Caregiver Dyads Research Articles

Effectiveness of motivational interviewing on anxiety, depression, sleep quality and quality of life in heart failure patients: secondary analysis of the MOTIVATE-HF randomized controlled trial

PurposeAnxiety, depression, poor sleep quality and lower quality of life (QOL) are associated with worse outcomes in heart failure (HF) patients. Motivational interview (MI) has been effective in different patient populations to promote self-care. However, its effect on anxiety, depression, sleep quality and QOL in HF patients is unknown. The aim of this study was to evaluate the effect of MI on anxiety, depression, sleep quality and QOL over 12 months from the intervention.MethodsThis was a planned, secondary outcome analysis of the MOTIVATE-HF study, a three-arm randomized controlled trial (1:1:1) evaluating the effect of MI in improving self-care in HF patients. In Arm 1, the patient received MI, while in Arm 2, the patient and the caregiver received MI. Arm 3, the control group, received standard treatment. Endpoints were evaluated with the Hospital Anxiety and Depression Scale (HADS), the Pittsburgh Sleep Quality Index (PSQI), the 12-Item Short-Form Health Survey (SF-12) and the Kansas City Cardiomyopathy Questionnaire (KCCQ) every three months for one year.ResultsWe enrolled and randomized 510 HF patient and caregiver dyads (155 dyads in Arm 1, 177 dyads in Arm 2, and 178 dyads in Arm 3). A total of 238 HF patients and 235 caregivers completed the 12-month trial. No significant changes were seen in anxiety, depression and sleep quality over time among the three study arms, but disease-specific QOL improved in the intervention groups, especially in Arm 2.ConclusionClinicians may want to include both patients and caregivers when providing MI interventions. Further research is needed to investigate the required intensity of MI to be effective on sleep quality, anxiety and depression (ClinicalTrials.gov Identifier: NCT02894502).

The global care network and its impact on sending and receiving countries: current knowledge and future directions

AbstractResearch concerning the effects of migrants on elder care in affluent receiving countries has been substantial, but we know little about the effects of migrant care on elder care in sending countries. There also is limited research on elder care in the context of the return migration of migrant care workers. This theoretical article explores the potential relevance of a social network perspective, which views individuals and countries as being interconnected even when they are miles apart. A multi-level framework that considers macro-, meso- and micro-level perspectives is introduced to better account for current migrant care arrangements. The macro-level perspective takes into account country-level characteristics including policies, geography and cultural preferences; the meso-level perspective takes into account the characteristics of the entire network, which may spread over different countries; and the micro-level perspective concerns the unique characteristics of the individuals who make up the network. This approach proposes that the effects of migrant home care go way beyond the care recipient–care-giver dyads or triads to incorporate many individuals and countries that are transnationally interconnected via the work of care. This article also aims to increase public and scientific awareness to the potential impact of migrant care and return migration on elder care in the sending countries by stressing a transnational social network perspective.

An Exploration of Reflective Conversations in Early Intervention Caregiver Coaching Sessions

This descriptive study included a systematic examination of provider and caregiver reflective conversations during caregiver coaching sessions focused on embedded intervention. Transcribed videos from 31 provider–caregiver dyads in two groups (Embedded Practices and Interventions with Caregivers [EPIC] vs. business-as-usual [BAU]) were used for data collection, resulting in a total of 93 transcripts across three different time points. Using methods of directed content analysis, a coding scheme describing various components of shared reflection was developed and used to code transcripts. Coding data were used to explore the rate per minute and relative frequency of types, topics, and spontaneity of reflection. Although there were no statistically significant differences in the frequency and rate of reflective versus nonreflective conversational turns, there were group differences in the reflective topics and specific types of reflective comments and questions posed by participants. Results from this study and others can help the field further define reflection as a coaching strategy and consider the potential utility of different reflective comment and question types to increase caregiver capacity to embed interventions in home routines. Further research is recommended to explicate further definitions and processes for reflection specific to caregiver coaching, including methods used to code reflective conversations and evaluate how reflection impacts caregivers’ intervention implementation.

