Evaluating the Dyadic Benefits of Early-Phase Behavioral Interventions: An Exemplar Using Data from Couples Living with Parkinson's Disease.

BACKGROUND AND OBJECTIVES: There are a growing number of early-phase (i.e., Stage I, NIH Stage Model) interventions targeted at family care dyads navigating chronic health conditions in older adults. Currently, benefits of these interventions are often evaluated for older adults and their family care partners separately, even when controlling for interdependence. Without understanding benefits (and potential harms) for dyads as a whole, understanding of program impact is incomplete. Moreover, few health behavior interventions involving dyads include relational measures to ensure no unintended consequences for the dyad or account for within-dyad pre-test risk level. RESEARCH DESIGN AND METHODS: We used secondary data from a quasi-experimental trial involving 39 couples in which one member of the dyad was living with Parkinson's Disease as an exemplar demonstration of three proposed approaches: an above-zero approach, a pre-test risk status approach, and an expanded pattern analysis matrix approach. RESULTS: Approaches provided evidence for dyadic benefits of the intervention compared to the wait-list comparison condition, but carry different assumptions that did not always categorize dyads similarly. DISCUSSION AND IMPLICATIONS: Implications of using each approach and selecting different benchmarks for defining success are discussed. The descriptive approaches proposed provide rationale for more intentional evaluation of small-sample, early-phase dyadic interventions.

Supportive care decision-making processes of persons with dementia and their caregivers.

Little is known about the decision-making processes around seeking more supportive care for dementia. Persons with dementia are often left out of decision-making regarding seeking more supportive care as their dementia progresses. This paper provides a description of findings from the Decision-making in Alzheimer's Research project (DMAR) investigating the process of decision-making about transitions to more supportive care. We conducted 61 qualitative interviews with two stakeholder groups: 24 persons with dementia, and 37 informal caregivers to explore supportive care decisions and associated decision-making factors from the perspectives of persons with dementia and their caregivers. We identified four main decisions that persons with dementia and their informal caregivers played a role in: (1) sharing household responsibilities; (2) limiting routine daily activities; (3) bringing in formal support; and (4) moving to a care facility. Based on our findings we developed a schematized roadmap of decision-making that we used to guide the discussion of our findings. Four crosscutting themes emerged from our analysis: unknowns and uncertainties, maintaining life as you know it, there's no place like home and resource constraints. These results will be incorporated into the development of instruments whose goal is to identify preferences of persons with dementia and their caregivers, in order to include persons with dementia in care decisions even as their dementia progresses.

Depressive symptoms in older adult couples: Associations with dyadic physical health, social engagement, and close friends.

Objective: The objective of this study was to examine associations between level of depressive symptoms in older adult spouse/partner couples and their physical health and social factors (social activity and number of close friends). Methods: Using data from 116 community-dwelling couples (age 76.2 ± 8.5), we simultaneously analyzed associations between depressive symptoms (Geriatric Depression Scale, range 0-11) and dyadic physical health, engagement in social activities, and connectedness with close friends. Results: Greater engagement in social activities was associated with fewer depressive symptoms in men, whereas more close friendships were associated with fewer depressive symptoms in women, controlling for partner effects, age, education, and cognitive function, with good model fit. Additionally, more disparate physical health within the couple (latent incongruence score) was associated with greater depressive symptoms in men. Discussion: Less social activity and fewer close friends were associated with depressive symptoms in older adult couples, but may be distinctly influential depending on gender and in the context of the older adult couple's physical health.

The Remote Assessment and Dynamic Response Program: Development of an In-Home Dementia-Related Care Needs Assessment to Improve Well-Being.

Background and Objectives: The Remote Assessment and Dynamic Response (READyR) Program was developed in order to address the current lack of early-stage dementia care planning programs that assess the care needs of persons with dementia. The goal was to create a program informed by care values and ongoing ecologically valid data. The objectives of this study are to describe the development and design process of the READyR Program, and to evaluate the utility of the READyR Program for identifying dementia-related care needs. Research Design and Methods: A prototype of the web-based READyR Program tool was first created using digital activity data that were collected by previous studies using a platform of multimodal sensors installed in the homes of older adult couples with and without dementia. Digital activity data were then mapped onto potential care values (e.g., safety & autonomy) to create a values-based needs assessment that is tailored to the individual care dyad. Next, evaluation of the READyR Program by 11 professional dementia care coordinators and case managers (across 3 semistructured focus groups) was used to explore the utility of READyR for assessing dementia-related needs. Qualitative description using conventional content analysis was used to iteratively code focus group data and to describe prevalent themes. Results: Prevalent focus groups themes included barriers to (e.g., family relationship strain) and facilitators of (e.g., tailored assessments) the optimal process for assessing dementia-related care needs by care coordinators, as well as advantages to (e.g., providing new objective insights into function, and routines) and disadvantages of (e.g., bringing up new questions about care) incorporating the remote monitoring data into a values-based needs assessment. Discussion and Implications: READyR has the potential to help family members, as well as care coordinators and providers, gain insight into the values-based care needs of persons with early-stage dementia. Clinical Trials Registration Number: NCT04542109.

