Dementia Family Caregivers Research Articles

Assistance with Oral Hygiene Care Among Family Dementia Caregivers in Chinese American Communities in New York City

Assistance with Oral Hygiene Care Among Family Dementia Caregivers in Chinese American Communities in New York City

Development and validation of a self-esteem improvement program for family caregivers with dementia ‐ Utilizing ICT

The sense of caregiving burden can be significant among family caring for people with dementia and can impact mental health. Research to find ways to alleviate this burden is extremely important. Dr Yoshihiro Saito, Faculty of Nursing, Reiwa Health Sciences University, Japan, is leading a team working to develop and validate a self-esteem improvement programme designed for family caregivers of those with dementia. The project was inspired by Saito experiencing firsthand the stresses placed on family carers of people with dementia. The goal of the programme is to reduce the self-blame of dementia family caregivers and is informed by Saito’s expertise in cognitive behavioural therapy. A key part of the programme is self-compassion in order to help caregivers realise their worth. Ultimately, the aim is that, through the programme, caregivers can be kinder to themselves and realise the value and significance of their efforts. Alongside heading up this project, Saito is a supervisor for the Cognitive Behavioural Therapy Training Programme of the Ministry of Health, Labour and Welfare in Japan, focusing on popularising cognitive behavioural therapy and training the next generation. In this role, he listens to and reviews recordings of cognitive behavioural therapy sessions, providing practical advice. In the context of Japan’s ageing population, there will be an increase in people with dementia and family caregivers. Therefore, Saitoâ–™s work will be hugely beneficial in assisting those with dementia, caregivers and society.

A qualitative exploration of changes and mechanisms of changes in a psychoeducational intervention for family dementia caregivers

Background‘Learning to feel better… and help better’ is a psychoeducational intervention that aims to empower family caregivers of people with dementia by helping them cope better with the daily stress of dementia caregiving. The intervention has been adapted to a Swiss context and evaluated with a mixed-method design, yielding promising results in caregivers, such as a reduced subjective burden and improved self-efficacy. Qualitative findings have provided insight into potentially relevant intermediate changes that must be further explored to better understand how the intervention precipitates the achieved changes. We aim to qualitatively explore such changes, related mechanisms and key intervention components in the context of this intervention.MethodsA constructivist grounded theory approach was used to achieve this aim. Changes, related mechanisms and key intervention components were identified by exploring the following: 1) longitudinal qualitative data, collected from 13 family caregivers via interviews performed before, during and after the intervention (39 interviews total) and 2) cross-sectional post-intervention interview data collected from 22 family caregivers (22 interviews).ResultsExperiencing calmness was the most important change for caregivers in the context of this intervention. The calmness model, developed based on the qualitative analysis, illustrates the intermediate changes that contributed to calmness, such as being able to cope with daily life and experiencing positive interactions with the family member with dementia. Related key intervention components were the coping strategy ‘reframing’, employed in diverse ways by the caregivers to reduce daily stress, and the didactic method ‘active skills’ training’, which involved active participation by the caregivers and the guidance of a professional group leader. One important factor hampering changes in caregivers was having difficulties accepting the caregiver role or accepting the losses due to dementia.ConclusionThe calmness model offers valuable insight into how this intervention can benefit family caregivers and aid in developing interventions targeting similar mechanisms and changes.Trial registrationISRCTN13512408 (registration date 17.05.2021, retrospectively registered).

Elder Mistreatment Within Stroke Family Caregiving.

This secondary data analysis sought to identify characteristics associated with mistreatment among chronic stroke survivors who transition to dementia. We examined baseline data from a multi-time series survey study (n = 453; where caregivers of those with stroke n = 107, and those without stroke, n = 346) on caregiving experiences influencing dementia family caregivers' abusive or neglectful behaviors. Inferential statistical analysis indicated that baseline mistreatment rates were similar across stroke and non-stroke subgroups, though this finding was not significant. Caregiver depression was significantly associated with mistreatment. Multi-morbidity, prescription medication use, and limited mobility were more common among stroke survivors. Stroke-related complications may impose a greater burden of care upon family caregivers whose care recipients also have dementia. Determining timepoints of heightened mistreatment risk for stroke survivors may significantly impact long-term trajectories of stroke management to screen and identify those who may benefit from added support and intervention.

