Behavioral Health Issues
Behavioral and Psychological Symptoms of Dementia
Key to the experience of some adults with dementia is expressions of various behaviors that may had not been part of that person’s life. Generally, termed behavioral and psychological symptoms of dementia (BPSD), they may include agitation, depression, apathy, repetitive questioning, psychosis, aggression, sleep problems, wandering, and a variety of inappropriate behaviors. Some examples of agitation include physical or verbal aggression, general emotional distress, restlessness, pacing, shredding paper or tissues and/or yelling). At times delusions (firmly held belief in things that are not real) and hallucinations (seeing, hearing or feeling things that are not there) may also be present. The Alzheimer’s Association (US) notes that are potential causes (stimulants) for behavioral and psychiatric symptoms including one of more of the following:
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Pain, or an underlying infection or medical illness (injury, urinary tract infection, ear infection, pneumonia, etc.)
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Prescription drug interactions
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Moving to a new residence
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Changes in the environment or caregiver arrangements
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Misperceived threats
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Fear and fatigue resulting from trying to make sense out of a confusing world.
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Uncorrected visual or hearing loss
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Hospitalization
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Bathing
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Being asked to do something that has become difficult due to the person’s declining cognitive skills
BPSDs are found in adults with intellectual disability living with dementia and often the same techniques that are applied with adults in the general population will apply with regard to non-pharmacological interventions with adults with intellectual disability.
In this resource section we include a curated listing of guides and reports from the literature that reference BPSDs in general and those that apply to adults with intellectual disability.
BPSD Guidelines & Literature Reports
A Clinician’s Field Guide to Good Practice Managing Behavioural and Psychological Symptoms of Dementia
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/
A Guide for Family Carer - Dealing with Behaviours in People with Dementia
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
Assessment and Management of People with Behavioural and Psychological Symptoms of Dementia (BPSD)
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
Behaviour Management - A Guide to Good Practice: Managing Behavioural and Psychological Symptoms of Dementia
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 of Alzheimer’s disease in Down syndrome and its impact on caregiver distress
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 of Alzheimer’s disease in Down syndrome and its impact on caregiver distress
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
Prevalence of behavioural and psychological symptoms of dementia in individuals with learning disabilities
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
The Behavioral and Psychological Symptoms of Dementia in Down Syndrome (BPSD-DS) Scale: Comprehensive assessment of psychopathology in Down syndrome
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
Miscellaneous Articles
de Medeiros, K., Robert, P., Gauthier, S., Stella, F., Politis, A., Leoutsakos, J., Taragano, F., Kremer, J., Brugnolo, A., Porsteinsson, A. P., Geda, Y. E., Brodaty, H., Gazdag, G., Cummings, J., & Lyketsos, C. (2010). The Neuropsychiatric Inventory-Clinician rating scale (NPI-C): reliability and validity of a revised assessment of neuropsychiatric symptoms in dementia. International Psychogeriatrics, 22(6), 984–994. https://doi.org/10.1017/S1041610210000876
Neuropsychiatric symptoms (NPS) affect almost all patients with dementia and are a major focus of study and treatment. Accurate assessment of NPS through valid, sensitive and reliable measures is crucial. Although current NPS measures have many strengths, they also have some limitations (e.g. acquisition of data is limited to informants or caregivers as respondents, limited depth of items specific to moderate dementia). Therefore, we developed a revised version of the NPI, known as the NPI-C. The NPI-C includes expanded domains and items, and a clinician-rating methodology. This study evaluated the reliability and convergent validity of the NPI-C at ten international sites (seven languages). Face validity for 78 new items was obtained through a Delphi panel. A total of 128 dyads (caregivers/patients) from three severity categories of dementia (mild = 58, moderate = 49, severe = 21) were interviewed separately by two trained raters using two rating methods: the original NPI interview and a clinician-rated method. Rater 1 also administered four additional, established measures: the Apathy Evaluation Scale, the Brief Psychiatric Rating Scale, the Cohen-Mansfield Agitation Index, and the Cornell Scale for Depression in Dementia. Intraclass correlations were used to determine inter-rater reliability. Pearson correlations between the four relevant NPI-C domains and their corresponding outside measures were used for convergent validity. Inter-rater reliability was strong for most items. Convergent validity was moderate (apathy and agitation) to strong (hallucinations and delusions; agitation and aberrant vocalization; and depression) for clinician ratings in NPI-C domains. Overall, the NPI-C shows promise as a versatile tool which can accurately measure NPS and which uses a uniform scale system to facilitate data comparisons across studies.