“Care to Plan”: Delivering Personalized Recommendations to Support Caregivers of People Living with Dementia (Preprint)

BACKGROUND Estimates suggest that 6.2 million Americans aged 65 and older are living with Alzheimer’s dementia in 2021 and by 2060, that number could more than double to 13.8 million. As a result, public health officials anticipate a greater need for caregivers for persons with Alzheimer’s disease or a related dementia (ADRD), as well as support resources for both people living with dementia (PLWD) and their caregivers. Despite the growing need for dementia caregiver support services, there is a lack of consensus regarding how to tailor these services to best meet the heterogeneous needs of individual caregivers. To fill this gap, “Care To Plan” (CtP), an online tool for caregivers of PLWD, was developed to provide tailored support recommendations to dementia caregivers. OBJECTIVE The objective of this study was to formally explore the feasibility, acceptability and utility of CtP for 20 family members of PLWD within a health system over a one month time period using a mixed methods parallel convergent design. METHODS A moderately sized health system in the mid-Atlantic region was selected as the site for CtP implementation where 20 caregivers who were family members of PLWD were enrolled. The web-based CtP tool was used directly by caregivers and facilitated by a healthcare professional (i.e., a “senior care navigator”/SCN). Caregivers were given a 21-item review checklist to assess barriers and facilitators associated with reviewing CtP with a SCN. Following the 21-item review checklist, semi-structured telephone interviews, which included 18 open-ended questions, focused on the facilitators and barriers to CtP implementation and recommendations for future implementation. RESULTS Quantitative results suggested that 76.5% and 85.7% of caregivers agreed or strongly agreed that after using the tool they were able to find a service that would meet their needs and those of their care recipient, respectively. Qualitative analysis identified four themes regarding facilitators and barriers to implementation: 1) caregiver factors, 2) SCN factors, 3) CtP tool system factors, and 4) recommendations and resources factors. CONCLUSIONS Care to Plan was not only found to be feasible, but a valuable tool for caregivers seeking resources for themselves as well as their PLWD. Longer-term evaluation findings aim to generate results as to how CtP can be integrated into care plans for caregivers and how SCNs can provide additional support for caregivers for PLWD over an extended period of time.

Psychometric Properties of Instruments Measuring Dyadic Communication and Environment in Dementia Care: A Systematic Review

Background and Objectives A valid and reliable assessment of dementia dyadic communication and environment is essential to understand and facilitate social interaction and quality care. This review described the characteristics and evaluated psychometric properties of instruments that assess dyadic communication and environment between persons living with dementia and their caregivers. Research Design and Methods A systematic review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Guideline. Literature published until June 30 th, 2021, was searched. Ten psychometric properties and the ratio of sample size to the number of items were evaluated using the Psychometric Assessment for Self-report and Observational Tool. Results A total of 3,708 scholarly records was identified, and 24 eligible instruments from 48 scholarly records were evaluated. Twenty-two instruments assessed dyadic communication, and two assessed both dyadic communication and environment. Eighteen instruments were developed to assess task-related communication and fifteen for paid (professional) caregivers. All instruments were scored as low psychometric quality (score range = 0 - 7). Behavioral Observation Scoring System was scored the highest (total score = 7), followed by Dyadic Dementia Coding System, Grid for observation of physical and verbal behaviors of caregiver and resident, and Trouble-Indicating Behaviors and Repair (total score = 6, respectively). These instruments had low psychometric evidence for internal consistency, content validity, and structural validity. Discussion and Implications Existing instruments are in the early stages of development and validation in dementia population. Further testing is needed in diverse communication types in paid and unpaid dementia caregiver populations.

Respite Service Use among Dementia and Nondementia Caregivers: Findings from the Caregiving in the U.S. 2015 Survey

Caring for persons with dementia places a significant physical, emotional, and financial burden on caregivers. Although dementia caregivers may be exposed to more challenging caregiving environment than caregivers of those with other chronic conditions, little is known about how specific factors related to respite service use differ between dementia and nondementia caregivers. Thus, this study first examined factors related to respite service use among caregivers and further tested the moderating effect of dementia caregiver status in these relationships using nationally representative U.S. data. Logistic regression analyses were conducted among 1,203 caregivers (276 dementia and 927 nondementia caregivers) from the national Caregiving in the U.S. 2015 data. Caregivers’ race and ethnicity as a predisposing factor, caregivers’ self-rated health as an enabling factor, and care recipients’ living arrangement and functional limitations as need factors were significantly related to respite service use among caregivers. Moreover, dementia caregiver status moderated the association between enabling factors (i.e., household income, work status, and self-rated health) and respite service use. Our findings imply that dementia caregivers may be more in need of respite service use than nondementia caregivers when they have limited enabling factors (e.g., lower household income, nonworking status, poorer health). Policy and practice efforts that specifically support enabling factors are suggested to promote more respite service use among dementia caregivers.

