Trial of Pimavanserin in Dementia-Related Psychosis.

BACKGROUND: Patients with dementia due to neurodegenerative disease can have dementia-related psychosis. The effects of the oral 5-HT2A inverse agonist and antagonist pimavanserin on psychosis related to various causes of dementia are not clear. METHODS: We conducted a phase 3, double-blind, randomized, placebo-controlled discontinuation trial involving patients with psychosis related to Alzheimer's disease, Parkinson's disease dementia, dementia with Lewy bodies, frontotemporal dementia, or vascular dementia. Patients received open-label pimavanserin for 12 weeks. Those who had a reduction from baseline of at least 30% in the score on the Scale for the Assessment of Positive Symptoms-Hallucinations and Delusions (SAPS-H+D, with higher scores indicating greater psychosis) and a Clinical Global Impression-Improvement (CGI-I) score of 1 (very much improved) or 2 (much improved) at weeks 8 and 12 were randomly assigned in a 1:1 ratio to continue receiving pimavanserin or to receive placebo for up to 26 weeks. The primary end point, assessed in a time-to-event analysis, was a relapse of psychosis as defined by any of the following: an increase of at least 30% in the SAPS-H+D score and a CGI-I score of 6 (much worse) or 7 (very much worse), hospitalization for dementia-related psychosis, stopping of the trial regimen or withdrawal from the trial for lack of efficacy, or use of antipsychotic agents for dementia-related psychosis. RESULTS: Of the 392 patients in the open-label phase, 41 were withdrawn for administrative reasons because the trial was stopped for efficacy; of the remaining 351 patients, 217 (61.8%) had a sustained response, of whom 105 were assigned to receive pimavanserin and 112 to receive placebo. A relapse occurred in 12 of 95 patients (13%) in the pimavanserin group and in 28 of 99 (28%) in the placebo group (hazard ratio, 0.35; 95% confidence interval, 0.17 to 0.73; P = 0.005). During the double-blind phase, adverse events occurred in 43 of 105 patients (41.0%) in the pimavanserin group and in 41 of 112 (36.6%) in the placebo group. Headache, constipation, urinary tract infection, and asymptomatic QT prolongation occurred with pimavanserin. CONCLUSIONS: In a trial that was stopped early for efficacy, patients with dementia-related psychosis who had a response to pimavanserin had a lower risk of relapse with continuation of the drug than with discontinuation. Longer and larger trials are required to determine the effects of pimavanserin in dementia-related psychosis. (Funded by Acadia Pharmaceuticals; HARMONY ClinicalTrials.gov number, NCT03325556.).

Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme.

BACKGROUND: People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. METHODS: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer's disease, vascular dementia, mixed Alzheimer's and vascular dementia, Parkinson's disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer's Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. RESULTS: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson's disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (- 0.15 points per year). Informant-rated scores declined over time (- 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (- 2.18 points per year). CONCLUSIONS: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson's disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.

Self- and interviewer-reported cognitive problems in relation to cognitive decline and dementia: results from two prospective studies.

