Family Caregivers of People with Dementia Have Poor Sleep Quality: A Nationwide Population-Based Study

Previous studies have documented cognitive impairments, psychological stress, and depressive symptoms in family caregivers of people with dementia (PWD), which could be attributed to their sleep disturbances. Notwithstanding the increasing recognition of poor sleep quality and sleep disturbances in family caregivers of PWD, their association has not been tested yet using population-representative samples. We conducted a retrospective, cross-sectional study using population-based data from the 2018 Korean Community Health Survey. Sociodemographic, mental health-related, and physical health-related variables as well as sleep quality evaluated by the Pittsburgh Sleep Quality Index (PSQI) were compared between 2537 cohabitating caregivers of PWD, 8864 noncohabitating caregivers of PWD, and 190,278 non-caregivers. Two sets of multivariable logistic regressions were conducted to examine the associations between dementia caregiving and poor sleep quality in cohabitating and noncohabitating caregivers versus noncaregivers. Both cohabitating and noncohabitating caregivers had higher global PSQI scores and higher prevalence of poor sleep quality (PSQI score > 5) than did noncaregivers. Multivariable logistic regressions adjusted for potential confounders revealed that cohabitating caregivers (odds ratio (OR) 1.26, 95% confidence interval (CI) 1.15–1.38) and noncohabitating caregivers (OR 1.15, CI 1.10–1.21) were significantly associated with poor sleep quality. Our results showed that both cohabitating and noncohabitating caregivers of PWD experienced overall poorer sleep quality compared to noncaregivers, indicating the deleterious effect of dementia caregiving on sleep quality, regardless of living arrangements. Given the high prevalence of poor sleep quality in family caregivers of PWD and the increasing awareness of the serious health consequences of poor-quality sleep, physicians should consider active sleep interventions to promote health and wellbeing not only for the dementia patients but also for family caregivers.

A walk in the country: storying rural journeys of dementia care

Dementia and dementia caregiving are increasingly recognized as significant public health issues. Dementia may be more prevalent in rural communities; in part due to higher rates of population aging. In Canada the Nova Scotia provincial dementia strategy Towards Understanding (2015) emphasizes the need to address the unique realities of rural dementia care as a priority issue; however, research remains limited on this demographic in the province, and Atlantic Canada more broadly. This presentation shares findings from the Royal Bank of Canada Foundation funded study, Rural Dementia Caregiving: A Community Life Story, conducted in 2021 to address this critical knowledge gap. The qualitative research design involved a narrative review, archival research and narrative analysis of interviews that yielded rich stories of family/friend dementia caregiving in rural Nova Scotia. Stories illustrate how history, culture and identity inform dementia caregiver realities, experiences and self-perceptions. Study results also suggest that rural dementia caregiving is characterized by factors that include strong community networks and deep-rooted connections to land, culture, and heritage, which can be experienced as supportive as well as constraining. The conditions of life in rural communities, including restricted access to internet, transportation, essential services and paid care providers, pose challenges to dementia caregiving. They also provide opportunities in which networks and connections become more visible and may even be strengthened. Findings demonstrate the lived realities of rural dementia caregivers and the people they care for are unique. Addressing their needs require a distinct approach that acknowledges and can appropriately respond to these differences.

Analysis of Best Practice Caregiving: A New Online Database of Evidence-Based Dementia Caregiving Programs

Best Practice Caregiving (BPC) is a free online database providing comprehensive information on research and implementation characteristics for 44 evidence-based dementia caregiving programs. Programs eligible for BPC have research-tested positive outcomes for family/friend caregivers and demonstrated feasibility in community implementations. This symposium presents results from analyses of the BPC database that includes surveys of 44 program developers and 324 healthcare or community delivery-organizations, and content analysis of 231 published studies. Findings show the most common of 19 types of assistance provided by programs were: Supporting Caregiver/Individual-with-Dementia (IWD) Communication, Encouraging Positive Caregiver-IWD Activities, and Strengthening Coping (93.2%). Least common were: Getting a Dementia Diagnosis (29.5%) and Monitoring Service Benefits (20.5%). Methods of delivering the types of assistance were: information/referral (M=11.1), skills training (M=7.5), and direct provision of care (M=3.8). The most common types of organizations that delivered programs were healthcare organizations (23.8%) and Area Agencies on Aging (23.8%). The greatest delivery-challenges were program marketing (69.8%) and caregiver engagement (66.3%). Most organizations ‘strongly agreed’ that programs had positive impacts on caregivers (59.5%) but were less certain about IWD benefits (25.1% ‘strongly agreed’). Published research studies found the most improved caregiver outcomes were: 1) Strain and/or burden (84.1%), 2) Depressive symptomology (79.5%), and 3) Caregiving efficacy (63.6%). Least common improved outcomes were 1) Access to support information/Community service use (9.1%); 2) Unmet needs (6.8%); and 3) Respite/break from care (2.3%). Overall, results highlight strengths of evidence-based dementia caregiving programs, along with gaps and challenges to be addressed by existing and new developing programs.