Smarthealth technology study protocol to improve relationships between older adults with dementia and family caregivers.

The aim of this study is to develop a Smarthealth system of monitoring, modelling, and interactive recommendation solutions (for caregivers) for in-home dementia patient care that focuses on caregiver-patient relationships. This descriptive study employs a single-group, non-randomized trial to examine functionality, effectiveness, feasibility, and acceptability of the novel Smarthealth system. Thirty persons with Alzheimer's Disease or related dementia and their family caregivers (N=30 dyads) will receive and install Smarthealth technology in their home. There will be a 1-month observation phase for collecting baseline mood states and a 2-month implementation phase when caregivers will receive stress management techniques for each detected, negative mood state. Caregivers will report technique implementation and usefulness, sent via Ecological Momentary Assessment system to the study-provided smartphone. Caregivers will provide daily, self-reported mood and health ratings. Instruments measuring caregiver assessment of disruptive behaviours and their effect on caregivers; caregiver depressive symptoms, anxiety and stress; caregiver strain; and family functioning will be completed at baseline and 3months. The study received funding in 2018 and ethics board approval in 2019. This study will develop and test novel in-home technology to improve family caregiving relationships. Results from this study will help develop and improve the Smarthealth recommendation system and determine its usefulness, feasibility, and acceptability for persons with dementia and their family caregiver. The Smarthealth technology discussed will provide in-home stress reduction resources at a time when older adults may be experiencing increasingly high rates of isolation and anxiety and caregiver dyads may be experiencing high levels of relationship strain. This study was registered with Clinical Trials.gov (Identifier NCT04536701).

Assessment of Anxiety, Depression and Resilience in Food-Allergic Adolescents and Primary Caregivers During the COVID-19 Pandemic

Food allergy has significant psychosocial impacts, which may be intensified during times of stress. We evaluated mental health and resilience in food allergic adolescent- caregiver dyads during the COVID-19 pandemic.

Coaching While Waiting for Autism Spectrum Disorder Assessment: Protocol of a Pilot Feasibility Study for a Randomized Controlled Trial on Occupational Performance Coaching and Service Navigation Support.

BackgroundIn Australia, the average time between a first concern of autism spectrum disorder (ASD) and diagnosis is over 2 years. After referral for assessment, families often wait 6-12 months before their appointment. This can be a time of uncertainty and stress for families. For some families, other forms of assistance are not accessible and thus timely intervention opportunities are missed. There is little evidence about how to provide the best support for children or caregivers while on assessment waiting lists.ObjectiveThe aim of this study is to determine whether use of a coaching intervention called Occupational Performance Coaching (OPC) combined with service navigation support is feasible for families waiting for ASD assessment, as a crucial first step in planning a randomized controlled trial.MethodsA pilot and feasibility study will be conducted using recommended constructs and associated measures, which will be reported using CONSORT (Consolidated Standards or Reporting Trials) guidance. Participants will be child and caregiver dyads or triads, recruited within 4 months of their child (aged 1-7 years) being referred to one of two services for an ASD assessment in Victoria, Australia. A blinded randomization procedure will be used to allocate participants to one of three trial arms: (1) coaching and support intervention delivered face to face, (2) coaching and support intervention via videoconference, and (3) usual care. Descriptive statistics will be used to describe the sample characteristics of parents and children, inclusive of service access at baseline and follow up. Recruitment rates will be reported, and retention rates will be evaluated against a predicted rate of 70%-80% in each intervention arm. Goal attainment, using the Canadian Occupational Performance Measure, will indicate preliminary evidence for efficacy within the intervention arms, with an increase of 2 or more points on a 10-point performance and satisfaction scale considered clinically significant.ResultsThe study was approved by The Royal Children’s Hospital Research Ethics and Governance Department in September 2018. As of October 2020, 16 families have been recruited to the study. Data analysis is ongoing and results are expected to be published in 2021.ConclusionsStudy findings will support planning for a future randomized controlled trial to assess the efficacy of OPC and service navigation support for caregivers of children awaiting ASD assessment.Trial RegistrationAustralian New Zealand Clinical Trials Registry ACTRN12620000164998; www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=378793&isReview=trueInternational Registered Report Identifier (IRRID)DERR1-10.2196/20011

