Behavioral Health Issues

The information contained in this Australian guide is a modified summary of the document Behaviour Management - A Guide to Good Practice, Managing Behavioural and Psychological Symptoms of Dementia (2012). This field guide provides casual points for consideration for clinicians in their role of assisting residential care staff, community care staff, and family members caring for persons living with dementia, who present with behavioral and psychological symptoms of dementia (BPSD).

Source: Dementia Collaborative Research Centre – Assessment and Better Care (DCRC-ABC) at UNSW Australia (The University of New South Wales) 2014. https://dementiaresearch.org.au/resources/bpsdguide/

The information contained in this Guide is a summary of the document Behaviour Management - A Guide to Good Practice, Managing Behavioural and Psychological Symptoms of Dementia (2012) and directed toward family caregivers.

Source: Dementia Support Australia. https://www.dementia.com.au/resource-hub/a-guide-for-family-carers-dealing-with-behaviours-in-people-with-dementia

This Australian practical handbook is a reference for health staff working in settings where they will care for people with dementia and BPSD. The handbook presupposes that a person with dementia and behavioral disturbance may be viewed as ‘a difficult or disruptive person’, particularly if the clinician has little experience in this area. Although the behavior may be challenging, the person is unwell and
requires care. The key principles for providing care are: 1. Person-centered care (emphasizing understanding the person, not the behavior or disease to be ‘‘managed’’); Multidisciplinary and multi-team care (clinical challenges requiring expertise from different health professions); and 3. Legal and ethical responsibilities (diminished capacity for consent forces health professionals to consider ethical and legal challenges).

Source: NSW Ministry of Health and the Royal Australian and New Zealand College of Psychiatrists. (May 2013). Assessment and Management of People with Behavioural and Psychological Symptoms of Dementia (BPSD). https://www.ranzcp.org/files/resources/reports/a-handbook-for-nsw-health-clinicians-bpsd_june13_w.aspx

This Australian document provides guidance for clinicians in their role of assisting residential aged care facility staff, community care staff and family members caring for persons living with dementia, who present with behavioral and psychological symptoms of dementia (BPSD). A comprehensive evidence and practice-based overview of BPSD management principles provides practical strategies and interventions for assisting care staff and family carers to manage behaviors in dementia.

Neuropsychiatric symptoms (NPS) are non-cognitive manifestations common to dementia and other medical conditions, with important consequences for the patient, caregivers, and society. Studies investigating NPS in individuals with Down syndrome (DS) and dementia are scarce. Objective: Characterize NPS and caregiver distress among adults with DS using the Neuropsychiatric Inventory (NPI). Methods: We evaluated 92 individuals with DS (≥30 years of age), divided by clinical diagnosis: stable cognition, prodromal dementia, and AD. Diagnosis was determined by a psychiatrist using the Cambridge Examination for Mental Disorders of Older People with Down’s Syndrome and Others with Intellectual Disabilities (CAMDEX-DS). NPS and caregiver distress were evaluated by an independent psychiatrist using the NPI, and participants underwent a neuropsychological assessment with Cambridge Cognitive Examination (CAMCOG-DS). Results: Symptom severity differed between-groups for delusion, agitation, apathy, aberrant motor behavior, nighttime behavior disturbance, and total NPI scores, with NPS total score being found to be a predictor of AD in comparison to stable cognition (OR for one-point increase in the NPI = 1.342, p  = 0.012). Agitation, apathy, nighttime behavior disturbances, and total NPI were associated with CAMCOG-DS, and 62% of caregivers of individuals with AD reported severe distress related to NPS. Caregiver distress was most impacted by symptoms of apathy followed by nighttime behavior, appetite/eating abnormalities, anxiety, irritability, disinhibition, and depression (R2  = 0.627, F(15,76) = 8.510, p  < 0.001). Conclusion: NPS are frequent and severe in individuals with DS and AD, contributing to caregiver distress. NPS in DS must be considered of critical relevance demanding management and treatment. Further studies are warranted to understand the biological underpinnings of such symptoms.

Source: Fonseca, L.M., Mattar, G.P., Haddad, G.G., Burduli, E., McPherson, S.M., Guilhoto, L.M., Yassuda, M.S., Busatto, G.F., Bottino, C.M., Hoexter, M.Q., Chaytor, N.S. (2021). Neuropsychiatric Symptoms of Alzheimer’s Disease in Down Syndrome and Its Impact on Caregiver Distress, Journal of Alzheimer's Disease, 81(1), 137-154 .DOI: 10.3233/JAD-201009

