Care partner support.

Palliative care focuses on improving the quality of life of people living with serious illness and their family carers. However despite policy, clinical, and research evidence underpinning the importance of a family approach to care, as well as justification for early palliative care integration, systemic inadequacies have impeded the quality of family support. This chapter provides an overview of common concepts in caregiving, a framework through which carer well-being can be understood, and an overview of disease specific considerations for care partners. There are several main needs that are relevant to care partners across disease settings include (1) information and guidance to prepare them for the role; (2) how to alleviate discomfort for the person with illness; (3) enhancing skills for the physical tasks of the role; (4) strategies for managing the psychological, and financial implications of the care partner role; and (5) assistance in advance care planning and on preparing for the care recipient's death. Care partner coping is a result of complex interactions between stressors and mediators as they navigate chronic illness, but palliative providers with an understanding of these factors are well-positioned to address carer risk factors and provide appropriate support.

Predictors of Spiritual Well-Being in Family Caregivers for Individuals with Parkinson's Disease.

Background: Parkinson's disease (PD) is a common neurodegenerative illness that causes disability through both motor and nonmotor symptoms. Family caregivers provide substantial care to persons living with PD, often at great personal cost. While spiritual well-being and spirituality have been suggested to promote resiliency in caregivers of persons living with cancer and dementia, this issue has not been explored in PD. Objective: The aim of this study was to identify predictors of spiritual well-being in PD patients' caregivers. Design: A cross-sectional analysis was performed. Our primary outcome measure, the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp), was measured in caregivers alongside measures of patient quality of life, symptom burden, global function, grief, and spiritual well-being and caregiver mood, burden, and perceptions of patient quality of life. Univariate correlation and multiple regression were used to determine associations between predictor variables and caregiver FACIT-Sp. Setting/Subjects: PD patient/caregiver dyads were recruited through three academic medical centers in the United States and Canada and regional community support groups. Results: We recruited 183 dyads. Patient faith, symptom burden, health-related quality of life, depression, motor function, and grief were significant predictors of caregiver spiritual well-being. Predictive caregiver factors included caregiver depression and anxiety. These factors remained significant in combined models, suggesting that both patient and caregiver factors make independent contributions to caregiver spiritual well-being. Conclusions: The present study suggests that both patient and caregiver factors are associated with spiritual well-being in PD. Further study is needed to understand the causal relationship of these factors and whether interventions to support caregiver spiritual well-being improve outcomes for caregivers or patients. Clinicaltrials.gov registration NCT02533921.

The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms.

INTRODUCTION: Approximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population. METHODS: Secondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale. RESULTS: Of 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms. CONCLUSION: Findings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.

Effects of a Health Education and Research Participation Enhancement Program on Participation and Autonomy in Diverse Older Adults.

Social engagement and autonomy are vital for life satisfaction among older adults. We measured multiple domains of social participation and autonomy in 120 adults over age 55 years that were part of an educational program at pretest, posttest, and follow-up. Quantitative and qualitative data were analyzed for differences between Black and White participants. White participants reported worse engagement in the family role domain and a lower Total Participation Score at posttest than pretest; however, scores returned to baseline levels by follow-up. Black participants reported better levels of participation in the social relationship domain at follow-up than at pretest. We found no evidence of qualitative differences between racial groups. Barriers to social participation and autonomy included challenges related to health, ageism, transportation, and mobility. Adequate housing, social support, socialization, and perception of individual utility contributed to feeling independent. Educational programs for older adults may provide an opportunity for increased social participation.

Correlates of spiritual wellbeing in persons living with Parkinson disease.

