What Do We Know About Behavioral Crises in Dementia? A Systematic Review

Background: Behavioral crises in dementia are represented by a wide variety of symptoms, regularly require external intervention from professionals, and are reported as a risk factor for hospital admission. Little is known about the factors that are associated with them. Objective: To determine the factors associated with dementia-related behavioral crises. Methods: We searched MEDLINE, CINAHL, PsycINFO, EMBASE, and AMED databases. An additional lateral search including reference lists was conducted. Two researchers screened all records for potential eligibility. Narrative synthesis was used to bring together the findings. Results: Out of the 5,544 records identified, 24 articles (18 distinct studies) met the eligibility criteria. Aggression and agitation were the most common behaviors present at crises. Delusions, wandering/absconding, and hallucinations were also key behaviors contributing to crises. Behavioral crises predominantly happened in the severe stages of dementia (according to MMSE scores), in people with dementia residing in their own homes and in long-term care, and were the catalyst for admissions to psychiatric inpatient settings, specialist-care units, long-term care settings, or for referrals to psychiatric community services. Lack of consistency in assessment of behavior, and management of agitation/aggression in dementia crises were evident. Conclusion: Interventions to reduce the likelihood of people with dementia-related behaviors reaching crisis point need to focus on both family and care home settings and incorporate aggression and agitation management. Future research should focus on determining the factors that could be addressed to prevent behavioral crises and the interventions and models of care that may help to prevent crises. Keywords: Behavior; behavioral symptoms; crisis intervention; dementia; hospitalization; institutionalization

Contributions of Caregiver Management Styles to the Discrepancy Between Reported and Observed Task Performance in People with Dementia

Background: The identification and understanding of the discrepancy between caregivers’ reports of people with dementia’s (PwD) performance of activities of daily living (ADLs) and observed performance, could clarify what kind of support a PwD effectively needs when completing tasks. Strategies used by caregivers have not been included in the investigation of this discrepancy. Objectives: To (1) investigate if caregivers’ report of PwD’s ADL performance are consistent with PwD’s observed performance; (2) explore if caregiver management styles, depression, and anxiety, contribute to this discrepancy. Methods: PwD (n=64) were assessed with standardised performance-based (AMPS) and informant-based (DAD) ADL assessments. Caregivers completed depression (PHQ-9), anxiety (GAD-7), and dementia management style (DMSS: criticism, active-management, and encouragement) questionnaires. Cohen’s kappa determined agreement/disagreement in ADL performance. To investigate the potential discrepancy between the DAD and AMPS, a continuous variable was generated: comparative ADL score. Multiple linear regression analysis explored whether caregivers’ management styles, depression or anxiety could explain the ADL discrepancy. Results: Poor level of agreement between observed and reported ADL performance [k= -0.025 (95%CI -0.123 – 0.073)] was identified, with most caregivers underestimating ADL performance. The combined model explained 18% (R2=0.18, F(5, 55)=2.52,p=<0.05) of the variance of the comparative ADL score. Active-management (β=-0.037,t(60)=-3.363, p=0.001) and encouragement (β=0.025,t(60)=2.018, p=0.05) styles made the largest and statistically significant contribution to the model. Conclusions: Encouragement style could be advised for caregivers who underestimate ADL performance, while active management style for those who overestimate it. Findings have scope to increase caregivers’ abilities to support PwD activity engagement in daily life

How does carer management style influence the performance of activities of daily living in people with dementia?

INTRODUCTION: People with Dementia (PwD)’s performance of activities of daily living (ADLs) has been associated with apathy, cognitive deficits, carers’ depression and burden. However, it is not known if the carers’ management style affects ADL performance, particularly alongside PwD’s cognitive deficits and apathy. Thus, the aim of this study was to explore the contribution of intrinsic (cognition, apathy) and extrinsic (carer management styles) dementia factors to ADL performance. METHODS: PwD (n=143) were assessed on global cognition (ACE-III); apathy (CBI-R); ADLs (Disability Assessment for Dementia-DAD). Carers’ (n=143) criticism, encouragement and active-management styles were assessed with the Dementia Management Strategy Scale (DMSS). Multiple linear regression analysis investigated contributions of carer styles, cognition, apathy (independent variables) on ADLs (dependent variable). RESULTS: The best model explaining the variance of the DAD scores included cognition (β =0.413, t(142)=4.463, p=0.001), apathy (β =-0.365, t(142)=-5.556, p=0.001), carer criticism (β =-0.326, t(142)=-2.479, p=0.014) and carer encouragement styles (β =0.402, t(142)=2.941, p=0.004) accounting for 40% of the variance of the DAD scores. CONCLUSIONS: This novel study demonstrated that PwD’s level of apathy and the carer’s use of criticism negatively affected ADL performance while PwD’s cognitive abilities and carer encouragement style improved ADL performance. These findings have critical implications for the development of novel multi-component non-pharmacological interventions to maintain function and delay disease progression in dementia, as well as direct relevance to current carers and families

A New and Tidier Setting How Does Environmental Clutter Affect People With Dementia’s Ability to Perform Activities of Daily Living?

