Assessment of People with Early Dementia and their Families

Assessment of People with Early Dementia and their Families Claudia K Y Lai, RN, PhD Professor, School of Nursing The Hong Kong Polytechnic University Advanced Management of People with Early Dementia for the Medical Professionals 21 st January 2011 Hong Kong

History of Development (Ashford 2008) Time Period Since 1930s Since 1960s Since 1975 Around 1989 Activities developed a wide variety of tests for assessing cognitive function and facilitating clinical screening for dementia many test developers have used classical test theory concepts (unweighted combinations of binary or graded responses [frequently including Likert scaling) to simple tests or questions many tests developed for assessing cognition, memory, and dementia, both for estimating impairment severity, for preliminary evaluation of diagnosis and for predicting dementia development Modern test theory (item response theory and item characteristic curve analysis, specifically estimating level of ability/disability on a defined continuum based on performance) provides a considerably more powerful approach for test development 1 st applied to the use of MMSE

Developing a Diagnostic Test for Dementia & AD What needs to be tested AD Memory is the fundamental focus on a unidimensional continuum Some other causes of dementia - similar to AD Other causes may lead to a different continuum, e.g. fronto-temporal dementia

Rationale The Challenge Dementia syndrome may appear heterogeneous until the underlying vulnerable factor is identified The Approach For screening purposes Multifactorial or empirical approaches when the basic mechanism is not understood For diagnosis More specific tests may be used, e.g., VaD affects white matter cortical connections

A Step-up Approach to Screening & Diagnosis 1 2 3 Evaluation of memory function Further assessment of memory Brief ancillary testing for dysfunction e.g. agnosia, anomia, apraxia & executive impairment Determine the impact of cognitive dysfunction on social and occupational dysfunction

Screening Diagnosis Initial screening tests Short and sensitive tests More detailed assessment Definitive diagnostic evaluation Separate screens for related conditions e.g. VaD, alcohol dependence and depression Important for treatment determination

Tests for MCI & Dementia Screening Types Brief cognitive and memory tests Brief screening questionnaires from informants Global impression scales Telephone screening tests Non-specific brief cognitive tests Secondary longer screening tests & memory assessments Specialty neuropsychological assessments Developments in computerized testing Example Mini-Cog ADL/IADL CDR MMSE-telephone version Clock Drawing Test Mattis Dementia Rating Scale Wechsler Memory Scale CogScreen

Predicting AD Development Chen et al. (2000) A prospective study comparing presymptomatic subjects who later developed AD diagnoses with those who did not Delayed word-list memory & trail making tests had the greatest discriminative power A logistic combination of these tests provided optimum predictive probability of developing AD within 1.5 yrs Elias et al. (2000) A 22-year prospective study Identified retentive memory and abstract reasoning measures as the strongest predictors of further development of AD

Recommended Screening Tests (Ismail et al., 2010) Mini-Cog (Clock drawing & 3-item delayed word recall) Memory Impairment Screen (MIS) (4-item delayed freeand cued- recall) GP-COG (time orientation, clock drawing, report of a recent event, word recall) Montreal Cognitive Assessment (MoCA) (incorporate 5/6 of popular cognitive tests)

About the Gold Standard - MMSE Provides a minimal amount of information in the mild impairment range. Only the three recall items and the date provide relative discrimination at the mild end of the continuum, where discrimination is most critical for dementia screening (Ashford, 2008). Poor sensitivity and specificity for screening purposes, poor precision and high floor effect. Many studies found MMSE as less effective at discriminating between MCI patients and healthy age matched controls (Lonie et al., 2009)

The Newer Montreal Cognitive Administration time ~ 10 min Assessment (MoCA) High sensitivity for MCI (90%) & mild AD (100%) Specificity (87%) [Specificity of MMSE 100%] Freely a/v in 20 languages Useful for those with memory complaints but normal MMSE score

MMSE or MoCA? (Isamil et al., 2010) Characteristics 1.1 Those present with both cognitive impairment and functional decline [likely suffering from dementia] Test Approach Screen with MMSE 1.2 If MMSE is normal Administer MoCA (100% of patients with AD had an abnormal MoCA) 2. For those with cognitive impairment but with functional impairment likely either normal or have MCI not identified by MMSE Administer MoCA first

Problems with Screening Tests (Ashford 2008) The screening tests discussed so far do not adequately account for the probabilities of dementia. It is because cognitive function fails in older individuals as part of the continuum from normal aging to mild dementia. Part of the problem is that AD pathology exists in individuals without a diagnosis of dementia. Older individuals with these pathology changes may not even show any signs of cognitive impairment.

