURPOSE: We investigated whether community consultants could be trained to teach family caregivers a systematic behavioral approach for reducing mood and behavior problems in persons with Alzheimer's disease. DESIGN AND METHODS: This study consisted of a randomized controlled trial; we randomly assigned 95 family caregivers and care recipients with Alzheimer's disease to STAR-caregivers (STAR-C) or control groups. Masked interviewers conducted assessments at baseline, after treatment, and after 6 months. Consultants were master's-level health care professionals who were currently practicing in community settings serving older adults. We assessed the extent to which consultants were able to learn and adhere to the treatment protocol, and the relationship between adherence and measures of caregiver mood, burden, and care recipient mood and behavior. RESULTS: Community consultants were able to learn and adhere to the behavioral treatment protocol. Caregivers receiving STAR-C training showed significant improvements in depression, burden, and reactivity to behavior problems in the care recipient. There were also significant reductions in the frequency and severity of care recipient behavior problems, and improved quality of life. Results were maintained at 6-month follow-up. IMPLICATIONS: Community-based consultants successfully implemented a behavioral intervention with family caregivers of persons with Alzheimer's disease. Consequently, STAR-C seems to be a practicable and reasonable evidenced-based approach to caregiver training in actual clinical settings.     

Long-term-care placement and survival of persons with Alzheimer's disease

Although long-term-care (LTC) placement may shorten the survival of persons with Alzheimer's disease, studies have not examined whether the timing of placement matters. A sample of 258 persons with Alzheimer's disease and their family caregivers was used in a Cox survival model that included care-recipient impairments, caregiver characteristics, and LTC placement as covariates. Placement was associated with shortened survival, but the later the placement, the smaller the impact of placement on survival time. In an elaboration on prior work, the increased risk of death associated with wishfulness-intrapsychic caregiver coping was found to occur independently of LTC placement. This is the first study to link delayed LTC with a reduced risk of death in Alzheimer's disease. Interventions to assist family caregivers in the home are indeed appropriate; nevertheless, these findings may help long-term caregivers accept eventual institutionalization for their care recipients when care at home threatens their own health.     

Risk and protective factors associated with domestic abuse among older Chinese in the People’s Republic of China

Objectives: To identify risk and protective factors associated with elder abuse among older Chinese with cognitive and physical impairment in the People’s Republic of China (PRC).Methods: 1002 dyads of care recipients and family caregivers were interviewed.Results: The mutually reported rates were 9.7%, 0.8%, 33.2%, and 39.7% for psychological abuse, physical abuse, financial exploitation, and caregiver neglect respectively. Caregiver burden, care recipient neuropsychiatric symptoms, and cognitive impairments are prominent risk factors, while protective factors associated with multiple abuse subtypes include caregiver’s use of emotion-focused and solution-focused coping, perception of familism, and premorbid relationship rewards. Distinct factors were observed for respective forms of abuse. Psychological abuse with family poverty; Caregiver neglect with caregiver’s substance use and poor physical health; Financial exploitation with caregiver’s neurotic personality, as well as care recipient’s younger age, absence of chronic illness, and co-residence between the caregiver and care recipient.Discussion: Both similar and distinct factors were observed for different forms of abuse, potentially useful for designing prevention and intervention programs.     

Effect of Caregiver Family Status on Care Recipient Symptom Severity and Caregiver Stress at Nursing Home Intake

The present research investigates differences between primary informal caregivers who were in the care recipient's immediate family (adult children or spouses) versus those primary caregivers who were outside the immediate family. Measurement occurred at the time of admission of the care recipient to an urban nursing home. We hypothesized that immediate family caregivers would report greater behavioral disturbance among care recipients and increased caregiver depression and stress. Data were collected from 115 consecutive caregiver-elder dyads at nursing home intake. Non-immediate family caregivers comprised 43% of the sample. Consistent with our hypotheses, immediate family caregivers reported significantly greater caregiver depression and caregiver stress. Immediate family care recipients demonstrated greater behavioral disturbance. Implications for policy and caregiver interventions are discussed.