Mechanisms Underlying the Use of Abusive and Neglectful Behaviors in Dementia Caregiving: The Role of Caregiver Mental Health.

In dementia family caregiving, caregiver psychopathology has been frequently identified as a possible risk factor for the use of physically abusive, psychologically abusive, and neglectful behaviors toward care recipients. Yet, the mechanistic role of psychopathology in the use of these behaviors is not understood. The purpose of the current study is to determine the role of caregiver mental health in their daily risk of engaging in physically and psychologically aggressive and neglectful behaviors toward their care recipient with dementia. We used an intensive longitudinal design to survey family caregivers daily over 21 days. Using generalized linear mixed models, we evaluated the differential impact of caregivers' (N = 453) experience of major depression and generalized anxiety disorders measured at baseline versus 9,513 daily ratings of depressive and anxiety symptom severity, and interactions across levels, on the daily odds of engaging in physically abusive, psychologically abusive, and neglectful behaviors. Caregivers with clinically significant depression or anxiety at baseline had higher daily odds of engaging in each type of abusive and neglectful behavior. Worsened depressive symptoms (compared to individuals' average across all days) on a given day were associated with increased odds of engaging in psychologically and physically aggressive behaviors on the same day. Worsened anxiety symptoms on a given day were associated with increased odds of psychologically aggressive and neglectful behaviors. A key finding was lack of a significant interaction effect between depression and anxiety disorders and mental health symptomology on the daily odds of engaging in abusive and neglectful behaviors. This finding indicates that daily depressive and anxiety symptoms are generalizable intervention targets across the family caregiver population and do not only increase risk among family caregivers with depressive and anxiety disorders. [Research in Gerontological Nursing, 17(5), 227-236.].

Exploring expressed emotion and its influencing factors among family caregivers of dementia people: a 3-month study in Japan.

Family caregivers of dementia patients face significant challenges, including managing their own emotional responses. Understanding factors influencing expressed emotion (EE) is crucial for effective support interventions. The aim of this study was to explore and describe changes in EE among family caregivers of dementia and its associated factors at different time points over 3 months. A 3-month observational study was conducted in Japan. We collected demographically detailed data on family caregivers currently providing care, including care burden, relationship closeness, and depression. We assessed EE using the validated Family Attitude Scale (FAS). After adjustment for multiple confounding factors, multivariate linear regression analysis was performed to assess factors affecting EE at various time points. Linear regression analysis with generalised estimating equations was used to assess associations between 3-month time-varying EE and burden, intimacy, and depression. Fifty-six family caregivers completed the study. Changes in FAS scores did not show statistical differences over 3 months. It is worth noting that the degree of relationship closeness and care burden are important influencing factors of EE in both cross-sectional analysis and longitudinal analysis. Early identification of risk factors can aid in developing interventions aimed at preventing high levels of EE in the dementia family, thereby mitigating their detrimental effects. Tailored interventions are essential to enhance caregiver well-being and cultivate positive caregiver-patient relationships.

Self-Compassion and Emotion Dysregulation Mediate the Effect of Stress Appraisals on Elder Abuse and Neglect Behaviors in Dementia Family Caregiving.