Sensor-Based Electronic Monitoring for Asthma: A Randomized Controlled Trial.

Although sensor-based monitoring of daily inhaled corticosteroids (ICSs) and short-acting β-agonist medications may improve asthma outcomes, the effectiveness of these interventions in diverse pediatric populations remains unclear. Caregiver and child dyads were randomly assigned to receive inhaler sensors that allowed for caregiver and clinician electronic monitoring of medications. End points included Asthma Control Test scores (≥19 indicated asthma control) and asthma health care use. Caregiver quality of life (QoL) and child ICS adherence were also assessed. Multilevel models were used to estimate adjusted changes from baseline. Dyads were assigned to the control (n = 127) or intervention (n = 125) arms. At the end line, the mean Asthma Control Test score increased from 19.1 (SE = 0.3) to 21.8 (SE = 0.4) among the intervention and from 19.4 (SE = 0.3) to 19.9 (SE = 0.4) among the control (Δintervention-control = 2.2; SE = 0.6; P < .01). Adjusted rates of emergency department visits and hospitalizations among the intervention were significantly greater (incidence rate ratioemergency department = 2.2; SE = 0.5; P < .01; incidence rate ratiohospital = 3.4; SE = 1.4; P < .01) at endline than the control. Caregiver QoL was greater among the intervention at the endline (Δintervention-control = 0.3; SE = 0.2; P = .1) than the control. Findings suggest that sensor-based inhaler monitoring with clinical feedback may improve asthma control and caregiver QoL within diverse populations. Higher health care use was observed among the intervention participants relative to the control, indicating further refinement is warranted.

Videoconferenced Yoga Interventions for Cancer Patients and their Caregivers during the COVID-19 Pandemic: A Report from a Clinician's Perspective.

Background:The acceptability of videoconferencing delivery of yoga interventions in the advanced cancer setting is relatively unexplored. The current report summarizes the challenges and solutions of the transition from an in-person (ie, face-to-face) to a videoconference intervention delivery approach in response to the Coronavirus Disease pandemic.Method:Participants included patient-family caregiver dyads who were enrolled in ongoing yoga trials and 2 certified yoga therapists who delivered the yoga sessions. We summarized their experiences using recordings of the yoga sessions and interventionists’ progress notes.Results:Out of 7 dyads participating in the parent trial, 1 declined the videoconferenced sessions. Participants were between the ages of 55 and 76 and mostly non-Hispanic White (83%). Patients were mainly male (83%), all had stage III or IV cancer and were undergoing radiotherapy. Caregivers were all female. Despite challenges in the areas of technology, location, and setting, instruction and personal connection, the overall acceptability was high among patients, caregivers, and instructors. Through this transition process, solutions to these challenges were found, which are described here.Conclusion:Although in-person interventions are favored by both the study participants and the interventionists, videoconference sessions were deemed acceptable. All participants had the benefit of a previous in-person experience, which was helpful and perhaps necessary for older and advanced cancer patients requiring practice modifications. In a remote setting, the assistance of caregivers seems particularly beneficial to ensure practice safety.ClinicalTrials.gov:NCT03948100; NCT02481349

Development of the Experienced Communication in Dementia Questionnaire: A Qualitative Study.