Neuropsychiatric symptoms (NPS) are non-cognitive manifestations common to dementia and other medical conditions, with important consequences for the patient, caregivers, and society. Studies investigating NPS in individuals with Down syndrome (DS) and dementia are scarce. Authors shrived to characterize NPS and caregiver distress among adults with DS using the Neuropsychiatric Inventory (NPI). Methods: We evaluated 92 individuals with DS (≥30 years of age), divided by clinical diagnosis: stable cognition, prodromal dementia, and AD. Diagnosis was determined by a psychiatrist using the Cambridge Examination for Mental Disorders of Older People with Down’s Syndrome and Others with Intellectual Disabilities (CAMDEX-DS). NPS and caregiver distress were evaluated by an independent psychiatrist using the NPI, and participants underwent a neuropsychological assessment with Cambridge Cognitive Examination (CAMCOG-DS). Results showed that symptom severity differed between-groups for delusion, agitation, apathy, aberrant motor behavior, nighttime behavior disturbance, and total NPI scores, with NPS total score being found to be a predictor of AD in comparison to stable cognition (OR for one-point increase in the NPI = 1.342, p = 0.012). Agitation, apathy, nighttime behavior disturbances, and total NPI were associated with CAMCOG-DS, and 62% of caregivers of individuals with AD reported severe distress related to NPS. Caregiver distress was most impacted by symptoms of apathy followed by nighttime behavior, appetite/eating abnormalities, anxiety, irritability, disinhibition, and depression (R2 = 0.627, F(15,76) = 8.510, p < 0.001). Authors note that NPS are frequent and severe in individuals with DS and AD, contributing to caregiver distress. NPS in DS must be considered of critical relevance demanding management and treatment. Further studies are warranted to understand the biological underpinnings of such symptoms.

Source: Fonseca, L.M., Mattar, G.P., Haddad, G.G., Burduli, E., McPherson, S.M., Guilhoto, L.M., Yassuda, M.S., Busatto, G.F., Bottino, C.M., Hoexter, M.Q., & Chaytor, N.S. (2021). Neuropsychiatric Symptoms of Alzheimer’s Disease in Down Syndrome and Its Impact on Caregiver Distress. Journal of Alzheimer's Disease, 81, 137 - 154. https://www.semanticscholar.org/paper/Neuropsychiatric-Symptoms-of-Alzheimer%E2%80%99s-Disease-in-Fonseca-Mattar/710494ac155566d9b861825cff9e8b0104b6d6a0

A review of 23 studies investigating the prevalence of behavioral and psychological symptoms of dementia (BPSD) in the general and intellectual disability population and measures used to assess BPSD was carried out. BPSD are non-cognitive symptoms, which constitute as a major component of dementia regardless of its subtype. Research has indicated that there is a high prevalence of BPSD in the general dementia population. There are limited studies, which investigate the prevalence of BPSD within individuals who have intellectual disabilities and dementia. Findings suggest BPSDs are present within individuals with intellectual disabilities and dementia. Future research should use updated tools for investigating the prevalence of BPSD within individuals with intellectual disabilities and dementia.

Source: Devshi, R., Shaw, S., Elliott-King, J., Hogervorst, E., Hiremath, A., Velayudhan, L., Kumar, S., Baillon, S., & Bandelow, S. (2015). Prevalence of Behavioural and Psychological Symptoms of Dementia in Individuals with Learning Disabilities. Diagnostics (Basel, Switzerland), 5(4), 564–576. https://doi.org/10.3390/diagnostics5040564

People with Down syndrome (DS) are prone to develop Alzheimer’s disease (AD). Behavioral and psychological symptoms of dementia (BPSD) are core features, but have not been comprehensively evaluated in DS. In a European multidisciplinary study, the novel Behavioral and Psychological Symptoms of Dementia in Down Syndrome (BPSD-DS) scale was developed to identify frequency and severity of behavioral changes taking account of life-long characteristic behavior. 83 behavioral items in 12 clinically defined sections were evaluated. The central aim was to identify items that change in relation to the dementia status, and thus may differentiate between diagnostic groups. Structured interviews were conducted with informants of persons with DS without dementia (DS, n = 149), with questionable dementia (DS+Q, n = 65), and with diagnosed dementia (DS+AD, n = 67). First exploratory data suggest promising interrater, test-retest, and internal consistency reliability measures. Concerning item relevance, group comparisons revealed pronounced increases in frequency and severity in items of anxiety, sleep disturbances, agitation & stereotypical behavior, aggression, apathy, depressive symptoms, and eating/drinking behavior. The proportion of individuals presenting an increase was highest in DS+AD, intermediate in DS+Q, and lowest in DS. Interestingly, among DS+Q individuals, a substantial proportion already presented increased anxiety, sleep disturbances, apathy, and depressive symptoms, suggesting that these changes occur early in the course of AD. Future efforts should optimize the scale based on current results and clinical experiences, and further study applicability, reliability, and validity. Future application of the scale in daily care may aid caregivers to understand changes, and contribute to timely interventions and adaptation of caregiving.

Source: Dekker, Alain D. et al. ‘The Behavioral and Psychological Symptoms of Dementia in Down Syndrome (BPSD-DS) Scale: Comprehensive Assessment of Psychopathology in Down Syndrome’. Journal of Alzheimer's Disease, 2018, 63(2), 797-819. https://content.iospress.com/articles/journal-of-alzheimers-disease/jad170920