Behavioural and Psychological Symptoms of Dementia P I

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1 Behavioural and Psychological Symptoms of Dementia (BPSD) Toolkit S P I E C E College of Family Physicians and P.I.E.C.E.S. Canada Supported by a grant from the Ministry of Health and Long Term Care August 24, 2009

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3 Acknowledgements A Special thanks to the P.I.E.C.E.S. Consult Group and the Ontario College of Family Physicians BPSD Handbook Development Group, including W. Dalziel, M.F. Rivard, J. Feightner, S. Feldman, J. Puxty, J.K. Le Clair, A. Hurtubise and D. Harris. Tools, information sheets, frameworks, and algorithms have been included that have been identified and/or developed by leaders in the field including individuals involved the Mobile Interprofessional Coaching Team (MICT II) project, supported by HealthForceOntario, at Providence Care, Kingston, Ontario. The content was gathered by January We would also like to acknowledge the kindness of many original authors and organizations that have developed informative material that they have published and allowed us to use or have made available in a public domain. Please see individual tools for authors. Finally we would like to acknowledge Eilyn Rodriguez and Sarah Clark for their wonderful support. 3

4 Use of Standardized Assessment Instruments in Collaborative Care Because using standardized assessment instruments take extra time, we often pass them over, feeling the time and effort is not worth it. What we miss is an opportunity to enhance the assessment, communication and clinical care planning. Such instruments do not replace a holistic person assessment but rather augment our findings. Some of the advantages in using assessment instruments include: Improving communication with our colleagues. In discussing results of mutually agreeable instruments, there is a common language to measure clinical findings. Assist in characterizing the population they serve. For example, the Mini Cog provides some understanding of what the person s cognitive status is at that time, rather than descriptions such as quite confused. Standardized measures can be used to document change in clinical presentation. For example, a depression scale, such as the Cornell can be used to measure whether or not the patient s symptoms are changing over time. Assessment instruments can be used to solve specific clinical problems and for the planning of clinical interventions. For example, the Cohen-Mansfield Agitation Scale can be used to identify specifically what the problem behaviours are and assist Long Term Care Home staff in implementing the appropriate interventions. Standardized assessment tools can be excellent in teaching clinical assessment to students or colleagues. It helps the clinician understand the areas to be assessed and can even help structure the interview. At other times the results of a standardized assessment tool such as the Clock Drawing Test can be used when appropriate to assist families in understanding why their loved one is no longer able to function as before. Standardized assessment tools augment the information gained in an interview but are not diagnostic. For example, an individual who does poorly on the Mini Cog may not have an irreversible cognitive impairment, but rather a medical illness or excessive medication. 4

5 Introduction The intention of this toolkit is to enable primary care providers with a ready to use reference in the detection, assessment and management of cognitive impairment/dementia and co-morbid chronic mental and physical health disorders. The recommended tools are to be used in consideration of the unique clinician, setting, and patient. The toolkit is organized as follows A) It is divided into topic-specific toolkits focusing on geriatric mental and physical health topics, allowing for quick reference depending on the issue presenting. B) Each topic specific toolkit includes: (1) Support tools recommended for periodic health exams. These are intended to be used within practice at an individual s periodic health exam to promote early detection as well as prevent disability. (2) Support tools recommended for use when an individual presents with an issue that may be a result of a cognitive impairment. C) This toolkit also identifies tools suggested for use by the single practitioner, as well as those that are more suited for collaborators with the single primary practitioner. D) Tools are designated into two categories as indicated on the instrument: A Tools / instruments assessed for reliability and validity* B Frameworks and checklists to assist in assessment and shared support planning. *If a screening instrument is reliable and valid, this does not necessarily mean that routine screening has been proven beneficial. Also, a reliable and valid diagnostic instrument does not necessarily mean that it is sufficient on it s own to confirm that a diagnosis exists. 5

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7 A// DEMENTIA / COGNITION 9 Dementia / Cognition Algorithms 9 Dementia Algorithm: Decision Tree for Tool Use 11 Primary Care Protocol for Behavioural and Psychological Symptoms of Dementia (BPSD) 13 Tools for Flagging High Risk Individuals 15 Detecting Dementia Medical Checklist 17 Dementia Risk Calculator Warning Signs for Caregivers Warning Signs for Professionals 25 Tools for Dementia / Cognition Assessment and Management 27 Detecting Dementia / Cognition Recommended Tools 27 Mini Cog Plus 29 Montreal Cognitive Assessment (MoCA) 35 Clock Drawing 41 Detecting Dementia / Cognition: Other Tools 45 Mini Mental State Exam (MMSE) 47 Types of Dementia 49 Determining Types of Dementia 51 Determining Staging of Dementia 53 Functional Assessment Staging (FAST) 55 Lawton Brody 59 Investigations and Labs 63 Investigations and Labs 65 Dementia Collaborative Care Tools 69 Three-Question Template and Summary of U-FIRST / P.I.E.C.E.S 71 P.I.E.C.E.S. Aid for Family Physicians 73 Kingston Standardized Behavioural Assessment (KSBA) 75 Is it Alzheimer s Disease? 10 Warning Signs 101 Dementia Observation System (DOS) 103 Dementia Observation System (DOS) for Families D s to Define Severity: Monitoring Response for Behaviour and Psychosis 109 U-First Wheel (Obtain from B// CONDITIONS EITHER ASSOCIATED AND/OR RESPONSIBLE FOR COGNITIVE IMPAIRMENT 113 Delirium 113 Periodic Health Exam Tools for Screening / Identification 113 Red Flags for Potential Delirium 115 Tools for Delirium Assessment / Management 117 Confusion Assessment Method (CAM) (see Algorithm for Diagnosing Delirium 121 Causes for Delirium Checklist 123 Causes of Delirium: DELIRIUMS 125 CHAOS 127 Depression 129 Office and Primary Care Checklists 129 Signs of Depression: SIG E CAPS 131 Tools for Mood / Anxiety Assessment and Management 133 Cornell Scale for Depression 135 7

