Dementia Caregiving Dyads Research Articles

Dyadic perspectives on loneliness and social isolation among people with dementia and spousal carers: findings from the IDEAL programme

Objectives This study aims to investigate the impact of self and partner experiences of loneliness and social isolation on life satisfaction in people with dementia and their spousal carers. Methods We used data from 1042 dementia caregiving dyads in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme cohort. Loneliness was measured using the six-item De Jong Gierveld loneliness scale and social isolation using the six-item Lubben Social Network Scale. Data were analysed using the Actor-Partner Interdependence Model framework. Results Self-rated loneliness was associated with poorer life satisfaction for both people with dementia and carers. The initial partner effects observed between the loneliness of the carer and the life satisfaction of the person with dementia and between social isolation reported by the person with dementia and life satisfaction of the carer were reduced to nonsignificance once the quality of the relationship between them was considered. Discussion Experiencing greater loneliness and social isolation is linked with reduced life satisfaction for people with dementia and carers. However, having a positive view of the quality of the relationship between them reduced the impact of loneliness and social isolation on life satisfaction. Findings suggest the need to consider the experiences of both the person with dementia and the carer when investigating the impact of loneliness and social isolation. Individual interventions to mitigate loneliness or isolation may enhance life satisfaction for both partners and not simply the intervention recipient.

The Use of Telehealth Among People Living With Dementia-Caregiver Dyads During the COVID-19 Pandemic: Scoping Review.

Telehealth has gained substantial attention during the COVID-19 pandemic, and reimbursement policies in health care settings have increased access to remote modes of care delivery. Telehealth has the potential to mitigate care concerns for people living with dementia and their family caregivers. There is a paucity of knowledge on the performance of telehealth services and user experiences, especially among caregiving dyads during the pandemic. This study aims to describe the implementation, effectiveness, user experience, and barriers to accessing and using telehealth services for people living with dementia and their caregivers during the COVID-19 pandemic. Following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist, we searched 7 databases (PubMed, PsycINFO, AgeLine, CINAHL, Social Services Abstracts, Web of Science, and Scopus) and a web-based search engine (Google Scholar). The inclusion criteria for peer-reviewed English publications from March 2020 to August 2022 consisted of studies related to telehealth services for people living with dementia and their family caregivers and studies conducted during the COVID-19 pandemic. A total of 24 articles (10 quantitative and 14 qualitative studies) from 10 different countries were included. The major findings of the reviewed articles were extracted and organized into the following 4 themes: study design characteristics-strategies were adopted to improve the accessibility and experience of people living with dementia-caregiver dyads; efficacy outcomes of telehealth services-robust evidence is lacking on the comparative effectiveness of in-person services; perceived experiences of people living with dementia and caregivers-most reviewed studies reported positive experiences of using telehealth services and perceived personal and social benefits from their participants; and barriers to accessing and using telehealth services-several barriers related to individuals, infrastructure, and telehealth environments were identified. Although evidence of its effectiveness is still limited, telehealth is widely accepted as a viable alternative to in-person care for high-risk groups, such as people living with dementia and their caregivers. Future research should include expanding digital access for those with limited resources and low technology literacy, adopting randomized controlled trial designs to establish the comparative effectiveness of different modes of service delivery, and increasing the sample diversity.

ASSOCIATIONS BETWEEN COVID-19 PERCEPTIONS AND PREVENTIVE BEHAVIORS IN DEMENTIA CAREGIVING DYADS

Abstract This study adopted a dyadic perspective to examine how the perceptions of COVID-19 (i.e., anxiousness & hopefulness) of dementia caregiving dyads are associated with their engagement in personal (e.g., washing hands, wearing mask) and social (e.g., avoiding physical contact and going restaurants/bars) preventive behaviors. Multiple cross-sectional Actor-Partner Interdependence Models (APIMs) were estimated using data from the 2020 NHATS/NSOC COVID-19 Supplements (N=1565). In the anxiousness models, participants’ own feeling of anxiousness was associated with their own engagement in personal preventive behaviors (actor effects), and the perceived anxiousness of PLWD was associated with personal preventive behaviors of caregivers (partner effect). In the model on social preventive behaviors, both actor and partner effects were found on dementia caregiving dyads. No effect was found in the models on hopefulness. Our findings extend understandings of mutual influence within the caregiving dyads and demonstrate the possibility of developing interventions for caregivers to promote PLWD’s health behaviors.