Experiences From Healthcare and Community Organizations Delivering Evidence-Based Dementia Caregiving Programs

Best Practice Caregiving surveyed 324 healthcare and community organizations that replicated one or more of the 44 evidence-based programs about delivery organization characteristics, delivery staff, caregivers and persons with dementia served, funding sources, delivery challenges, perceived impact, and satisfaction. 211 (65.1%) organizations completed surveys about 30 different evidence-based programs. The most common types of organizations that delivered programs were healthcare organizations (23.8%) and Area Agencies on Aging (23.8%). Results showed on average organizations delivered programs for 49 months and served 68 families/year. The most common program delivery challenges were marketing (69.8%) and engaging participants (66.3%). Organizations generally agreed that programs had positive impacts on caregivers (59.5% strongly agree) but were less positive about benefits for persons with dementia (25.1% strongly agree). Discussion provides insights into successes and challenges organizations face when adopting evidence-based dementia caregiving programs in their communities.

Types of Assistances of Evidence-Based Dementia Caregiving Programs: Data Results and Future Directions

A key feature displayed in Best Practice Caregiving are the types of assistances. Data on 54 areas of care were collected for all 44 programs. These were analyzed through factor analysis and grouped into 19 types of assistance. Types were analyzed by the number of assistances provided, delivery method, and recipient of assistance. On average, programs delivered 11.8 types of assistances, with the most common types being Supporting CG/Individual-with-Dementia (IWD) Communication, Encouraging Positive CG-IWD Activities, and Assisting with Coping (93.2%), with the least common being Getting a Dementia Diagnosis (29.5%) and Monitoring Benefits of Services (20.5%). Assistance was delivered most often through information/referral delivery (M=11.07, SD=5.41) than direct (M=3.77, SD=4.54) or skills training (M= 7.50, SD=4.54). Results of the data show the breadth and characteristics of assistances programs provide to support caregivers of persons with dementia, along with gaps in types of assistances and future directions for programs.

Exploring Well-Being Outcomes Among Persons Living with Dementia: Self-Reports Versus Caregiver Proxy Reports

A vast amount of research has focused on the development of dementia caregiving evidence-based programs (EBPs) in order to mitigate the well-known negative impacts of providing care for persons living with dementia (PLWD). In order to support efficacious results, many programs utilize a variety of both objective and subjective outcomes as typically reported by the caregiver or collected via medical history and clinical assessments. However, more recent research has attempted to understand the subjective illness experience of PLWD through self-report measures. Using data obtained from an online database (i.e., Best Practice Caregiving), that currently provides in-depth information on 44 dementia caregiving EBPs, the current study aimed to examine the number of EBPs that incorporated PLWD self-report measures on a variety of well-being outcomes. Results indicate that out of the 44 EBPs included for analysis: 1) Four out of 19 programs evaluating PLWD symptom severity/difficulty/distress used a PLWD self-report measure; 2) Eight out of 10 programs evaluating PLWD symptoms of depression used a PLWD self-report measure; 3) Five out of 10 programs evaluating PLWD quality of life/care utilized a PLWD self-report measure; and 4) One out of 9 programs evaluating ADL/IADL dependencies utilized a PLWD self-report measure. Discussion will focus on potential gaps and limitations of primarily using caregiver proxy reports to collect personal well-being outcomes for PLWD and ways in which researchers can integrate more self-report measures into intervention and programmatic evaluations.

