A post-diagnosis information and support programme for dyads-People living with dementia or mild cognitive impairment and family carers: A feasibility study.

AIM: The aim of the study was to establish the feasibility of delivering a structured post-diagnosis information and support program to dyads (persons living with dementia or mild cognitive impairment and family carers) in two primary care settings. DESIGN: A two-phase explanatory mixed-method approach guided by the Bowen Feasibility Framework focused on acceptability, implementation, adaptation, integration and efficacy of a five-part programme. In phase 1, the quantitative impact of the programme on the dyadic programme recipients' self-efficacy, quality of life, dyadic relationship and volume of care was measured. In phase 2, inductive content analysis focused on nurse and dyad participant experiences of the programme. Quantitative and qualitative data were reviewed to conclude each element of feasibility. METHODS: Four registered nurses working within the participating sites were recruited, trained as programme facilitators and supported to deliver the programme. Eligible dyads attending the respective primary health clinics were invited to participate in the programme and complete surveys at three time points: recruitment, post-programme and 3-month follow-up. Post-programme semi-structured interviews were conducted with dyads and programme facilitators. RESULTS: Twenty-nine dyads completed the program; the majority were spousal dyads. The programme proved acceptable to the dyads with high retention and completion rates. Implementation and integration of the programme into usual practice were attributed to the motivation and capacity of the nurses as programme facilitators. Regarding programme efficacy, most dyads reported they were better prepared for the future and shared the plans they developed during the programme with family members. CONCLUSION: Implementing a structured information and support programme is feasible, but sustainability requires further adaptation or increased staff resources to maintain programme fidelity. Future research should consider selecting efficacy measures sensitive to the unique needs of people living with dementia and increasing follow-up time to 6 months. IMPACT: This study established the feasibility of registered nurses delivering a post-diagnosis information and support programme for people living with early-stage dementia or mild cognitive impairment and their informal carers in primary care settings. The motivation and capacity of nurses working as programme facilitators ensured the integration of the programme into usual work, but this was not considered sustainable over time. Family carer dyads reported tangible outcomes and gained confidence in sharing their diagnosis with family and friends and asking for assistance. Findings from this study can be used to provide direction for a clinical trial investigating the effectiveness of the structured information and support programme in the primary care setting. REPORTING METHOD: The authors have adhered to the EQUATOR STROBE Statement. PATIENT OR PUBLIC CONTRIBUTION: A public hospital memory clinic and general medical practice participated in project design, study protocol development and supported implementation.

Taking Care of Us© (TCU) study protocol: feasibility and acceptability of a dyadic intervention for couples living with heart failure.

BACKGROUND: There are more than 1 million hospital admissions and 3 million emergency visits for heart failure in the USA 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 change in outcomes 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 60 couples (30 per arm). TCU© couples will receive seven sessions over 2 months via Zoom; SUPPORT© couples will receive three sessions over 2 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, retention, completion, and satisfaction metrics. Preliminary exploration of change in outcomes of TCU© on dyadic health, dyadic appraisal, and collaborative management will also be conducted. 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 any needed refinements of the program and decision to move to a main trial. TRIAL REGISTRATION: ClinicalTrials.gov (NCT04737759) registered on 27 January 2021.

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.

Factors influencing quality of life in African-American dementia dyads.

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.

Challenges to and strategies for recruiting chronic care dyads into intervention research.

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.

Patterns of Dyadic Appraisal of Decision-Making Involvement of African American Persons Living With Dementia.

BACKGROUND AND OBJECTIVES: Greater everyday decision-making involvement by persons living with dementia (PLWD) and congruent appraisal between PLWDs and their caregivers have been associated with a better quality of life (QOL) for both members of the dyad. However, no study has examined the association between the appraisals of everyday decision-making involvement of PLWDs and their QOL among African Americans. RESEARCH DESIGN AND METHODS: A secondary analysis of cross-sectional data from 62 African American dementia dyads was conducted. Multilevel and latent class mixture modeling was used to characterize dyadic appraisal of the decision-making involvement of African American PLWDs and identify distinct patterns thereof. RESULTS: Three distinct patterns were observed. "Incongruent, PLWD Low Involvement" labeled 19.4% of the sample, 53.2% were labeled "Incongruent, PLWD Moderate Involvement," and 27.4% were labeled "Congruent, PLWD High Involvement." The Congruent, PLWD High Involvement pattern consisted of PLWDs who were significantly younger and had significantly less cognitive impairment than PLWDs in the other patterns. In the Incongruent, PLWD Moderate Involvement pattern, PLWDs had significantly better QOL than PLWDs in the Incongruent, PLWD Low Involvement pattern, but QOL did not significantly differ from PLWDs in the Congruent, PLWD High Involvement pattern. DISCUSSION AND IMPLICATIONS: There is a need to tailor strategies to optimize QOL in African American dementia dyads. While increasing everyday decision-making involvement for PLWDs in the Incongruent, PLWD Low Involvement pattern is an important goal, other strategies may be needed to improve the QOL of PLWDs in the remaining patterns.

A dyadic perspective on assessment in Alzheimer's dementia: Supporting both care partners across the disease continuum.

