Familial Dementia 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.

Understanding Family Resilience in Young-Onset Dementia: A Multiple Case Study.

Through the lens of family resilience, exploring the experiences of families in adapting to young-onset dementia. Qualitative multiple case study. This study examined the family as a single unit of analysis, focusing on a triad including a person with young-onset dementia, their spouse and their adult child. Three family triads were included. Data collection took place between April 20 and July 4, 2023, in South Korea. Data analysis involved a two-stage process, consisting of a directed content analysis based on the family resilience framework within cases, followed by a cross-case analysis to identify themes and unique patterns across cases. The study identified six key themes: (1) Stressors due to a young-onset dementia diagnosis, (2) perception of the young-onset dementia diagnosis, (3) degree of emotional connection, (4) coping approach to young-onset dementia, (5) availability and utilisation of external resources and (6) patterns of adaptation. Furthermore, our research uncovered the interplay between themes, and how adaptations patterns of families formed either resilient or non-resilient. Our triadic approach uncovered hidden family dynamics, emphasising family-centred care. This study provides insights into unique challenges and diverse adaptation processes, suggesting tailored interventions. This study emphasises the importance of family-centred care in young-onset dementia, recognising all family members as crucial clients. Also, we suggest that healthcare professionals should develop tailored treatment plans that reflect the unique needs of each family. This study presents the unique experiences of young-onset dementia families, laying the foundation for developing effective support strategies that reflect these insights. Additionally, we emphasise the utilisation of external resources and their existence, providing a comprehensive research direction. Our research follows the EQUATOR guidelines, specifically adhering to the COREQ guidelines. No Patient or Public Contribution.

Neuropsychological Profiles in Genetic Frontotemporal Dementia: A Meta-Analysis and Systematic Review.

Characterization of cognitive profiles across genetic FTD gene mutations is crucial for the identification of sensitive endpoints for clinical trials targeting specific pathologies. However, no systematic overview of the literature describing cognitive profiles in different FTD gene mutations has been made thus far. We performed a meta-analysis and systematic review to characterize cognitive profiles across the different FTD gene mutations and clinical disease stages of familial frontotemporal dementia (FTD). We included 27 studies comparing presymptomatic (n=1027), and/or symptomatic (n=574) mutation carriers (GRN, MAPT, C9orf72) with controls (n=1296). We extracted cognitive data and grouped them into six cognitive domains (language, attention and mental processing speed, executive function (EF), memory, social cognition, and visuospatial abilities). These domains were further subdivided into specific cognitive sub-processes. We calculated Hedges' g and performed multilevel meta-analyses per cognitive domain and FTD gene mutation comparing presymptomatic and symptomatic mutation carriers to controls. Moderator analyses were performed to the effect of age, education, sex, and cognitive subprocess. Eleven studies into rarer FTD mutations were included in the systematic review. Presymptomatic GRN mutation carriers showed deficits in EF, and presymptomatic C9orf72 mutation carriers in language, EF, and attention. Presymptomatic MAPT mutation carriers did not differ from controls on any of the cognitive domains. All symptomatic mutation carriers had deficits in language, EF, attention, and memory. Both in the presymptomatic and symptomatic stage cognitive sub-processes for language, attention and mental processing speed, EF, and memory were differentially affected in GRN, MAPT, and C9orf72. Cognitive decline was present in the presymptomatic stage of GRN and C9orf72 mutation carriers, but not MAPT mutation carriers. Unique cognitive sub-processes were affected in GRN, MAPT, and C9orf72. This study increased our knowledge of the cognitive deficits in familial FTD, which can aid in differential diagnosis and selection of endpoints for clinical trials.

Family history of dementia and brain health in childhood and middle age: a prospective community-based study.

