Burden of behavioral and psychiatric symptoms in people screened positive for dementia in primary care results of the DelpHi-study René Thyrian

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1 Burden of behavioral and psychiatric symptoms in people screened positive for dementia in primary care results of the DelpHi-study René Thyrian German Center for Neurodegenerative Diseases (DZNE), site Rostock/Greifswald Institute for Community Medicine, Dept. Epidemiology of Health Care and Community Health, University Medicine Greifswald Ljubljana,

2 German Center for Neurodegenerative Diseases (DZNE) DZNE is a single entity existing at 9 different locations, where science is strategically aimed to find prevention and cures for neurodegenerative diseases. The aim is to identify new diagnostic markers and rapidly develop possible new therapies. To accomplish this, the DZNE follows an interdisciplinary research approach. Population Clinical Fundamental Health Care Research System Biomedicine Disease Modelling

3 GREIFSWALD

4 DelpHi-MV Dementia: life- and person-centered help in Mecklenburg-Western Pomerania GP-based cluster - randomised intervention trial to implement and evaluate an innovative concept of collaborative Dementia Care Management in Germany

5 DelpHi-MV: Design Intervention group GP practice patients 70 DemTect < 9 Patients home Baselineassessment Intervention Provision of Dementia Care Manager Patients home Follow-up assessment (annually) Inclusion of GP practices R Control group GP practice patients 70 DemTect< 9 pt. Patients home Baselineassessment care as usual Patients home Follow-up assessment (annually) Thyrian et al., Trials 2012

6 What happened so far approved by ethical commitee registration as clinical trial end of baseline recruitement baseline pilot main study follow-up 1 follow-up 2,3

7 DemTect - screening at GP practices primary care patients 70 years, living at home eligible: DemTect-score < 9 Informed consent of GP practices N=136 Patients screened ( 70 years, community-dwelling) N=6.838 patients at n=125 GP practices Eligible patients (DemTect < 9) n= patients (17.1%) at n=105 GP practices Informed consent n= 634 patients (54.4%) at n=95 GP practices Start Baseline assessment n=516 patients at n=94 GP practices Before baseline assessment Dead: n=19 Drop out: n= 99 - Withdrawal IC: n=85 - Moving away: n=5 - Others: n=9

8 DelpHi-MV: Instruments used for assessment Baseline Assessment SIDAM/SISCO: Severity grading of cognitive dysfunction: Structured Interview for the Diagnosis of Dementia B-ADL: Bayer Activities of Daily Living Scale GDS: Geriatric Depression Scale Qol-AD: Quality of Life - Alzeimer s Disease SF-12: 12-Item Short Form Health Survey (Health-related quality of life) STEP: Extract from Standardized Assessment of Elderly People in primary care (General state of health / Comorbidities) F-SozU: Fragebogen zur sozialen Unterstützung ICD-10 Diagnoses (Patient record ): Medical status Medication Assessment: drug intake, drug-related problems, potentially inadequate medications, adherence NPI: Neuropsychiatric Inventory (neuropsychiatric symptoms) RUD: Resource Utilization in Dementia (Informal care) BIZA-D: Berliner Inventar zur Angehörigenbelastung Demenz BSI: Brief Symptom Inventory PHQ-D: Patient Health Questionnaire Sociodemographic characteristics/social environment Informations about PwD Utilization of health care resources/social services/nursing aids Knowledge about dementia, treatment options and health care/social services In-depth assessment (Intervention) MMSE: MINI Mental State Exam (Cognitive performance) M.I.N.I. Depression: Mini International Neuropsychiatric Interview BESD: Beurteilung von Schmerzen bei Demenz CDR: Clinical Dementia Rating CareNapD: Care Needs Assessment for Dementia HABC: Healthy Age Brain Monitor (Caregiver Burden) Timed up & go: Restriction in mobility Tinetti-Test: Risk of falling Standard assessment conducted at each intervention visit (emergencies, state of health, medical consultations, hospitalisation, changes in medication, falls, pain, change in cognitive impairment, liquid intake, blood pressure, blood sugar) Neurological or psychiatric symptoms Suitability for rehabilitation Severity of dementia L

9 Background In Germany, the majority of PWD live at home Caregiving is provided predominantly by informal caregivers on a voluntary basis. Dementia caregiving leads to health and emotional consequences, including greater perceived stress, depression, social isolation, poor diet, diabetes, poor overall physical health etc

10 Special attention Neuropsychiatric symptoms in PWD have been found to be associated with distress of informal caregivers. i.e. angry behavior is associated with caregiver depression and apathy with a deterioration of the relationship between PWD and the caregiver Neuropsychiatric symptoms were identified as one common reason for the transition of PWD into nursing care. To delay institutionalization, early service utilization of PWD living in the community has been proven to be effective.