BACKGROUND: Spirituality influences chronic disease coping skills through both positive and negative means. Although previous research notes similar associations between faith and Parkinson disease (PD) management, little is known about spirituality in the context of PD management in a palliative setting. The purpose of this paper is to gain a better understanding of the association between spirituality and PD management to best maximize the effect of spiritual counseling in treatment of the disease. METHODS: This is a cross-sectional analysis of the baseline data of a larger randomized, controlled trial. Individuals with PD and their caregivers were recruited from three study sites with currently-operating outpatient movement disorders and palliative care programs. Correlations were conducted between FACIT total scores and subscales with hypothesized associative factors, such as quality of life (QOL), mood and cognition, advance care planning, and physical symptoms. RESULTS: Two-hundred and ten PD patients and 175 caregivers participated in the study. FACIT scores correlated positively with older age, existence of a caregiver, and involvement in support groups. Higher spirituality was associated with less impairment in QOL, lower anxiety, lower depression, fewer non-motor symptoms, reduced palliative symptoms, and less prolonged grief. There was no significant association between patient FACIT scores and the MDS UPDRS or MoCA scores. CONCLUSIONS: These results highlight the influences of spirituality in PD management and further support the holistic, interdisciplinary care provided to PD patients through palliative care teams offering chaplaincy support to patients.

Patient and caregiver characteristics associated with caregiver burden in Parkinson's disease: a palliative care approach.

BACKGROUND: Parkinson's disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach. METHODS: We conducted a cross-sectional analysis of baseline data from PD patients and caregivers in a randomized trial of outpatient palliative care at three study sites: University of Colorado, University of Alberta, and University of California San Francisco. The primary outcome measure of caregiver burden, the Zarit Burden Interview (ZBI), was compared against the following patient and caregiver variables: site of care, age, disease/caretaking duration, presence of atypical parkinsonism, race, income, education level, deep brain stimulation status, the Unified Parkinson's Disease Rating Scale (UPDRS) and Edmonton Symptom Assessment System Revised: Parkinson Disease (ESAS) for symptom severity and burden, the Montreal Cognitive Assessment (MoCA) for cognitive function, Quality of Life in Alzheimer's Disease (QOL-AD) scale for patient and caregiver perspectives on patient general quality of life, Parkinson's Disease Questionnaire 39 (PDQ-39) scale for health-related quality of life, Hospital Anxiety and Depression Scale (HADS) for patient and caregiver mood, Prolonged Grief Questionnaire, Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being (FACIT-SP) of patient and caregiver, and Palliative Performance Scale for functional status. A stepwise multivariate linear regression model was used to determine associations with ZBI. RESULTS: A total of 175 patients (70.9% male; average age 70.7±8.1 years; average disease duration 117.2±82.6 months), and 175 caregivers (73.1% female; average age 66.1±11.1 years) were included. Patient spiritual well-being (FACIT-SP Faith subscale, r2=0.024, P=0.0380), patient health-related quality of life (PDQ-39, r2=0.161, P<0.0001), caregiver depression (HADS Depression, r2=0.062, P=0.0014), caregiver anxiety (HADS Anxiety, r2=0.077, P=0.0002), and caregiver perspective on patient quality of life (QOL-AD Caregiver Perspective, r2=0.088, P<0.0001) were significant contributors to ZBI scores. CONCLUSIONS: Patient and caregiver factors contribute to caregiver burden in persons living with PD. These results suggest targets for future interventions to improve caregiver support.

A Mixed-Methods Approach to Understanding the Palliative Needs of Parkinson's Patients.

Parkinson's disease (PD) is the second-most common age-related neurodegenerative disorder. Despite recommendations for a palliative approach, little is known about what palliative needs are unmet by standard care. This study aims to (a) identify palliative needs of PD patients, (b) determine the relationship between palliative needs and health-related quality of life (HRQoL), and (c) probe into factors affecting HRQoL. PD patients and neurologists were recruited for a survey on palliative need; a subset of patients was interviewed. Significant differences between physicians and patients were found in Physical, Psychological, Social, Financial, and Spiritual domains. Physical and Psychological needs predicted HRQoL. Primary themes across interviews included (a) lack of healthcare education and (b) need for care coordination. Secondary themes included (a) the importance of support groups, (b) the role of spirituality/religion, and (c) the narrow perceived role of the neurologist. Findings highlight the importance of coordinated individualized care.