ROC Conceptualization of the Assessment Problem The true positive rate (Sensitivity) is plotted in function of the false positive rate (100-Specificity) for different cut-off points of a parameter. Performance curves for even the most discriminating tests will begin to overlap the normal distribution more and more with less and less pathological changes.

No Particular Tests are Preferable (Ashford 2008) There are numerous tests that have been studied for their efficacy in assessing individuals for the presence of cognitive impairment, dementia and AD. At this time, there is no one test that is clearly better than all of the others

Harm from Screening Complications from further testing Adverse effects of treatment Anxiety generated by investigation and treatment Cost and inconvenience Cost-efficiency The calculation of costworthiness indicates that support for annual screening beginning at 75 years of age. Can be as early as 60 years of age depending on risk factors and other considerations.

Population-based Screening? Despite the benefits of early detection, population-based screening based on age alone is not recommended (Kerwin, 2009). Guidelines recommend focused screening of patients in high-risk groups and on a case-by-case basis (US Preventive Services Task Force, 2003).

Health & Cognitive Assessment Service (HCAS) Integrated Health Clinic, School of Nursing The Hong Kong Polytechnic University In Collaboration with The Hong Kong Alzheimer s Disease Association

Cognitive Assessment Battery used at the HCAS No. Category Assessment Tool 1 Brief cognitive tests (not for use as stand-alone exams) 2 Brief screening questionnaires for knowledgeable informants and inventories of ADL 3 Global impression scales / Staging instruments 4 Secondary, longer screening tests for those positive on preliminary tests 5 Specialty neuropsychological assessments Clock drawing test Digit Span test (Part of the Weschler Adult Intelligence Scale-Revised) MBI, Lawton IADL CDR MMSE ADAS-COG (? to replace MMSE) Montreal Cognitive Assessment (to be used) Fuld Object Learning Test Modified Fuld Verbal Fluency Test

No. Category Other Tests Assessment Tools 1 General Health Brief physical examination Functional health patterns assessment 2 Stress & Coping Single item questions 3 Mood GDS 4 Presence of Agitated Behavior 5 Presence of psychiatric symptoms 6 Other concerns, if any C-CMAI (community version) General mental health assessment

Caregiver Assessment No. Area suggested by Baxter (2000) HCAS Coverage 1. Understanding of dementia 2. Acceptance of dementia 3 Acceptance of deficits and/or behavior 4 Acceptance of changed roles 5 Family communication and interaction pattern 6 Coping strategies & support system 7 Knowledge about resources By observation

Cont d. Caregiver Assessment No. Category Assessment Tools 1 Caregiving burden Zarit Burden Scale 2 General mental health GHQ-12 3 Relating to patient Info required for CDR staging We interview client and family together, except in the case of filling out information for CDR.

HCAS Client Profile To Date

Client Characteristics Characteristics (N=21) % Age (mean ± SD) (75.8 ± 9.2) Female 57.1 Marital Status Single 4.8 Married 61.9 Widowed 28.6 Divorced 4.8 Living Arrangement Living alone 9.5 Living with relatives 90.5

Cont d. Client Characteristics Characteristics (N=21) % Previous occupation Blue collar 28.6 White collar 15.3 No occupation 14.3 Other 42.9 Level of education No formal education 23.8 Primary education 57.1 Secondary education 14.3 Tertiary education 4.8 Source of referral HKADA 33.3 Internet (via Ginkgo [www.ginkgogroup.org]) 33.3 Others (e.g. seminar, friends) 33.3

