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Background: There are more than 1 million hospital admissions and 3 million emergency visits for heart failure in the U.S. annually. Although spouse/partners make substantial contributions to the management of heart failure and experience poor health and high levels of care strain, they are rarely the focus of heart failure interventions. This protocol describes a pilot randomized controlled trial that tests the feasibility, acceptability, and preliminary efficacy of a seven-session couple-based intervention called Taking Care of Us (TCU). The TCU intervention is grounded in the Theory of Dyadic Illness Management and was developed to promote collaborative illness management and better physical and mental health of adults with heart failure and their partners.Methods: A two-arm randomized controlled trial will be conducted. Eligible adults with heart failure and their co-residing spouse/partner will be recruited from a clinical site in the USA and community/social media outreach and randomized to either the TCU intervention or to a control condition (SUPPORT) that offers education around heart failure management. The target sample is 72 couples (36 per arm). TCU couples will receive seven sessions over two months via Zoom; SUPPORT couples will receive three sessions over two months via Zoom. All participants will complete self-report measures at baseline (T1), post-treatment (T2), and 3 months post-treatment (T3). Acceptability and feasibility of the intervention will be examined using both closed-ended and open-ended questions as well as enrollment and retention metrics. Preliminary efficacy of TCU on dyadic health, dyadic appraisal, and collaborative management will be examined using standardized measures.Discussion: Theoretically-driven, evidence-based dyadic interventions are needed to optimize the health of both members of the couple living with heart failure. Results from this study will provide important information about recruitment and retention and benefits and drawbacks of the TCU program to directly inform a large-scale grant application to test the impact of the TCU program in a fully powered sample.Trial registration: ClinicalTrials.gov (NCT04737759) registered on 27 January 2021.

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

Background 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.

OBJECTIVE: Both caregivers and the older adults they care for can experience declines in quality of life (QOL) over the course of the dementia trajectory. Little research has examined QOL in African-American caregivers and even less in African-American persons with dementia (PWDs), making it difficult to identify associated factors. METHOD: Guided by the Negro Family as a Social System framework, a secondary data analysis was used to examine the influence of family structure, instrumental and expressive role functions on QOL in a sample of 62 African-American dementia dyads (i.e. African-American PWDs and their African-American caregivers). Dyadic data were analyzed using multilevel modeling to control for the interdependent nature of the data. RESULTS: On average, African-American PWDs reported significantly worse QOL than African-American caregivers. Within African-American dementia dyads, QOL covaried. African-American PWDs experienced significantly worse QOL when their caregiver was a non-spouse and they themselves perceived less involvement in decision-making. In addition, African-American caregivers experienced significantly worse QOL when they reported greater dyadic strain with the African-American PWD and were non-spouses of African-American PWDs. CONCLUSION: Findings suggest understanding the interpersonal characteristics (e.g., dyadic relationship, family structure and role functions) of dyads may hold promise for improving their QOL.

Objectives Recruiting and enrolling appropriate participants into research trials for chronic illness populations can be challenging and time intensive. Successful recruitment requires a variety of strategies that may change as the study progresses. This paper reports on the challenges of and actions taken for recruiting and enrolling into research families living with chronic illnesses. Methods We draw on our experiences from over 20 years of research enrolling older adults and their family caregivers (care dyads) into psychosocial research trials. Barriers and actions taken to challenges of recruiting care dyads are presented that can help future investigators meet their recruitment goals in a timely and efficient manner. Results Despite efforts of an Advisory Committee, numerous community partnerships, and other attempts to boost enrollment, our recruitment goals were not met. Barriers to meeting these goals are described (e.g. partner site staff turnover, lack of site “champion”) and potential actions taken. Discussion This paper examines the challenges experienced recruiting appropriate chronic illness dyads into a psychosocial intervention as well as the various recruitment strategies that were used in an attempt to reach recruitment goals.

This article describes the implementation of SHARE (Support, Health, Activities, Resources, and Education), a counseling-based care-planning intervention for persons living with early-stage dementia and their family caregivers (CGs). The foundation of SHARE is built upon assessing and documenting the person living with dementia’s care values and preferences for future care. Using the SHARE approach, CGs are given an opportunity to achieve an understanding of their loved one’s desires before the onset of disease progression when the demand for making care decisions is high. Through working together with a SHARE Counselor, the care dyad begins to identify other sources of support, such as family and friends and service providers, in order to build a more balanced and realistic plan of care for the future. Data were collected from 40 early-stage dementia care dyads to determine the acceptability of having structured discussions about future care in the early stages of dementia. Findings from this study demonstrate the importance of planning in the early stages when persons with dementia can voice their care values and preferences for future care. Finally, this paper illustrates the use of supportive strategies such as rapport building, establishing buy-in, and communication to initiate care-related discussions with care dyads in the early stages that will help lead to more effective decision making in the future.