Measuring quality of life in palliative care for Parkinson's disease: A clinimetric comparison.

INTRODUCTION: Quality of life (QOL) assessments allow for more complete evaluation of patients' lived experiences in relation to chronic conditions, such as Parkinson's disease (PD). In palliative care, such instruments are vital to ensure QOL issues are catalogued and addressed for patients. However, little is known regarding the psychometric properties of quality of life scales for use in palliative care for PD, specifically. METHODS: 210 participants with parkinsonian disorders, who participated in a larger palliative intervention clinical trial, completed four quality of life scales (PDQ-39, PROMIS-29, QOL-AD, and McGill QOL) at baseline and post-intervention. Psychometric properties, including internal consistency and concurrent validity, were examined. Factor analyses were performed to evaluate relationships between scale items. Minimal clinically important differences (MCID) and responsiveness were calculated for each scale. RESULTS: All scales demonstrated good internal consistency and concurrent validity. Factor analyses revealed few deviations from the defined subdomains of the scales. Mean absolute MCID values were estimated at 12.7, 10.9, 3.9, and 18.9 for PDQ-39, PROMIS-29, QOL-AD, and McGill QOL, respectively. The PDQ-39 and PROMIS-29 demonstrated higher responsiveness to palliative intervention, while the QOL-AD was more responsive in the control group. CONCLUSIONS: The PDQ-39, PROMIS-29, QOL-AD, and McGill QOL are all valid for use in PD palliative care, though subdomains of the scales in this population may differ slightly from those initially defined. We recommend the use of PDQ-39 and PROMIS-29 as outcome measures in clinical trials for palliative care in PD, though the QOL-AD may be superior for tracking disease progression.

Progressive Support for Activities of Daily Living for Persons Living With Dementia.

Background and Objectives: Dementia is accompanied by increasing need for support in activities of daily living (ADLs). This brief report/literature review summarizes the practices to care for early stage, middle stage, and late stage ADL needs (dressing, toileting, and eating/nutrition), and examines commonalities across ADL needs and the extent to which practices are reflected in guidelines and/or evidence. Research Design and Methods: A review of the grey and peer-reviewed literature, using some but not all procedures of a systematic review. Key terms were identified for ADLs overall and for each of the 3 ADLs, and a search was conducted using these words in combination with (a) dementia, Alzheimer's disease, and similar terms, and (b) practices, interventions, guidelines, recommendations, and similar terms. Searches were conducted using databases of peer-reviewed literature as well as the Grey Literature Reports and Google search engine. Sources were included if they provided evidence or recommendations on interventions to address ADL functioning for dressing, toileting, and feeding for persons living with dementia. Results: As cognitive and functional impairment increases, the number of care practices and themes that embody care practices increases. The majority of practices are evidence-based, and most evidence is incorporated into guidelines. Discussion and Implications: Virtually all practices reflect person-centered care principles. Five recommendations summarize the evidence and recommendations related to providing support to persons living with dementia in relation to dressing, toileting, and eating/nutrition.

Using social exchange theory to understand non-terminal palliative care referral practices for Parkinson's disease patients.

BACKGROUND: A palliative approach is recommended in the care of Parkinson's disease patients; however, many patients only receive this care in the form of hospice at the end of life. Physician attitudes about palliative care have been shown to influence referrals for patients with chronic disease, and negative physician perceptions may affect early palliative referrals for Parkinson's disease patients. AIM: To use Social Exchange Theory to examine the association between neurologist-perceived costs and benefits of palliative care referral for Parkinson's disease patients and their reported referral practices. DESIGN: A cross-sectional survey study of neurologists. SETTING/PARTICIPANTS: A total of 62 neurologists recruited from the National Parkinson Foundation, the Medical Association of Georgia, and the American Academy of Neurology's clinician database. RESULTS: Participants reported significantly stronger endorsement of the rewards ( M = 3.34, SD = 0.37) of palliative care referrals than the costs ( M = 2.13, SD = 0.30; t(61) = -16.10, p < 0.0001). A Poisson regression found that perceived costs, perceived rewards, physician type, and the number of complementary clinicians in practice were significant predictors of palliative care referral. CONCLUSION: Physicians may be more likely to refer patients to non-terminal palliative care if (1) they work in interdisciplinary settings and/or (2) previous personal or patient experience with palliative care was positive. They may be less likely to refer if (1) they fear a loss of autonomy in patient care, (2) they are unaware of available programs, and/or (3) they believe they address palliative needs. Initiatives to educate neurologists on the benefits and availability of non-terminal palliative services could improve patient access to this care.

