Dementia and co-occurring chronic conditions: a systematic literature review to identify what is known and where are the gaps in the evidence?

OBJECTIVE: The challenges posed by people living with multiple chronic conditions are unique for people with dementia and other significant cognitive impairment. There have been recent calls to action to review the existing literature on co-occurring chronic conditions and dementia in order to better understand the effect of cognitive impairment on disease management, mobility, and mortality. METHODS: This systematic literature review searched PubMed databases through 2011 (updated in 2016) using key constructs of older adults, moderate-to-severe cognitive impairment (both diagnosed and undiagnosed dementia), and chronic conditions. Reviewers assessed papers for eligibility and extracted key data from each included manuscript. An independent expert panel rated the strength and quality of evidence and prioritized gaps for future study. RESULTS: Four thousand thirty-three articles were identified, of which 147 met criteria for review. We found that moderate-to-severe cognitive impairment increased risks of mortality, was associated with prolonged institutional stays, and decreased function in persons with multiple chronic conditions. There was no relationship between significant cognitive impairment and use of cardiovascular or hypertensive medications for persons with these comorbidities. Prioritized areas for future research include hospitalizations, disease-specific outcomes, diabetes, chronic pain, cardiovascular disease, depression, falls, stroke, and multiple chronic conditions. CONCLUSIONS: This review summarizes that living with significant cognitive impairment or dementia negatively impacts mortality, institutionalization, and functional outcomes for people living with multiple chronic conditions. Our findings suggest that chronic-disease management interventions will need to address co-occurring cognitive impairment. Copyright © 2017 John Wiley & Sons, Ltd.

Cognitive decline and the PPAR-γ Pro12Ala genotype: variation by sex and ethnicity.

Objective: We investigated the association between the peroxisome proliferator-activated receptor (PPAR)-gamma Pro12Ala polymorphism and cognitive decline in older adults. Methods: Participants from a population-based cohort of older Hispanic and non-Hispanic white adults (n = 492) were administered the Mini Mental State Examination (MMSE), a multi-domain cognitive screening tool, and the Behavioral Dyscontrol Scale (BDS), a measure of executive cognitive function, at baseline and at follow-up, an average of 22 months later. Multiple linear regression was used to investigate the association between the two cognitive test scores and the Pro12Ala polymorphism. Results: At baseline, presence of the Ala12 allele was not significantly associated with MMSE score (P = 0.62) nor with BDS score (P = 0.85). Heterogeneity was present for cognitive decline as measured by the MMSE among ethnic, sex and Ala12 allele status (P = 0.04 for three-way interaction term). Stratification by the cross-classification of sex and ethnicity revealed significantly greater declines in MMSE score among male Hispanic carriers of the Ala12 allele compared to male Hispanic non-carriers (decline = 4.0 versus 1.6 points; P = 0.02). A significant difference in decline between Ala12 carriers and non-carriers was not present among the other sex/ethnic groups. Conclusions: Carriers of the PPAR-γ Ala12 allele showed greater cognitive decline compared to non-carriers as detected by the MMSE but the risk varied across sex and ethnic groups. Male Ala12 carriers of Hispanic origin may be a high-risk group for cognitive decline.

Factors Associated with Tooth Loss in Older Adults in Rural Colorado.

The purpose of this paper is to examine factors that are associated with tooth loss in older adults living in the San Luis Valley (SLV), Colorado, which is a rural and large geographical area (roughly the size of Connecticut) that has a large population age 60 years or older. Data used in this manuscript were collected as a part of the SLV Community Health Survey. The analyzed sample included 308 adults over the age of 65 years who completed the survey. Basic descriptive statistics and a series of step-wise binary logistic regression analyses were conducted; the dependent variable was the number of permanent teeth removed because of tooth decay or gum disease. Fifty-two percent of the participants were male, Hispanic participants made up 40 % of the sample and 76 % of the participants had at least a high school education. Tooth loss was significantly associated with older age (OR = 1.09; p = 0.02), lower income (OR = 0.01; p = 0.00), less than high school education (OR = 0.32; p = 0.01), being Hispanic (OR = 2.15; p = 0.05), self-reported fair-poor health status (OR 2.94; p = 0.02), consumption of one or more than one sweet beverage per day (OR = 4.52; p = 0.00), no dental insurance (OR = 4.70; p = 0.01) and length of time since last dental visit (OR = 0.21; p = 0.01). The findings of the present study suggest possible causes for tooth loss in rural adults and underscore the need for in-depth research to study the overall oral health of rural older adults living in SLV.