We aimed to determine the association of family history of dementia with structural brain measures and cognitive performance in childhood and mid-life adulthood. We studied 1,259 parents (mean age: 47.3 years, range 31.9-67.4) and 866 of their children (mean age [range] at brain MRI: 9.9 years [8.8-11.9], and for cognition: 13.5 years [12.6-15.8]) of the population-based Generation R Study. Parents filled in a questionnaire on family history, and both parents and children underwent cognitive assessment and neuroimaging. Of all participants, 109 parents (8.6%) reported a parental family history of dementia and 73 children (8.4%) had a grandparental history of dementia with mean age of dementia diagnosis in those affected 75 years (± 7.3). We observed no associations of dementia family history with cognitive ability in either parents or their children, except for worse Purdue pegboard in parents with a parental history of dementia, compared to those without (mean difference [95%CI]: -1.23 [-2.15; -0.31], test range: 21-52). In parents and children, neuroimaging measures did not differ significantly by family history. Results did not depend on age, sex, and APOE genotype. Family history of dementia was associated with worse manual dexterity in mid-life adulthood, but not with any other measures of cognitive ability or subclinical brain health in childhood and mid-life. These findings suggest that the association of family history with dementia risk is due chiefly to neurodegenerative rather than neurodevelopmental processes, and might first present with reduced motor skills.

Time Usage and Satisfaction Based on Occupational Area Between Weekdays and Weekends of Family Caregivers and Non-family Caregivers of Dementia Patients.

The number of people with dementia and the burden on families to care for them are increasing. As a result, families are affected in their use of time to carry out daily activities. This study compared family caregivers of dementia patients (dementia family) and non-family caregivers of dementia patients (non-dementia family), reflecting their characteristics on weekdays and weekends. There were 92 participants each in the groups dementia family and non-dementia family. Each group was divided into 121 people on weekdays and 71 people on weekends. Time usage was measured by occupational area. The variables assessed were "lack of time," "tiredness," "life satisfaction," and "leisure satisfaction." Variables including "house chores sharing" and "role division" were also assessed. The time usage of the Korea National Statistical Office's 2019 "time use survey" was reclassified based on the occupational areas of the Occupational Therapy Practice Framework-Fourth Edition, and time usage and satisfaction were analyzed. Frequency analysis and independent t-test were used for statistical processing. On weekdays, the dementia family showed less time usage in the "leisure" area for men and "social participation" area for women than the non-dementia family. On weekends, dementia family showed less time usage in the "activities of daily living" (ADLs) area than the non-dementia family and women in dementia family showed less time usage in "ADLs" area compared to women in the non-dementia family. Satisfaction was found to be higher in terms of "lack of time" and "tiredness" on weekdays and "tiredness" on weekends in dementia family than in the non-dementia family. Time usage and satisfaction of dementia family and non-dementia family showed differences during weekdays and weekends. These results suggest that for family caregivers of dementia patients, it is necessary to improve the efficient use of time and satisfaction during weekdays and holidays.

The clinical and neuropsychological profiles of Alzheimer's disease with white matter hyperintensity in North China.

Patients with Alzheimer's disease (AD) often exhibit characteristic clinical manifestations, particularly neuropsychiatric symptoms. Previous studies have shown that white matter hyperintensity (WMH) is strongly associated with AD progression, as well as neuropsychiatric symptoms. The purpose of this study was to investigate the clinical and neuropsychological characteristics of AD patients with WMH. This retrospective study involved 104 18-fluorodeoxyglucose-positron emission computed tomography (18FDG-PET-CT)-defined AD patients treated at Tianjin Huanhu Hospital from January 2010 to December 2022. Cranial magnetic resonance imaging (MRI) provided semi-quantitative data on brain structure and WMH. Collect and analyze patient clinical data. Neuropsychological assessments were used to evaluate cognitive function and psychobehavioral traits. Among the 104 patients, 66 were in the WMH group (63.5%) and 38 in the non-white matter hyperintensity (non-WMH) group (36.5%). There were no significant differences in gender, age, age of onset, education, BMI, smoking, drinking, diabetes, coronary heart disease, dementia family history, fasting blood glucose, total cholesterol (TC), triglyceride (TG), high-density lipoprotein cholesterol (HDL-C), low-density lipoprotein cholesterol (LDL-C) between the two groups. The WMH group showed higher rates of hypertension, homocysteine (Hcy) levels, NPI, and CDR scores as compared to the non-WMH group (p < 0.05). MMSE and MoCA scores were significantly lower in the WMH group (p < 0.05). In the MMSE subitem analysis, patients in the WMH group showed a decrease in attention, recall, and language scores. In the MOCA subitem analysis, WMH patients had lower scores in executive function, naming, attention, language, abstraction, and orientation (p < 0.05). Furthermore, subgroup analysis of NPI showed a higher incidence of delusions, depression, and apathy in the WMH group (p < 0.05). According to the hierarchical analysis of mild, moderate and severe dementia groups, the hypertension, leukoencephalopathy, Hcy level, Fazekas total score, PWMH and DWMH scores in the severe dementia group were significantly higher than those in the mild and moderate dementia groups (p < 0.05). As the disease progresses, more and more patients show increased white matter hyperintensity. White matter lesions are closely correlated with cognitive decline and psychobehavioral symptoms in AD patients, and may be used as an indicator of disease progression. Priority should be given to early screening and prevention of WMH-related risk factors.