A Comprehensive Approach to Care in Parkinson's Disease Adds Quality to the Current Gold Standard.

BACKGROUND: Providing high-quality care for patients with Parkinson's disease (PD) involves addressing both motor and nonmotor features. We describe the implementation and evaluation of a 2-day, interdisciplinary Comprehensive Care Clinic (CCC) for patients with PD. METHODS: Patients who attended the CCC between January 2010 and July 2013 were matched by sex and age with patients who were evaluated in specialist care during the same time frame. Provider documentation of the American Academy of Neurology (AAN) quality measures for PD and Unified Parkinson's Disease Rating Scale (UPDRS) motor scores were compared between specialist and CCC visits at baseline and at 12 months. RESULTS: Ninety-five patients participated in the CCC (60% men; 75% white; mean age, 68 years; age range, 38-97 years). Of these, 29 patients were matched to specialist care patients based on the availability of 12-month follow-up data. Both groups were similar with respect to race, marital status, years with PD, and baseline UPDRS motor scores. On average, patients who received CCC care met 10 of 10 AAN quality measures, whereas those who received specialist care met only 5 of 10 quality measures (P < 0.001) over 12 months. At 12-months, there were no significant differences in UPDRS motor scores between the groups (P = 0.5). CONCLUSIONS: According to the AAN quality measures, the CCC provided higher quality care than the gold standard of specialty care. A randomized controlled trial of the CCC model is warranted to determine its impact on patient-centered outcomes and to assess whether the standard model of care should be altered.

The Role of Age in Moderating the Association Between Disability and Light-Intensity Physical Activity.

PURPOSE: There's a lack of evidence on the association between light-intensity physical activity and disability. This study examines the relationships in activity by self-reported physical function in five domains (i.e., activities of daily living [ADL], instrumental ADL, leisure activities, lower extremity, and general activities), and whether this association varies by age. DESIGN: Cross-sectional. SETTING: Data from National Health and Nutrition Examination Survey 2003-2004 and 2005-2006 waves. SUBJECTS: Participants included 5700 men and women ages 20 to 85 years. MEASURES: Difficulty with various activities was measured with the Physical Functioning Questionnaire, accelerometer-measured physical activity, demographics, and self-rated health. ANALYSIS: Ordinary least squares regression models were run to examine the relationship between physical function in each domain, light-intensity activity, and the moderating effect of age. Analyses controlled for body mass index, moderate-to-vigorous-intensity activity, self-reported health, accelerometer wear time, and gender. RESULTS: Little variation was seen in light-intensity physical activity among younger adults regardless of disability status. Older adults reporting difficulty with activities engaged in significantly less light-intensity physical activity compared to those with no disability (271.8 vs. 316.5 minutes). Age significantly moderated the association between light-intensity physical activity and leisure activities (p = .048), and lower extremity mobility (p = .039). Age did not moderate other domains of disability. CONCLUSION: Younger age may be protective regarding the influence of disability on light-intensity activity. In addition, disability may be more debilitating for some older individuals. Interventions to increase light-intensity activity should aim to address disability at all ages, with increased attention for older adults.

Depressive symptomology management and falls among middle aged and older adults.