A Community-Based Oral Health Intervention in Navajo Nation Head Start: Participation Factors and Contextual Challenges.

Successful interventions require consistent participation by intended recipients. We utilized mixed methods to describe participation of 518 parent-child dyads enrolled in a randomized cluster trial of a 2-year oral health intervention for Head Start (HS) families across Navajo Nation delivered by native Community Oral Health Specialists (COHS). We quantitatively assessed factors that contributed to participation and qualitatively examined barriers and strategies. The intervention offered fluoride varnish (FV) and oral health promotion (OHP) activities for two cohorts (enrolled in 2011, N = 286, or 2012, N = 232) of children in the HS classrooms and OHP for parents outside the classroom. Child participation was good: FV: 79.7 (Cohort 1) and 85.3 % (Cohort 2) received at least 3 of 4 applications; OHP: 74.5 (Cohort 1) and 78.4 % (Cohort 2) attended at least 3 of 5 events. Parent participation was low: 10.5 (Cohort 1) and 29.8 % (Cohort 2) attended at least three of four events. Analysis of survey data found significant effects on parent participation from fewer people in the household, Cohort 2 membership, greater external-locus of control, and a greater perception that barriers existed to following recommended oral health behaviors. Qualitative analysis of reports from native field staff, COHS, community members, and the research team identified barriers (e.g., geographic expanse, constraints of a research trial) and suggested strategies to improve parent participation (e.g., improve communication between COHS and parents/community). Many challenges to participation exist when conducting interventions in rural areas with underserved populations. Working with community partners to inform the development and delivery of interventions is critical.

Longitudinal Association of Dementia and Depression.

OBJECTIVES: Depression is an important precursor to dementia, but less is known about the role dementia plays in altering the course of depression. We examined whether depression prevalence, incidence, and severity are higher in those with dementia versus those with mild cognitive impairment (MCI), or normal cognition. DESIGN: Prospective cohort study using the longitudinal Uniform Data Set of the National Alzheimer's Coordinating Center (2005-2013). SETTING: 34 Alzheimer Disease research centers. PARTICIPANTS: 27,776 subjects with dementia, MCI, or normal cognition. MEASUREMENTS: Depression status was determined by a clinical diagnosis of depression within the prior 2 years and by a Geriatric Depression Scale-Short Form score >5. RESULTS: Rates of depression were significantly higher in subjects with MCI and dementia compared with those with normal cognition at index visit. Controlling for demographics and common chronic conditions, logistic regression analysis revealed elevated depression in those with MCI (OR: 2.40 [95% CI: 2.25, 2.56]) or dementia (OR: 2.64 [95% CI: 2.43, 2.86]) relative to those with normal cognition. In the subjects without depression at the index visit (N = 18,842), those with MCI and dementia had higher probabilities of depression diagnosis 2 years post index visit than those with normal cognition: MCI = 21.7%, dementia = 24.7%, normal cognition = 10.5%. CONCLUSION: MCI and dementia were associated with significantly higher rates of depression in concurrent as well as prospective analyses. These findings suggest that efforts to effectively engage and treat older adults with dementia will need also to address co-occurring depression.

Public perceptions about risk and protective factors for cognitive health and impairment: a review of the literature.