BACKGROUND: Little is known regarding the association of interviewer-reported cognitive problems (ICP) with age-related cognitive decline. We aimed to investigate the independent associations of ICP and the combined associations of ICP and self-reported cognitive problems (SCP) with subsequent cognitive decline and dementia in two prospective cohort studies. METHODS: We included 10,976 Chinese (age = 57.7 ± 8.7) and 40,499 European (age = 64.6 ± 9.4) adults without dementia from the China Health and Retirement Longitudinal Study (CHARLS) and the Survey of Health, Ageing, and Retirement in Europe (SHARE). Self-rated memory (5-point scale) and interviewer-rated frequencies of asking for clarification (6-point scale) were used to define SCP and ICP (dichotomized). Outcomes included objective cognitive test scores (z-score transformation) and incident dementia. Generalized estimating equation models were performed to evaluate mean differences in objective cognitive decline. Logistic and Cox regression models were used to estimate the relative risk of dementia. Results from two cohorts were pooled using the random-effects models. RESULTS: ICP was associated with faster cognitive decline in CHARLS (ßCHARLS = -0.025 [-0.044, -0.006] z-score/year). ICP and SCP were also independently associated with higher risk of dementia in two cohorts (pooled relative risk for SCP = 1.73 [1.30, 2.29]; pooled relative risk for ICP = 1.40 [1.10, 1.79]). In the joint analysis, participants with coexistence of SCP and ICP had the fastest cognitive decline (ßCHARLS = -0.051 [-0.080, -0.021]; ßSHARE = -0.024 [-0.043, -0.004]; pooled ß = -0.035 [-0.061, -0.009] z-score/year) and highest risk of dementia (ORCHARLS = 1.77 [1.42, 2.20]; HRSHARE = 2.94 [2.42, 3.59]; pooled relative risk = 2.29 [1.38, 3.77]). CONCLUSIONS: The study suggested that interviewer-reported cognitive problems may be early indicators of cognitive decline and dementia in middle-aged and older adults. A combination of self- and interviewer-reported cognitive problems showed the strongest associations with cognitive decline and dementia.

Acceptance of psychosocial bridging measures in context of dementia.

Participants from an outpatient treatment program for cognitive disorders have been offered bridging measures because of limited access to the outpatient clinic during a Covid-19-caused lock-down. The aim of this study was to assess perceived stress, acceptance, and appreciation of the measures among patients and their caregivers compared to the previous bridging measure. Forty participants were offered treatment in person or online depending on their cognitive performance level. To evaluate acceptance, data collected from clinical routine was incorporated into a treatment observation. The evaluation of bridging measures by 25 participants was positive. Perceived stress was moderate to high among participants and has increased significantly compared to previous special treatment. Perceived stress in older patients had increased over the course of the pandemic. Bridging measures represented a treatment alternative and may offer previously untapped potential for location-independent psychosocial treatments in order to ameliorate both the patients' and their caregivers' convenience.

The Effect of Diagnostic Criteria on Dementia Prevalence - A Population-Based Study From Gothenburg, Sweden.

OBJECTIVES: To examine how the use of different diagnostic criteria (Diagnostic and Statistical Manual of Mental Disorders third revised, fourth, and fifth editions [DSM-III-R, DSM-IV, and DSM-5], and the 10th and 11th editions of the International Classification of Diseases [ICD-10 and ICD-11] influences the reported prevalence of dementia. METHODS: Two cross-sectional population-based studies of systematically selected 85-year-olds in Gothenburg, Sweden, (N = 774), were examined in comprehensive health examinations including comprehensive neurocognitive examinations. Five algorithms based on the diagnostic criteria in the DSM-III-R, DSM-IV, DSM-5, ICD-10, and ICD-11 were created, including 105 different variables that were operationalized in different ways to match the criteria of each classification system. RESULTS: ICD-11 yielded the highest prevalence of dementia (36.4%), followed by DSM-5 (32.9%), DSM-IV (30.7%), the clinical consensus DSM-III-R diagnosis (26.7%), DSM-III-R (21.4%), and ICD-10 (20.5%). The agreement between the DSM-5 and the ICD-11 was κ = 0.9. All other kappa values ranged between 0.6 and 0.9. CONCLUSIONS: The choice of diagnostic criteria has a large effect on the estimated prevalence of dementia. We found that the recent editions, the DSM-5 and ICD-11, gave a higher prevalence of dementia than older editions. We also show that the attempts to harmonize DSM and ICD have in part been successful, however, there are still differences between the systems.

Diverging medical and legal perceptions of the need for legal guardianship in people with dementia: A qualitative study.