Cognitive Assessment Profile Assessment Tool (N = 21) Range Mean (SD) MBI [0-20; 21-60; 61-90; 91-99; 100] 67 100 97.1 (8.0) IADL [Full score 27] 0 27 18.6 (8.0) MMSE total [18/19 for illiterate; 20/21 for elementary education; 24/25 for middle school education] 3 30 20.0 (7.0) FOME total storage [Full score 50] 5 48 31.3 (14.6) FOME total retrieval [30/31] 2 45 23.9 (13.2) FOME delayed recall [6/7] 1 10 5.5 (2.5) Modified Verbal Fluency Test [20/19] 8 34 20.7 (6.9) Clock Drawing Test draw a clock [6/7] 0 10 5.6 (4.2) Clock Drawing Test copy a clock [Full score 10] 2 10 7.9 (2.8) CDR overall [0, 0.5, 1, 2, 3] 0.5 2.0 0.9 (0.4) GDS 15 [8/9] 0 14 4.2 (4.4) CMAI [23-161] 15 61 41.1 (12.2)

CDR Overall Rating CDR overall rating Frequency Count (%) 0 No cognitive impairment 0 0.5 Very mild dementia 9 (42.9%) 1.0 Mild dementia 10 (47.6%) 2.0 Moderate dementia 2 (9.5%) 3.0 Severe dementia 0

Correlation between CDR & other Scales Assessment Tool Spearman r p value Modified Barthel Index -0.212 0.355 Lawton IADL -0.670 0.001* MMSE total -0.709 0.000* Digit Span Forward Sequence 0.052 0.828 Digit Span Backward Sequence -0.309 0.185

Cont d. Correlation between CDR & other Scales Assessment Tool Spearman r p value FOME total storage -0.599 0.005* FOME total retrieval -0.602 0.005* FOME delayed recall -0.416 0.068 Modified Verbal Fluency Test -0.419 0.066 Clock Drawing Test -0.678 0.001* GDS -0.105 0.664 CMAI total 0.086 0.712

Caregiver Profile N = 21 (Normal Range) Range Mean (SD) Zarit Burden Scale [<39.5] 6 61 30.6 (16.2) Zarit Burden Scale - overall appraisal [1 no burden; 4 heavily burdened] 1 3 1.8 (1.0) General Health Questionnaire 12 [3/4] 3 21 11.3 (4.9)

Telephone Follow-up at 6 Months No. MMSE FOME (TR) FOME (TS) Verbal Fluency Remark: #2 spoke dialect, the CDR was based on the informant (son). CDR CMAI ZBS Med FU Diagnosis #1 23 23 37 18 0.5 24 24 Yes Druginduced hallucination #2 3 1 29 39 Lost contact #3 29 40 45 34 0.5 43 33 No #4 22 38 46 21 1 28 55 Yes MCI #5 25 29 40 30 0.5 57 42 Lost contact #6 22 19 27 30 1 31 32 Yes Dementia #7 20 30 41 13 1 49 59 Yes Dementia

Summary The chief complaint of most clients is observable memory decline. Most come upon the urge of their family members. Some of the clients presented with a certain degree of agitation. Physical functioning was good in most clients. 76.2% clients were totally independent. Most clients demonstrated various degree of impairment in medication use (73.7%) and money management (65%) in their IADLs. Most of the clients were found to be very mildly cognitively impaired (CDR = 0.5; 42.9%) or mildly cognitively impaired (CDR = 1; 47.6%). Specific memory evaluation in early detection screening is crucial.

Assessment is not just about testing.