BACKGROUND: Preventing and/or delaying cognitive impairment is a public health priority. To increase awareness of and participation in behaviors that may help maintain cognitive function or reduce risk of impairment, we need to understand public perceptions about risk and protective factors. METHODS: We conducted a scoping review of studies examining the public's perceptions about risk and protective factors related to cognitive health and impairment published since the 2007 National Public Health Road Map to Maintaining Cognitive Health. RESULTS: A search of five databases yielded 1,115 documents published between June 2007 and December 2013. Initial review of abstracts identified 90 potentially eligible studies. After full-article review, 30 met inclusion criteria; four additional articles identified in reference lists also met inclusion criteria. Of the 34, 16 studies addressed Alzheimer's disease (AD) specifically, 15 dementia broadly, 5 mild to moderate cognitive impairment, and 8 normal functioning, with some content overlap. Across studies, respondents reported genetics (n = 14 studies), older age (n = 8), stress (n = 7), brain/head injury (n = 6), and mental illness/brain disease (n = 6) as perceived risk factors for AD and dementia. Protective factors most commonly identified for maintaining cognitive health were intellectual/mental stimulation (n = 13), physical activity (n = 12), healthy diet (n = 10), and social/leisure activities (n = 10). CONCLUSIONS: Studies identified genetics and older age as key perceived risk factors more so than behaviors such as smoking. Individuals perceived that numerous lifestyle factors (e.g. intellectual stimulation, physical activity) could protect against cognitive impairment, AD, and/or dementia. Results can inform national and international education efforts about AD and other dementias.

Existing data sets to support studies of dementia or significant cognitive impairment and comorbid chronic conditions.

BACKGROUND: Dementia or other significant cognitive impairment (SCI) are often comorbid with other chronic diseases. To promote collaborative research on the intersection of these conditions, we compiled a systematic inventory of major data resources. METHODS: Large data sets measuring dementia and/or cognition and chronic conditions in adults were included in the inventory. Key features of the resources were abstracted including region, participant sociodemographic characteristics, study design, sample size, accessibility, and available measures of dementia and/or cognition and comorbidities. RESULTS: 117 study data sets were identified; 53% included clinical diagnoses of dementia along with valid and reliable measures of cognition. Most (79%) used longitudinal cohort designs and 41% had sample sizes greater than 5000. Approximately 47% were European-based, 40% were US-based, and 11% were based in other countries. CONCLUSIONS: Many high-quality data sets exist to support collaborative studies of the effects of dementia or SCI on chronic conditions and to inform the development of evidence-based disease management programs.

Cognitive decline and cardiometabolic risk among Hispanic and non-Hispanic white adults in the San Luis Valley Health and Aging Study.

Cardiometabolic risk factors, including hypertension, dyslipidemia, central obesity, insulin resistance and diabetes are linked to cognitive impairment. The Hispanic population appears to be differentially affected by both cardiometabolic risk factors and cognitive impairment. We sought to determine whether ethnic differences in cognitive impairment in long-resident southwestern US elders was explained by the presence of cardiometabolic risk factors, and to explore patterns of cognitive decline over time. We performed a secondary analysis of data collected on 378 Hispanic and 409 non-Hispanic white adult participants in a longitudinal study of community-dwelling elderly in southern Colorado. Measures of cardiometabolic risk included waist circumference, blood pressure, diagnosis of diabetes, and random blood glucose. Cognitive measures included the Mini-Mental State Exam (MMSE) and the behavioral dyscontrol scale (a measure of executive cognitive function), at baseline and after an average of 22 months. Subjects were also administered the Center for Epidemiologic Studies Depression Scale, and the Coronary Artery Risk Development in Young Adults 1-Year Activity Recall. At baseline, Hispanic elders had a greater number of cardiometabolic risk factors and lower MMSE and behavioral dyscontrol scale scores than non-Hispanic whites. Hispanic ethnicity was associated with a greater likelihood of decline in general cognitive function, but not executive cognitive function, after adjusting for age and education. This differential decline was not explained by either individual or total number of baseline cardiometabolic risk factors, depression, or physical activity. A borderline increased risk of decline in general cognitive function was seen in sedentary individuals (P = 0.05).

Evaluation of the effectiveness of a problem-solving intervention addressing barriers to cardiovascular disease prevention behaviors in 3 underserved populations: Colorado, North Carolina, West Virginia, 2009.