BACKGROUND: Dementia is assumed to alter mental capacity, which may necessitate legal guardianship. However, only limited research exists on how dementia affects mental capacity, and most studies have focused solely on a medical perspective and concentrate on memory functions. The aim of this qualitative study was to investigate physicians' and legal experts' perceptions on a broad range of cognitive and neuropsychiatric domains potentially affecting mental capacity and the need for guardianship in people with dementia. METHODS: Physicians (N = 30) and legal experts (N = 20) participated in semi-structured individual interviews. The data were analyzed by using content analysis and further semi-quantified according to the cognitive and neuropsychiatric domains. RESULTS: Physicians considered neuropsychiatric symptoms and executive dysfunction to be the most important deficits in the legal context, while legal experts highlighted episodic memory impairment and dyscalculia. Perceptions regarding the importance of several cognitive and neuropsychiatric symptoms varied between and within the professional groups. CONCLUSIONS: Physicians and legal experts diverged in their perceptions of cognitive and neuropsychiatric domains affecting mental capacity and the need for guardianship. The evaluation and influence of medical evidence among legal experts heavily rely on subjective opinions. Given the substantial potential impact on patients' equal access to their rights, developing standardized guidelines is essential.

Dementia among Minority Populations: A Scoping Review of Meaning, Language, and Translation.

BACKGROUND: Dementia as a neurocognitive disorder is becoming increasingly common worldwide, and minority groups are more vulnerable than the general population. Many factors may contribute to their vulnerability such as misconceptions, language barriers, cultural factors, invalid assessment tools, lack of knowledge, or assigning spiritual beliefs to dementia symptoms. Therefore, this scoping literature review aimed to clarify how empirical studies reflect the meaning of dementia, language, and translation among minority ethnic groups. SUMMARY: The PRISMA extension for the scoping review protocol was used. Thirty-eight studies published in English were reviewed and analysed. The findings revealed that lack of knowledge about dementia and attributing the disease to the normal ageing process were frequent among minority groups. Furthermore, their cultural-specific perspectives and worldviews of wellness and well-being can impact the way dementia is perceived, consequent help-seeking behaviours, or caregiving. Facilitating educational programs to enhance the knowledge and experiences of ethnic communities might be beneficial. Moreover, language is shown to be an important aspect in dementia assessment and participants' educational level could significantly impact their functional capacity when responding to cognitive measures. Even though there are some useful screening tests, diagnosis barriers might be eased by assessment tool development, modifications, and accurate translations for ethnic communities. KEY MESSAGES: A promising pathway to support ethnically diverse communities regarding dementia can be raising awareness, providing ethnic-specific services, developing cultural-specific tools to assess dementia or any cognitive impairment by considering perceptions, language, and culture among ethnic groups. Cultural and spiritual considerations could also encourage engagement during assessment.

Emotion Regulation Strategies and Mental Health in Dementia Caregivers: The Moderating Role of Gender.

INTRODUCTION: Providing care for a loved one with dementia can engender intense emotions that contribute to symptoms of anxiety and depression. Caregivers often attempt to regulate their emotions using strategies like cognitive reappraisal (CR; changing how they think about the situation) or expressive suppression (ES; hiding their emotions). However, men and women caregivers may differ in their use of these strategies. The current study examines gender differences in reported CR and ES usage and their associations with depression and anxiety in dementia caregivers. METHODS: We combined data from three independent studies of informal dementia caregivers (total N = 460) who reported on their use of CR, ES, and symptoms of anxiety and depression. RESULTS: Women caregivers reported greater use of CR and less use of ES compared to men. Gender moderated the association between CR and depression, such that greater use of CR in women was associated with fewer depressive symptoms, but not for men. Gender did not significantly moderate the association between ES and depression, or between either emotion regulation strategy and anxiety. CONCLUSION: Findings of a unique relationship between greater CR use and less depression among women CGs, although correlational, suggest that utilizing CR may be particularly helpful for reducing depression in women caregivers. These results underscore the need for further research to determine how best to support the mental well-being of dementia caregivers.

The Effectiveness of the Case Manager-Centered Collaborative Care Model with Computer-Assisted Assessment on Quality Indicators for the Care of Dementia.