The purpose of this paper is to evaluate the mechanistic process by which family caregivers' situational stress appraisals of behavioral symptoms of dementia (BSD) increase the likelihood of a caregiver engaging in abusive and neglectful behaviors toward their care recipient with dementia. We test the hypotheses that (1) the effect of daily BSD stress appraisals on elder abuse and neglect (EAN) is mediated by the caregivers' emotion dysregulation (2) and the mediation path is moderated by self-compassion. This study employed a multitime series design in which participants (N = 453) completed traditional longitudinal surveys at enrollment followed by 21 sequential days of diary surveys (n = 9,513). The hypothesized moderated mediation path was evaluated through a multilevel structural equation model. Hypotheses were supported. At the within-person level, daily BSD stress appraisal has a significant direct effect on daily EAN. At the between-person level, the path was no longer significant implying a full mediation of emotion dysregulation. The main effect of self-compassion and the interaction term (emotion dysregulation × self-compassion) were also statistically significant indicating the path between emotion dysregulation and EAN is moderated by self-compassion. This study significantly advances the field by empirically showing a mechanistic pathway for a theoretical explanation of EAN. These findings represent a breakthrough for the field and identify modifiable intervention targets for future behavioral interventions to prevent EAN. Emotion (dys)regulation and self-compassion are modifiable traits and skills that can be learned, with robust evidence bases of efficacious interventions that can be adapted for context to dementia family caregiving.

Neglect of older adults living with dementia in family caregiving: A dimensional concept analysis.

To present a concept analysis of neglect, specifically examining its occurrence and implications in the context of family caregiving for older adults living with dementia. A literature search was conducted in Medline, CINAHL, Scopus, and Embase databases in February 2023. Inclusion criteria targeted articles focusing on neglect in dementia family caregiving, leading to the identification of 11 articles for thorough review. Employing Caron and Bowers' dimensional analysis approach, the concept analysis aimed to elucidate neglect as a social construct shaped by diverse contexts, perspectives, and underlying assumptions. Neglect in this context emerged as a multidimensional phenomenon, influenced by contextual elements such as activities of daily living and behavioral symptoms of dementia. It encompasses dimensions including "expectations of unmet needs", "maladaptive behaviors", and "feelings of guilt", considering the perspectives of both caregivers and individuals living with dementia. Recognizing neglect as a dyadic phenomenon emphasizes the significance of interactions between caregivers and individuals living with dementia. A comprehensive understanding of neglect in dementia family caregiving is crucial for effective interventions and support systems. The dyadic perspective is vital for accurate assessment. Primary care physicians, mental health, nurses, and other health professionals play a key role in prevention and supporting family caregivers. Further research is needed to explore the dynamics of dementia caregiving settings strengthening prevention strategies against elder neglect.

Supplemental Material for Longitudinal Associations in Dementia Family Caregivers of Ambivalent Feelings and Disruptive Behaviors With C-Reactive Protein, Interleukin-6, and D-Dimer

Supplemental Material for Longitudinal Associations in Dementia Family Caregivers of Ambivalent Feelings and Disruptive Behaviors With C-Reactive Protein, Interleukin-6, and D-Dimer

Ambivalent Feelings and Relationship Quality in Dementia Family Caregivers: Associations with Depressive Symptomatology

ABSTRACT Objectives Ambivalent feelings in dementia family caregivers have been found to be related to caregivers´ stress associated with the behavioral and psychological symptoms of dementia (BPSD-related stress), and depressive symptoms. Ambivalent feelings may also affect caregivers´ perceived quality of the relationship with the person living with dementia (PLwD), but this variable has been scarcely studied. This study analyzes the role of ambivalent feelings in the association between caregivers’ BPSD-related stress, perceived quality of the relationship with the PLwD, and depressive symptomatology. Methods A theoretical model was developed and tested in a sample of 390 family caregivers. Results The obtained tested model had an excellent fit to the data, explaining 24% of the variance of depressive symptomatology. A significant association was found between caregivers’ BPSD-related stress, ambivalent feelings, and depressive symptomatology. Also, an indirect effect in the association between ambivalent feelings and depressive symptomatology was found through the perceived quality of the relationship. Conclusions Ambivalent feelings in dementia family caregivers are associated with caregivers’ BPSD-related stress, perception of a lower relationship quality, and higher depressive symptomatology. Clinical Implications Targeting caregivers’ ambivalent feelings and the quality of the relationship in interventions for dementia family caregivers may decrease their distress.