INTRODUCTION: In low-income and underserved populations, financial hardship and multiple competing roles and responsibilities lead to difficulties in lifestyle change for cardiovascular disease (CVD) prevention. To improve CVD prevention behaviors, we adapted, pilot-tested, and evaluated a problem-solving intervention designed to address barriers to lifestyle change. METHODS: The sample consisted of 81 participants from 3 underserved populations, including 28 Hispanic or non-Hispanic white women in a western community (site 1), 31 African-American women in a semirural southern community (site 2), and 22 adults in an Appalachian community (site 3). Incorporating focus group findings, we assessed a standardized intervention involving 6-to-8 week group sessions devoted to problem-solving in the fall of 2009. RESULTS: Most sessions were attended by 76.5% of participants, demonstrating participant adoption and engagement. The intervention resulted in significant improvement in problem-solving skills (P < .001) and perceived stress (P < .05). Diet, physical activity, and weight remained stable, although 72% of individuals reported maintenance or increase in daily fruit and vegetable intake, and 67% reported maintenance or increase in daily physical activity. CONCLUSION: Study results suggest the intervention was acceptable to rural, underserved populations and effective in training them in problem-solving skills and stress management for CVD risk reduction.

Beliefs and communication practices regarding cognitive functioning among consumers and primary care providers in the United States, 2009.

INTRODUCTION: Limited research has examined primary care providers' communication with patients about maintaining cognitive functioning. Our study's objective was to compare the perceptions of consumers and primary care providers related to beliefs and communication practices about lifestyle behaviors beneficial for overall health and for maintaining cognitive functioning. METHODS: In 2009, we submitted 10 questions to Porter Novelli's HealthStyles survey and 6 questions to their DocStyles survey. We compared consumers' (n = 4,728) and providers' (n = 1,250) beliefs, practices, and information sources related to maintaining health and cognitive functioning. We made comparisons using nonparametric statistics. RESULTS: Approximately 76% of consumers considered their health to be good or very good; 73.4% were concerned or very concerned about the possibility that their memory may worsen with age. Women were significantly more concerned than men, and white consumers were more concerned than black and Hispanic consumers. Consumers reported they believed that intellectual stimulation (86.6%), physical activity (82.6%), and healthful diet (82.5%) prevented or delayed cognitive impairment. Providers reported advising patients to reduce cognitive impairment risk through physical activity (85.9%), intellectual stimulation (80.3%), and social involvement (67.4%). Few consumers (7.8%) reported receiving this information from providers but reported learning about strategies to maintain memory, primarily from television (50.1%), magazines (44.1%), and newspapers (33.7%). CONCLUSION: Providers reported advising patients about how to reduce risks of cognitive impairment. Consumers reported receiving this information from other sources. Findings suggest a need to examine and assess media messages and to better understand patient-provider communication about cognitive functioning.

Multisite qualitative study of primary care physicians' and midlevel providers' self-reported practices and perceptions about maintaining cognitive health.

INTRODUCTION: To facilitate national efforts to maintain cognitive health through public health practice, the Healthy Brain Initiative recommended examining diverse groups to identify stakeholder perspectives on cognitive health. In response, the Healthy Aging Research Network (HAN), funded by the Centers for Disease Control and Prevention (CDC), coordinated projects to document the perspectives of older adults, caregivers of people with dementia, and primary care providers (PCPs) on maintaining cognitive health. Our objective was to describe PCPs' perceptions and practices regarding cognitive health. METHODS: HAN researchers conducted 10 focus groups and 3 interviews with physicians (N = 28) and advanced practice providers (N = 21) in Colorado, Texas, and North Carolina from June 2007 to November 2008. Data were transcribed and coded axially. RESULTS: PCPs reported addressing cognitive health with patients only indirectly in the context of physical health or in response to observed functional changes and patient or family requests. Some providers felt evidence on the efficacy of preventive strategies for cognitive health was insufficient, but many reported suggesting activities such as games and social interaction when queried by patients. PCPs identified barriers to talking with patients about cognitive health such as lack of time and patient reactions to recommendations. CONCLUSION: Communicating new evidence on cognitive health and engaging older adults in making lasting lifestyle changes recommended by PCPs and others may be practical ways in which public health practitioners can partner with PCPs to address cognitive health in health care settings.

Effects of the built environment on physical activity of adults living in rural settings.