Communication problems with their caregivers are common in people with dementia. Although interventions for improvement of communication are being developed, a tool to measure how participants experience their communication is lacking. The objective of this article is to describe the development of a questionnaire that measures the “experienced communication” of persons with dementia (ECD-P) as well as of their caregivers (ECD-C). Interviews were conducted with five person with dementia—caregiver dyads who had recently received a new communication intervention. Reflexive thematic analysis was performed on the transcripts using ATLAS.ti. Codes were created, categories and themes were identified, and items for the questionnaires were generated. Selection of items and response scales was done in collaboration with the same dyads. The final version was established after pilot testing with seven other dyads and discussion with five experts in the field of dementia care. Analysis of the transcripts resulted in 212 codes and 17 categories within four themes: caregiver competence, social communication, communication difficulties in daily life, and experienced emotions during conversations. The final version of the ECD-P consists of part 1 with 22 items and 4-point Likert scales, and part 2 with two items and 1 to 10 scales. In the final ECD-C (proxy version), part 1 and part 2 are similar to the ECD-P, while a part 3 was added to assess caregivers’ own perspective and emotions (five items). Based on the experiences of people with dementia and their caregivers, we constructed a face-valid questionnaire. This justifies future research to test its clinimetric characteristics.

Alcohol-Specific Communication and Emerging Adult Offspring's Perceived Parental Approval and Drinking in the Context of Parent Alcohol Expectancies.

There are mixed findings in the literature regarding the association between parental alcohol communication and offspring alcohol use. To clarify this association, this study tested a prospective mediated moderation model in which the association between parental communication about the risks of alcohol use and emerging adult offspring drinking was mediated by offspring perceived parental approval of drinking. Parental alcohol expectancies and use were tested as moderators of the link between communication and perceived approval. The community sample of 378 emerging adult and caregiver dyads completed 3 annual assessments (first assessment mean age=19.13). The sample was 54% female and majority White/non-Hispanic (76%). Caregivers reported on their own alcohol expectancies and use, and emerging adult offspring reported on parental communication of alcohol risks, perceived parental approval of drinking, and their own alcohol use. Multilevel modeling was used to test hypotheses. Mediated moderation was largely supported. More frequent communication about the risks of drinking was prospectively associated with low levels of perceived parental approval of alcohol use, which in turn was associated with low levels of offspring drinking. This pathway depended on parental alcohol expectancies. Findings suggest that including mediators (e.g., perceived approval of drinking) helps to clarify the mixed literature on parental communication about alcohol and that parental attitudes about alcohol can impact the effectiveness with which parents convey the risk of alcohol to offspring.

Parents’ Cannabis-Related Attitudes and Emerging Adult Offspring Cannabis Use: Testing the Mediating Effect of Perceived Parental Approval

Background: Contrary to parental alcohol use and expectancies work, little is known about how parent’s cannabis use (CU) and expectancies influence offspring CU. This is a notable gap in the literature given increasing acceptability and use of cannabis, especially among emerging adults (EA). Moreover, limited work has tested mechanisms of transmission of risk from these parent factors. This study addresses these gaps by testing prospective associations of parental CU and expectancies with offspring CU and CU problems, and perceived parental approval of offspring CU as a potential mediator. Method: A community sample of 314 EA and caregiver dyads completed three annual assessments (mean age = 19.13). The sample was 54% female and majority White/non-Hispanic (76%). Caregivers reported on their cannabis expectancies and use, and EA reported on their CU, CU-related problems, and perceived parental approval of CU. Results: Longitudinal structural equation modeling supported a mediated pathway such that high parental positive cannabis expectancies were associated with perceived parental approval of CU, which in turn, predicted increases in EA CU and CU problems. Parental negative expectancies had a significant indirect effect but in the opposite direction. Indirect effects were found above and beyond parental CU, which was not associated with offspring CU. Conclusions: This is the first study to test prospective indirect effects of parental cannabis expectancies on offspring CU. Findings suggest parents’ attitudes, even in the absence of parental use, confer risk for offspring use by shaping perceived acceptance of CU, suggesting parental expectancies as targets for parent-based CU interventions.