Integrating programme theory into the development of a core outcome set for technology-assisted counselling interventions in dementia: study protocol of the ProCOS study

IntroductionDue to the increasing number of persons with dementia, the need for family and professional support is growing. Counselling services aim to support family dementia caregivers and the use of...

Efficacy of the residential care transition module: A telehealth intervention for dementia family caregivers of relatives living in residential long-term care settings.

The purpose of this study was to evaluate the efficacy of the Residential Care Transition Module, a six-session, psychosocial, and psychoeducational telehealth intervention for family caregivers of cognitively impaired relatives living in a residential long-term care setting. Eligible participants (including care recipients, regardless of time since admission) were randomized to treatment or usual care control conditions. Survey data were collected at baseline, 4 months, 8 months, and 12 months (N = 240). Primary analytic outcomes included caregiver subjective stress (a stress process mechanism) and depressive symptoms (a measure of global well-being). Secondary analytic outcomes included secondary role strains, residential care stress, caregiver sense of competence, and self-efficacy (additional mechanisms of action). General linear models tested for the main effects of the intervention at 4 months, and longitudinal mixed models examined the 12-month effects of the intervention. Post hoc analyses also examined the influence of moderators. No significant differences between the treatment and control groups for any primary analytic outcome were apparent. Caregivers in the treatment group whose relatives were admitted to residential long-term care in the prior 3 months were more likely to indicate reductions in depressive symptoms over the first 4 months of participation. Over the 12-month study period, caregivers in the treatment group who were employed reported increased self-efficacy over time. The heterogeneity of dementia care requires a broader consideration of key contextual factors that may influence the efficacy of nonpharmacological interventions. Aligning measures with the preferences, goals, and values of dementia caregivers may further demonstrate the direct benefits of interventions such as the Residential Care Transition Module. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Experiences of Alzheimer's disease and related dementia family caregivers on Reddit communities: A topic modeling and sentiment analysis.

Alzheimer's disease and related dementias (ADRD) are a spectrum of disorders characterized by cognitive decline, which pose significant challenges for both affected individuals and their caregivers. Previous literature has focused on patient family surveys which do not always capture the breadth of authentic experiences of the caregiver. Online social media platforms provide a space for individuals to share their experiences and obtain advice toward caring for those with ADRD. This study leverages Reddit, a platform frequented by caregivers seeking advice for caring for a family member with advice for ADRD. To identify the topics of discussion or advice that most caregivers seek and sought after, we employed structured topic modeling techniques such as BERTopic to analyze the content of these posts and use an intertopic distance map to discern the variation in themes across different Reddit categories. In addition, we analyze the sentiment of the Reddit postings using Valence Aware Dictionary and Sentiment Reasoner to deduce the degree of negative, positive, and neutral sentiment of the discussion posts. Our findings reveal that the topics that caregivers most frequently discuss and seek advice for were related to caregiver stories, community support, and concerns ADRD. Specifically, we aimed to reproduce an organic Reddit search of caregiving of abuse on family member, financial struggles, symptoms of hallucinations, and repetition in ADRD family members. These results underscore the importance of online communities for gaining a comprehensive understanding of the multifaceted experiences and challenges faced by ADRD caregivers.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers’ self-efficacy with complex care

BackgroundNearly two-thirds of family caregivers of persons living with Alzheimer’s disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together (LST), a 6-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD.MethodsTo test the efficacy of LST, we will conduct a two-arm single-site randomized controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomization, a post-intervention survey, and a 3- and 6-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention’s mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention.DiscussionLST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care.Trial registrationClinical Trials.gov NCT05846984. This study was registered on May 6, 2023.