Clinical Decision Making Counts Impossible to solve each and every one of their problems in a single visit Deal with the most pressing problem first Highlight the areas that the patient and family were not aware of prior to the assessment Use our practice skills to help family in helping the clients

A useful approach to assessment The combination of information from: 1. cognitive testing 2. a knowledgeable informant 3. a clinician s impression Practice Recommendations (Kerwin, 2009) 1. Avoid cognitive screening solely on the basis of age (Strength of Recommendation 2. Screen vulnerable elderly people at their initial visit and annually thereafter 3. Ensure that all who undergo screening are tested for depression

Summing Up Our Service Clients & Families We serve a particular group of clientele During the telephone follow up, they were thankful to the service (1) for early detection of symptoms of cognitive impairment, and (2) useful and professional suggestions and advice Teaching Nursing Students (1) promote their awareness and knowledge of dementia (2) foster a positive attitude towards caring for clients with dementia and their families (3) enhance their communication skills with clients who are cognitive impaired (4) Identify health and social resources to help clients and their families

The Future (Ashford, 2008) A pressing clinical and academic need for a shorter, more effective, more efficient, and legally free brief assessment tool(s) Computerized testing will likely become more popular, and much more cost-effective than paper-and-pencil testing Screening for memory and other cognitive difficulties could become a monthly activity that would lead to a clinical visit for further assessment if an individual failed in particular criteria.

A Pilot Study on the Development of a Screening Instrument for Early Signs of Cognitive Impairment Claudia K. Y. Lai,1 David L. K. Dai, 2 Elsie O. Y. Chung, 2 Yee-Ming Wu,2 & Carmen Ng, 3 & Barbara Leung 3 1. School of Nursing, Faculty of Health and Social Sciences, The Hong Kong Polytechnic University (PolyU) 2. The Hong Kong Alzheimer s Disease Association (HKADA) 3. Senior Citizens Home Safety Association (SCHSA) Annual Congress of Gerontology 24 November, 2007

The BHU Position on Screening of Cognitive Impairment This telephone survey targeted at a population who would become vulnerable if cognitive impairment developed. They would then require additional support. Screening of MCI in the community in Hong Kong has become widespread; however MCI as a pre-dementia state require vigorous clinical evaluation. The treatment implications of being diagnosed as MCI is still being explored. Adequate diagnostic and psychological support should be available after being diagnosed. We advocate primarily early detection of early dementia and identify probable MCI secondarily during the process, but adequate diagnostic and psychological support should be available after an individual has been diagnosed.

References Ashford, J.W. (2008). Screening for memory disorders, dementia and Alzheimer s disease. Aging and Health, 4(4), 339-432. Baxter, E. C. (2000). Caregiver assessment: learn about the caregiver, distinct from the person with dementia. Alzheimer s care quarterly, 1(3), 62-70. Chen, P., Ratcliff, G., Belle, S.H., Cauley, J.A., DeKosky, S.T., & Ganguli, M. (2000). Cognitive tests that best discriminate between presymptomatic Alzheimer disease and those who remain nondemented. Neurology, 55(12), 1847-1853. Elias, M.F., Beiser, A., Wolf, P.A., Au, R., White, R.F., D Agostino, R.B., & Roberta, F. (2000). The preclinical phase of Alzheimer disease: a 22-year prospective study of the Framingham cohort. Archives of Neurology, 57(6), 808-813. Ismail, Z., Rajji, T. K., & Shulman, K.I. (2010). Brief cognitive screening instruments: an update. International Journal of Geriatric Psychiatry, 25, 111-120. Kerwin, D.R. (2009). How to prevent a delayed Alzheimer s diagnosis. The Journal of Family Practice, 58(1), 9-15. Petersen, R. C., Roberts, R.O., Knopman, D. S., Boeve, B. F., Geda, Y.E., Ivnik, R. J., Jack Jr, C. R. (2009). Mild cognitive impairment, ten years later. Archives of Neurology, 66(12), 1447-1455. Lonie, J.A., Tierney, K. M. & Ebmeier, K.P. (2009). Screening for mild cognitive impairment: a systematic review. International Journal of Geriatric Psychiatry, 24, 902-915. US Preventive Services Task Force Screening for dementia: recommendations and rationale. June 2003. Available at: http://www.ahcpr.gov/clinic/3rduspstf/dementia/dementrr.htm. Accessed Jan 18, 2011.

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