Can changes in social contact (frequency and mode) mitigate low mood before and during the COVID-19 pandemic? The I-CONECT project.

BACKGROUND/OBJECTIVES: The coronavirus disease 2019 (COVID-19) global outbreak allowed a natural experiment to observe how older adults changed social patterns and how it affected their emotional well-being. We studied the frequency and modes of social contact and their effects on older adults' mood before and during the COVID-19 pandemic. DESIGN: Phone-based surveys were administered weekly before and during the COVID-19 pandemic. SETTING: Participants were recruited from Portland, Oregon, and Detroit, Michigan. PARTICIPANTS: Older adults ≥75 years old (n = 155, age = 81.0 ± 4.5, 72.3% women) were included in a randomized controlled trial, the Internet-Based Conversational Engagement Clinical Trial (I-CONECT). MEASUREMENTS: Low mood was self-reported as feeling downhearted or blue for three or more days in the past week. Social contact was self-reported by the amount of time spent in interactions, with whom (family, friends, others), and via which modes (in-person, phone/video call, text/email/letter). RESULTS: A total of 5525 weeks of data were derived from 155 participants. Before the COVID-19 pandemic, average social interaction time spent in-person, on phone/video call, and via text/email/letter was 406, 141, and 68 min/week, respectively. During the COVID-19 pandemic, time spent in-person was reduced by 135 min/week, while time spent via phone/video call and writing increased by 33 and 26 mins/week, respectively. In-person family contact was associated with less low mood regardless of the pandemic (odds ratio = 0.92, p < 0.05). There was a COVID-19 × text/email/letter with friends interaction (odds ratio = 0.77, p = 0.03), suggesting that during the COVID-19 pandemic, an increase of 1 h of writing with friends per week was associated with a 23% decrease in the likelihood of experiencing low mood. CONCLUSION: The lost in-person time relating to COVID-19 restrictions tended to be partially compensated for with increased calls and writing time, although overall social interaction time decreased. During the COVID-19 pandemic, at least two types of social interactions (writing to friends and in-person family time) showed promise for mitigating low mood for older adults with limited social resources.

Corrigendum to: Prolonged Physical Inactivity in Older Adult Couples: A Dyadic Analysis Using Actigraphy.

[This corrects the article DOI: 10.1093/geroni/igaa066.].

Prolonged Physical Inactivity in Older Adult Couples: A Dyadic Analysis Using Actigraphy.

BACKGROUND AND OBJECTIVES: Many older adults remain inactive despite the known positive health implications of physical activity (improved mood, reduced mortality risk). Physical inactivity is an interdependent phenomenon in couples, but most research examines physical inactivity at the individual level. We estimated the average amount of prolonged physical inactivity for older adult couples and, using dyadic analysis, identified physical and mental health determinants thereof. RESEARCH DESIGN AND METHODS: Forty-six heterosexual older adult couples (age = 70.61 ± 6.56) from the Veterans Integrated Service Network 20 cohort of the Collaborative Aging Research using Technology (CART) initiative were included. The average number per day of prolonged inactive periods (no step counts or sleep activity for ≥30 min) was estimated using actigraphy data collected over a month. RESULTS: Multilevel modeling revealed that, within couples, there was no significant difference between partners in the average amount of inactive periods (p = .28). On average across couples, males and females had an average of 6.90 ± 2.02 and 6.56 ± 1.93 inactive periods per day, respectively. For males, older age was the only variable associated with more inactive periods (ß = 0.15, p = .002). For females, having more depressive symptoms in both dyad members was associated with fewer inactive periods (female: ß = -0.30, p = .03; male: ß = -0.41, p < .001), and more dependence in completing their own instrumental activities of daily living predicted more inactive periods (ß = 2.58, p < .001). DISCUSSION AND IMPLICATIONS: Viewing couples' activity as an interdependent phenomenon, rather than individual, provides a novel approach to identifying pathways to reduce inactivity in older adults, especially when focusing on the mental health and level of independence within the couple.