OBJECTIVES: This study aims to examine the relationship between middle-aged and older adults' depressive symptomology and anti-depressant use and the frequency of falls within the previous 12 months, controlling for sociodemographic variables, health indicators, and health behaviors. METHOD: From the 2010 National Social Life, Health, and Aging Project, 2338 cases were examined. Falls were categorized into a binary variable, comparing zero falls with one or more falls. An unadjusted model was run to examine the relationship between independent and dependent variables. Potential covariates were added into the model, and backward elimination was used among independent variables with a univariate P < 0.05 to identify the covariates with the strongest association with falls. This final adjusted binary logistic regression model was then used to examine the relationship between falls and the independent variables. RESULTS: In the adjusted model, anti-depressant use was positively associated with falls (P = 0.001), as was being female (P < 0.001), having diabetes (P = 0.018), and having increased limitations in daily activities (P < 0.001). The relationship between depressive symptomology and anti-depressant prescription was also significantly associated with falls (P = 0.006). CONCLUSION: While findings confirm that a relationship between depressive symptomology and anti-depressant use are associated with falls among middle-aged and older adults, additional studies are needed that simultaneously examine the influence of these two risk factors.

Health indicators associated with falls among middle-aged and older women enrolled in an evidence-based program.

BACKGROUND: Evidence-based fall prevention programs primarily attract older women, who are increasingly burdened by fall-related injuries. However, little is known about the relationship between older female participants' baseline health status and self-reported falls over the course of fall prevention interventions. Using data from A Matter of Balance/Volunteer Lay Leader Model (AMOB/VLL) workshops, this study examines female participants' sociodemographics and health indicators associated with self-reported falls at baseline and postintervention. METHODS: Data were analyzed from 837 older women (M = 76.2 years) collected during the statewide AMOB/VLL dissemination in Texas. Longitudinal Poisson regression models, using the generalized estimating equation method, were used to investigate the associations of personal characteristics and health indicators with and reductions in the number of self-reported falls from baseline to postintervention. FINDINGS: Approximately 21% of participants reported falling at baseline, and the number of reported falls significantly decreased from baseline to postintervention (ß = -0.443). At baseline, more unhealthy physical days (ß = 0.022), more unhealthy mental days (ß = 0.018), and lower Falls Efficacy Scale scores (ß = -0.052) were significantly associated with more falls reported at baseline. More falls at baseline was also associated with worse program attendance (ß = -0.069). Greater improvements in Falls Efficacy Scale Scores (ß = -0.069) and decreases in unhealthy physical health days (ß = 0.026) over the course of the intervention were significantly associated with greater reductions in reported falls at postintervention, respectively. CONCLUSIONS: Findings have implications for identifying at-risk older women upon enrollment, expanding the reach of AMOB/VLL, and leveraging AMOB/VLL to refer participants to other evidence-based exercise, disease management, and mental health interventions.

Complexities of fall prevention in clinical settings: a commentary.

Falls and associated injury and mortality are of increasing concern among aging Americans. Effective fall risk management is a complicated process requiring involvement by both health care professionals and older adults for three related actions: (a) early screening to detect risk factors; (b) prescription of tailored interventions; and (c) implementation of, adherence to, and compliance with the intervention by the older adult. Early detection of fall risk can prevent future falls; however, uptake of evidence-based screening and assessment protocols in the clinical setting has been limited. A variety of practice guidelines and financial incentives are available to health care professionals to facilitate adoption. Yet, there remains a gap between recommended practices and current clinical activities. This commentary addresses the complexities of fall prevention practices and offers solutions that can facilitate adoption by clinical practices. Toward this end, this commentary will present two models (i.e., a clinical approach and a financial incentive approach) to summarize current clinical recommendations and practice guidelines for fall risk management in clinical settings. The various drivers to encourage adoption of evidence-based fall risk management strategies will be described. In this context, we will discuss how understanding the different system wide practice improvement initiatives and factors that drive action in physician groups, can facilitate adoption and implementation of fall risk management behaviors by clinicians. Additional efforts are needed to explore and assess similar initiatives to adopt and implement fall risk management practices at different entry points into the system (e.g., community settings, patients, caregivers).