Aspects of Grit Among Dementia Family Caregivers

Dementia family caregivers often show deep devotion and a strong sense of purpose and duty toward their relatives needing care. The concept of grit, which includes aspects of commitment, purpose, perseverance, and resilience, is a novel theoretical approach to expanding understanding of dementia family caregiver strengths amidst the challenges they face. Multiple psychosocial and contextual factors are likely to interact with and influence grit among these caregivers. This symposium addresses commitment to the family dementia caregiver role, willingness to embrace the stressful work of caregiving, and perseverance in finding ways to sustain caregiving roles under typical and adverse circumstances. Blieszner focuses on associations between grit and stressors and strains that challenge caregiver well-being and jeopardize continued caregiving. Wilks considers the impact of spiritual support on sustaining resilience among Caucasian and African American dementia caregivers. McCann explores caregivers’ responses to changes in informal support and social interactions available to assist with home care tasks over the course of the COVID-19 pandemic. Albers examines the strengths and resources caregivers draw upon to manage the challenges of caring for and supporting a relative in long-term residential care during the pandemic. Collectively, these presentations provide new insights into the range of influences on aspects of grit and circumstances in which grit sustains caregiving. Discussant Margrett considers the value of the concept of grit for furthering understanding of caregivers’ abilities to manage typical and unique challenges in their caregiver roles and offers suggestions for future research and interventions to enhance grit among dementia family caregivers.

Virtual CARE for Caregivers of PWD: Adapting to the New Normal

Caregivers of persons with dementia (PWD) often experience increases in depression, anxiety, and burden as the disease progresses. In fact, as the PWD’s neuropsychiatric symptoms increase and independence in ADLS decrease, caregivers psychological and physical health outcomes worsen. The literature suggests that caregiver interventions that teach specific skills are more beneficial than psychoeducational interventions, particularly regarding the amelioration of the psychological impacts of informal caregiving. However, because of caregiving demands, caregiver’s own physical limitations, and competing obligations, it can be difficult to attend caregiver support or education programs outside the home. With the emergence of the COVID-19 pandemic, arranging such interventions became more complex, Therefore, we report on preliminary qualitative outcomes of a study investigating the feasibility and acceptability of converting an in-person, group dementia caregiver education intervention, CARE, to a telehealth platform. We report the findings of two objectives: 1) lessons learned when attempting to convert an in-person group intervention to telehealth and 2) experience and perceived benefit of attending a virtual group from the perspective of the participants of our first two groups. Briefly, our findings demonstrate the strong need for technological support. Participants report positive experience regarding the convenience of attending the group from their home, the benefits of the assigned exercises, and the support they found from other group members. The COVID-19 pandemic has forced many to embrace the virtual option as they adapt to a new normal. There are undoubtedly hurdles to overcome, but there are also advantages to be leveraged.

Verbal Communication in Dementia Family Caregiving: Using the VNVIS-CG Scale for In-Home Video Observations

Communication is fundamental for dementia care and identifying communication behaviors is key to identifying strategies that facilitate or impede communication. To measure caregiver verbal communication, we adapted the Verbal and Nonverbal Interaction Scale for Caregivers (VNVIS-CG) for second-by-second behavioral coding of video observations. The VNVIS-CG was adapted for computer-assisted Noldus Observer coding of video interactions captured at home by family caregivers from the FamTechCare clinical trial. Operational definitions for verbal communication behaviors were developed and inter-rater reliability was excellent (Kappa = .86) using two independent coders. Videos (N=232) were coded featuring 51 dyads; caregivers were primarily female (80%) spouses (69%) of men (55%) diagnosed with moderate to severe dementia (64.7%). Mean caregiver age was 65 years. Silence occurred most frequently (44.9% of the time), followed by caregiver direction or instruction (22.6%), and the person with dementia (PWD) verbalizing (22.8%). Caregiver communication also included asking questions (14.2%), verbalizing understanding (7.9%), repeating information (2.1%), affirmations (1.0%), acknowledging emotions (0.3%), and ignoring (0.0%). Questions most commonly requested clarification, showed interest, or repetitive quizzing; few questions sought to engage PWD input (ex. offers choices, encourages emotional expression, or ask permission). Tone was overwhelmingly neutral rather than humorous, aggressive, or patronizing. The adapted behavioral coding scheme provides a reliable measure that characterizes dementia caregiver verbal communication behaviors for analysis of video observations. Ongoing research will identify strategies that facilitate communication as well as determine how strategies vary by dementia stage, diagnosis, and dyad characteristics.

Training Savvy Caregiver Program Group Leaders Through an Online Course

A significant factor limiting organizations’ implementation of the Savvy Caregiver program, a widely disseminated dementia caregiver psychoeducation course, is the need to provide training to program leaders to ensure their understanding of Savvy core principles and strengthen their teaching and coaching skills. Such training has typically been provided through in-person group sessions led by the Savvy developers. To facilitate broader availability, we have embarked on an NIA-supported program to develop a fully online self-paced Savvy train-the-trainer course. The course, delivered individually on a widely used teaching platform, is in seven sections: the first introduces Savvy principles and the trainer role; the next six cover the content and teaching strategies of each of Savvy’s six sessions. In the first development phase, 33 individuals from 13 organizations across the country took part in training (average age 49.5; almost all college level or professional women). Qualitative interviews with 11 trainees and debriefing sessions with others yielded consistently positive responses: the training enhanced their own appreciation for caregiving; they endorsed the self-paced learning and; and it established expectations for positive benefits of Savvy for caregivers. Trainees’ feedback has led to several improvements, including resolving reported technical glitches (e.g., navigating the course). New videos illustrating group delivery methods have been added. Fidelity monitoring strategies are supported as organizations have been encouraged to augment the online training by convening meetings of trainees while in training to enable role playing, and greater personalization is achieved via post-training Zoom meetings with trainees and the Savvy training team staff.