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.

Purpose: The goal of this study was to explore predictors of discrepancy between reports of caregivers (CGs) and care recipients (CRs) with mild-to-moderate dementia about CRs’ quality of life (QOL). Design and Methods: This study was a secondary analysis of cross-sectional data drawn from a study of 200 care dyads of CRs with mild-to-moderate dementia and their primary family CGs. Paired t test, ordinary least squares multiple regression, and binary logistic regression were used for the analyses. Results: Caregivers rated CRs’ QOL significantly lower (worse) than CRs did. Ordinary least square regression results showed that greater incongruence in perceptions of CRs’ decision-making involvement (DMI) and higher level of CR impairment in activities of daily living were significantly related to higher absolute discrepancy between CG and CR about CRs’ QOL. In the logistic models, when the dyad had more DMI incongruence, or CG reported higher relationship strain, the CG was more likely to report a lower CR QOL than CR reported. Implications: Practitioners should consider incorporating CRs’ perspective when planning care instead of solely depending on CGs’ perspective. Also, practitioners should pay attention to any gap between perceptions of CGs and CRs, particularly with regard to CRs’ QOL.

Advances in diagnostic procedures have helped to make diagnosing Alzheimer’s disease and other dementias more accurate and to occur earlier in the disease progression. For persons living with dementia and their family care partners, finding programs that meet their needs for support post diagnosis can be challenging. Likewise, for persons with chronic conditions, few programs exist which help care dyads to create a manageable plan of care that addresses each person’s concerns and fears. SHARE, (Support, Health, Activities, Resources, and Education), originally designed for dementia care partners, has shown positive outcomes for both members of the care partnership. This presentation describes the development of the six-session SHARE intervention, its implementation in community settings, and its current standing as an evidence-based program and product that has been commercialized. Discussion will also focus on adapting SHARE for use with chronic illness families, highlighting revisions to program procedures, materials, recruitment, and evaluation.

Unmet dementia-related care needs are highly prevalent, and are detrimental to the care dyad’s health and well-being, safety, and ability to age in place. The goal of this study was to develop an ecologically-valid needs assessment and integrate it with aspects of the SHARE intervention to inform values-based care planning. Using digital behavioral data collected via an actigraphy watch and multimodal sensors installed in the homes of 76 older adult couples with and without dementia, we created a prototype of the objective measures informing READyR: time spent together or separate as a dyad, exits from the home, sleep habits, physical activity, daily weight, driving habits, and medication taking behavior. These digital behavioral data were then mapped onto care values (e.g. safety, avoiding burden & autonomy) to create a values-based needs assessment protocol that is tailored to the individual care dyad. Discussion will focus on future testing and applications of READyR.

Both caregivers and older adults can experience declines in quality of life (QOL) over the course of the illness. Yet, little research has examined QOL in African American (AA) caregivers and even less in AA persons with dementia (PWDs), making it difficult to identify modifiable risks and protective factors. As caregiving is inherently a dyadic process, we used multilevel modeling to simultaneously examine factors associated with QOL in a secondary data analysis of 58 AA dementia dyads. PWDs experienced significantly lower QOL when their caregiver was a non-spouse and they themselves perceived less involvement in decision-making; caregivers experienced significantly lower QOL when they reported greater dyadic strain with the PWD. Results emphasize the importance of the dyadic relationship and involving PWDs in decision-making. Findings will be discussed in light of potential clinical implications and future research and the need for dyadic focus on how AA dementia dyads function together.

In recent years, the focus on translation of research findings into practice settings has moved toward commercialization of scientific knowledge and applied research-tested practices. Many public, private, and non-profit organizations have considered taking their innovative findings into the open marketplace. Although there is growing evidence of the potential risks associated with this push to commercialize, more attention is needed to explore the methods used by researchers who attempt this potentially revenue-producing level of translation. This paper explores the unique commercialization efforts of the SHARE for Dementia intervention. Issues discussed will include: challenges maintaining treatment fidelity; the role of technology in the pursuit of commercialization; and learning to speak a new language when faced with issues related to marketing, intellectual property, and customer service. Examples of the evolution of intervention materials will be shown, as well as demonstrations of the SHARE online training course and iPad app.