Sustaining Our Relationship: Dyadic Interactions Supported by Technology for People with Dementia and Their Informal Caregivers.

Impaired memory function and challenges in communication affect the ability of people living with dementia to interact with family caregivers socially. The onset of dementia in a family member and the communication challenges that follow can lead to conflict, isolation and loss of closeness in the relationship. I-CARE is a tablet-based technology providing leisure activities specifically designed for people living with dementia to do in tandem with caregivers. The intention is that caregiving dyads engage with I-CARE together, using the activities contained in the system as the basis for positive social interactions. This paper reports on a mixed-methods feasibility study of I-CARE, evaluating the system’s usability and assessing the impact on caregiving dyads. We also explored barriers and facilitators to independent use of the technology among community-dwelling people living with dementia and their family caregiver. Results suggest that I-CARE is a feasible tool to facilitate positive experiences in dementia caregiving dyads. Important relationship outcomes for the participating dyads were enrichment in social interactions, facilitated communication, having a shared activity and relationship sustenance. Successful uptake requires continuous proactive support tailored to the needs and preconditions of users over an extended time until they feel confident using the system independently.

Predicting Hospice Transitions in Dementia Caregiving Dyads: An Exploratory Machine Learning Approach.

Hospice programs assist people with serious illness and their caregivers with aging in place, avoiding unnecessary hospitalizations, and remaining at home through the end-of-life. While evidence is emerging of the myriad of factors influencing end-of-life care transitions among persons living with dementia, current research is primarily cross- sectional and does not account for the effect that changes over time have on hospice care uptake, access, and equity within dyads. Secondary data analysis linking the National Health and Aging Trends Study to the National Study of Caregiving investigating important social determinants of health and quality-of-life factors of persons living with dementia and their primary caregivers (n = 117) on hospice utilization over 3 years (2015-2018). We employ cutting-edge machine learning approaches (correlation matrix analysis, principal component analysis, random forest [RF], and information gain ratio [IGR]). IGR indicators of hospice use include persons living with dementia having diabetes, a regular physician, a good memory rating, not relying on food stamps, not having chewing or swallowing problems, and whether health prevents them from enjoying life (accuracy = 0.685; sensitivity = 0.824; specificity = 0.537; area under the curve (AUC) = 0.743). RF indicates primary caregivers' age, and the person living with dementia's income, census division, number of days help provided by caregiver per month, and whether health prevents them from enjoying life predicts hospice use (accuracy = 0.624; sensitivity = 0.713; specificity = 0.557; AUC = 0.703). Our exploratory models create a starting point for the future development of precision health approaches that may be integrated into learning health systems that prompt providers with actionable information about who may benefit from discussions around serious illness goals-for-care. Future work is necessary to investigate those not considered in this study-that is, persons living with dementia who do not use hospice care so additional insights can be gathered around barriers to care.

Technology-driven dyadic interaction in caregiving.

Due to the ongoing pandemic and the resulting community lockdowns, people with dementia and their family might be at risk of social deprivation and increased relationship strains. Technological means have the potential to engage participants in meaningful positive interactions. The tablet-based activation system I-CARE offers social activities specifically designed for people with dementia and their caregivers, by offering user-specific contents adapted to their needs and sensitivities. Little is known about the impact of Covid-19 on social health for this population. The ongoing study, presented as a part of the Marie-Curie Innovative-Training-Network action, H2020-MSCA-ITN, grant agreement 813196, assesses how COVID-19 has impacted community-dwelling dementia caregiving dyads. Contextual factors of technology use and motivations for inviting technology into social interactions is explored. As a part an ongoing pre-post mixed-methods feasibility study, baseline assessments through semi-structured interviews were conducted and subjected to inductive thematic statement analysis by two independent researchers. Participants differed in how COVID-19 restrictions impacted their lives and how they coped with dementia, revealing different motivations for inviting technology into their lives. Dyads who were socially active pre-COVID-19, and who managed use technology to maintain social participation during COVID-19, reported to have been less negatively impacted by COVID-19 restrictions. Four subthemes within "Social technology during COVID-19" were identified. During and beyond this pandemic, social technology is a valuable tool to promote social participation in this population. Successful uptake of technology is dependent on customizing to individuals' needs and conditions.