Outcome Priorities Among Evidence-Based Dementia Caregiving Programs: A Closer Look

Currently, the Best Practice Caregiving website provides information on 231 published studies from 44 dementia caregiving evidence-based programs that have demonstrated beneficial outcomes for dementia caregivers within health care and community-based settings. Across all programs, a total of 34 biopsychosocial outcomes were identified. Supported by the commonly used stress-related frameworks (e.g., Stress-Health Process, Cognitive Behavioral Theory) for which the programs were developed, the most frequently utilized program outcomes included: 1) Caregiver stress, strain, and/or burden (84.1%); 2) Caregiver depressive symptomology (79.5%); and 3) Caregiving efficacy, skills, and/or confidence (63.6%). The least common programmatic outcomes included: 1) Access to support information/Community service use (9.1%); 2) Unmet needs (6.8%); and 3) Respite/break from care (2.3%). The lesser utilized outcomes provide critical insight into current evidence-based programmatic priorities and ways in which professionals can seek to fill gaps in dementia caregiving interventions. Discussion will also focus on future directions of caregiver-related outcome assessments.

Enhancing Active Engagement for Dementia Caregivers: A Synthesis of Interventions

In a recent meta-analysis of interventions for dementia caregivers, psychoeducational interventions were found to be effective only if they required caregivers to apply knowledge and skills through active engagement. This emphasizes the importance of understanding which intervention components enhance application in order to improve caregiving interventions and the mechanisms by which they work. The purpose of this presentation is to identify and assess elements of active engagement within dementia caregiving interventions. Articles included in this review were published between 2009 and 2018 and identified as psychoeducational dementia caregiving interventions. Each intervention was assessed to describe: 1) how active engagement was defined, 2) the logistics for implementing the active engagement techniques, 3) and the process for evaluating active engagement components. Of 36 articles meeting inclusion criteria, 25 mentioned active engagement components of the intervention. Active components included discussion, problem-solving, practice, role-play, action plans, and homework. Only five articles provided partial descriptions of the active components, five mentioned assessing active engagement, and only one study examined the efficacy of an engagement technique. This demonstrates a significant gap in our understanding of interventions for dementia caregivers. Active engagement enhances outcomes, yet to our knowledge, the specific steps taken to engage caregivers actively and the mechanisms by which these work are unclear. This is a barrier to optimizing active engagement within intervention delivery. Clarifying processes and methods for testing mechanisms of action can further enhance caregiver engagement with interventions.

Description and Demo of the Best Practice Caregiving Database on 44 Research Proven Dementia Caregiving Programs

A major advance in family caregiving has been the development, testing, and community delivery of research-proven, evidence-based support programs for family or friend caregivers of persons living with dementia. This presentation showcases and demos Best Practice Caregiving (BPC), a new online resource with comprehensive profiles for 44 of the top evidence-based dementia caregiving programs that are ready for scaling in communities. For these 44 programs, BPC is a database that presents key research findings with links to all its published articles, comprehensive program descriptions including all implementation features, and survey data on program delivery experiences from 324 healthcare and community organizations that offered the program as a regular part of their service portfolio 2019. BPC enables professionals to make side-by-side comparisons of the 44 programs, with the goal of increasing implementations of these evidence-based programs by healthcare and community service organizations.

“Locked Out of Caregiving”: A Case Study of Dementia Caregiving During the Covid-19 Pandemic

It is unclear how ambiguous loss in dementia caregiving is impacted by conditions of the Covid-19 pandemic. Ambiguous loss describes situations in which closure is impossible and ambiguities within a family system ensue. Two situations of ambiguous loss exist. In the first type, one is psychologically absent, yet physically present, e.g. when one has dementia. In the second type, one is physically absent but psychologically present, e.g. moving to a nursing home. Ambiguous loss theory was applied to longitudinal interviews with an adult-child caregiver (age=52) of a mother with dementia, who resided in memory care during the Covid-19 pandemic. Theoretical analysis revealed both types of ambiguous loss were experienced in the dementia caregiving relationship. This was embedded within ambiguous loss type 2 due to the Covid-19 pandemic, e.g. social distancing and quarantine practices led to physical estrangement from others and ambiguity ensued about when, or if, estrangement would end before resulting in death. Further, the coping mechanisms defined in the ambiguous loss framework: restructuring identity, finding meaning, gaining mastery, increasing ambivalence capacity, reframing attachments, and gaining hope, were compromised due to overarching ambiguous loss attributed to the pandemic. Continued panic and frustration regarding lack of communication with and access to the memory care center instilled a sense of being “locked out of caregiving.” Findings suggest dementia caregivers may experience both types of ambiguous loss compounded during the Covid-19 pandemic, suspending grief and coping processes, and inciting poorly understood needs and challenges that must be better understood to support dementia caregivers.