Background: The relationship between the physical environment and the person with dementia’s (PwD) activities of daily living (ADLs) task performance is controversial. Although the general assumption is that this population benefits from their home environment when performing ADLs, very few experimental studies have been conducted to date. Objectives: The aim was to investigate the influence of the environment (home vs. Research-lab) and the role of clutter on ADL performance. Methods: Sixty-five PwD were evaluated with a performance-based ADL assessment (at home and clutter-free Research-lab). Paired t tests compared ADL performance and level of clutter in both environments. Multiple regression analysis investigated factors associated with better ADL performance. Results: Overall, PwD performed better at home even though clutter was significantly lower in the Research-lab. When stratified by dementia stage, PwD in the moderate stage of the disease performed better at home. Conclusion: Absence of clutter in the Research-Lab did not appear to play a beneficial role in ADLs. When stratified by dementia stage, only PwD in the moderate stage appeared to benefit from their home environment when performing ADL tasks. Future studies are required to elucidate the wider role of the environment in supporting engagement in daily activities in different dementia stages

The behavioural variant frontotemporal dementia phenocopy syndrome is a distinct entity - evidence from a longitudinal study.

BACKGROUND: This study aimed to i) examine the frequency of C9orf72 expansions in a cohort of patients with the behavioural variant frontotemporal dementia (bvFTD) phenocopy syndrome, ii) observe outcomes in a group of phenocopy syndrome with very long term follow-up and iii) compare progression in a cohort of patients with the phenocopy syndrome to a cohort of patients with probable bvFTD. METHODS: Blood was obtained from 16 phenocopy cases. All met criteria for possible bvFTD and were labeled as phenocopy cases if they showed no functional decline, normal cognitive performance on the Addenbrooke's Cognitive Examination-Revised (ACE-R) and a lack of atrophy on brain imaging, over at least 3 years of follow-up. In addition, we obtained very long term follow-up data in 6 cases. A mixed model analysis approach determined the pattern of change in cognition and behaviour over time in phenocopy cases compared to 27 probable bvFTD cases. RESULTS: All 16 patients were screened for the C9orf72 expansion that was present in only one (6.25%). Of the 6 cases available for very long-term follow-up (13 - 21 years) none showed progression to frank dementia. Moreover, there was a decrease in the caregiver ratings of behavioural symptoms over time. Phenocopy cases showed significantly slower rates of progression compared to probable bvFTD patients (p < 0.006). CONCLUSION: The vast majority of patients with the bvFTD phenocopy syndrome remain stable over many years. An occasional patient can harbor the C9orf72 expansion. The aetiology of the remaining cases remains unknown but it appears very unlikely to reflect a neurodegenerative syndrome due to lack of clinical progression or atrophy on imaging

The Relationship between Behavioural Changes, Cognitive Symptoms, and Functional Disability in Primary Progressive Aphasia: A Longitudinal Study

Background: The contribution of behavioural changes to functional decline is yet to be explored in primary progressive aphasia (PPA). Objectives: (1) investigate functional changes in two PPA variants [semantic (svPPA) and non-fluent (nfvPPA)], at baseline and after 12 months; (2) investigate baseline differences in behavioural changes between groups, and (3) explore predictors of functional decline after a 12-month period. Methods: A longitudinal study involving 29 people with PPA (18 svPPA; 11 nfvPPA) seen annually in Sydney/Australia was conducted. A total of 114 functional and behavioural assessments were included for within-group (repeated-measures ANOVA; annual rate of change; multiple regression analyses) and between-group analyses (pairwise comparisons). Results: Functional profiles in svPPA and nfvPPA were similar in people with up to 5 years of disease duration. Behavioural changes were marked in svPPA patients (stereotypical behaviour and apathy) but did not predict annual rate of change of functional abilities; global cognitive scores at baseline did. Despite mild behavioural changes in nfvPPA (disinhibition, apathy), these were significant predictors of annual rate of functional change. Conclusions: The presentation and interplay of behavioural changes and functional disability differ in svPPA and nfvPPA. These varying factors should be taken into account when considering prognosis, disease management, and selection of outcome measures for interventions

Longitudinal change in everyday function and behavioral symptoms in frontotemporal dementia