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.

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 Effects of COVID-19 Home Confinement in Dementia Care: Physical and Cognitive Decline, Severe Neuropsychiatric Symptoms and Increased Caregiving Burden.

This study aims to analyze home confinement impact on individuals with neurocognitive disorders (NCD) through informal caregiver's perspective and examine how it has affected caregiving burden. Thirty-six caregivers (64.94 ± 13.54 years, 41.7% female) of individuals with NCD (74.28 ± 6.76 years, 66.7% female) selected from the Body & Brain exercise program were interviewed over the phone. The following instruments were used: Barthel Index (BI) to assess care recipients' ability to function independently on activities of daily living (ADL), the Neuropsychiatric Inventory (NPI) to evaluate neuropsychiatric symptoms, and the CarerQol-7D/ CarerQol-VAS to determine caregiver subjective burden/well-being. Pre and post-confinement comparisons showed that care recipients significantly declined their independence in ADL (p = 0.003) and increased NPI total score (MD = 5.72; 95% CI: 1.19 to 10.25, p = 0.015). As for caregivers, results also showed an increased caregiving burden (MD = -0.17; 95% CI: -0.27 to -0.08; p = 0.001) and a decline in their well-being (p = 0.015). COVID-19 crisis sheds light on how imperative it is to find solutions and design contingency plans for future crisis, in order to ensure properly sustained support to dementia caregiving dyads and mitigate caregivers' burden.

Feasibility of Home-Based Neurologic Music Therapy for Behavioral and Psychological Symptoms of Dementia: A Pilot Study.

Family caregivers often feel ill-equipped to handle bothersome behavioral and psychological symptoms of dementia, such as agitation, apathy, and sleep disturbances, leading to increased caregiver distress and nursing home placement for people with dementia. Therapies for such symptoms are currently limited and non-pharmacological options are preferred, given potential side effects of medications. Neurologic music therapy (NMT) could provide an additional treatment option for managing behavioral and psychological symptoms for community-dwelling people with dementia and their caregivers. This pilot study sought to evaluate the feasibility, acceptability, and effectiveness of home-based NMT for behavioral and psychological symptoms of dementia. Eighteen persons with dementia-caregiver dyads were enrolled to receive one-hour weekly sessions of home-based NMT for 6 weeks. Demographic, quality of life, neuropsychiatric symptom, and caregiver burden and self-efficacy information was collected at baseline, 6 weeks, and 12 weeks. Seven dyads (38.9%) withdrew from therapy before completing all sessions; these participants had higher Neuropsychiatric Inventory scores and were of older age at baseline. For those who completed therapy, neuropsychiatric symptom scores improved at 6 weeks, an effect that was sustained at 12 weeks. No other outcome measures changed significantly after therapy. Initiating NMT too late in the course of dementia, when behavioral symptoms are already present, may be impractical for people with dementia and increase caregiver stress, even when provided within the home. Introducing and incorporating the principles of NMT earlier in the course of dementia could allow for increased comfort and benefit for people with dementia and their caregivers.