Health profiles of spouse caregivers: The role of active coping and the risk for developing prolonged grief symptoms.

STUDY AIMS: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms. DESIGN & METHODS: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale). RESULTS: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms. CONCLUSIONS: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life.

The Collaborative Aging Research Using Technology Initiative: An Open, Sharable, Technology-Agnostic Platform for the Research Community.

INTRODUCTION: Future digital health research hinges on methodologies to conduct remote clinical assessments and in-home monitoring. The Collaborative Aging Research Using Technology (CART) initiative was introduced to establish a digital technology research platform that could widely assess activity in the homes of diverse cohorts of older adults and detect meaningful change longitudinally. This paper reports on the built end-to-end design of the CART platform, its functionality, and the resulting research capabilities. METHODS: CART platform development followed a principled design process aiming for scalability, use case flexibility, longevity, and data privacy protection while allowing sharability. The platform, comprising ambient technology, wearables, and other sensors, was deployed in participants' homes to provide continuous, long-term (months to years), and ecologically valid data. Data gathered from CART homes were sent securely to a research server for analysis and future data sharing. RESULTS: The CART system was created, iteratively tested, and deployed to 232 homes representing four diverse cohorts (African American, Latinx, low-income, and predominantly rural-residing veterans) of older adults (n = 301) across the USA. Multiple measurements of wellness such as cognition (e.g., mean daily computer use time = 160-169 min), physical mobility (e.g., mean daily transitions between rooms = 96-155), sleep (e.g., mean nightly sleep duration = 6.3-7.4 h), and level of social engagement (e.g., reports of overnight visitors = 15-45%) were collected across cohorts. CONCLUSION: The CART initiative resulted in a minimally obtrusive digital health-enabled system that met the design principles while allowing for data capture over extended periods and can be widely used by the research community. The ability to monitor and manage health digitally within the homes of older adults is an important alternative to in-person assessments in many research contexts. Further advances will come with wider, shared use of the CART system in additional settings, within different disease contexts, and by diverse research teams.

Well-being in dementia: a cross-sectional dyadic study of the impact of multiple dimensions of strain on persons living with dementia and their family care partners.

ABSTRACTBackground and Purpose:The impact of dementia-related stressors and strains have been examined for their potential to threaten the well-being of either the person with dementia or the family care partner, but rarely have studies considered the dyadic nature of well-being in dementia. The purpose of this study was to examine the dyadic effects of multiple dimensions of strain on the well-being of dementia care dyads. METHODS: Using multilevel modeling to account for the inter-relatedness of individual well-being within dementia care dyads, we examined cross-sectional responses collected from 42 dyads comprised of a hospitalized patient diagnosed with a primary progressive dementia (PWD) and their family care partner (CP). Both PWDs and CPs self-reported on their own well-being using measures of quality of life (QOL-Alzheimer's Disease scale) and depressive symptoms (Center for Epidemiological Studies Depression Scale). RESULTS: In adjusted models, the PWD's well-being (higher QOL and lower depressive symptoms) was associated with significantly less strain in the dyad's relationship. The CP's well-being was associated with significantly less care-related strain and (for QOL scale) less relationship strain. CONCLUSIONS: Understanding the impact of dementia on the well-being of PWDs or CPs may require an assessment of both members of the dementia care dyad in order to gain a complete picture of how dementia-related stressors and strains impact individual well-being. These results underscore the need to assess and manage dementia-related strain as a multi-dimensional construct that may include strain related to the progression of the disease, strain from providing care, and strain on the dyad's relationship quality.

Care Values in Dementia: Patterns of Perception and Incongruence Among Family Care Dyads.

BACKGROUND AND OBJECTIVES: Persons with dementia (PWDs) often place greater importance on their care values (i.e., maintaining autonomy and social relations, choosing caregivers, avoiding being a burden) than family caregivers (CGs) perceive, which can detract from dementia care planning (e.g., care arrangements or surrogate decisions). Notable variability has been found across family care dyads (PWD and CG) in their perceptions of care values, suggesting that there may be multiple patterns of perception. The purpose of this study was to characterize distinct patterns of perception of care values in family care dyads. DESIGN AND METHODS: Using cross-sectional data from 228 community-dwelling family care dyads, we quantified dyads' average perceptions and incongruence in perceptions of the importance of everyday care values using multilevel modeling. These scores were then used in a latent class analysis to identify distinct patterns of perception, with the dyad as the unit of analysis. RESULTS: Two distinct patterns of care value perception were identified. 25% of dyads were labeled as "CG underestimating" due to lower average estimations of the importance of PWDs' care values, and a significant amount of dyadic incongruence. Underestimating dyads were characterized by a confirmed diagnosis of dementia, lower cognitive function, and younger age in PWDs, and higher relationship strain in the dyad. IMPLICATIONS: Care dyads that fall into an underestimating pattern may be at greater risk for inadequate dementia care planning. Interventions to improve care planning in this higher-risk group may include care values identification with the PWD, strategies for alleviating relationship strain, early-stage planning, and disease education.