Worldwide the number of people living with dementia is increasing. As the course of dementia is characterized by decreasing self-reliance and increasing need for support, persons with dementia and their families are frequently confronted with problems in daily life and difficult decisions concerning care and support options. Internationally, there is an urgent need to support persons with dementia and their families in making deliberate decisions about care and support options and to ensure that they receive adequate care. In this symposium four decision support interventions from the Netherlands, United Kingdom and the United States will be presented, with each focusing on a unique aspect of the development, evaluation and implementation of the interventions. First, the development and the pilot testing of the Conversation Guide Dementia, a tool for formal caregivers to support shared decision making in advanced care planning, will be discussed. Second, the efficacy evaluation and potential added value of a decision support app for formal caregivers to facilitate decisions concerning aging in place of people with dementia will be presented. Third, lessons learned from the development and evaluation of the DECIDE manual, a decision for family carers supporting them with decisions about the place to life of a person with dementia, will be described. Fourth, strategies, challenges and implications of the commercialization of the SHARE for Dementia Program, an early stage dyadic care planning intervention will be outlined. Finally, the discussant will reflect on the challenges in developing, testing and implementing decision support interventions in dementia care.

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.

Evidence supports the development of proactive, dyadic interventions for used in early-stage dementia. This type of intervention leads to more effective decision making which can reduce subsequent caregiver stress and burden. SHARE (Support, Health, Activities, Resources, Education), a six-session counseling-based intervention, encourages and supports care dyads to have important discussions about health care preferences that are often delayed or avoided until later-stage dementia. Typically, both the PWD and caregiver assume that most of the help will be delivered by the caregiver. SHARE aims to expand the network of care by evenly distributing care task responsibilities from the caregiver alone to other potential sources of support: family/friends and paid service providers. Early-stage dyads (n=63) successfully created a balanced and manageable plan of care with the help of their SHARE Counselor over a 6-month period. Follow-up interviews assessed care dyads from 1.5 to 2 years after their participation in SHARE ended. Analyses determined change in PWD ADL needs from enrollment (T1) to two years later (T2) and impact on caregiver task burden. Paired samples t-tests indicated a significant increase in PWD need for assistance with 18 ADLs, from a T1 mean of 8.76 to a T2 mean of 11.34 (t=-6.72, p=.000). This paper examines: 1) the benefits and challenges of creating a Care Plan in the early stages of dementia, 2) how SHARE dyads utilized their Care Plans when PWDs needed assistance, and 3) if reliance on family/friend and paid service provider options were realistic over time.

Dr. M. Powell Lawton was an inspirational and productive scholar whose work had application for improving personal care and well-being for older adults and their families. He held strong to the principles of Person- and Family-Centered Care long before this terminology and model of care was commonly practiced. He was a living example of PFCC always wearing comfortable clothes and shoes to ensure his unique creativity was not obstructed by physical discomfort. Dr. Lawton’s work has inspired countless gerontologists who have taken the next steps towards ensuring quality of care by understanding personal preferences, activities, and care values. Dr. Whitlatch will discuss Dr. Lawton’s ongoing influence on care and best practices focusing on her own research that gives voice to the care values, preferences, and activities of families facing early-stage dementia. Dr. Whitlatch encourages attendees to wear their most comfortable shoes to the lecture in honor of Dr. Lawton.

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.

Purpose A randomized controlled trial was conducted to test the effectiveness of the Support, Health, Activities, Resources, and Education Program. This six-session psycho-educational program provides dyadic counseling for individuals in the early stages of dementia and their family caregivers. The goal is to prevent common problems in care that emerge during the course of dementia by (1) actively engaging the person with dementia in developing a balanced plan of future care with his/her caregiver, (2) increasing use of available services, (3) enhancing dyadic relationship functioning, (4) improving well-being, and (5) evoking satisfaction with components of the intervention. Design and methods Persons with early stage dementia ( n = 128) and their caregivers ( n = 128) were randomly assigned either to Support, Health, Activities, Resources, and Education Program or a control condition. Intervention efficacy was evaluated for completion of a care plan, use of services, dyadic relationship functioning, participant well-being, and program satisfaction. Results Dyads in the treatment condition were able to construct a balanced care plan and increased their use of services. Dyadic functioning improved for one dimension (decreased emotional disruptions). Compared to the control condition, satisfaction with the intervention was higher for caregivers enrolled in Support, Health, Activities, Resources, and Education Program on four of five dimensions and one dimension for persons with dementia. Implications: Support, Health, Activities, Resources, and Education Program is a promising prevention approach that takes advantage of the early stage of dementia when both members of the dyad can participate fully in making decisions about later care.