The impact of relationship quality on life satisfaction and well-being in dementia caregiving dyads: findings from the IDEAL study

Objectives: The quality of the relationship between people with dementia and their informal caregiver maybe an important determinant of life satisfaction and well-being for both members of the dyad. Taking a dyadic perspective, the aim of this study was to examine whether self- and partner-rated relationship quality influences life satisfaction and well-being for both people with dementia and their caregivers.Design and methods: Using data from 1283 dyads in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) cohort, we examined the impact of current relationship quality on life satisfaction and well-being in dementia caregiving dyads. Data were analysed using the Actor–Partner Interdependence Model (APIM) framework.Results: Self-rated relationship quality was associated with own life satisfaction and well-being for both people with dementia and caregivers. Partner-rated relationship quality did not influence own life satisfaction or well-being for either member of the dyad.Conclusion: This study is the first to use the APIM framework to explore the dyadic associations between relationship quality and life satisfaction and well-being in a large cohort of dementia caregiving dyads. The obtained findings suggest that the individual perception of the quality of the caregiving relationship held by each member of the caregiving dyad is an important factor for that member’s life satisfaction and well-being, while the partner’s perception of relationship quality is not. The findings highlight the importance of considering the individual perspective of both the person with dementia and the caregiver and enabling each to maintain positive perceptions of relationship quality.

Predictive factors associated with psychological distress of caregivers of people with dementia in Japan: a cross-sectional study.

Design: A cross-sectional study. As part of a study to estimate the cost of dementia in Japan, 1,437 people with dementia-caregiver dyads were enrolled in the current informal care time study. The measurements in the study included were the basic characteristics of the caregivers and the people with dementia, and the informal care time during a week. Factors that predict caregivers' psychological distress, which was measured by Kessler's Psychological Distress scale (K6) score, were evaluated using univariate and multivariate regression analyses. Approximately 69% of the caregivers recorded a K6 score higher than 4, while 18% scored higher than 12. According to the results of the logistic regression analysis (cut-off 4/5), the K6 score was associated with mental and comorbid diseases of people with dementia, informal care time, its lower number of caregivers, and the level of nursing care. According to the results of logistic regression analysis (cut-off 12/13), the K6 score was associated with mental symptoms and comorbid disease of people with dementia, sex of caregivers, informal care time, and its lower number of caregivers. Our findings indicated that the psychological distress of the caregivers is quite high and that informal care time and behavioral and psychological symptoms of dementia are associated with it. These results corroborate with previous findings.

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.

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

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. 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. 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. 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.

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

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

The effectiveness of dyadic interventions for people with dementia and their caregivers

The need for dyadic intervention is enhanced with increasing numbers of older adults with early-stage dementia. The purpose of this paper is to review the effects of dyadic interventions on caregivers (CGs) and care recipients (CRs) at the early stage of dementia. Four databases, AgeLine, Medline, EBSCO, and PyscINFO were searched and relevant literature from 2000 onwards was reviewed. The twelve studies identified used a variety of intervention approaches including support group, counseling, cognitive stimulation, skill training, and notebook-keeping. This review suggests that intervention programs for early-stage dementia caregiving dyads were feasible and well accepted by participants. The reviewed studies provided rich evidence of the significance of mutual understanding and communication to partners' well-being and relationship quality within the caregiving process. The findings suggest that these intervention approaches improved cognitive function of the CRs, social relations, and the relationship between the primary CG and the CR, although evidence of long-term effectiveness is lacking.

Toward a Better Understanding of Psychological Well‐Being in Dementia Caregivers: The Link Between Marital Communication and Depression

Dementia research has frequently documented high rates of caregiver depression and distress in spouses providing care for a partner suffering from dementia. However, the role of marital communication in understanding caregiver distress has not been examined sufficiently. Studies with healthy couples demonstrated an association between marital communication and the partners' psychological well-being, depressiveness, respectively (e.g., Heene, Buysee, & Van Oost, 2005). The current study investigates the relationship between caregiver depression and communication in 37 couples in which the wives care for their partners with dementia. Nonsequential and sequential analyses revealed significant correlations between caregiver depression and marital communication quality. Caregivers whose husbands used more positive communication reported less depression and distress. Additionally, caregiver depression was negatively correlated with rates of positive reciprocal communication indicating dependence between the couples' interaction patterns. This study is one of the first to illustrate the relevance of spousal communication in understanding caregiver distress and depression.