11 There have been studies before, but There is limited information about the relation between symptoms, their severity, and the amount of distress they impose on the caregiver. i.e. common or frequent symptoms are not necessarily the most distressing or most predictive for caregiver depression. There is a selection bias (formal diagnosis, specialists settings) Dementia is underdiagnosed in primary care, utilisation of services is low

12 Objectives (a) Examine different neuropsychiatric symptoms in persons screened positive for dementia in primary care with regard to their frequency, severity, and their impact on the distress of the caregiver (b) Compare persons with and without neuropsychiatric symptoms in regard to sociodemographics, carerelated, and disease-related variables (c) Identify variables related to the presence of neuropsychiatric symptoms that may serve as indicator or moderator variables and/or provide targets for interventions.

13 Behavioral and neuropsychiatric symptoms Neuropsychiatric inventory (NPI, Cummings, 1997) interview by proxy on 12 dimensions of neuropsychiatric behaviors ten behavioral and two neurovegetative dimensions 1. caregiver is asked a screening question whether or not the behavioral problem is present. 2. if yes, several subquestions are asked to explore the domain in more detail. 3. Caregiver is asked to rate the frequency [rarely (1) to very often (4)] and severity [mild (1) to severe (3)] of the most aberrant behavior. The product of both scores yields the NPI score for this domain (range 1-10) 3. Caregiver is asked to rate the distress associated with this domain with not at all (0) to very severely or extremely (5). A total NPI-score as well as a total distress score can be calculated by adding the scores of each domain into one total score and divide it by the number of domains.

14 Statistics 2 groups are of special interest the group without any neuropsychiatric symptoms, defined as having a NPI score = 0 the group with neuropsychiatric symptoms, being defined as having a NPI score = 1 in at least one of any of the twelve dimensions. Factors associated with NPI-scores are of interest: age, gender, cognitive impairment, ADL, formal diagnosis of dementia, gender of the caregiver, relationship, and living together as predictors. N=221 cases due to missing data in at least one of assessments Multivariate linear regression with fixed effects for the GPpractices

15 Results: the sample

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17 Presence and frequency of neuropsychiatric symptoms

18 Thyrian et al, JAD 2015 Frequency of neuropsychiatric symptoms Appetite and Eating change Sleep and Night-time behavior change Aberrant motor behavior Apathy Euphoria Disinhibition Irritability Anxiety Dysphoria/Depression Agitation/Aggression Delusions Hallucinations 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% very often often sometimes rarely symptom not present caregiver distress in 12 dimensions of the NPI, m=6.11, SD=8.1 (range 0-49); PWD=persons with dementia

19 Severityof neuropsychiatric symptoms

20 Caregiver distress (NPI-12, when symptom present) Appetite and Eating change Sleep and Night-time behavior change Aberrant motor behavior Apathy Euphoria Disinhibition Irritability Anxiety Dysphoria/Depression Agitation/Aggression Delusions Hallucinations 0% 10% 20% 30% 40% 50% 60% 70% 80% 90%100% severely to extremely moderately minimal to mildly not at all caregiver distress in 12 dimensions of the NPI, m=6.11, SD=8.1 (range 0-49); PWD=persons with dementia Thyrian et al, JAD 2015

21 Factors associated with neuropsychiatric symptoms

22 Conclusions Every third person is affected by symptoms like depression, aggression, or irritability It is a clinically relevant issue in primary care The frequency and severity was rather low And, every 5 th caregiver did not indicate distress upon presence of symptom However, every third caregiver indicated severe distress when the symptom was delusions, aggression, depression, anxiety, and disinhibition ADL is associated to neuropsychiatric symptoms ADL might be a good intervention target

23 Limitations Cross-sectional analysis Association not prediction longitudinal data will follow in 2016 Limited generalisabilty and comparability Specific (understudied) sample of mild to moderately impaired PWD, symptoms are likely to increase in prevalence, severity, and consequential distress sample relevant to provide early and optimum care