Decision-making involvement of persons with dementia (PWD) has been associated with the PWD’s quality of life, underlines personhood and can reduce ethical dilemmas for family caregivers (CG) and clinicians (Menne, Judge, & Whitlatch, 2009; Miller, Whitlatch, & Lyons, 2016). Previous research has found the CG’s perception of the PWD’s care values are significantly associated with how involved the PWD is in decision-making (Reamy, Kim, Zarit, & Whitlatch, 2011; Reamy, Kim, Zarit, & Whitlatch, 2013). Yet, no known study has examined the relationship of care values and the older adult within African American (AA) culture. Using multivariate linear regression, we examined cross-sectional data collected from 57 AA dementia dyads (PWD and CG). The PWDs, on average, were 77.4(7.7) years old and CGs were 60.4(13.2) years old. Twenty nine percent of the dementia dyads were spousal caregivers. Results indicate the PWD was significantly more likely to perceive themselves as having greater involvement in decision making when the CG reported that the PWD valued autonomy (β = 0.38 ± 0.16, t = 2.42, p = .19) and when the PWD valued not being a burden (β = 0.53 ± 0.19, t = 2.76, p = .008). Type of CG and living status were not significantly associated with the PWD’s perception of decision-making involvement. Our findings suggest the importance of understanding the perception of both the PWD and CG. Future research is needed to examine decision-making within the context of the AA dementia dyad and the impact on the quality of life of both the PWD and CG.

The psychosocial impact of care preference incongruence on persons with dementia and their family caregiver remains unexplored in the literature. In-depth interviews were conducted with 128 dyads each consisting of a person with dementia and a family caregiver. Baseline data from an intervention study were used to examine incongruence between the preferences of the caregiver and the person with dementia (actual incongruence) as well as the caregiver’s own preferences and the caregiver’s perception of the person with dementia’s preferences (perceived incongruence). Preferences for three care-related domains were recorded: personal activities of daily living (PADLs), instrumental activities of daily living (IADLs), and socioemotional tasks. Outcomes included dyadic relationship strain, quality of life, and mood for both the caregiver and person with dementia. Results indicated that perceived incongruence of care preferences was a better predictor of negative psychosocial outcomes than actual incongruence. Actual incongruence for socioemotional care preferences was a predictor of greater relationship strain and worse mood for the person with dementia, while perceived incongruence for socioemotional care preferences was related to lower quality of life and worse mood for the caregiver. Unexpectedly, perceived incongruence for PADLs predicted higher quality of life and better mood for the caregiver. Findings have implications for communication between care partners, especially regarding socioemotional care preferences. These socioemotional preferences, which might be overlooked in the creation of a care plan, may influence the person with dementia’s well-being.

Meeting the unique and changing needs of individuals living with Alzheimer's disease and their family caregivers can be very challenging given the dynamic and often unpredictable nature of the disease. Effective programs are available to help families manage the challenges they will face.This article first describes the educational, information, and support needs of individuals living dementia and their family caregivers across all stages of Alzheimer's. Next, we describe the variety of services and program models targeted to the needs of individuals living with Alzheimer's disease or other types of dementia and their families.These programs can help ensure that person- and family-centered care is maintained from time of first symptoms through end-of-life.We end with our recommendations for maintaining person- and family-centered care through the provision of targeted information, education, and support to individuals and their families.