8 NICE Job Aid 139 C// PHARMACOLOGICAL NON PHARMACOLOGICAL APPROACHES 141 Pharmacological Approaches 141 Behavioural and Psychological Approaches to Dementia (BPSD) Algorithm 143 Psychotropic Job Aids 145 Psychotropic Job Aids for Physicians 147 Psychotropic Job Aids for Collaborators 149 Cognitive Enhancers: Monitoring Side Effects 151 Non Pharmacological Approaches 153 Crisis Intervention: Non Pharmacological Approaches 155 Top 8 Non Pharmacological Approaches 157 8

9 DEMENTIA / COGNITION TOOLKIT Dementia / Cognition Algorithm Dementia Algorithm: Decision Tree for Tool Use Primary Care Protocol for Behavioural and Psychological Symptoms of Dementia (BPSD) 9

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11 Dementia Algorithm: Decision Tree for Tool Use Periodic Health Exam Triggers to Possible Cognitive Impairment Screening & Identification Triggers 1) Is individual s age greater than 75 yrs and/or 2)Does individual have family history of dementia? and/or 3) Does individual have multiple vascular risk factors? Consider using Dementia Risk Calculator Consider Office Red Flags 1) Detecting Dementia Medical Checklist 2) Primary Care Office Behavioural Checklist Reassess at next health exam Assessment/ Management Toolkit Recommended for screening cognition 1) Mini Cog + 2) MOCA 3) Clock Drawing *If no cognitive difficulties detected, document as baseline Additional tools for screening cognition 1) MMSE 2) Self Test Recommended Tools for Types of Dementia & Staging 1) FAST 2) Types of Dementia Episodic Health Exam Triggers to Consider Cognitive Impairment as a factor in Assessment & Management Screening & Identification Triggers 1) Is individual s age greater than 75 yrs and/or 2)Does individual have family history of dementia? and/or 3) Does individual have multiple vascular risk factors? Consider using Dementia Risk Calculator Consider Office Red Flags 1) Detecting Dementia Medical Checklist 2) Primary Care Office Behavioural Checklist Investigation & Labs 1) Complete blood count 2) TSH 3) Serum electrolytes 4) Serum calcium 5) Serum glucose levels 6) CT Scan Collaborative Tools 1) U First PIECES Wheel 11

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13 Primary Care Protocol for Behavioural and Psychological Symptoms of Dementia and Supportive Tools Is it a cognitive problem/dementia that is influencing the situation BPSD Assessment in Primary Care Type of Dementia Cognition problem Tool Types (Clinical Approach) Tools; High Risk Population Dementia Risk Calculator Medical Red Flag Checklist Office Red Flags Checklist Tools 3-Q Template R/O Delirium Mini Cog MoCA 7 D s KSBA Overall assessment Cognitive assessment Behavioural assessment Treatment of BPSD K. LeClair Collaboration/ Education U-First! Consider Cholinergics Memantine FAST staging selection/ monitoring sheets No or Acute Phase Treated 13 Urgent Severe Non Pharm Tool Top 8 Approach Yes Consider Atypicals (see psychotropic template) Monitor Family Practice (DOS) 7 D s

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15 Tools for Flagging High Risk Individuals Detecting Dementia Medical Checklist Dementia Risk Calculator 10 Warning Signs for Caregivers 10 Warning Signs for Professionals 15

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17 Detecting Dementia Medical Checklist A. Identifying Populations at Risk Is individual s age greater than 75 years? Does individual have a family history of dementia? (Particularly early onset dementia) Does individual have multiple vascular risk factors (Hypertension, cholesterol, cardiac disease, smoker, obesity)? (Consider Using Dementia Risk Calculator for Odds Ratios) B. Identifying Individuals at Risk Does the individual have/had A disorder with high rates of dementia? (I.e. Parkinson s, AIDS, Huntington s) A history of delirium? A history of late onset depression? (Particularly if depression had associated cognitive changes) A recent stroke? (30% risk of dementia in 3 months) MCI, Particularly amnesic MCI? (Note conversion rate 15% / year up to 45%) A head injury? An education <12 yrs? (versus >15 years) 17

18 Detecting Dementia Medical Checklist Definition: Adapted from literature and expert opinion to indicate medical areas that can be used as flags for possible dementia. Detecting Dementia Medical Checklist Link to Tool No Link Available Time to Administer 2-3 Mins Type Setting Non Standardized Screening Tool Primary Care Administration Review the individual s medical history in the indicated areas to determine possible dementia Interpretation If items are flagged consider more testing to determine if individual has a dementia Reference Adapted from: Patterson C., Feightner J, Garcia A, Hsiung G, MacKnight C, Sadovnick D. (2008) Diagnosis and treatment of dementia: 1. Risk assessment and primary prevention of Alzheimer s Disease. Canadian Medical Association Journal. 178 (5)

19 AGE % < Dementia Risk Calculator Risk = % (Age) Family history (Risk doubles for each first degree relative) Mother x 1 (no family history) Father Risk = % x 2 (1 relative) Brother (age) x 4 (2 relatives) Sister Risk = % (Age + Family History) Vascular risk factors (Risk doubles for each vascular risk factor) Atrial Fibrillation Diabetes Heart Disease (MI/CAD) x 1(no vascular risk factor) Hyperlipidemia Risk = % x 2 (1 vascular risk factor) Hypertension Smoking Stroke Obesity (age + family) x 4 (2 vascular risk factors) Risk = % (Age + Family History + Vascular Risk Factors) Overall Risk = % A 19