Written from a dyadic strength-based perspective, this article first provides a brief overview of the Education, Information, and Support section of the 2018 Alzheimer's Disease Dementia Care Practice Recommendations.1 Subsequent sections present a comprehensive overview of available valid and reliable psychosocial measures that assess a selection of important domains for dementia care planning that can be used by families from early stage until end-of-life. Measures selected for the purposes of this article will focus on concepts that are strength-based and most relevant to care dyads as they navigate the difficult disease trajectory: readiness, knowledge, coping, dyadic relationship, care values and preferences. We will also highlight measures that have traditionally targeted the family care partner but can potentially be considered for use with the care partner with dementia, with adjustments, beyond the early stages. Part of this discussion will include various strategies for including persons with dementia in all aspects of their own care using a strength-based perspective, potentially enabling them to answer questions more reliably across disease stages. Last, gaps in existing measures will be identified to provide options to better assess areas of need most meaningful to families, and in ways that positively contribute to the successful aging of those living with dementia and their care partners.

The ResidentialCare Transition Module: a single-blinded randomized controlled evaluation of a telehealth support intervention for family caregivers of persons with dementia living in residential long-term care.

BACKGROUND: Families do not fully disengage from care responsibilities following relatives' admissions to residential long-term (RLTC) care settings such as nursing homes. Caregiver stress, depression, or other key outcomes remain stable or sometimes increase following a relative's RLTC entry. Some interventions have attempted to increase family involvement after institutionalization, but few rigorous studies have demonstrated whether these interventions are effective in helping families navigate the potential emotional and psychological upheaval presented by relatives' transitions to RLTC environments. The Residential Care Transition Module (RCTM) provides six formal sessions of consultation (one-to-one and family sessions) over a 4-month period to family caregivers who have admitted a relative to a RLTC setting. METHODS: In this embedded mixed methods randomized controlled evaluation, family members who have admitted a cognitively impaired relative to a RLTC setting are randomly assigned to the RCTM (n = 120) or a usual care control condition (n = 120). Primary outcomes include reductions in family members' primary subjective stress and negative mental health outcomes; secondary role strains; and residential care stress. The mixed methods design will allow for an analysis of intervention action mechanisms by "embedding" qualitative components (up to 30 semi-structured interviews) at the conclusion of the 12-month evaluation. DISCUSSION: This evaluation will fill an important clinical and research gap by evaluating a psychosocial intervention designed for families following RLTC admission that determines whether and how the RCTM can help families better navigate the emotional and psychological challenges of residential care transitions. TRIAL REGISTRATION: ClinicalTrials.gov (NCT02915939, prospectively registered).

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.

The SHARE program for dementia: Implementation of an early-stage dyadic care-planning intervention.

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.

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.

Meeting the Informational, Educational, and Psychosocial Support Needs of Persons Living With Dementia and Their Family Caregivers.

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.

Does it Matter if We Disagree? The Impact of Incongruent Care Preferences on Persons with Dementia and Their Care Partners.

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.

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.

Recruitment challenges and strategies: Lessons learned from an early-stage dyadic intervention (innovative practice).

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.

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.

Does an intervention designed to improve self-management, social support and awareness of palliative-care address needs of persons with heart failure, family caregivers and clinicians?

AIMS AND OBJECTIVES: To conduct a formative evaluation of the iPad-Enhanced Shared Care Intervention for Partners (iSCIP) among persons with heart failure (HF), family caregivers and clinicians. Together, persons with HF and family caregivers are referred to as partners. BACKGROUND: There is growing awareness of the caregiver's contributions to HF self-management, social support and reciprocal benefits of interventions that involve both partners. The iSCIP engages both partners in a six-session psychosocial intervention to address three preventable causes of poor outcomes in a HF population: poor self-management skills, inadequate social support and underutilisation of palliative care. An iPad app is used to organise the intervention. The goals of the iSCIP are to engage partners in HF self-management, communication about the HF patient's care values and preferences, and future planning. DESIGN: A qualitative focus group design was used. METHODS: Seven clinicians and eight partners participated in focus groups to explore their experiences, needs and reaction to the iSCIP content and technologies employed. Open-ended questions and closed-ended surveys were used to collect data. Deductive content analysis was used to analyse the qualitative data. NVivo software was used for qualitative data analysis. Bayesian statistical models were used to analyse numeric data. RESULTS: The iSCIP met partners' and clinicians' needs to improve self-management, communicate about care values and preferences and plan for the future. Quantitative analysis of numeric data supported our qualitative findings, in that both groups rated the intervention components useful to very useful. IMPLICATIONS FOR PRACTICE: These findings add to the growing evidence of the feasibility and acceptability of programs that address care values and preferences, and care planning. The iSCIP can be used as a guide for developing interventions and software applications, which involve both partners in care and palliative-care discussions.

Quality of Life for Dementia Caregiving Dyads: Effects of Incongruent Perceptions of Everyday Care and Values.

Purpose of the Study: This dyadic study investigated incongruence in care recipients' (CRs') and caregivers' (CGs') perceptions of (a) CRs' involvement in decision making and (b) how much CRs value social relations as predictors of subjective quality of life (QOL) of CRs with mild-to-moderate dementia and their primary family CGs. Design and Methods: A secondary analysis of cross-sectional, dyadic data from in-person interviews with 205 CRs with mild-to-moderate dementia and their primary family CGs Incongruence was operationalized in two ways: absolute difference and direction of difference. Paired t tests and multilevel modeling were used to analyze differences. Results: CGs reported CRs were significantly less involved in decision making and valued social relations significantly less than CRs. Greater incongruence on CRs' values significantly predicted lower QOL of CG and CR. When CGs reported that CRs valued social relationships less than the CR himself/herself reported, CGs' and CRs' QOL was significantly lower compared with QOL for dyads where there was no incongruence on CRs' values. Incongruent perceptions of CRs' involvement in decisions were not a significant predictor of QOL. Implications: This study provides evidence for the importance of assessing both CRs' and CGs' QOL, as well as incongruence in their perceptions in domains that may affect both of their QOL.