The Depression Anxiety Stress Scale 8: investigating its cutoff scores in relevance to loneliness and burnout among dementia family caregivers

The global trend of advanced aging comes at the cost of amplified onset of age-related diseases. Dementia is a common multifactorial age-related neurodegenerative disorder, which manifests with progressive declines in cognitive functioning and ability to perform activities of daily living. As polices discourage institutionalized care, family members act as primary caregivers and endure increased vulnerability to physical and mental health problems secondary to care-related changes in life routine and relationships. Targeting clinically significant distress at earlier stages through valid brief measures may promote caregivers’ wellbeing and dementia care continuity/quality. This study aimed to determine the optimal cutoff score of the Depression Anxiety Stress Scale 8-items (DASS-8) in a convenience sample of 571 European caregivers (Mean age = 53 ± 12 years, Italian = 74.4%, Swiss = 25.6%) through three methods. K-means clustering classified the sample into high- and low-distress clusters based on DASS-8 score of 19. Receiver operator curve (ROC) analysis using 48 and 7 cutoffs of the Zarit Burden Interview (ZBI) and the Three-Item University of California, Los Angeles, Loneliness Scale-version 3 (UCLALS3), revealed two DASS-8 cutoffs (12.5 and 14.5, area under the curve (AUC) = 0.85 and 0.92, p values < .001, 95% CI 0.82–0.88 and 0.89 to 0.94, sensitivity = 0.81 and 0.78, specificity = 0.76 and 0.89, Youden index = 0.57 and 0.67, respectively). Decision modeling produced two DASS-8 cutoffs (9.5 and 14.5) for predicting low and high caregiving burden and loneliness, respectively. According to the median of all DASS-8 cutoffs (14.5) the prevalence of mental distress was 50.8%. Distress correlated with key mental problems such as burnout and loneliness—in path analysis, DASS-8 scores were predicted by the ZBI, UCLALS3, care dependency, and receiving help with care, especially among older, female, and spouse caregivers. Further diagnostic workup should follow to confirm psycho-pathogenicity among caregivers with DASS-8 scores above 14.5. Investigations of the DASS-8 in other countries/populations may confirm the validity of this cutoff score.

Longitudinal effects of cognitive fusion in depressive and anxious symptoms of family caregivers of people with dementia.

Family dementia caregiving has been commonly associated with psychological distress for caregivers. Cognitive fusion, that is, the tendency to become too entangled in thoughts, beliefs, or judgments (in the absence of objectivity) that may often lead to rigid thinking and impact psychological distress, is a transdiagnostic and central process of psychological inflexibility. Cross-sectional studies have shown that family caregivers of people with dementia who could present high levels of stress may be vulnerable to experiencing psychological symptoms such as depression and anxiety (even comorbidity) if they present this rigid way of thinking without seeing the objectivity of their thoughts, which could be related to aspects of the family member's dementia or helplessness in being a caregiver, for example. Specifically, studies in the caregiving field, as well as in other populations, suggest that cognitive fusion could play a mediating role in the relationship between stress and psychological symptoms. However, the predictive role of caregivers' cognitive fusion on psychological distress has not been analyzed in longitudinal studies. The objective of this study was to analyze the longitudinal effect of cognitive fusion in depressive and anxious symptoms after controlling for other relevant variables in a sample of Spanish family caregivers. Face to face assessments were conducted with a total of 176 Spanish family dementia caregivers. The study involved three assessments in a two-year period (baseline, 12 and 24 months). Linear mixed model analysis was used to analyze the associations between time-varying values of frequency and reaction to care-recipient behavioral problems, cognitive fusion, and caregivers' depressive and anxiety symptoms. Increases in cognitive fusion significantly predicted depressive and anxious symptoms (p < 0.01). In addition, reaction to care-recipients’ behavioral problems and being a female caregiver predicted increases in anxiety symptoms over time (p < 0.05). These results suggested that cognitive fusion may constitute a core dysfunctional mechanism involved in depressive and anxious symptoms. Psychological strategies aimed at reducing cognitive fusion and stress levels may be especially helpful for reducing caregivers' distress.