20 Dementia Risk Calculator This short screening tool allows an overall risk score based on aggregate scores from the individual s risk factors in three areas: Age, vascular risk factors, and family history. A positive score on the Calculator tool warrants further assessment with the Dementia Quick Screen. Dementia Risk Calculator Link to Tool Time to Administer Type Setting minutes Non-standardized screening tool. Primary care. Administration Use the rule of "2" to calculate an elderly patient's risk of dementia: At age 65, the risk is "2%" and every 5 years increased age the risk increases by x 2: - Every vascular risk factor increases the risk x 2 - Every first degree relative with a history of dementia increases risk x 2 Interpretation Add age-associated risk, vascular factor-associated risk and family historyassociated risk for an overall total risk. If total risk is > 15-20%, then perform Dementia Quick Screen: Three item recall house, tree, car (0-1 correct) Four-legged animal naming in one (1) minute (< 15) Clock drawing (abnormal) Reference De la Torre J.C. (2004). Is Alzheimer s disease a neurodegenerative or a vascular disorder? Data, dogma and dialectics. Lancet Neurology, 3, Gauthier S.J. (1997). Alzheimer disease: current knowledge, management and research. Canadian Medical Association Journal, 157, Siu A. (1991). Screening for dementia and investigating its causes. Annals of Internal Medicine, 115,

21 Completed Dementia Risk Calculator The dementia risk calculator is based on age, vascular risk factors, and family history of dementia (the doubling rule). For example, a 75-year-old man with a history of hypertension, whose mother had dementia, would score 32% risk of cognitive impairment. 8% (75 years of age) X2 (1 first degree relative) X 2 (1 vascular risk factor) = 32% AGE % < Risk = 8 % (Age) Family history (Risk doubles for each first degree relative) Mother x 1 (no family history) Father Risk = 8 % x 2 (1 relative) Brother (age) x 4 (2 relatives) Sister Risk = 16 % (Age + Family History) Vascular risk factors (Risk doubles for each vascular risk factor) Atrial Fibrillation Diabetes Heart Disease (MI/CAD) x 1(no vascular risk factor) Hyperlipidemia Risk = 16 % x 2 (1 vascular risk factor) Hypertension Smoking Stroke Obesity (age+ family) x 4 (2 vascular risk factors) Risk = 32 % (Age + Family History + Vascular Risk Factors) Overall Risk = 32 % *A risk >= 15% is high risk for cognitive impairment and justifies full cognitive assessment. The higher the risk of cognitive impairment by using the dementia risk calculator, the higher the chance that screening tests will reflect true positives rather than false positives. 21

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23 10 warning signs August Memory changes that disrupt daily life One of the most common signs of Alzheimer s, especially in the early stages, is forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to handle on their own. What are typical age-related changes? Sometimes forgetting names or appointments, but remembering them later. challenges in planning or solving problems Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before. What are typical age-related changes? Making occasional errors when balancing a checkbook. 5 6 Trouble understanding visual images and spatial relationships For some people, having vision problems is a sign of Alzheimer s. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realize they are the person in the mirror. What are typical age-related changes? Vision changes related to cataracts. New problems with words in speaking or writing People with Alzheimer s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a watch a hand-clock ). What are typical age-related changes? Sometimes having trouble finding the right word Withdrawal from work or social activities A person with Alzheimer s may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced. What are typical age-related changes? Sometimes feeling weary of work, family and social obligations. Changes in mood and personality The mood and personalities of people with Alzheimer s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone. What are typical age-related changes? Developing very specific ways of doing things and becoming irritable when a routine is disrupted. 3 4 difficulty completing familiar tasks at home, at work or at leisure People with Alzheimer s often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game. What are typical age-related changes? Occasionally needing help to use the settings on a microwave or record a television show. Confusion with time or place People with Alzheimer s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there. What are typical age-related changes? Getting confused about the day of the week but figuring it out later. 7 8 Misplacing things and losing the ability to retrace steps A person with Alzheimer s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time. What are typical age-related changes? Misplacing things from time to time, such as a pair of glasses or the remote control. Decreased or poor judgment People with Alzheimer s may experience changes in judgment or decision making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean. What are typical age-related changes? 23 Making a bad decision once in a while. Note: Mood changes with age may also be a sign of some other condition. Consult a doctor if you observe any changes. If you or someone you care about is experiencing any of the 10 warning signs, please see a doctor to find the cause. Early diagnosis gives you a chance to seek treatment and plan for your future. Your local Alzheimer s Association can help. Visit us at alz.org/10signs or call 877-IS IT ALZ.

24 What s the difference? August 2009 It may be hard to know the difference between age-related changes and the first signs of Alzheimer s disease. Ask yourself: Is this something new? For example, if the person was never good at balancing a checkbook, struggling with this task is probably not a warning sign. But if their ability to balance a checkbook has changed a lot, it is something to share with a doctor. Some people may recognize changes in themselves before anyone else notices. Other times, friends and family will be the first to observe changes in the person s memory, behavior or abilities. To help, the Alzheimer s Association has created this list of warning signs for Alzheimer s disease and related dementias. Individuals may experience one or more of these in different degrees. If you notice any of them, please see a doctor. Signs of Alzheimer s/ Dementia Poor judgment and decision making Inability to manage a budget Losing track of the date or the season Difficulty having a conversation Misplacing things and being unable to retrace steps to find them WINNER 2008 Typical Age-Related Changes Making a bad decision once in a while Missing a monthly payment Forgetting which day it is and remembering later Sometimes forgetting which word to use Losing things from time to time For more information about the 10 warning signs, please contact the Alzheimer s Association at 877-IS IT ALZ ( ) or visit alz.org/10signs. The Alzheimer s Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Information is available 24/7 at or by calling our Helpline at This is an official publication of the Alzheimer s Association but may be distributed by unaffiliated organizations and individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimer s Association Alzheimer s Association. All rights reserved Your memory often changes as you grow older. But memory loss that disrupts daily life is not a typical part of aging. It may be a symptom of dementia. Dementia is a slow decline in memory, thinking and reasoning skills. The most common form of dementia is Alzheimer s (AHLZ-high-merz) disease, a fatal disorder that results in the loss of brain cells and function. This list can help you recognize the warning signs of Alzheimer s: warning signs of alzheimer s disease Memory changes that disrupt daily life Challenges in planning or solving problems Difficulty completing familiar tasks Confusion with time or place Trouble understanding visual images and spatial relationships New problems with words in speaking or writing Misplacing things and losing the ability to retrace steps Decreased or poor judgment Withdrawal from work or social activities Changes in mood and personality