Objectives This report will elucidate the psychometric properties of the Cultural Justifications for Caregiving Scale (CJCS) and evaluate the differences in cultural values and demographic variables among a group of African American and White caregivers. The CJCS measures the cultural reasons for and expectations about providing care to an older relative. Methods CJCS data were collected from 202 adults caring for an older relative with memory loss. The factor structure of the CJCS was analyzed for reliability and its correlation with other measures pertaining to the caregiving experience. Results Exploratory factor analyses suggested two underlying factors relating to Duty and Reciprocity with high levels of reliability. The two factors showed different correlational patterns with other measures associated with the caregiving experience (CG demographics and well-being). Discussion Findings provide further evidence that the CJCS is a reliable measure for use with African American and White caregivers. Moreover, cultural motivations to provide care may differ for ethnically diverse CGs based on religious backgrounds and beliefs about family expectations surrounding the care of loved ones. The application of the CJCS is also discussed.

There has been growing interest in providing tailored or adaptive interventions to family caregivers as a way of addressing their heterogeneity of risk factors and other needs. A particular challenge in an adaptive study is to implement the individualized intervention protocol as planned (program fidelity). This study explores the fidelity of implementation of an adaptive intervention for family caregivers of persons with dementia and its acceptability to caregivers.Using a sample of 35 caregivers of person with dementia who participated in a program development study, we gathered information on acceptability and fidelity of the program from multiple sources, including caregiver and counselor reports and ratings of recordings of sessions.Findings show that caregivers have high levels of acceptance of the intervention plan and high ratings of satisfaction with the program. Ratings of satisfaction and counselor competence were not associated with the amount of treatment provided. Ratings by counselors and independent raters found good fidelity for two of the three program domains.The results demonstrate that trained counselors can follow a tailored intervention plan and that caregivers' experience of the program did not differ depending on how much intervention was provided. A next step is to determine how an adaptive protocol would affect caregiver outcomes.

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.

Background and objectives Meeting the unique and changing needs of individuals living with Alzheimer's disease and their family caregivers can be very challenging given the dynamic and often unpredictable nature of the disease. Effective programs are available to help families manage the challenges they will face. Research design and methods This article first describes the educational, information, and support needs of individuals living dementia and their family caregivers across all stages of Alzheimer's. Next, we describe the variety of services and program models targeted to the needs of individuals living with Alzheimer's disease or other types of dementia and their families. Results These programs can help ensure that person- and family-centered care is maintained from time of first symptoms through end-of-life. Discussion and implications We end with our recommendations for maintaining person- and family-centered care through the provision of targeted information, education, and support to individuals and their families.

An increasing number of family caregivers are seeking services and support due in large part to the dramatic increase in the number of older adults obtaining dementia diagnoses. This paper describes barriers and challenges experienced by our research team in recruiting early-stage dementia caregiving dyads into research studies. Effective recruitment and screening strategies to address these barriers are also discussed. Recruitment and enrollment success depends on these strategies as well as having well-trained recruitment staff who are knowledgeable about the study and have experience working with older adults, and more specifically, persons with dementia.

Purpose To gain a better understanding of how actual and perceived incongruence of care preferences affects the psychosocial well-being of persons with dementia and their family caregiver. Design and methods In-depth interviews were conducted with 128 dyads each consisting of a person with dementia and a family caregiver. Baseline data from an intervention study were used to examine the relationship between the caregiver's care-related preferences, the person with dementia's care-related preferences, and the caregiver's perception of the person with dementia's preferences. Preferences for three care-related domains were recorded: personal activities of daily living (PADLs), instrumental activities of daily living (IADLs), and socioemotional issues. Primary outcomes included dyadic relationship strain, quality of life, and mood for both the caregiver and person with dementia. Results Perceived incongruence of care preferences was a better predictor of negative psychosocial outcomes than actual incongruence. Actual incongruence for socioemotional care preferences was a predictor of greater relationship strain and worse mood for the person with dementia, whereas perceived incongruence for socioemotional care preferences was related to lower quality of life and worse mood for the caregiver. Interestingly, perceived incongruence for PADLs predicted higher quality of life and better mood for the caregiver. Implications Findings have implications for communication between care partners, especially regarding socioemotional care preferences. Socioemotional preferences, which might be overlooked in the creation of a care plan, may influence the person with dementia's well-being.

Older adults prefer to engage in a variety of leisure and recreational activities. These activities vary in type depending on the older adult's level of physical and mental ability. There is little empirical evidence documenting the preferred activities of older adults with dementia. The present study examines the self-reported activity preferences of 216 persons with dementia and the relationship of these activities to demographic characteristics and well-being outcomes. Results demonstrate hypothesized demographic differences and reinforce the importance of engaging persons with dementia in activities that they find meaningful.