Acceptability and Feasibility Results of a Strength-Based Skills Training Program for Dementia Caregiving Dyads

The current article provides an in-depth description of a dyadic intervention for individuals with dementia and their family caregivers. Using a strength-based approach, caregiving dyads received skills training across 5 key areas: (a) education regarding dementia and memory loss, (b) effective communication, (c) managing memory loss, (d) staying active, and (e) recognizing emotions and behaviors. Results of the acceptability and feasibility of the intervention protocols are also presented. Caregiving dyads were randomly assigned to participate in the intervention. Participants in the treatment condition were asked to complete a series of evaluation questions after each intervention session and an overall evaluation of the program. Data were also collected from the intervention specialists who implemented the protocols. Overall, the evaluation data indicated that the content and process of the intervention were viewed as highly acceptable and feasible by both participants and intervention specialists. This article highlights the merit of using a strength-based approach for working with caregiving dyads with dementia and how a single intervention protocol can be used to address the goals of both care partners. Furthermore, the intervention program was found to be highly acceptable and feasible, which is an important aspect of developing dyadic protocols.

Development of the Risk Appraisal Measure: A Brief Screen to Identify Risk Areas and Guide Interventions for Dementia Caregivers

To develop and validate a brief screening measure for use in research, healthcare, and community settings to systematically assess well-being and identify needed areas of support for caregivers of patients with dementia. This study used data from Resources for Enhancing Alzheimer's Caregiver Health (REACH II), a multisite randomized clinical trial of a behavioral intervention designed to improve the quality of life of caregivers in multiple domains. REACH II. Two hundred twelve Hispanic, 211 black, and 219 white family caregivers providing in-home care to patients with dementia. Based on conceptual and psychometric analyses, a 16-item measure was developed that assesses six domains linked to caregiver risk and amenable to intervention: depression, burden, self-care and health behaviors, social support, safety, and patient problem behaviors. The reliability and validity of the instrument was evaluated with 642 dementia caregiver dyads from the REACH II program. The measure was found to have acceptable internal consistency for a multidimensional scale and similar measurement properties for each of the racial and ethnic groups. Concurrent validity was also demonstrated for the measure. The REACH Risk Appraisal Measure developed in this study shows promise as an assessment tool that can be used in research, clinical, and community settings to guide, prioritize, and target needed areas of support for caregivers of patients with dementia.

The cost-effectiveness of a behavior intervention with caregivers of patients with Alzheimer's disease.

To examine the cost-effectiveness of a randomized, clinical trial of a home-based intervention for caregivers of people with dementia. This cost-effectiveness analysis examined Resources for Enhancing Alzheimer's Caregivers Health (REACH II), a multisite, randomized, clinical trial, from June 2002 through December 2004, funded by the National Institute on Aging and the National Institute of Nursing Research, of a behavioral intervention to decrease caregivers' stress and improve management of care recipient behavioral problems. Community-dwelling dementia caregiving dyads from the Memphis REACH II site. Of Memphis' random sample of 55 intervention and 57 control black and white dyads, 46 in each arm completed without death or discontinuation. Family caregivers were aged 21 and older, lived with the care recipient, and had provided 4 or more hours of care per day for 6 months or longer. Care recipients were cognitively and functionally impaired. Twelve individual sessions (9 home sessions and 3 telephone sessions) supplemented by five telephone support-group sessions. Control caregivers received two "check in" phone calls. Incremental cost-effectiveness ratio (ICER), the additional cost to bring about one additional unit of benefit (hours per day of providing care). At 6 months, there was a significant difference between intervention caregivers and control caregivers in hours providing care (P=.01). The ICER showed that intervention caregivers had 1 extra hour per day not spent in caregiving, at a cost of $5 per day. The intervention provided that most scarce of caregiver commodities--time. The emotional and physical costs of dementia caregiving are enormous, and this intervention was able to alleviate some of that cost.