Marital Quality and Mental Health Among Caregiving Dyads

We examined whether the associations between marital quality and mental health were equally strong among dyads in which one spouse was providing care to a spouse (n = 155), parent (n = 61), or another adult (n = 176). Using Wave 2 of the NSHAP and actor-partner interdependence (APIM) models, we found significant differences (p=.004) among groups. Marital quality was negatively associated with one’s own depressive symptoms (b=-1.29) for husbands in the spousal caregiver group, whereas marital quality was negatively associated with one’s own depressive symptoms for wives in both the parental (b=-1.27) and other adult (b=-1.96) caregiver groups. The only partner effect was the negative association between wives’ marital quality and husbands’ depressive symptoms (b=-2.59) among dyads in which one spouse was a parental caregiver. These results point to the importance of understanding the context of caregiving when examining the protective effect of spouses’ marital quality on mental health.

Does the Sharing of Resources Impact Health Among Married Couples? New Findings From Dyadic Models

As married couples aging together, their health behaviors and outcomes could be shaped by both one’s own and the spouse’s characteristics. Using dyadic datasets, speakers in this symposium explored the interdependence nature of marital relations by identifying the mechanisms of how shared resources or strains affect spouses’ physical and mental health outcomes among married couples. Wang, Kim, and Burr identified distinct types of personality configurations among older couples using the Health and Retirement Study, and examined how personality compatibilities could buffer negative effects of adverse life events on older couples’ mental health. Using data from the National Social Life, Health, and Aging Project, Proulx, Skoblow, and Han further investigated the associations between marital quality and mental health among caregiving dyads, with a special focus on a comparison of different caregiving groups (spouse, child, others). From a physical health perspective, Wilson and Novak presented the dynamic behind relationship quality, joint health behaviors, health problems, health satisfaction, and health similarity between spouses. Finally, Kim, Jang, Park, and Chiriboga focused on couple contexts for acculturation among older Korean immigrants in the U.S., and examined how each spousal acculturation level affects healthcare utilization and difficulties in health service use. Focusing on married couples, this symposium showcases the interplay of family experiences, health behaviors, and relational dynamics of both spouses in shaping their health, and highlights the benefits of dyadic approaches. Speakers and our discussant, Dr. Karen Lyons, will discuss implications for social program design and future research.

Evaluation of Intervention Acceptability in Community Studies With Individuals and Dyads Affected by Dementia

Multiple non-pharmacologic interventions for symptom management in community dwelling individuals with dementia have demonstrated effectiveness, but have had limited uptake in practice. Prior reviews have evaluated acceptability of interventions for caregivers, but none have evaluated interventions for care recipients with dementia and dyads. This review synthesized the evidence about intervention acceptability for dyads (individuals with dementia and informal caregivers) and individuals with dementia residing at home. Four databases were searched (PubMed, CINAHL, AgeLine, PsycINFO) using inclusion criteria of: intervention studies, community dwelling individuals with dementia or dyads of care recipients and informal caregivers, non-pharmacologic intervention, evaluation of intervention acceptability. Gray literature and non-English articles were excluded. 173 citations were screened by title and abstract, 38 were reviewed by full text, and 19 studies were included. 18 studies focused on dyads, and 13 different non-pharmacologic intervention types were evaluated across studies. Qualitative (n=3), quantitative (n=8) and mixed methods (n=8) were used to evaluate acceptability. Approaches and measures of acceptability included field notes, behavioral checklists, focus groups, semi-structured interviews, questionnaires, and completion rates of intervention sessions and outcome measures. Although participants’ benefit and satisfaction with the interventions were high across studies, variability in definitions of acceptability, the methods and measures used constrain the interpretation and generalizability of findings. Psychometric properties of quantitative questionnaires were not addressed even as the most basic level of face or content validity. To enhance the applicability of non-pharmacologic treatments for this population, future research should emphasize the evaluation of intervention acceptability, as well as effectiveness.