INTRODUCTION: This study aimed to investigate the influence of case management and its corresponding computer-assisted assessment system on the quality improvement of dementia care. METHODS: This observational study enrolled 2029 patients and their caregivers at Changhua Christian Hospital in Taiwan. Physicians who made the diagnosis of dementia would introduce the patient and caregiver dyad to the case manager-centered collaborative care team after obtaining agreement. The achievement rates of 11 quality indicators (QIs) comprising timely diagnostic evaluations, regular screens of cognition and neuropsychiatric symptoms, caregiver support, and proper medication prescriptions were counted. Different timeframes (≤4 months, 4 months-1 year, 1-2 years, 2-3 years, or ≥3 years) from diagnosis of dementia to collaborative care intervention were compared. RESULTS: A significantly higher attainment rate was achieved for patients with earlier entry into the collaborative team model, including QIs about timely diagnosis and regular screening, and caregiver support. The QIs regarding dementia medication prescriptions and documentation of the risk of antipsychotics remained similar regardless of the time of entry into the model. The completion rates of QIs also improved after the information system was launched. CONCLUSIONS: Physician-case manager co-management in the setting of a collaborative care model with a computer-assisted assessment system helps improve QI achievement for dementia care.

Defining the Role of Frailty in the Transition from Mild Cognitive Impairment to Dementia and in Dementia Progression.

INTRODUCTION: Neurodegenerative diseases are a growing concern in an aging global population. Frailty, often conceptualized as a state of diminished physiological reserve and increased susceptibility to stressors, emerges as a pivotal factor in this context. While frailty may be modified, it is essential to recognize its frequently irreversible nature, necessitating a careful approach when considering its role and influence in the progression from mild cognitive impairment (MCI) to dementia and within dementia progression. METHODS: A retrospective study including 1,284 participants, attending a Cognitive Disturbances and Dementia unit from January 2021 to May 2023, was conducted. Frailty was assessed using the clinical frailty scale (CFS) score. Multilevel univariate and multivariate logistic regression models were developed to determine the contributions of patient characteristics, including frailty, to disease progression. RESULTS: Frailty significantly increased with higher global clinical dementia rating (CDR) subgroups, suggesting escalating frailty burden with disease progression. Age, CFS, and mini-mental state examination (MMSE) scores were significant predictors of progression from MCI to dementia and to more severe dementia stages, even when considering the independence from variables contributing to frailty. Patients transitioning to a higher CDR group exhibited higher CFS scores. Age, education, anticholinergic burden, cumulative illness rating scale - geriatric, MMSE, and neuropsychiatric inventory scores significantly contributed to frailty. CONCLUSIONS: Frailty plays a critical role in the transition from MCI to dementia and within dementia progression. Age, cognitive impairment, and frailty were identified as significant predictors of disease progression. The CFS is a clinically applicable tool for frailty assessment. Regular frailty assessments may be valuable in early detection and management of dementia.

Neuropsychiatric Profiles and Cerebral Amyloid Burden in Adults without Dementia.

INTRODUCTION: We comprehensively evaluated how self- and informant-reported neuropsychiatric symptoms (NPS) were differentially associated with cerebral amyloid-beta (Aß) PET levels in older adults without dementia. METHODS: Two hundred and twenty-one participants (48% female, age = 73.4 years ± 8.4, Clinical Dementia Rating = 0 [n = 184] or 0.5 [n = 37]) underwent an Aß-PET scan (florbetapir or PIB), comprehensive neuropsychological testing, and self-reported (Geriatric Depression Scale - 30 item [GDS-30]) and informant-reported interview (Neuropsychiatric Inventory Questionnaire [NPI-Q]) of NPS. Cerebral Aß burden was quantified using centiloids (CL). NPI-Q and GDS-30 queried the presence of NPS within 4 subdomains and 6 subscales, respectively. Regression models examined the relationship between NPS and Aß-PET CL. RESULTS: Both higher self- and informant-reported NPS were associated with higher Aß burden. Among specific NPI-Q subdomains, informant-reported changes in depression, anxiety, and irritability were all associated with higher Aß-PET. Similarly, self-reported (GDS-30) subscales of depression, apathy, anxiety, and cognitive concern were associated with higher Aß-PET. When simultaneously entered, only self-reported cognitive concern was associated with Aß-PET in the GDS-30 model, while both informant-reported anxiety and depression were associated with Aß-PET in the NPI-Q model. Clinical status moderated the association between self-reported NPS and Aß-PET such that the positive relationship between self-perceived NPS and Aß burden strengthened with increasing functional difficulties. CONCLUSIONS: In a cohort of older adults without dementia, both self- and informant-reported measures of global NPS, particularly patient-reported cognitive concerns and informant-reported anxiety and depression, corresponded with cerebral Aß burden. NPS may appear early in the prodromal disease state and relate to initial AD proteinopathy burden, a relationship further exaggerated in those with greater clinical severity.