Background: The relationship between behavioral changes and functional decline in frontotemporal dementia (FTD) is not well understood. Methods: Thirty-nine patients (21 behavioral variant FTD [bvFTD], 18 semantic variant primary progressive aphasia [svPPA]) were followed up longitudinally (2–4 years follow-up). Functional (Disability Assessment for Dementia) and behavioral (Cambridge Behavioural Inventory Revised) assessments were included for between-group (pairwise comparisons, mixed model analysis) and within-group analyses (bivariate correlations). Results: Functionally, patients with bvFTD were more impaired than patients with svPPA at baseline and continued to be at follow-up, despite similar disease duration. By contrast, behavioral impairments differed between patient groups at baseline and at follow-up. At baseline, patients with bvFTD exhibited higher levels of apathy and changes in eating than patients with svPPA; disinhibited and stereotypical behaviors were similar. Over the years, patients with bvFTD showed reduction in disinhibition and stereotypical behavior while apathy and eating changes increased. By contrast, all measured behaviors increased in patients with svPPA over time. Finally, only apathy made longitudinal contributions to functional disability in patients with svPPA, whereas apathy and stereotypical behavior were associated with increased disability in patients with bvFTD. Conclusions: Despite shared overlapping baseline behavioral symptoms, patients with bvFTD are more functionally impaired than patients with svPPA. Apathy has a strong role in disability for both bvFTD and svPPA, but stereotypical behaviors only contributed to functional deficits in patients with bvFTD. Our findings suggest that rigid/compulsive behaviors may in fact support activity engagement in patients with svPPA. Taken together, our results indicate that interventions to reduce disability in the FTD spectrum require an alternative rationale in comparison to Alzheimer disease dementia, and should carefully weigh the interaction of behavioral symptoms and functional status

An online intervention for carers to manage behavioral symptoms in motor neuron disease (MiNDToolkit): A randomized parallel multi-center feasibility trial

Background: Evidence on management of behavioral symptoms in motor neuron disease (MND) is lacking. The MiNDToolkit, an online psychoeducational platform, supports carers dealing with behavioral symptoms (BehSymp). The study objectives were to ascertain recruitment and retention rates, carer and healthcare professional (HCP) use of the platform, and completion of online assessments, to inform a full-scale trial. Design: Randomized, parallel, multi-center, feasibility trial. Setting: England and Wales, across diverse MND services; recruitment from July/21 to November/22; last participant follow-up in March/23. Participants: Carers of people with motor neuron disease (PwMND) with BehSymp, recruited through MND services. After confirming eligibility, participants completed screening and baseline assessments online via the MiNDToolkit platform and were randomized centrally in a 1:1 ratio to MiNDToolkit or control. Intervention: MiNDToolkit offered tailored modules to carers for the 3-month study period. Carers in the intervention group could receive additional support from MiNDToolkit trained HCPs. The control group was offered access to the intervention at the end of the study. Data were collected on platform usage and psychosocial variables. Main outcomes: One hundred and fifty-one carers from 11 sites were invited to join the study (letter, face-to-face); 30 were screened; 29 were randomized. Fifteen people were allocated to the control arm; 14 to intervention. Carers were mostly female; median age for was 62.5 (IQR: 58, 68; intervention) and 57 (IQR: 56, 70; controls). Study retention was high (24/29 = 82.76%); carers engaged with the platform on average 14 times (median (IQR):14.0 (10.0, 18.5)) during the study period. Conclusion: The MiNDToolkit study was feasible and well accepted by carers and trained HCPs. A definitive trial is warranted

Challenges in public perception: highlights from the United Kingdom-Brazil Dementia Workshop

In July 2019, Belo Horizonte hosted an international workshop for 27 junior researchers, whose participants were from Brazil and the United Kingdom. This three-day meeting organized by the Universidade Federal de Minas Gerais and the University of East Anglia addressed challenges in cognitive impairment and dementia, with particular interest in public perceptions, diagnosis and care management. The purpose of this report is to highlight the outcomes of the above-mentioned workshop regarding the topic of public perceptions (part I). Discussions focused on differences and similarities between countries, as well as on identifying main issues that required collaborative and creative solutions. After these group discussions, four core themes emerged: I) cognitive impairment; II) dementia - beyond Alzheimer's disease; III) prevention; and IV) stigma. National and international initiatives to deal with public misperceptions about cognitive impairment and dementia were discussed

Longitudinal grey and white matter changes in frontotemporal dementia and Alzheimer's disease

Behavioural variant frontotemporal dementia (bvFTD) and Alzheimer's disease (AD) dementia are characterised by progressive brain atrophy. Longitudinal MRI volumetry may help to characterise ongoing structural degeneration and support the differential diagnosis of dementia subtypes. Automated, observer-independent atlas-based MRI volumetry was applied to analyse 102 MRI data sets from 15 bvFTD, 14 AD, and 10 healthy elderly control participants with consecutive scans over at least 12 months. Anatomically defined targets were chosen a priori as brain structures of interest. Groups were compared regarding volumes at clinic presentation and annual change rates. Baseline volumes, especially of grey matter compartments, were significantly reduced in bvFTD and AD patients. Grey matter volumes of the caudate and the gyrus rectus were significantly smaller in bvFTD than AD. The bvFTD group could be separated from AD on the basis of caudate volume with high accuracy (79% cases correct). Annual volume decline was markedly larger in bvFTD and AD than controls, predominantly in white matter of temporal structures. Decline in grey matter volume of the lateral orbitofrontal gyrus separated bvFTD from AD and controls. Automated longitudinal MRI volumetry discriminates bvFTD from AD. In particular, greater reduction of orbitofrontal grey matter and temporal white matter structures after 12 months is indicative of bvFTD