25 10 Warning Signs for Dementia Health Professionals Can Detect 1. Frequent phone calls/appointments missing / wrong day 2. Poor historian, vague, seems off, repetitive questions or stories 3. Poor compliance meds/instructions 4. Altered appearance / mood / personality / behaviour 5. New passivity - Head turning sign (turning to caregiver for answer) 6. Decline in language skills 7. Unexplained change in function 8. Delirium - surgery/illness/meds 9. Weight loss/dwindles/ failure to thrive 10.Driving concerns accident / problems / tickets/family 25

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27 Tools for Dementia Assessment/ Management Detecting Dementia / Cognitive Impairment: Recommended Tools Mini Cog Plus Montreal Cognitive Assessment (MoCA) Clock Drawing 27

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29 Mini Cog Plus - Probing all Lobes It is important to have sensitive tests that will reveal the functioning of the major parts of the brain. Parietal Visuospatial Clock Occipital Visual Memory Frontal -Word Generation Temporal (Hippocampal) Recall A 29

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31 Patient Name: Mini Cog for Primary Care Practitioner A) What year is it? B) Registration House Tree Car C) Clock (See attached) Date Completed: D) Recall Spontaneous House Tree Car Cueing E) Animal 4 legged in 1 minute (N) 15 F) Visual Memory Cue 1: 31

32 Mini-Cog This test combines a three-item recall with a Clock Drawing Test (CDT) as a quick measure of cognitive function. It is relatively uninfluenced by level of education or language variations. Mini-cog Link to Tool Time to Administer Type Setting 3 minutes Standardized assessment tool. Primary Care, Emergency, and other settings where rapid cognitive assessment is required. Administration 1. Three-item recall: Ask the individual to remember the following three words to be recalled later: House Tree Car 2. Clock drawing test: Draw a clock. Put in all the numbers and set the time to 10 after 11. The CDT serves as the distractor for the three-item recall. 3. Three-item recall: Interpretation Give 1 point for each recalled word after the CDT distractor. Score 1 3. A score of O indicates positive screen for dementia. A score of 1 or 2 with an abnormal CDT indicates positive screen for dementia. A score of 1 or 2 with a normal CDT indicates negative screen for dementia. A score of 3 indicates negative screen for dementia. The CDT is considered normal if all numbers are present in the correct sequence and position, and the hands display the requested time with one shorter and one longer hand. There are a number of scoring methods described in the following link: Clock errors may be divided into categories including visuo-spatial, perseveration, and gross disorganization. Common errors in Alzheimer's disease include perseveration, counterclockwise numbering, absence of numbers and irrelevant spatial arrangement. Errors following stroke may reflect spatial neglect, hemianopsia and sensory loss, in addition to errors suggestive of cognitive dysfunction. A variety of psychiatric conditions such as depression and schizophrenia contribute potentially to abnormal clock drawing. Reference Borson, S., Scanlan, J., Brush, M., Vitaliano, P., & Dokmak, A. (2000). The mini-cog: a cognitive vital signs measure for dementia screening in multi-lingual elderly. Int J Geriatr Psychiatry, 15(11),

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35 MONTREAL COGNITIVE ASSESSMENT (MOCA) NAME : Education : Sex : August 2009 Date of birth : DATE : VISUOSPATIAL / EXECUTIVE 5 D N A M I N G E A End B 1 Begin C Copy cube Draw CLOCK (Ten past eleven) ( 3 points ) [ ] [ ] [ ] [ ] Contour Numbers [ ] Hands POINTS /5 [ ] [ ] [ ] /3 M E M O R Y Read list of words, subject must repeat them. Do 2 trials. Do a recall after 5 minutes. 1st trial 2nd trial FACE VELVET CHURCH DAISY RED No points ATTENTION Read list of digits (1 digit/ sec.). Subject has to repeat them in the forward order [ ] Subject has to repeat them in the backward order [ ] /2 Read list of letters. The subject must tap with his hand at each letter A. No points if 2 errors [ ] F B A C M N A A J K L B A F A K D E A A A J A M O F A A B Serial 7 subtraction starting at 100 [ ] 93 [ ] 86 [ ] 79 [ ] 72 [ ] 65 LANGUAGE DELAYED RECALL ORIENTATION Repeat : I only know that John is the one to help today. [ ] The cat always hid under the couch when dogs were in the room. [ ] Fluency / Name maximum number of words in one minute that begin with the letter F [ ] (N 11 words) /1 ABSTRACTION Similarity between e.g. banana - orange = fruit [ ] train bicycle [ ] watch - ruler /2 Optional Has to recall words WITH NO CUE Category cue Multiple choice cue 4 or 5 correct subtractions: 3 pts, 2 or 3 correct: 2 pts, 1 correct: 1 pt, 0 correct: 0 pt FACE VELVET CHURCH DAISY RED [ ] [ ] [ ] [ ] [ ] [ ] Date [ ] Month [ ] Year [ ] Day [ ] Place [ ] City Z.Nasreddine MD Version Normal 26 / Administered by: TOTAL Points for UNCUED recall only Add 1 point if 12 yr edu /1 /3 /2 /5 /6 /30