The following describes a conceptual model for dementia caregiving. The interdisciplinary model proposes that a caregiver’s confrontation with existential loss plays a determining role in the well-being of the dementia care dyad. The paper describes how existential threats can affect a caregiver’s appraisal of the care situation, and thus how a caregiver copes. Still further, it is speculated that caregiver coping (as manifested primarily through avoidance or acceptance of loss) will influence behavioral interaction within the caregiving dyad, where communication and decision making between caregiver and the person with dementia is predominantly inequitable (e.g., authoritarian) or equitable (e.g., negotiated). Lastly, it is proposed that the type of dyadic behavior is an antecedent to dyadic well-being. In terms of intervention, as the model is centered on the intrapsychic threat posed by loss, particular emphasis is on both individual and social factors that negatively influence a caregiver’s ability to integrate the emotional costs related to dementia and its care.

Purpose of the Study: We explore discrepancies in perceptions of values and care preferences between individuals with dementia (IWDs) and their family caregivers. Design and Methods: We interviewed 266 dyads consisting of an individual with mild to moderate dementia and his or her family caregiver to determine IWDs’ beliefs for 5 values related to care (autonomy, burden, control, family, and safety). We used multilevel modeling to investigate if there are dyadic level discrepancies in beliefs and what factors are associated with such discrepancies. Results: Caregivers consistently underestimated the IWD's values for all five values. Discrepancies were associated primarily with caregivers’ beliefs about the IWD's involvement in decision making. Race was also associated with the discrepancies for control and safety, whereas cognitive functioning of the IWD was associated with the discrepancy for burden. Implications: Many caregivers do not have an accurate depiction of the IWD's values, yet, caregivers will become the surrogate decision makers for IWDs as dementia progresses. These findings indicate the need for assessments of values and preferences in care and to develop programs that assess values, consider the caregiver's beliefs about care, and improve communication within the dyad in the early stages of dementia.

Purpose: Individuals with dementia (IWDs) face particular challenges in managing and coping with their illness. The experience of dementia may be affected by the etiology, stage, and severity of symptoms, preexisting and related chronic conditions, and available informal and formal supportive services. Although several studies have examined particular features of IWD’s illness experience, few draw upon a conceptual model that outlines the global illness experience and the resulting stressors that commence with symptom onset, proliferate over time, and continue through the later stages of cognitive loss. Building on the work of Pearlin and colleagues (1990, Caregiving and the stress process: An overview of concepts and their measures. The Gerontologist, 30, 583–594), this article proposes a stress process model (SPM) for IWDs that conceptualizes and examines the illness experience of IWDs. Implications: The proposed SPM for IWDs serves as a guide to (a) consider and understand the short- and long-term complexities of the illness experience for IWDs, (b) investigate specific hypotheses by outlining key stressors in the illness experience and by positing relationships among stressors and outcomes, and (c) help inform the development of interventions to prevent or reduce the negative stressors and enhance the positive experiences of living with a dementing illness.

Although a growing number of investigations examine the lived experience of individuals with dementia (IWDs), few draw upon a conceptual model to explore inter-relationships among background characteristics, stressors, and outcomes (Menne, 2006). This study is guided by a conceptual model that draws upon the broader stress literature to examine predictors of IWD quality of life. Relying primarily on IWD self-reported data (n = 211), multivariate ordinary least squares regression analysis was used to determine the predictors of IWDs’ quality of life. Results indicate that IWDs who report poorer quality of life are more likely to be African-American, have a non-spousal caregiver, have more depressive symptoms, be less involved in daily decision-making, and have more negative strain with their caregiver. These findings are discussed in the context of current and practical interventions that address the strengths and needs of IWDs and their family caregivers.

Purpose: This study examines the psychometric properties of the Values and Preferences Scale (VPS) and compares the responses of 267 persons with cognitive impairment with the responses of their family caregivers to determine the accuracy of the caregivers' perceptions of their relatives' care values and preferences. Design and Methods: Exploratory factor analyses examined whether a consistent factor structure could be found for the VPS for both persons with cognitive impairment (PWCIs) and family caregivers. Analyses also determined whether family caregivers were accurate in their perceptions of their relative's care preferences. Results: Results indicated that the VPS was best divided into four factors or subscales (i.e., Burden, Safety/Quality of Care, Autonomy, and Social Interactions) all of which were found to have adequate internal consistency for persons with cognitive impairment and family caregivers. Caregivers generally had a good sense of what preferences were most important to their relatives (i.e., issues of safety and quality of care), but often underestimated the importance of certain values and preferences. Implications: These findings support previous work suggesting that practitioners consider incorporating an assessment of values and preferences for everyday care when working with persons with cognitive impairment and their family caregivers. Further application and testing of the Values and Preferences Scale should prove useful to practitioners who assist cognitively impaired persons and their caregivers with health care decision making and planning.