OBJECTIVE: To conduct a systematic review of the literature to examine the influence of the built environment (BE) on the physical activity (PA) of adults in rural settings. DATA SOURCE: Key word searches of Academic Search Premier, PubMed, CINAHL, Web of Science, and Sport Discus were conducted. STUDY INCLUSION AND EXCLUSION CRITERIA: Studies published prior to June 2008 were included if they assessed one or more elements of the BE, examined relationships between the BE and PA, and focused on rural locales. Studies only reporting descriptive statistics or assessing the reliability of measures were excluded. DATA EXTRACTION: Objective(s), sample size, sampling technique, geographic location, and definition of rural were extracted from each study. Methods of assessment and outcomes were extracted from the quantitative literature, and overarching themes were identified from the qualitative literature. DATA SYNTHESIS: Key characteristics and findings from the data are summarized in Tables 1 through 3. RESULTS: Twenty studies met inclusion and exclusion criteria. Positive associations were found among pleasant aesthetics, trails, safety/crime, parks, and walkable destinations. CONCLUSIONS: Research in this area is limited. Associations among elements of the BE and PA among adults appear to differ between rural and urban areas. Considerations for future studies include identifying parameters used to define rural, longitudinal research, and more diverse geographic sampling. Development and refinement of BE assessment tools specific to rural locations are also warranted.

Perceptions of cardiovascular health in underserved communities.

INTRODUCTION: Cardiovascular disease is the leading cause of deaths and illnesses in US adults, and the prevalence is disproportionately high in underserved populations. In this study, we assessed respondents' understanding of context-specific differences in knowledge and perceptions of disease, risk, and prevention in 6 underserved communities, with the longer-term goal of developing appropriate interventions. METHODS: Thirty-nine small-group sessions and 14 interviews yielded data from 318 adults. Each site's researchers coded, analyzed, and extracted key themes from local data. Investigators from all sites synthesized results and identified common themes and differences. RESULTS: Themes clustered in 3 areas (barriers to cardiovascular health, constraints related to multiple roles, and suggestions for effective communications and programs). Barriers spanned individual, social and cultural, and environmental levels; women in particular cited multiple roles (eg, competing demands, lack of self-care). Programmatic suggestions included the following: personal, interactive, social context; information in language that people use; activities built around cultural values and interests; and community orientation. In addition, respondents preferred health-related information from trusted groups (eg, AARP), health care providers (but with noticeable differences of opinion), family and friends, and printed materials. CONCLUSION: Interventions to decrease barriers to cardiovascular health are needed; these strategies should include family and community context, small groups, interactive methods, culturally sensitive materials, and trusted information sources. New-immigrant communities need culturally and linguistically tailored education before receiving more substantive interventions.

Massage therapy versus simple touch to improve pain and mood in patients with advanced cancer: a randomized trial.

BACKGROUND: Small studies of variable quality suggest that massage therapy may relieve pain and other symptoms. OBJECTIVE: To evaluate the efficacy of massage for decreasing pain and symptom distress and improving quality of life among persons with advanced cancer. DESIGN: Multisite, randomized clinical trial. SETTING: Population-based Palliative Care Research Network. PATIENTS: 380 adults with advanced cancer who were experiencing moderate-to-severe pain; 90% were enrolled in hospice. INTERVENTION: Six 30-minute massage or simple-touch sessions over 2 weeks. MEASUREMENTS: Primary outcomes were immediate (Memorial Pain Assessment Card, 0- to 10-point scale) and sustained (Brief Pain Inventory [BPI], 0- to 10-point scale) change in pain. Secondary outcomes were immediate change in mood (Memorial Pain Assessment Card) and 60-second heart and respiratory rates and sustained change in quality of life (McGill Quality of Life Questionnaire, 0- to 10-point scale), symptom distress (Memorial Symptom Assessment Scale, 0- to 4-point scale), and analgesic medication use (parenteral morphine equivalents [mg/d]). Immediate outcomes were obtained just before and after each treatment session. Sustained outcomes were obtained at baseline and weekly for 3 weeks. RESULTS: 298 persons were included in the immediate outcome analysis and 348 in the sustained outcome analysis. A total of 82 persons did not receive any allocated study treatments (37 massage patients, 45 control participants). Both groups demonstrated immediate improvement in pain (massage, -1.87 points [95% CI, -2.07 to -1.67 points]; control, -0.97 point [CI, -1.18 to -0.76 points]) and mood (massage, 1.58 points [CI, 1.40 to 1.76 points]; control, 0.97 point [CI, 0.78 to 1.16 points]). Massage was superior for both immediate pain and mood (mean difference, 0.90 and 0.61 points, respectively; P < 0.001). No between-group mean differences occurred over time in sustained pain (BPI mean pain, 0.07 point [CI, -0.23 to 0.37 points]; BPI worst pain, -0.14 point [CI, -0.59 to 0.31 points]), quality of life (McGill Quality of Life Questionnaire overall, 0.08 point [CI, -0.37 to 0.53 points]), symptom distress (Memorial Symptom Assessment Scale global distress index, -0.002 point [CI, -0.12 to 0.12 points]), or analgesic medication use (parenteral morphine equivalents, -0.10 mg/d [CI, -0.25 to 0.05 mg/d]). LIMITATIONS: The immediate outcome measures were obtained by unblinded study therapists, possibly leading to reporting bias and the overestimation of a beneficial effect. The generalizability to all patients with advanced cancer is uncertain. The differential beneficial effect of massage therapy over simple touch is not conclusive without a usual care control group. CONCLUSION: Massage may have immediately beneficial effects on pain and mood among patients with advanced cancer. Given the lack of sustained effects and the observed improvements in both study groups, the potential benefits of attention and simple touch should also be considered in this patient population.