36 Montreal Cognitive Assessment [MoCA] The MoCA has been designed as a screening instrument for mild cognitive dysfunction and is readily available in 17 languages via the internet. This tool has been standardized and normative data has been collected. Clinical utility of this tool is based upon the ease of availability, presence of normative data, ease of clinical administration and the fact that the clinician requires only the form and writing implement for administration. This tool can be used to screen for cognitive deficits in the absence of delirium. It is valuable to track and monitor cognitive functioning over a period of time. Link to Tool Time to Administer Type Setting Montreal Cognitive Assessment (MoCA) 10 Minutes Standardized assessment tool. This tool is useful in any practice setting for assessment of cognition including attention, concentration, executive function, memory, language, visuo-constructional skills, conceptual thinking, calculations and orientation. Administration Detailed administration instructions in 21 languages are available through the following link: Interpretation Normative data is available through the following link: The screen is scored out of 30 where a score of 26 or above is considered normal. Use of this screen may indicate the need for further assessment, intervention and/or referral to specialized services. Interpretation Data: Normal MCI AD Average MoCA 27.4 (+/-2.2) 22.1 (+/- 3.1) 16.2 (+/- 4.8) MoCA Score Range Usually < 20 Suggested Cut Off 26 Usually Presence of Functional (IADL) losses Reference A full reference list is available through the following link: Nasreddine, Z.S., Phillips, N.A., Bedirian, V., Charbonneau, S., Whitehead, V., Collin, I., Cummings, J.L. and Chertkow, H. (2005). The Montreal Cognitive Assessment, MoCA: A brief screening tool for mild cognitive impairment. Journal of the American Geriatric Society, 53(4),

37 Montreal Cognitive Assessment (MoCA) Administration and Scoring Instructions The Montreal Cognitive Assessment (MoCA) was designed as a rapid screening instrument for mild cognitive dysfunction. It assesses different cognitive domains: attention and concentration, executive functions, memory, language, visuoconstructional skills, conceptual thinking, calculations, and orientation. Time to administer the MoCA is approximately 10 minutes. The total possible score is 30 points; a score of 26 or above is considered normal. 1. Alternating Trail Making: Administration: The examiner instructs the subject: "Please draw a line, going from a number to a letter in ascending order. Begin here [point to (1)] and draw a line from 1 then to A then to 2 and so on. End here [point to (E)]." Scoring: Allocate one point if the subject successfully draws the following pattern: 1 A- 2- B- 3- C- 4- D- 5- E, without drawing any lines that cross. Any error that is not immediately self-corrected earns a score of Visuoconstructional Skills (Cube): Administration: The examiner gives the following instructions, pointing to the cube: Copy this drawing as accurately as you can, in the space below. Scoring: One point is allocated for a correctly executed drawing. Drawing must be three-dimensional All lines are drawn No line is added Lines are relatively parallel and their length is similar (rectangular prisms are accepted) A point is not assigned if any of the above-criteria are not met. 3. Visuoconstructional Skills (Clock): Administration: Indicate the right third of the space and give the following instructions: Draw a clock. Put in all the numbers and set the time to 10 after 11. Scoring: One point is allocated for each of the following three criteria: Contour (1 pt.): the clock face must be a circle with only minor distortion acceptable (e.g., slight imperfection on closing the circle); Numbers (1 pt.): all clock numbers must be present with no additional numbers; numbers must be in the correct order and placed in the approximate quadrants on the clock face; Roman numerals are acceptable; numbers can be placed outside the circle contour; Hands (1 pt.): there must be two hands jointly indicating the correct time; the hour hand must be clearly shorter than the minute hand; hands must be centred within the clock face with their junction close to the clock centre. A point is not assigned for a given element if any of the above-criteria are not met. MoCA Version November 12, 2004 Z. Nasreddine MD

38 4. Naming: Administration: Beginning on the left, point to each figure and say: Tell me the name of this animal. Scoring: One point each is given for the following responses: (1) camel or dromedary, (2) lion, (3) rhinoceros or rhino. 5. Memory: Administration: The examiner reads a list of 5 words at a rate of one per second, giving the following instructions: This is a memory test. I am going to read a list of words that you will have to remember now and later on. Listen carefully. When I am through, tell me as many words as you can remember. It doesn t matter in what order you say them. Mark a check in the allocated space for each word the subject produces on this first trial. When the subject indicates that (s)he has finished (has recalled all words), or can recall no more words, read the list a second time with the following instructions: I am going to read the same list for a second time. Try to remember and tell me as many words as you can, including words you said the first time. Put a check in the allocated space for each word the subject recalls after the second trial. At the end of the second trial, inform the subject that (s)he will be asked to recall these words again by saying, I will ask you to recall those words again at the end of the test. Scoring: No points are given for Trials One and Two. 6. Attention: Forward Digit Span: Administration: Give the following instruction: I am going to say some numbers and when I am through, repeat them to me exactly as I said them. Read the five number sequence at a rate of one digit per second. Backward Digit Span: Administration: Give the following instruction: Now I am going to say some more numbers, but when I am through you must repeat them to me in the backwards order. Read the three number sequence at a rate of one digit per second. Scoring: Allocate one point for each sequence correctly repeated, (N.B.: the correct response for the backwards trial is 2-4-7). Vigilance: Administration: The examiner reads the list of letters at a rate of one per second, after giving the following instruction: I am going to read a sequence of letters. Every time I say the letter A, tap your hand once. If I say a different letter, do not tap your hand. Scoring: Give one point if there is zero to one errors (an error is a tap on a wrong letter or a failure to tap on letter A). MoCA Version November 12, 2004 Z. Nasreddine MD