This analysis examines the ability of persons with mild to moderate dementia (MMSE scores 13—30 and/or a dementia diagnosis) to provide consistent and accurate information. Data come from interviews with 213 persons with dementia (PWDs) and their family caregivers (CG). Consistency was assessed by determining agreement between responses provided by PWDs during two in-person interviews. Accuracy was assessed by determining agreement between PWD responses and CG responses. Overall, PWDs provided consistent and accurate responses to fact-based questions and were consistent in their responses to state-dependent items. Less impaired respondents were more consistent in their responses to fact-based items. Among respondents with more severe impairment, there were no significant differences in consistency by question type. This work responds to the need to gain a better understanding of the opinions and experiences of dementia and offers further evidence that many PWDs can provide consistent and accurate information. Findings support increased involvement of individuals with dementia in research and care planning.

Purpose This study evaluated the psychometric properties of the Dyadic Relationship Scale (DRS), which measures negative and positive dyadic interactions from the perspective of both the patient and the family caregiver. An important aspect of evaluating the DRS was that it be statistically sound and meaningful for both members of the dyad. Design and methods The study used a cross-sectional design. Survey packages were mailed to home health care patients and their family caregivers. The unit of analysis was the dyad, and exploratory and confirmatory factor analyses were conducted. We examined the reliability, discriminant, and concurrent validities of the instrument. Results The data supported a two-factor DRS that included negative dyadic strain (patient alpha =.84; caregiver alpha =.89) and positive dyadic interaction (patient alpha =.86; caregiver alpha =.85). The analysis supported the DRS's construct, discriminant, and concurrent validity, as well as its reliability for both patients and family caregivers. Implications Using the DRS to measure the impact of family care on positive and negative interactions inclusive of patients and caregivers can assist in identifying areas of difficulty and guide interventions to improve outcomes for both members of the dyad.

Consumer-directed service options in home- and community- based care are increasingly available to adults with chronic conditions and cognitive impairments and to their family caregivers. Few studies, however, examine the experience of family caregivers who, when given a choice of providers of respite assistance (i.e., relief from the stress of providing constant care), prefer to hire family or friends rather than service providers. This study describes the in-home respite experience of family caregivers served by California's Caregiver Resource Centers "direct-pay" program who hire family or friends (n = 39) or service providers (n = 77) to provide in-home respite assistance. Findings revealed similarities between the two groups with few exceptions: caregivers who hired family or friends reported poorer physical health, were slightly more satisfied with the respite assistance, and received more hours of respite at a lower unit cost. These findings lend support to consumer-directed respite service options where family caregivers are given flexible alternatives that may act to remove barriers to respite service availability and use.

Purpose This study describes the development and psychometric properties of a 24-item scale to be used in both research and practice settings that assesses the everyday care values and preferences of individuals with cognitive impairment and the perceptions of family caregivers about their relative's values and preferences for care. Design and methods The Values and Preferences Scale was developed on the basis of previous measures used with cognitively intact samples with additional items generated by the authors in consultation with an advisory committee of practitioners, researchers, family caregivers, and persons with cognitive impairment. Individuals with mild to moderate cognitive impairment and their family caregivers (n = 111) were interviewed for the study. Results Results of a factor analysis determined that the Values and Preferences Scale can be divided into two domains or subscales for persons with cognitive impairment and their family caregivers (i.e., Environment-Social Network and Personal Autonomy). These domains were found to have good internal consistency for both the individuals and their caregivers (Cronbach's alphas ranged from.70 to.82). Evidence of their psychometric properties compared with measures of depression, quality of life, and involvement in decision making was also found. Implications These findings suggest that persons with cognitive impairment are able to express values and preferences about care they currently receive or will need in the future. Further application and testing of the Values and Preferences Scale should prove useful to practitioners who assist those with cognitive impairment and their caregivers with daily care decisions and the development of care plans.