Testing the Efficacy of a Culturally Adapted Family Dementia Caregiver Intervention (REACH VN): Results From a Cluster Randomized Controlled Trial in Northern Vietnam

ObjectivesVietnam faces an unprecedented increase in people living with dementia but lacks evidence-based family dementia caregiver interventions. We tested the efficacy of a culturally adapted family caregiver intervention (REACH VN) in Northern Vietnam. MethodsIn this randomized controlled trial, clusters (communes) were assigned to1 REACH VN (a multicomponent intervention consisting of 4-6 one-hour sessions delivered over 1-3 months) or2 enhanced control (one session of dementia education). Primary outcomes were caregiver perceived psychological distress (PHQ-4) and burden (ZBI-12). Secondary outcomes were caregiver perceived stress (PSS-10) and somatic symptoms (PHQ-15). Mixed effects analysis was performed with 3-month and 6-month assessments as the outcomes and baseline assessment as a covariate. ResultsOverall, 350 caregivers from 40 clusters (21 intervention, 19 enhanced control) enrolled and 330 (94.3%) completed 3-month assessments. At 3 months, the REACH VN intervention group had lower PHQ-4 (p <0.001) but not ZBI-12 (p = 0.05) scores compared to control. At 6 months, the intervention group had lower ZBI-12 (p = 0.002) but not PHQ-4 (p = 0.5) scores. PSS-10 and PHQ-15 scores were also improved at 3 months (p = 0.007, p <0.001 respectively) for the REACH VN intervention group compared with control but not at 6 months. ConclusionsREACH VN improved outcomes in family caregivers in Vietnam at 3 months although improvement was not sustained for most outcomes at 6 months.

A Pathway for Advance Care Planning Co-Developed by Service Users and Interdisciplinary Healthcare Professionals in Older Persons Mental Health

Abstract Background Advance Care Planning (ACP) has been recognised as an effective mechanism for decision-making, maintaining autonomy, and ensuring that end-of-life care is aligned with an individual’s will and preference. However, healthcare professional's (HCPs) lack of confidence and knowledge has been cited as a barrier to practice. Furthermore, there are currently no widely accepted guidelines for ACP in health service settings (Barnett et al., 2024[1]). A key aim of the second stage of a three-stage action research study was to co-design a pathway to support ACP practice in a Mental Health Service for Older Persons. Reference [1] Barnett, M.D., Bennett-Leleux, L.J. &amp; Guillory, L.A. (2024) End-of-life treatment preferences and ACP among older adults, Death Studies, 48:2, 95-102. Methods The pathway was developed through cooperative inquiry (CI), a collaborative research approach. The CI group involved three service users (one with dementia family carer experience), and six interdisciplinary HCPs coming together as co-subjects and co-researchers. Five in-person CI meetings were convened. Results The CI group co-developed a person-centred pathway encompassing a tiered approach to ACP, which would be a source of guidance and support for service users, family carers and HCPs. Key components include training and education for HCPs to enhance confidence and skills; a Padlet online platform to host resources for service users and family carers; and facilitated interventions based on the individual needs of service users, including potentially additional accompanying documentation to capture mental health needs. An interdisciplinary approach to facilitating ACP engagement, with social work taking a lead role was also suggested. Conclusion The pathway was identified as an effective approach to embedding ACP practice in older persons mental health, through a tiered person-centred framework catering to the needs of both service users, and the training needs of staff. The pathway is proposed as potentially adaptable to other older persons services to support ACP engagement.