24 Thank you for your attention!

25 some more reading! Eichler T*, Wucherer D, Thyrian J, et al. Antipsychotic drug treatment in ambulatory dementia care: prevalence and correlates. Journal of Alzheimers Disease 2015; 43(4): Eichler T*, Thyrian J, Dreier A, et al. Dementia care management: going new ways in ambulant dementia care within a GP-based randomized controlled intervention trial. International Psychogeriatrics. 2014; 26(2): Eichler T*, Thyrian J, Hertel J, et al. Rates of formal diagnosis in people screened positive for dementia in primary care: Results of the DelpHi-trial. Journal of Alzheimers Disease. 2014; 42(2): Fiß T*, Thyrian J*, Wucherer D, et al. Medication management for people with dementia in primary care: description of implementation in the DelpHi study. BMC Geriatrics. 2013; 13(1):121. Teipel S*, Thyrian J, Hertel J, et al. Neuropsychiatric Symptoms In Subjects Screened Positive For Dementia In Primary Care. International Psychogeriatrics 2015; 27(1): Thyrian J*, Eichler T, Hertel J, et al. Burden of behavioral and psychiatric symptoms in people screened positive for dementia in primary care results of the DelpHi-study. Journal of Alzheimers Disease 2015; Thyrian J*, Fiß T, Dreier A, et al. Dementia: Life- and personcentered help in Mecklenburg-Western Pomerania, Germany (DelpHi) study protocol for a randomised controlled trial. TRIALS 2012; 13(1):56. Wucherer D*, Eichler T, Kilimann I, et al. Antidementia drug treatment in people screened positive for dementia in primary care. Journal of Alzheimers Disease 2015; 44(3):

26 Antidementive drug treatment about 29% of patients screened positive for dementia received at least one antipsychotic drug 38% of these patients were not formally diagnosed with dementia Galantamine, n=8 (11.1%) Rivastigmine, n=10 (13.9%) 8.3% 2.8% 12.5% 1.4% PWD with formal diagnosis of dementia (ICD-10) PWD without formal diagnosis of dementia (ICD-10) Donepezil, n=22 (30.5%) 19.4% 11.1% 22.3% 22.3% Memantine, n=32 (44.5%) 62.5% 37.5% All antidementia drugs, n=72 (100%) % Wucherer et al., JAD 2015

27 Eichler et al., JAD 2015 Antipsychotic drug treatment about 10% of patients screened positive for dementia received at least one antipsychotic drug - typical antipsychotics: 36% - atypical antipsychotics: 64% Promethazine 3.5% Haloperidol 4.5% Typical antipsychotics Melperon 11% Pipamperon 18% Sulpirid Quetiapin 11% 21% Atypical antipsychotics Risperidon 32%

28 Association between medication use and NPI-scores Overall, antipsychotics use was significantly associated with higher total NPI scores Contrary to expectations, use of antipsychotics was associated with anxiety, apathy, disinhibition, aberrant motor behavior, In contrast overall antipsychotics use was not significantly associated with a clinically higher NPI scores in the dimensions of hallucinations or delusion Use of any antidepressant, sedative, antiepileptic, or antidementive drug or use of choline-esterase inhibitors was not associated with higher total NPI scores

29 Invitation for applications for the joint appointment of a professor (W3) at the Ernst-Moritz- Arndt-University Greifswald and the DZNE The DZNE (German Center for Neurogegenerative Diseases) in Rostock/ Greifswald and the Medical Faculty of the University of Greifswald are seeking to appoint an experienced researcher as soon as possible for the position of a Full professor (W3) in Health care research with a focus on neurodegenerative diseases.the site in Rostock/ Greifswald focuses on translating epidemiology of dementia care as well as clinical dementia research into primary care. Research areas covered at the site include clinical research, population-based clinical research, interventional health care research and analytical epidemiology/ translational research. The professorship will add epidemiological and methodological expertise with focus on neurodegenerative diseases. The successful candidate will have a professional background in one of following areas: epidemiology, neurology, psychology, psychiatry, geriatrics, social sciences or related areas and must provide a competitive record in the field of research and methods.the position offers a long term research perspective in clinical and epidemiological research in the field of neurodegenerative diseases. It is embedded in an international, multidisciplinary and highly competitive scientific environment.

30 THANK YOU

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32 Caregiver distress (NPI-12, when symptom present)

33 Patient characteristics

34 Association with participant s characteristics Significant association between clinically relevant neuropsychiatric symptoms and resource utilisation/ caregiver distress, not quality of life; independent from age/ sex of Cognitive status contributes independently to the model Association was driven by the dimensions of: Agitation Apathy Irritability aberrant motor behavior, anxiety, appetite and eating changes