39 Serial 7s: Administration: The examiner gives the following instruction: Now, I will ask you to count by subtracting seven from 100, and then, keep subtracting seven from your answer until I tell you to stop. Give this instruction twice if necessary. Scoring: This item is scored out of 3 points. Give no (0) points for no correct subtractions, 1 point for one correction subtraction, 2 points for two-to-three correct subtractions, and 3 points if the participant successfully makes four or five correct subtractions. Count each correct subtraction of 7 beginning at 100. Each subtraction is evaluated independently; that is, if the participant responds with an incorrect number but continues to correctly subtract 7 from it, give a point for each correct subtraction. For example, a participant may respond where the 92 is incorrect, but all subsequent numbers are subtracted correctly. This is one error and the item would be given a score of Sentence repetition: Administration: The examiner gives the following instructions: I am going to read you a sentence. Repeat it after me, exactly as I say it [pause]: I only know that John is the one to help today. Following the response, say: Now I am going to read you another sentence. Repeat it after me, exactly as I say it [pause]: The cat always hid under the couch when dogs were in the room. Scoring: Allocate 1 point for each sentence correctly repeated. Repetition must be exact. Be alert for errors that are omissions (e.g., omitting "only", "always") and substitutions/additions (e.g., "John is the one who helped today;" substituting "hides" for "hid", altering plurals, etc.). 8. Verbal fluency: Administration: The examiner gives the following instruction: Tell me as many words as you can think of that begin with a certain letter of the alphabet that I will tell you in a moment. You can say any kind of word you want, except for proper nouns (like Bob or Boston), numbers, or words that begin with the same sound but have a different suffix, for example, love, lover, loving. I will tell you to stop after one minute. Are you ready? [Pause] Now, tell me as many words as you can think of that begin with the letter F. [time for 60 sec]. Stop. Scoring: Allocate one point if the subject generates 11 words or more in 60 sec. Record the subject s response in the bottom or side margins. 9. Abstraction: Administration: The examiner asks the subject to explain what each pair of words has in common, starting with the example: Tell me how an orange and a banana are alike. If the subject answers in a concrete manner, then say only one additional time: Tell me another way in which those items are alike. If the subject does not give the appropriate response (fruit), say, Yes, and they are also both fruit. Do not give any additional instructions or clarification. After the practice trial, say: Now, tell me how a train and a bicycle are alike. Following the response, administer the second trial, saying: Now tell me how a ruler and a watch are alike. Do not give any additional instructions or prompts. MoCA Version November 12, 2004 Z. Nasreddine MD

40 Scoring: Only the last two item pairs are scored. Give 1 point to each item pair correctly answered. The following responses are acceptable: Train-bicycle = means of transportation, means of travelling, you take trips in both; Ruler-watch = measuring instruments, used to measure. The following responses are not acceptable: Train-bicycle = they have wheels; Ruler-watch = they have numbers. 10. Delayed recall: Administration: The examiner gives the following instruction: I read some words to you earlier, which I asked you to remember. Tell me as many of those words as you can remember. Make a check mark ( ) for each of the words correctly recalled spontaneously without any cues, in the allocated space. Scoring: Allocate 1 point for each word recalled freely without any cues. Optional: Following the delayed free recall trial, prompt the subject with the semantic category cue provided below for any word not recalled. Make a check mark ( ) in the allocated space if the subject remembered the word with the help of a category or multiple-choice cue. Prompt all non-recalled words in this manner. If the subject does not recall the word after the category cue, give him/her a multiple choice trial, using the following example instruction, Which of the following words do you think it was, NOSE, FACE, or HAND? Use the following category and/or multiple-choice cues for each word, when appropriate: FACE: category cue: part of the body multiple choice: nose, face, hand VELVET: category cue: type of fabric multiple choice: denim, cotton, velvet CHURCH: category cue: type of building multiple choice: church, school, hospital DAISY: category cue: type of flower multiple choice: rose, daisy, tulip RED: category cue: a colour multiple choice: red, blue, green Scoring: No points are allocated for words recalled with a cue. A cue is used for clinical information purposes only and can give the test interpreter additional information about the type of memory disorder. For memory deficits due to retrieval failures, performance can be improved with a cue. For memory deficits due to encoding failures, performance does not improve with a cue. 11. Orientation: Administration: The examiner gives the following instructions: Tell me the date today. If the subject does not give a complete answer, then prompt accordingly by saying: Tell me the [year, month, exact date, and day of the week]. Then say: Now, tell me the name of this place, and which city it is in. Scoring: Give one point for each item correctly answered. The subject must tell the exact date and the exact place (name of hospital, clinic, office). No points are allocated if subject makes an error of one day for the day and date. TOTAL SCORE: Sum all subscores listed on the right-hand side. Add one point for an individual who has 12 years or fewer of formal education, for a possible maximum of 30 points. A final total score of 26 and above is considered normal. MoCA Version November 12, 2004 Z. Nasreddine MD