Incongruent perceptions of the care values of hospitalized persons with dementia: a pilot study of patient-family caregiver dyads.

OBJECTIVE: Many difficult decisions are made in the inpatient hospital setting regarding the daily care of persons with dementia (PWDs). Incongruent perceptions of the PWD's care values limit the family caregiver's ability to make surrogate decisions. The objectives of this pilot study were to describe and identify determinants of incongruent perceptions in the hospital setting. METHODS: Using multilevel modeling (MLM), we examined cross-sectional data collected from 42 PWD-family caregiver dyads. RESULTS: There was a significant amount of incongruence, on average, for all four subscales representing the PWD's care values: autonomy = -0.33 (p < .001); burden = -.49 (p < .001); safety/quality of care = -.26 (p < .001); and social interactions = -.21 (p = .004). Family caregivers (CG) rated the importance of care values to the PWD as lower than the PWD rated the importance. Determinants of greater incongruence included higher relationship strain and fewer positive dyadic interactions. CONCLUSION: Our findings reveal significant levels of incongruence in perceptions of the PWD's values among dementia care dyads in the hospital setting. Our analysis suggests a potential impact of relationship variables on incongruence. Further research is needed around this overlooked interpersonal context for supporting the dementia care dyad in the hospital setting.

Involvement of Hospitalized Persons With Dementia in Everyday Decisions: A Dyadic Study.

Background and Objectives: To examine the involvement of persons with dementia (PWDs) in everyday decision making from the perspectives of hospitalized PWDs and their family caregivers, and to identify determinants thereof. Research Design and Methods: Using multilevel modeling, we examined cross-sectional data collected prospectively from 42 family care dyads regarding the care values of the PWD. Results: Both members of the dyad rated the PWD, on average, as being "somewhat involved". There was a significant amount of variability around the average perceptions of PWD involvement in decision making for both PWDs (χ2 = 351.02, p < .001) and family caregivers (χ2 = 327.01, p < .001). Both PWDs and family caregivers were significantly more likely to perceive greater PWD involvement in decision making when the family caregiver reported the PWD as valuing autonomy. Additionally, PWDs were significantly more likely to report greater involvement when they had greater cognitive function. Finally, family caregivers perceived significantly greater involvement of the patient in decision making when they reported less strain in the relationship. Together, autonomy, relationship strain, cognitive function, and care-related strain accounted for 38% and 46% of the variability in PWDs' and family caregivers' perceptions, respectively, of the PWD's decision-making involvement. Discussion and Implications: Although research indicates that decision-making abilities decline with advancing dementia, these results imply that working with families to support PWDs in their value of autonomy and mitigate strain in the dyad's relationship may help prolong PWDs' decision-making involvement.

Dyadic Perceptions of the Decision Process in Families Living With Lung Cancer.

PURPOSE/OBJECTIVES: To use dyadic analyses to identify determinants of patients' and family members' perceptions of the positive and negative aspects of the decision-making process in families living with lung cancer. 
. DESIGN: Cross-sectional study. 
. SETTING: Community setting in Greater Portland, Oregon.
. SAMPLE: 109 family care dyads (patient and family member) recruited from a statewide cancer registry. 
. METHODS: Surveys were completed in-person, separately, and privately by each member of the family care dyad. Secondary analysis was completed using multilevel modeling. 
. MAIN RESEARCH VARIABLES: Negative and positive aspects of the decision process. 
. FINDINGS: Level 1 data revealed significant variability across care dyads' positive or negative perceptions of the decision-making process. Level 2 results for negative perceptions of decision making indicated that patient and family member perceptions were significantly associated with their own depressive symptoms and feelings of not being listened to by others. Level 2 results for positive perceptions of decision making indicated that patient and family member perceptions were significantly inversely associated with their own feelings of not being listened to and being in nonspousal relationships. In addition, family members' perceptions were more positive when the patients were older. 
. CONCLUSIONS: This study highlighted the complexity of the decision-making process in families with lung cancer, and underscored the importance of the care dyad feeling listened to by family members in the context of life-threatening illnesses. 
. IMPLICATIONS FOR NURSING: Nurses assisting families with decisions about lung cancer should be aware of the dynamics of the care dyad and how the decision process is perceived by patients and their family members.