Building capacity for heart disease and stroke prevention research: the cardiovascular health intervention research and translation network.

The Centers for Disease Control and Prevention's Division for Heart Disease and Stroke Prevention created the Prevention Research Centers (PRCs) Cardiovascular Health Intervention Research and Translation Network (CHIRTN) in 2005 to develop partnerships and create a research agenda that addresses cardiovascular health promotion. Six participating universities with expertise in heart disease and stroke prevention research collaborate with their PRC partner communities and other partners to (a) conduct demonstration research projects and (b) identify gaps in knowledge and make recommendations for future research to address those gaps. This report describes the structure and current efforts of the CHIRTN. The goal of these efforts is to promote cardiovascular health for Americans, particularly underserved, at-risk populations.

Chronic pain increases the risk of decreasing physical performance in older adults: the San Luis Valley Health and Aging Study.

BACKGROUND: Pain often accompanies chronic disease in older adults and may exacerbate physical limitations, which the Disablement Model suggests may increase disability and decrease independence. This study tests the hypothesis that chronic pain and change in levels of pain over time have associations with worsening physical performance independent of disease conditions. METHODS: We studied the effects of initial and changing levels of pain on observed physical performance over approximately 22 months in 925 community-dwelling Hispanic and non-Hispanic white participants in the San Luis Valley Health and Aging Study. Logistic regression models controlled for demographic variables, baseline performance, and comorbidities. RESULTS: We found that chronic pain has an independent association with worsening physical performance, regardless of ethnicity. The intensity of the pain appears to have no independent effect. Although the presence of multiple comorbidities (or vascular disease or diabetes singly) also increases the risk of a worsened physical performance outcome, an independent effect of chronic pain remains after adjusting for these disease conditions. Furthermore, ongoing chronic pain increases the risk of worsening performance; obversely, recovery from chronic pain has a significant and substantial protective effect. CONCLUSIONS: Pain in and of itself appears to increase physical impairment. These results strongly suggest that controlling chronic pain may interrupt the negative disease-impairment-disability trajectory by significantly reducing impaired physical performance, no matter the disease conditions that may underlie the pain.

Community-based treatment of late life depression an expert panel-informed literature review.