Dementia Ready: Comparing Approaches for Building Caregiver Readiness and Knowledge of Dementia

Despite the rising prevalence of dementia and the high cost and complexity of care for people with dementia, most dementia care is provided at home by informal caregivers who are not clinically trained. Building caregiver readiness and knowledge of dementia is key to supporting quality care and desirable health outcomes, such as preventing falls and reducing nursing home admissions. We sought to determine and compare the impact of two interventions—Resilient Living with Dementia (RLWD) and Care of Persons with Dementia in their Environments (COPE)—and of their combined delivery (both RLWD and COPE) on increasing caregiver readiness and knowledge of dementia. Between January 2019 and March 2021, 77 caregivers of people with dementia in Connecticut participated in RLWD and/or COPE and completed the Alzheimer’s Disease Knowledge Scale (ADKS) and the Preparedness for Caregiving Scale (PCGS) at baseline and at four-month and ten-month follow-ups. Analyses were conducted to compare outcomes by intervention(s). From baseline to four months and to ten months, we observed statistically significant (p < .05) improvement on the ADKS among participants in RLWD, and on the PCGS among participants in COPE and among participants in RLWD. The most substantial impact on PCGS was observed among participants in both COPE and RLWD. No improvement in the ADKS was observed among participants in only COPE, but ADKS improvement was observed at four months among participants in COPE and RLWD. Findings suggest that the benefits of COPE and RLWD for building dementia caregiver readiness are complementary and mutually reinforcing.

PPA Tele-Savvy: Developing an Online Intervention with Caregivers of Persons with Primary Progressive Aphasia

Primary progressive aphasia (PPA) typically results from a neurodegenerative disease such as frontotemporal lobar degeneration or Alzheimer’s disease and is characterized by a progressive loss of specific language functions with relative sparing of other cognitive domains until later stages when widespread cognitive decline consistent with generalized dementia is more prevalent. PPA tends to appear earlier than most dementias, in late middle-age, and can result in a high degree of psychological and economic burden for the family. Thematic analysis of PPA caregiver studies reveal families are learning to adapt to not only declining language across communicative contexts and domains, but concomitant behavioral, social communication and personality changes over time. While there are several evidence-based dementia caregiver interventions, none are specifically designed for the PPA family caregiver. This pilot project, funded by the Emory University Roybal Center is the adaptation of an evidence-based on-line psychoeducation program (Tele-Savvy) to address the unique challenges facing informal caregivers of those living with PPA and to help these caregivers achieve mastery within this context. PPA caregivers have been engaged through focus groups to identify their most pressing caregiving challenges and how the existing Tele-Savvy curriculum should be adapted to meet their needs. Synchronous and asynchronous video modules have been designed to address: PPA education, the impact on dyadic connection and caregiving challenges and communication strategies specific to PPA. The Tele-Savvy central processes of coaching and de-briefing will also be pilot tested and refined.

ACT-related Processes: Value-based Living Attenuates Meditating Relationships in Caregiver Stress Outcomes

Associations between behavioral and psychological symptoms of dementia (BPSD), caregiver burden, and depressive symptoms are well-established, and these constructs are often targeted in interventions. Increasingly, dementia caregiver interventions are informed by mindfulness- and acceptance-based approaches, such as Acceptance and Commitment Therapy (ACT). In addition to standard outcomes, like burden and depressive symptoms, these interventions/therapies seek improvements in individuals’ psychological flexibility (e.g., cognitive defusion, present moment awareness, values-based living). Less is known how these constructs interact within well-established caregiver stress processes. We examined a moderated mediation model (N=161 dementia caregivers; PROCESS Procedure; SPSS Release 2.16.1), with BPSD frequency (Revised Memory and Behavior Problems Checklist) predicting depressive symptoms (10-item CES-D), mediated via caregiver burden (short Burden inventory). The moderator was the Values Questionnaire (Progress scale), and we controlled for gender, caregiver duration, age, income, and education. Results revealed that the indirect effect of BPSD on depressive symptoms through caregiver burden was weakened through higher progress toward values (moderated mediation significant at p<.05). In essence, greater levels of living according to values dampened the effect of BPSD on depressive symptoms, through care-related burden. These findings are important because caregivers often cannot leave this role, requiring them to learn to live with the caregiving role in healthy ways. Value-based living and committed action toward values signify caregivers’ success at balancing care-related stress with other priorities, and psychologically adjusting to difficulties. Interventions that emphasize values-based living, like ACT, have promise for caregivers, offering healthy ways to psychologically adjust to, and live with, the experience.