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).

Concomitant presence of a novel ARPP21 variant and CNVs in Chinese familial amyotrophic lateral sclerosis-frontotemporal dementia patients.

Amyotrophic lateral sclerosis (ALS) is a devastating neurodegenerative disorder marked by the degeneration of motor neurons and progressive muscle weakness. Heredity plays an important part in the pathogenesis of ALS. Recently, with the emergence of the oligogenic pathogenic mechanism in ALS and the ongoing discovery of new mutated genes and genomic variants, there is an emerging need for larger-scale and more comprehensive genetic screenings in higher resolution. In this study, we performed whole-genome sequencing (WGS) on 34 familial ALS probands lacking the most common disease-causing mutations to explore the genetic landscape of Chinese ALS patients further. Among them, we identified a novel ARPP21 c.1231G > A (p.Glu411Lys) variant and two copy number variations (CNVs) affecting the PFN1 and RBCK1 genes in a patient with ALS-frontotemporal dementia (FTD). This marks the first report of an ARPP21 variant in Chinese ALS-FTD patients, providing fresh evidence for the association between ARPP21 and ALS. Our findings also underscore the potential role of CNVs in ALS-FTD, suggesting that the cumulative effect of multiple rare variants may contribute to disease onset. Furthermore, compared to the averages in our cohort and the reported Chinese ALS population, this patient displayed a shorter survival time and more rapid disease progression, suggesting the possibility of an oligogenic mechanism in disease pathogenesis. Further research will contribute to a deeper understanding of the rare mutations and their interactions, thus advancing our understanding of the genetic mechanisms underlying ALS and ALS-FTD.

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.

The effectiveness of case management and nursing counselling among caregivers of patients with dementia: A pilot study.

According to the data released by the Taiwan Ministry of Health and Welfare in 2021, in 2019, 235,000 patients sought medical treatment for dementia-related diseases at the National-Health-Insurance-participating hospitals and clinics for more than three outpatient visits or had been hospitalised, and the number had increased by 15,000 from the previous year (Ministry of Health and Welfare, 2021). This implies that families are affected, causing tremendous physical, psychological, and economic pressures and burdens on the caregivers and families of the patient. The estimated social cost of caring for dementia families increased from $1.3 trillion in 2019 to $2.8 trillion in 2030 (World Health Organisation, 2021). Thus, long-term care for the dementia population has become a critical issue in medical care and social services in Taiwan and worldwide. In 2017, Taiwan Ministry of Health and Welfare has been starting Dementia care policy with 10 years long-term care plan through set up dementia care centre. The purpose of this study is to investigate the effectiveness of dementia care centre for reducing the burden and improving the quality of life for caregivers of dementia patients. This pilot study adopts a quasi-experimental research design and uses purposive sampling to select in house informal caregivers of dementia patients who are part of a dementia collaborative care programme at a medical centre in the northern region and were willing to participate in this study. Upon enrolment in the study, subjects were given a pre-test, followed by a one-hour face-to-face nursing consultation and assessment after 2weeks. Subsequently, a telephone nursing consultation was conducted once a month for 3months. Two weeks after completing all counselling sessions, a post-test was administered to measure the caregiver burden with The Chinese version of the Caregiver Burden Inventory and the quality of life for caregivers with The 'Chinese Health Questionnaire CHQ-12'. After providing case management and nursing counselling, the total caregiver burden score significantly decreased from an average of 40.1 (SD=21.6) at the pre-test to an average of 38.6 (SD=21.4) at the post-test, reaching statistical significance (p<0.01). The results of this study showed that providing dementia caregivers with case management and nursing consultation services helpsimprove the overall caregiver burden (particularly emotional burden and physical burden) as well as the health questionnaire scores. However, the social burden and time burden did not improve after receiving case management and counselling among caregivers; instead, post-test scores of these aspects were significantly higher.

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.

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

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.

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...