OBJECTIVES: To present findings from an expert panel-informed literature review on community-based treatment of late-life depression. METHODS: A systematic literature review was conducted to appraise publications on community-based interventions for depression in older adults. The search was conducted between March and October 2005. An expert panel of mental health, aging, health services, and epidemiology researchers guided the review and voted on quality and effectiveness of these interventions. RESULTS: A total of 3,543 articles were found with publication dates from 1967 to October 2005; of these, 116 were eligible for inclusion. Adequate data existed to determine effectiveness for the following interventions: depression care management, group and individual psychotherapy for depression, psychotherapy targeting mental health, psychotherapy for caregivers, education and skills training (to manage health problems besides depression; and for caregivers), geriatric health evaluation and management, exercise, and physical rehabilitation and occupational therapy. After reviewing the data, panelists rated the depression care management interventions as effective. Education and skills training, geriatric health evaluation and management, and physical rehabilitation and occupational therapy received ineffective ratings. Other interventions received mixed effectiveness ratings. Insufficient data availability and poor study quality prevented the panelists from rating several reviewed interventions. CONCLUSIONS: While several well-described interventions were found to treat depression effectively in community-dwelling older adults, significant gaps still exist. Interventions that did not target depression specifically may be of benefit to older adults, but they should not be presumed to treat depression by themselves. Treating depressed elders may require a multifaceted approach to ensure effectiveness. More research in this area is needed.

Time course and characteristics of symptom distress and quality of life at the end of life.

This study sought to describe the characteristics and correlates of symptom distress and quality of life (QOL) among persons receiving hospice/palliative care. English-speaking adults (n=86), their nurses (n=86), and family caregivers (n=49) from 11 hospice/palliative care organizations completed the Memorial Symptom Assessment Scale (MSAS) and McGill Quality of Life Questionnaire (MQOL) at hospice/palliative care enrollment, at one week, two weeks, then monthly until death or discharge. Mixed effects modeling using proxy reports to impute missing patient-reported data were used to describe predictors of symptom distress and QOL. Given study population attrition due to death, analyses are limited to the first 17 days following hospice/palliative care admission. While lack of energy and pain were the most prevalent and distressing symptoms (prevalence 92% and 82%, respectively; mean MSAS scores 3.27 and 2.71, respectively), pain was identified as the most distressing symptom based on its contribution to MSAS summary scores and responses to a single-item "most distressing symptom" question. Pain, nonpain symptom distress, and MQOL scores remained fairly stable throughout the study period. Distress from all other physical symptoms was significantly associated with distress due to pain. There were no significant associations between patient characteristics and distress due to pain. While greater psychological symptom distress had a negative association with QOL, neither pain nor other physical symptom distress was associated with QOL. The persistence of significant symptom distress, particularly due to pain, argues for the need for enhanced evidence to guide care provided in the last days and weeks of life.

Older Adult Strategies for Community Wayfinding.

Community wayfinding becomes more challenging with age and decrements in functioning. Given the growth in numbers of older adults, we need to understand features that facilitate or inhibit wayfinding in outdoor settings to enhance mobility and community engagement. This exploratory study of 35 short- ( n = 14) and long-term ( n = 21) residents in an ethnically diverse neighborhood identified relevant wayfinding factors. Data collection included an interview, map-drawing task, and walk along a previously audited, prescribed route to identify key wayfinding strategies. Most participants sought information from other people as a primary method of route planning. Street signs and landmarks were overwhelming favorites as helpful wayfinding features. When asked to recall the route following the walk, only half of participants gave completely correct directions. Findings reinforce the importance of landmarks and legible, systematic, and consistently available signage, as well as trustworthy person-to-person information sources. Findings also underscore the need for wayfinding research in diverse environments.

Symptom distress and quality-of-life assessment at the end of life: the role of proxy response.

This study sought to advance understanding of the relationships among proxy and patient reports of symptom distress and quality of life (QOL). English-speaking adults (n=86), their nurses (n=86), and family caregivers (n=49) from 11 hospice/palliative care organizations completed the Memorial Symptom Assessment Scale (MSAS) and McGill Quality of Life Questionnaire (MQOL) at hospice/palliative care enrollment, at 1 week, 2 weeks, then monthly until death or discharge. Patients and proxies provided similar average reports of symptom distress, both physical and psychological, but MSAS correlations were generally poor. MQOL correlations were higher for nurse-patient than for patient-caregiver dyads. Based on small differences between ratings but only moderate levels of correlation, proxy response appears to be a fair substitute for patient response, suggesting that symptom and QOL reports should be obtained from all available respondents throughout the course of clinical care or research in the hospice/palliative care setting.