Association Between Caregivers’ and Care-Recipients’ Advance Care Planning: An Exploratory Study

Research on advance care planning (ACP) has highlighted major contributors to the completion of ACP documents. One of such contributors is knowledge about ACP, such as an advance directive or living will (LW). This study aims to 1) understand the initial exposure to ACP knowledge among informal caregivers’ of chronically or seriously ill older adults and to 2) explore an association between caregivers’ advance care planning and that of their care-recipients. Forty-four primary caregivers of cognitively impaired older adults were recruited at various community settings. A mixed-method design was used to qualitatively interview each participant face-to-face about his or her initial experience with ACP and to quantitatively ask if the participant completed a LW and if the care-recipient completed one as well. Qualitative content analysis of participant responses revealed that their initial experiences with ACP were mostly through their care-recipients, such as the care-recipient’s ACP in previous hospitalizations or legal consultations. Chi-square test for independence was conducted to explore whether there is an association between caregivers’ LW completion and that of care-recipients. The results show that there is a significant relationship between the two variables: χ2 (1, n = 44) = 8.84, p < .001, φ = .49. These findings suggest that secondary experiences with close one’s ACP may serve as facilitator to one’s ACP completion. Therefore, efforts to promote ACP should target a caregiver and care-recipient dyad so that caregivers as well as care-recipients may learn about and complete ACP documents.

I Don’t Want to See It End: A Faith Community Nurse Intervention for Older Adults and Caregivers

The Faith Community Nurse (FCN) provides population-based and other nonclinical services in community settings that are not commonly available to the older adult population. The purpose of the FCN Connections (FCNC) study was to test the impact of the FCNC intervention on the health and well-being of clients (C) age 60 and older with chronic diseases and caregiver (CG) dyads (CCGD) by embedding a FCN in a primary care practice (PCP). A mixed method design was used with two cohorts over 18 months (N = 13 CCGD). Experienced FCNs led the components of the intervention in the CCGD home, including client health assessment, education and support while identifying their caregiver’s perceived needs, providing education and spiritual/emotional support, linking to resources, and connecting the CCGD with the PCP. The CCGD completed measurements at baseline, 6 and 12 weeks. CG knowledge, preparedness, self-efficacy with caregiving activities, and spirituality were measured with statistically significant CG improvement for handling emergencies, making caregiving activities pleasant, and taking care of emotional needs of the client. Spirituality, self-esteem, function, depression, and healthy living domains were measured for clients. At 12 weeks, semi-structured interviews with the CCGD were conducted and transcribed. An experiential/phenomenological framework and Reflexive Thematic Analysis were used to analyze data which generated one overarching theme, ‘I don’t want to see it [study] end’ and key themes, Theme 1 [client]: ‘She was always there to help’ and Theme 2 [caregiver]: ‘It’s like you took the pressure off me for a while’ describing the CCGD’s FCNC experience.

Challenges of Recruiting Caregiver and Care Receiver Dyads for a Randomized Clinical Trial

The recruitment of participants for chronic disease clinical trial research is often challenging. Further complicating participant recruitment occurs when the intervention is dyadic (i.e., simultaneously includes both care receivers and caregivers or recruiting pairs of people). Despite the strong support in favor of dyadic interventions for certain chronic diseases (e.g., among cancer and stroke survivors and their caregivers), researchers have not systematically shared challenges and opportunities for dyadic recruitment. During the recruitment for a yoga and self-management education intervention for people with chronic pain and their caregivers, several steps were taken to recruit and screen potential participants for the study. In this presentation, we will provide an overview of common recruitment challenges for physical activity and chronic disease self-management studies as well as the actual challenges encountered and our procedures for overcoming these obstacles. We will present our consort figure with attention toward inclusion and exclusion criteria of both care receivers and caregivers. Additional discussion will include specific challenges encountered when recruiting and screening caregivers (i.e., after the care receiver has been screened). The need for innovative clinical trial research with caregivers and care recipient dyads is essential as new care practices continue to evolve and demands on health care utilization increase. Lessons learned from this study may prove useful for future researchers as they embark on developing and testing dyadic interventions among adults with chronic disease and their caregivers.