Influence of Behavioral and Psychological Symptoms on Caregiver Burden for Different Types of Dementia: Clinical Experience in Lima, Peru.

INTRODUCTION: People caring for patients with dementia are prone to suffering from burden. Behavioral and psychological symptoms of dementia (BPSD) may have an impact on caregiver burden. In Latin American countries, there is a lack of research on caregiver burden. We aimed to determine which BPSD have the greatest impact on caregiver burden among Peruvian patients with dementia and to compare the effects of BPSD on caregiver burden across different types of dementia. METHODS: A cross-sectional study was conducted on 231 patients living with Alzheimer's dementia (AD), behavioral variant frontotemporal dementia (bvFTD), dementia with Lewy bodies (DLB), and vascular dementia (VD) and their caregivers who attended a Peruvian memory clinic. BPSD were assessed with the Neuropsychiatric Inventory (NPI). Caregiver burden was assessed with the Zarit Burden Inventory. We used analysis of variance to compare the AD, bvFTD, DLB, and VD groups. Correlations between Zarit Burden Inventory and NPI subscale scores were assessed with Spearman's correlation. RESULTS: DLB caregivers had significantly higher levels of burden than the other patient groups (p < 0.05) and higher total NPI scores than caregivers for other patient groups (p < 0.05). bvFTD caregivers had significantly higher total NPI scores than AD and VD caregivers (p < 0.05). Hallucinations, aberrant motor behavior, and apathy were the symptoms most significantly correlated with caregiver burden in those caring for DLB, bvFTD, and AD patients, respectively. CONCLUSION: Neuropsychiatric symptoms are higher in DLB caregivers. Hallucinations, aberrant motor behavior, and apathy are the main symptoms correlated with burden.

Health Fluctuations in Dementia and its Impact on the Assessment of Health-Related Quality of Life Using the EQ-5D-5L.

OBJECTIVES: To quantify health fluctuations, identify affected health-related quality of life (HRQoL) dimensions, and evaluate if fluctuations affect the HRQoL instruments recall period adherence in people living with dementia (PlwD). METHODS: Caregivers of PlwD completed a daily diary for 14 days, documenting if PlwD's health was better or worse than the day before and the affected HRQoL dimensions. Health fluctuation was categorized into low (0-4 fluctuations in 14 days), moderate (5-8), and high (9-14). Also, caregivers and PlwD completed the EQ-5D-5L (proxy- and self-reported) on days 1, 7, and 14. Subsequently, caregivers were interviewed to determine whether recurrent fluctuations were considered in the EQ-5D-5L assessment of today's health (recall period adherence). RESULTS: Fluctuations were reported for 96% of PlwD, on average, for 7 of the 14 days. Dimensions most frequently triggering fluctuations included memory, mobility, concentration, sleep, pain, and usual activities. Fluctuations were associated with higher EQ-5D-5L health-states variation and nonadherence to the EQ-5D-5L recall period "today." PlwD with moderate to high fluctuation had the highest EQ-5D-5L utility change between day 1 and 14 (0.157 and 0.134) and recall period nonadherence (31% and 26%) compared with PlwD with low fluctuation (0.010; 17%). Recall period nonadherence was higher in PlwD with improved compared with those with deteriorated health in the diary (37% vs 9%). CONCLUSIONS: Health fluctuations frequently occur in dementia and strongly affect HRQoL assessments. Further research is needed to evaluate if more extended recall periods and multiple, consecutive assessments could capture health fluctuations more appropriately in dementia.