41 Clock Drawing A 41

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43 Clock Drawing Test This test provides a quick screening test for cognitive dysfunction (frontal and temporoparietal functioning) secondary to dementia, delirium, or a range of neurological and psychiatric illnesses. It is a component of the mini cog assessment, also serving the function of distracter for the three word recall. Link to Tool Time to Administer Type Setting Clock Drawing Test minutes Standardized screening instrument. A variety of settings including primary care, acute care, community, outpatient/ rehab, and longterm care. It is particularly useful in general practice. Administration 1. Provide individual with a piece of paper with a pre drawn circle of approximately 10 cm in diameter. 2. Indicate that the circle represents the face of a clock and ask the individual to put in the numbers so that it looks like a clock 3. Ask the individual to add arms so that the clock indicates the time ten minutes after eleven These instructions can be repeated but no additional instructions should be given. Give the individual as much time as needed to complete the task. Interpretation NORMAL ABNORMAL Mild Moderate Severe Mild irregularities of number placement are acceptable as normal Commonly, early dementia is associated with drawing hands towards the 11 and 10; this perseveration towards 10 is an example of problems with executive function Abnormalities of number and hand placement Severe abnormalities *The odds ratio for cognitive impairment with abnormal clock drawing is 24X 43

44 The CDT is considered normal if all numbers are present in the correct sequence and position, and the hands display the requested time with one shorter and one longer hand. There is some variation in scoring methodology. Clock errors may be divided into categories including visuo spatial, perseveration, and gross disorganization. Common errors in Alzheimer's disease include perseveration, counterclockwise numbering, absence of numbers and irrelevant spatial arrangement. Errors following stroke may reflect spatial neglect, hemianopsia and sensory loss, in addition to errors suggestive of cognitive dysfunction. A variety of psychiatric conditions such as depression and schizophrenia contribute potentially to abnormal clock drawing. Reference Borson, S, Scanlan, J., Brush, M., Vitaliano, P., Dokmak, A., The mini cog: a cognitive vital signs measure for dementia screening in multi lingual elderly. Int J Geriatric Psychiatry 2000; 15 (11): Siu, AL. Screening for dementia and investigating its causes. Ann Intern Med 1991; 115:

45 Other Tools for Detecting Dementia / Cognitive Impairment Mini Mental State Exam (MMSE) 45

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47 Folstein Mini-Mental State Examination (MMSE) The Test The MMSE was developed 30 years ago as a rapid screening test for cognitive function. It emphasizes the typical changes seen in Alzheimer s disease (memory/orientation) as opposed to the early changes seen in the non-alzheimer s dementias (vascular, Lewy body, frontotemporal which are: executive function problems - frontal lobe: putting the hands on the clock, animal naming, Trails A and B which test SOAP Strategizing, Organizing, Abstract thinking, Planning). Strengths: Widely used, short (7 minutes), tests memory, orientation, naming, visuospatial, and attention. Weaknesses: Focuses on few domains (little visuospatial, no executive function) Poor at upper end of cognitive ability (ie, poor discrimination of normal vs MCI vs early dementia) Cut-off norms require adjustments based on the patient s age and especially education particularly with a less than grade nine education The MMSE is much more suitable to assess domains affected by Alzheimer s disease than by non-alzheimer s dementias Interpretation A score < 24 is suggestive of cognitive impairment/dementia. Serial 7s vs spelling world backwards: The instructions call for the use of serial 7s unless the person refuses, in which case spelling world backwards is a substitute. Alternatively, both tests can be done and recorded separately. Typically, patients score 1 to 2 points better with spelling world backwards. Based on the person s history and functional issues, you may expect a certain MMSE (e.g. 17 to 18), but if the person scores much higher (e.g, 22 to 23 or more), suspect non- Alzheimer s dementia. This is because the MMSE does not test the common problem areas seen in the non-alzheimer s dementias (executive function / visuospatial). In this situation, the MOCA is a much superior test. Age Mean MMSE Scores Years of Education College A 47

48 The Mini Mental State Examination (MMSE) The Mini Mental State Examination (MMSE) is a tool that can be used to systematically and thoroughly assess mental status. It is an 11-question measure that tests five areas of cognitive function: Orientation, registration, attention and calculation, recall, and language. Permission to use tool and training is required. The Mini Mental State Examination (MMSE) Link to Tool The tool: * Permission is hereby granted to reproduce this material for not-for-profit educational purposes only, provided The Hartford Institute for Geriatric Nursing, Division of Nursing, New York University is cited as the source. Available on the internet at notification of usage to: hartford.ign@nyu.edu. Instructions on administering the MMSE: min%20mmse.pdf Time to Administer Type Setting 10 minutes Standardized Screening Tool. Mental status screen for community dwelling, hospitalized and institutionalized elderly adults. Administration 11-item measure administered by interview. Interpretation References Maximum score is 30. Scores of 23 or lower indicate cognitive impairment. Folstein, M., Folstein, S.E., McHugh, P.R. (1975). Mini-Mental State a Practical Method for Grading the Cognitive State of Patients for the Clinician. Journal of Psychiatric Research, 12(3), The Hartford Institute for Geriatric Nursing, Division of Nursing, New York, 48

49 Types of Dementia Tools for Determining Type of Dementia 49

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51 Types of Dementia (Clinical features which should suggest a diagnosis other than Alzheimer s) Focal neurological symptoms Focal neurological signs Cognitive decline within 3 months of SVA/ TIA Abrupt onset/ stepwise decline Previous CVA or TIA Vascular Dementia Visual hallucinations: detailed/ recurrent Lewy Body Dementia Pronounced fluctuation in cognition over hours/ days Parkinsonism (especially rigidity)/ bradykinesia Executive function worse than memory Neuroleptic sensitivity Unexplained falls / loss of consciousness Impulsivity / poor judgment Behavioural changes: disinhibition / apathy Self-neglect / socially inappropriate Executive function worse than memory Language problems Frontotemporal Dementia Abnormal gait (magnetic apraxia) Incontinence early in course of dementia Rapidly progressing dementia Normal Pressure Hydrocephalus (NPH) B 51