Systematic Review of Interventions for LatinX and American Indian Family Dyads Coping With Chronic Illness

The United States is experiencing growth in populations from culturally diverse backgrounds. Studies suggest that Latinx and American Indians experience chronic conditions such as cancer, heart disease, and diabetes in greater numbers than whites. Literature also suggests that Latinx and American Indian families play a significant role as informal caregivers for loved ones with chronic illness. However, little information is available about interventions to assist these patient-family caregiver dyads cope. The purpose of this systematic review is to synthesize published studies about psychosocial interventions developed or adapted for Latinx and American Indian care dyads in order to determine: (1) the benefits of these interventions; (2) their distinguishing features or adaptations, and; (3) recommendations for future intervention development. The protocol for this review was registered in advance with the International Prospective Register of Systematic Reviews (PROSPERO). We searched the databases CINAHL, PsycINFO, MEDLINE, and PubMeb using MeSH-derived keywords developed in consultation with a research librarian. Studies were included/excluded based upon pre-specified criteria. Three-hundred thirty-five records were identified, screened by the research team, and tracked according to PRISMA guidelines. After removing duplicates (n=9), studies that did not pertain to the conditions of interest (n=13), and studies that did not meet inclusion criteria (n=305), eight studies remained. Relevant information was abstracted from the final studies and synthesized by the research team. The majority of interventions for these populations are in cancer. Findings about benefits are largely inconclusive. Adaptations include a focus on cultural contexts, as well as culturally-based strengths, caregiving norms, and values.

Perspectives of Persons With Dementia, Family, and Healthcare Providers on an Advance Care Planning Decision Aid

Few evidence-based interventions to engage persons living with dementia in advance care planning (ACP) exist. We developed and explored the acceptability and appropriateness of an ACP decision aid for PLWD/family caregiver dyads living in the U.S. We conducted a mixed-methods study with 10 persons with dementia-caregiver dyads, and 4 healthcare providers. Content analysis and descriptive analysis were conducted. Major and subthemes included: (1) the role of caregivers during ACP discussion: clarifier, guide, and proxy; (2) decisional needs of persons with dementia for ACP: lack of knowledge and decisional conflict; and (3) perceptions of the decision aid: lack of clarity between advance directive types, a need to remove any questions that may be conceptually different, but appear similar to users, and need to include summary of decision-support needs. Findings provide implications for how healthcare providers can use a decision aid to facilitate ACP conversations with persons with dementia and caregivers.

The Experience of Working With a Faith Community Nurse Liaison of Care in a Primary Care Practice Among Older Adult Clients and Their Informal Caregiver.

Informal caregivers of older adults aging in place are at risk for adverse health and financial consequences. This descriptive qualitative study explored the experience of working with a faith community nurse (FCN) liaison of care in a Catholic health care system affiliated primary care practice among older adult clients and their informal caregiver. Semistructured face-to-face interviews were conducted with nine older adult client-informal caregiver dyads, three clients, and one caregiver (n = 22). Interviews were audio recorded, transcribed, and analyzed using Braun and Clarke's reflexive thematic analysis method. The analysis generated one overarching theme, I'm Sorry the Study and FCN Visits Are Coming to an End, and two key themes, The FCN Was Always There to Help Us (older adult clients) and The FCN Took the Pressure Off of Caregiving for Awhile (informal caregivers). Participants viewed the FCN as an instrumental member of their health care team and considered prayer and spiritual support offered by the FCN an essential element of care.