Caregivers of People With Mild Cognitive Impairment and Dementia: Characterizing Social and Psychological Outcomes.

OBJECTIVE: Little is known about caregiving across the spectrum of cognitive impairment [mild cognitive impairment (MCI) to dementia] and how early life and sociocultural factors affect caregiver health. In this study, we characterized differences between caregivers of those with MCI versus those with dementia. METHODS: A total of 158 caregivers were enrolled in this cross-sectional study, most of whom were dementia caregivers (65%). Caregivers completed questionnaires on depressive symptoms, self-rated health (SRH), perceived burden and stress, as well as psychosocial and demographic measures. RESULTS: Caregivers of those with MCI reported fewer depressive symptoms and lower stress and burden compared with dementia caregivers. In adjusted analyses caregivers with greater stress reported more depressive symptoms. For SRH, at lower stress levels, having a sibling die before age 18 (ie, early life adversity) was associated with poorer SRH; at higher stress levels, having early life adversity was associated with better SRH. At lower burden levels, more live births were associated with worse SRH; at higher burden levels, more live births were associated with better SRH. CONCLUSIONS: Early life factors are relevant for caregivers of those with cognitive impairment and targeted prevention and early intervention may be helpful in alleviating caregiver burden and stress.

" I'm not a risk taker " : Risk Perceptions of Nursing Home Residents With Dementia.

BACKGROUND: Persons living with Alzheimer disease and related dementia (ADRD) in nursing homes (NH) are often excluded from conversations about their health/safety. These omissions impinge on personhood and the rights to have care preferences heard and honored. While persons with ADRD maintain the ability to communicate their preferences long after their decision-making abilities are affected, little is known about how persons with ADRD understand the risks associated with their preferences. METHODS: As part of a larger focused ethnography, in-depth interviews and an adapted risk propensity questionnaire explored the risk perceptions of NH residents with ADRD (N=7) associated with their preferences for care and activities of daily living. RESULTS: Residents generally self-identified as risk avoiders ( M =3.2±1.84) on the risk propensity scale and were able to rate risk associated with preferences described within 5 thematic categories: 1) participation in decision-making, 2) risk awareness, 3) paying attention to safety, 4) reliance on nursing home staff and family, and 5) impacts on quality of life and quality of care. DISCUSSION: Results suggest NH residents with ADRD can express risk surrounding their preferences and should be encouraged to participate in discussions about their health and safety.

How do quantitative studies involving people with dementia report experiences of standardised data collection? A narrative synthesis of NIHR published studies.

BACKGROUND: People with dementia are routinely included as research participants in trials and other quantitative studies in which they are invited to respond to standardised measures. This paper reviews the reporting of standardised data collection from people with dementia in reports published in the National Institute for Health and Care Research (NIHR) Journals Library. The aim was to understand how the administration of standardised, self-report measures with people with dementia is reported in NIHR monographs and what could be learnt from this about the feasibility and acceptability of data collection approaches for future studies. METHODS: This was a systematic review with narrative synthesis. Broad search terms (Dementia OR Alzheimer*) were used to search the NIHR Journals Library website in December 2021. All studies that used (or intended to use) standardised measures to collect research data directly from people with dementia were eligible for inclusion. Information was extracted (where reported) on the process of data collection, dementia severity, levels of missing data and the experiences and reflections of those involved. RESULTS: Searches returned 42 records, from which 17 reports were assessed as eligible for inclusion, containing 22 studies. Response rates from participants with dementia in these studies varied considerably and appeared to be related to dementia severity and place of residence. Little information was reported on the process of data collection or the reasons for missing data, and most studies did not report the experiences of participants or those administering the measures. However, there was an indication from two studies that standardised data collection could provoke emotional distress in some participants with dementia. CONCLUSIONS: Through this review we identified both variation in levels of missing data and gaps in reporting which make it difficult to ascertain the reasons for this variation. We also identified potential risks to the well-being of participants with dementia which may be associated with the content of standardised measures and the context of data collection. Open reporting of and reflection upon data collection processes and the experiences of people involved is essential to ensure both the success of future data collection and the wellbeing of study participants. TRIAL REGISTRATION: Registered with Research on Research https://ror-hub.org/study/2905/ .