The Roles of Dyadic Appraisal and Coping in Couples With Lung Cancer.

Given the high symptom burden and low survivability of lung cancer, patients and their spouses have been found to experience poor mental health. The current study examined the roles of dyadic appraisal and dyadic coping on the mental health of 78 couples living with non-small cell lung cancer. Multilevel modeling revealed that spouses, on average, reported significantly worse mental health than patients. Dyadic appraisal and dyadic coping played important roles in predicting mental health, controlling for known developmental and contextual covariates. Dyadic appraisal of the patient's pain and fatigue was significantly associated with spouse mental health, albeit in opposite directions. Dyadic coping significantly predicted patient mental health. The study underlines the need to incorporate routine screening of both patient and spouse mental health, and highlights the complex role of appraisal within the couple in a life-threatening context. Viewing the couple as a unit, rather than separate individuals, raises important awareness about the role of disparate illness appraisals and coping strategies within the dyad on the health of both members. Nurses are particularly well situated to engage in a collaborative family-focused approach to the couple with cancer that promotes communication and health.

Shared decision-making in dementia: A review of patient and family carer involvement.

This paper reviews empirical findings concerning the decision-making process of persons with dementia and their family carers, with a particular focus on the extent and determinants of involvement of persons with dementia in the decision-making process. To be included in this review, studies needed to be published in peer-reviewed journals between 1999 and 2014, report empirical data from participants with dementia and/or their family carers, and pertain to the involvement of persons with dementia and their family carers in decisions about everyday care, medical care and treatment, or long-term care. A total of 36 studies were included. Results indicated that not all persons with dementia are excluded from participating in the decision-making process, but there is a broad spectrum of what constitutes shared decision-making in dementia. Studies concerning the determinants of shared decision-making mostly focused on non-modifiable factors. Future research is needed to better promote shared decision-making among persons with dementia and their family carers.

Incongruent perceptions of pain and physical function among families living with lung cancer.

PURPOSE: The purpose of the study was to examine the roles of concealment and communication in incongruence in perceptions of the lung cancer patient's physical function and pain severity. METHODS: Lung cancer patients and their family members (N = 108 family care dyads) rated the patient's physical function and pain severity. RESULTS: Multilevel modeling revealed that family members, on average, rated patient physical function significantly worse than patients; incongruence did not significantly differ from 0, on average, for pain severity. However, there was significant variability across family care dyads in how much incongruence existed within dyads. Controlling for depressive symptoms, family member role overload, family member physical function, the patients' cognitive impairment, relationship type, and stage of lung cancer, the patients' level of concealment was significantly associated with incongruence for both physical function and pain severity. Additionally, the family members' perceptions of communication problems in the dyad were significantly associated with incongruence for pain severity. Models accounted for 23 and 30 % of the incongruence in physical function and pain severity, respectively. CONCLUSIONS: Open communication and disclosure play important roles in the appraisal of symptoms within the lung cancer patient-family member dyad. These interpersonal factors may be promising targets for interventions to maximize patient and family member outcomes.

Social activity decreases risk of placement in a long-term care facility for a prospective sample of community-dwelling older adults.

The purpose of this study was to determine the role of modifiable factors in the risk of long-term care (LTC) placement. Using data from a cohort of community-residing older adults (N = 189), a secondary analysis was conducted of the contribution of social activity, sleep disturbances, and depressive symptoms to the risk of LTC placement. Analyses controlled for cognitive and functional impairment, age, and medical conditions. Within 5 years, 20% of participants were placed in a LTC facility. Each unit increase in social activity was associated with a 24% decrease in the risk of placement (odds ratio [OR] = 0.763, p = 0.001, 95% confidence interval [CI] [0.65, 0.89]). Cognitive impairment (OR = 3.05, p = 0.017, 95% CI [1.23, 7.59]), medical conditions (OR = 1.22, p = 0.039, 95% CI [1.01, 1.47]), and age (OR = 1.101, p = 0.030, 95% CI [1.01, 1.20]) were also significant individual predictors of placement. Although many of the strongest risk factors for placement are not modifiable, older adults who engage in more social activity outside the home may be able to delay transition from independent living.