Pre-onset relational investments and dementia caregiver wellbeing: Comparing theorizing from the investment model and the theory of resilience and relational load

ABSTRACT Dementia alters relationships between family caregivers and their relatives living with dementia. Drawing from the theory of resilience and relational load (TRRL) and the investment model, this study assesses the influence of dementia caregivers’ pre-onset relational investments in these relationships (relationship maintenance and communal orientation) on their individual and relational wellbeing (depression, personal growth, love/closeness). Two mediating mechanisms (relational deprivation, ongoing relationship maintenance) were examined, and disease severity was tested as a moderator. Using surveys from 454 dementia family caregivers (majority adult child and spousal caregivers), analysis revealed that pre-onset relational investments generally support caregiver wellbeing through ongoing relationship maintenance as a mediator. Disease severity moderated these associations. Findings are discussed in light of TRRL and investment model theorizing.

A randomised controlled trial of the Learning Skills Together (LST) intervention to improve dementia family caregivers' self-efficacy with complex care.

Background Nearly two-thirds of family caregivers of persons living with Alzheimer's disease or related dementias (AD/ADRD) provide complex care, including medical care. Family caregivers typically receive little to no training on how to provide this care. Furthermore, family caregivers simultaneously grapple with the presence of behavioral and psychological symptoms of dementia (BPSD), diminished communication abilities, and comorbidities such as diabetes. We developed Learning Skills Together ( LST ), a six-week digitally delivered psychoeducational program, to facilitate family caregiver abilities to administer complex care tasks. The goal of the present study is to test the efficacy of LST and to reduce adverse outcomes associated with caregiving, such as depressive symptomology and negative appraisal of BPSD. Methods To test the efficacy of LST , we will conduct a two-arm single-site randomised controlled trial (RCT) with N = 200 family caregivers of persons living with AD/ADRD. Eligible family caregivers will be randomly assigned to participate in either the LST intervention or a structurally equivalent control condition focused on healthy living. All family caregivers will complete four surveys, including a baseline survey administered prior to randomisation, a post-intervention survey, and a three- and six-month follow-up survey to assess change in study outcomes. Between-group comparisons of each outcome will be evaluated using generalized estimating equation models. Mediation analyses will assess family caregiver self-efficacy as the intervention's mechanism of change in depressive symptomology and BPSD. We will also examine caregiver race, ethnicity, and gender as effect modifiers of the intervention. Discussion LST findings will inform the field of AD/ADRD and caregiving regarding optimally supporting family caregivers in managing complex care tasks. If efficacious, the LST intervention will support family caregivers in preserving their own mental health while providing complex care. Trial registration This study was registered on Clinical Trials.gov on May 6, 2023 (NCT05846984). https://clinicaltrials.gov/study/NCT05846984?cond=learning%20skills%20together&rank=2.

Acknowledging dementia as an actor in the relationship: A facilitating mechanism promoting dementia family caregiver resilience

Despite the incredible challenges of caring for a family member with Alzheimer’s disease or a related dementia, many dementia family caregivers exhibit resilience. Framed by the communication theory of resilience, this study examines how resilience processes unfold within dementia caregivers’ relationships with their family member, and dementia caregivers’ experiences of resilience. Analysis of 27 interviews with adult children and spousal caregivers revealed acknowledging dementia as an actor in the relationship as a central facilitating mechanism that enabled caregivers to enact other communicative resilience processes within their relationship. Resilience processes were enacted through shifting blame to dementia, accommodating dementia, and relying on memories. Caregivers experienced resilience through personal growth, enhanced relational closeness, and ambivalent resilience. We discuss implications for dementia caregiver resilience and forward facilitating mechanisms as an extension of communication resilience theorizing.

Mentalising imagery therapy for family dementia caregivers: protocol for a scoping review

IntroductionDementia is a growing public health concern, and providing long-term care for individuals affected by this condition is challenging for their family caregivers. While researchers have explored various intervention options...