Emotion Regulation in Dementia Caregiving: The Role of Neuropsychiatric Symptoms and Attachment Orientation.

Family caregivers are usually the main source of support for persons living with dementia, being exposed to a loved one's suffering, which can lead to experiencing strong and negative emotions. This study aimed to identify factors capable of explaining individual differences in the way caregivers regulate their emotions. This cross-sectional study included 78 informal caregivers (M = 64.84 years; SD = 13.32) and 84 controls (non-caregivers) (M = 77 years; SD = 7.59). Neuropsychiatric symptoms (NPS), attachment orientations, and emotion regulation were measured using self-report scales. Caregivers of persons living with dementia used more expressive suppression in comparison to non-caregivers. NPS and attachment avoidance were associated with expressive suppression. Moderation analyses showed that NPS only predicted expressive suppression when attachment avoidance was low or medium. The present study showed that caregivers are more likely to suppress their emotions in the presence of NPS, especially those with lower/middle levels of attachment avoidance. Psychological interventions targeting emotion regulation should be offered especially to caregivers that face NPS of persons living with dementia and present lower/middle levels of attachment avoidance.

Burden and Depression among Empirically-Derived Subgroups of Family Caregivers for Individuals With Dementia.

Dementia caregiving experiences are not universal and different factors may influence the risk for burden and depression. This study examined factors such as the relationship with the care recipient, severity of dementia, and relationship satisfaction to uncover different types of caregiver burden profiles using baseline assessment for a telephone-based intervention study for dementia caregivers. Participants (n = 233) completed a battery of psychological and caregiving related surveys. The sample was predominantly White and female. Latent class analysis suggested four class models in subsamples of spousal caregivers and adult children caregivers. The results suggested four distinct classes among samples of spousal and adult child caregivers. Differences in burden emerged across both spouses and adult children, and differences in depression also emerged in the spousal sample. Our findings demonstrate the diversity of the caregiving experience and suggest that future psychosocial interventions may benefit from being tailored to the needs of caregiver subgroups.

A Novel Approach to Monitoring Cognitive Adverse Events for Interventional Studies Involving Advanced Dementia Patients: Insights From the Electroconvulsive Therapy for Agitation in Dementia Study.

OBJECTIVE: To develop an individualized method for detecting cognitive adverse events (CAEs) in the context of an ongoing trial of electroconvulsive therapy for refractory agitation and aggression for advanced dementia (ECT-AD study). METHODS: Literature search aimed at identifying (a) cognitive measures appropriate for patients with advanced dementia, (b) functional scales to use as a proxy for cognitive status in patients with floor effects on baseline cognitive testing, and (c) statistical approaches for defining a CAE, to develop CAEs monitoring plan specifically for the ECT-AD study. RESULTS: Using the Severe Impairment Battery-8 (SIB-8), baseline floor effects are defined as a score of ≤5/16. For patients without floor effects, a decline of ≥6 points is considered a CAE. For patients with floor effects, a decline of ≥30 points from baseline on the Barthel Index is considered a CAE. These values were derived using the standard deviation index (SDI) approach to measuring reliable change. CONCLUSIONS: The proposed plan accounts for practical and statistical challenges in detecting CAEs in patients with advanced dementia. While this protocol was developed in the context of the ECT-AD study, the general approach can potentially be applied to other interventional neuropsychiatric studies that carry the risk of CAEs in patients with advanced dementia.