Adaptation of the health literacy universal precautions toolkit for rheumatology and cardiology - applications for pharmacy professionals to improve self-management and outcomes in patients with chronic disease.

Over a decade of research in health literacy has provided evidence of strong links between literacy skills of patients and health outcomes. At the same time, numerous studies have yielded insight into efficacious action that health providers can take to mitigate the negative effects of limited literacy. This small study focuses on the adaptation, review and use of two new health literacy toolkits for health professionals who work with patients with two of the most prevalent chronic conditions, arthritis and cardiovascular disease. Pharmacists have a key role in communicating with patients and caregivers about various aspects of disease self-management, which frequently includes appropriate use of medications. Participating pharmacists and staff offered suggestions that helped shape revisions and reported positive experiences with brown bag events, suggestions for approaches with patients managing chronic diseases, and with concrete examples related to several medicines [such as Warfarin(©)] as well as to common problems [such as inability to afford needed medicine]. Although not yet tested in community pharmacy sites, these publically available toolkits can inform professionals and staff and offer insights for communication improvement.

Associations of educational attainment, occupation, and community poverty with hip osteoarthritis.

OBJECTIVE: To examine cross-sectional baseline data from the Johnston County Osteoarthritis Project for the association between individual and community socioeconomic status (SES) measures with hip osteoarthritis (OA) outcomes. METHODS: We analyzed data on 3,087 individuals (68% white and 32% African American). Educational attainment and occupation were used as individual measures of SES. Census block group household poverty rate was used as a measure of community SES. Hip OA outcomes included radiographic OA and symptomatic OA in one or both hip joints. Multivariable logistic regression models were used to estimate odds ratios (ORs) and 95% confidence intervals (95% CIs) for the association of each hip OA outcome with each SES variable separately, and then with all SES measures simultaneously. Associations between hip OA outcomes and SES variables were evaluated for effect modification by race and sex. RESULTS: Living in a community of high household poverty rate showed independent associations with hip radiographic OA in one or both hips (OR 1.50, 95% CI 1.18-1.92) and bilateral (both hips) radiographic OA (OR 1.87, 95% CI 1.32-2.66). Similar independent associations were found between low educational attainment among those with symptomatic OA in one or both hips (OR 1.44, 95% CI 1.09-1.91) or bilateral symptomatic OA (OR 1.91, 95% CI 1.08-3.39), after adjusting for all SES measures simultaneously. No significant associations were observed between occupation and hip OA outcomes, nor did race or sex modify the associations. CONCLUSION: Our data provide evidence that hip OA outcomes are associated with both education and community SES measures, associations that remained after adjustment for covariates and all SES measures.

The integrative care of Parkinson's disease: a systematic review.

Parkinson's disease (PD) is the second most common neurodegenerative disorder after Alzheimer's disease, and it is characterized by a complex variety of both motor and neuropsychiatric issues. Effective treatment of PD symptoms requires a combination of pharmacotherapy and allied health therapies; however, treatment is generally monodisciplinary, with the neurologist referring out to varied therapists as needed. In order to more effectively manage PD as it progresses over time, clinics are beginning to implement and advocate the use of more integrative models of care for PD. In order to understand the effectiveness of these models, a comprehensive literature review was conducted through electronic searches of PubMed, Academic Search Premier, PsycINFO, Health Source: Nursing/Academic Edition, AgeLine, AMED (Alternative Medicine), Health and Psychosocial Instruments, Health Source - Consumer Edition, and Social Work Abstracts databases. The review identified only two published studies, both of which only evaluated the effectiveness of multidisciplinary care in outpatient settings. The results of the studies indicated that multidisciplinary treatment led to marked improvement in patient outcomes; however, these results are limited as they measured short term outcomes only. The limited available evidence on the efficacy of integrative healthcare delivery models in PD should serve as a call-to-action for clinicians to work to improve the care, and subsequently the quality of life, of PD patients through streamlining PD-specialized care with multiple complementary clinicians and incorporating patient preferences and goals into treatment.