52 Types of Dementia Definition: A template to indicate differences in presentation and symptoms of dementias other than Alzheimer s Disease. Types of Dementia Link to Tool No Link Available Time to Administer 5 mins Type Setting Non Standardized Assessment Tool Primary Care Administration Use the checklist to assess symptoms and presentation Reference Adapted from: Patterson CJ, Gauthier S, Bergman H, et al.(1999). The recognition, assessment and management of dementing disorders: conclusions from the Canadian Consensus Conference on Dementia. CMAJ 160 (12 suppl): S1-S15 52

53 Tools for Determining Staging of Dementia Functional Assessment Staging (FAST) 53

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55 Functional Assessment Staging (FAST) Patient Name: Health card # Date: Period: Physician Name: Information gathered from: Patient OR Other: please specify relationship to patient (If an Item is assessed as being due to other causes apart from dementia (paralysis, arthritis, etc.), please check No and note these other causes next to the item. 1. No difficulties, either subjectively or objectively 2. Complaints of forgetting location of objects; subjective work difficulties 3. Decreased job functioning evident to coworkers; difficulty in traveling to new locations 4. Decreased ability to perform complex tasks 5. Requires assistance in choosing proper clothing 6. a. Difficulty putting clothing on properly b. Unable to bathe properly; may develop fear of bathing c. Inability to handle mechanics of toileting (i.e. forgets to flush, doesn t wipe properly) d. Urinary incontinence e. Fecal incontinence 7. a. Ability to speak limited (1 to 5 words a day) b. All intelligible vocabulary lost c. Non-ambulatory d. Unable to sit up independently e. Unable to smile f. Unable to hold head up Yes Months 1 No Tester: Comments: Note: Functional staging score = Highest ordinal value 1 Number of months FAST stage deficit has been noted. 55

56 Diagnosing Severe AD: Functional Assessment Staging FAST Scale Stage 1. Normal adult Characteristics No functional decline. 2. Normal older adult Personal awareness of functional decline. Severity 3. Early AD 4. Mild AD 5. Moderate AD Noticeable deficits in demanding job situations. Requires assistance in complicated tasks such as handling finances, planning parties, etc. (IADL S*) Requires assistance in choosing proper attire. (ADL S*) 6. Moderate-Severe AD 7. Severe AD Requires assistance dressing, bathing, and toileting. Experiences urinary and fecal incontinence. Speech ability declines to about a halfdozen intelligible words. Progressive loss of abilities to walk, sit up, smile, and hold head up. IADL S (SHAFT-M) ADL S (DEATH) S Shopping D Dressing H Household E Eating A Accounting A Ambulation F Food Preparation T Toiliting T Transportation H Hygeine M Medication A 56

57 Functional Assessment Staging [FAST] This staging tool evaluates functional deterioration in individuals living with Alzheimer s Disease (AD) throughout the entire course of the illness. Functional Assessment Staging (FAST) Link to Tool Time to Administer Type Setting minutes (estimate) Standardized assessment tool. Can be used in any practice setting as a staging tool for individuals living with AD. Also, as the elements of functional capacity used in FAST are relatively universal, and characteristic of the course of AD, the tool can serve as a strong diagnostic and differential diagnostic aid for clinicians. Administration 16-item questionnaire completed by clinician primarily on the basis of information obtained from a knowledgeable informant and/or caregiver. Results allow classification of individual s disability into one of seven possible stages: Stage 1 Normal Stage 2 Normal with mild memory loss Stage 3 Early AD Stage 4 Mild AD Stage 5 Moderate AD Stage 6 Moderately Severe AD Stage 7 Severe AD Interpretation Reference Descriptive behaviours/symptoms are given for each of the seven stages. Scorer selects highest consecutive level of disability. Reisburg, B. (1988). Functional assessment staging (FAST). Psychopharmacology Bulletin, 24,

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59 The Physical Self-Maintenance Scale Lawton-Brody A. Toilet 1. Cares for self at toilet completely, no incontinence. 2. Needs to be reminded, or needs help in cleaning self, or has rare (weekly at most) accidents. 3. Soiling or wetting while asleep more than once a week. 4. Soiling or wetting while awake more than once a week. 5. No control of bowels or bladder. B. Feeding 1. Eats without assistance. 2. Eats with minor assistance at meal times and/or with special preparation of food, or help in cleaning up after meals. 3. Feeds self with moderate assistance and us untidy. 4. Requires extensive assistance for all meals. 5. Does not feed self at all and resists efforts of others to feed him. C. Dressing 1. Dresses, undresses and selects clothes from own wardrobe. 2. Dresses and undresses self, with minor assistance. 3. Needs moderate assistance in dressing or selection of clothes. 4. Needs major assistance in dressing, but cooperates with efforts of others to help. 5. Completely unable to dress self and resists efforts of others to help. D. Grooming 1. Always neatly dressed, well-groomed, without assistance. 2. Grooms self adequately with occasional minor assistance (e.g. shaving). 3. Needs moderate and regular assistance or supervision in grooming. 4. Needs total grooming care, but can remain well-groomed after help from others. 5. Activity negates all efforts of others to maintain grooming. E. Physical Ambulation 1. Goes about grounds or city. 2. Ambulates within residence or about one block distant. 3. Ambulates with assistance of (check one) a. ( ) another person b. ( ) railing c. ( ) cane d. ( ) walker e. ( ) wheelchair 4. Sits unsupported in chair or wheelchair, but cannot propel self without help. 5. Bedridden more than half the time. F. Bathing 1. Bathes self (tub, shower, sponge bath) without help. 2. Bathes self with help in getting in and out of the tub. 3. Washes face and hands only, but cannot bathe rest of body. 4. Does not wash self but is cooperative with those who bathe him. 5. Does not try to wash self and resists efforts to keep him clean. 59

60 Activities of Daily Living Scale A. Ability to use Telephone 1. Operates telephone on own initiative looks up and dials numbers, etc. 2. Dials a few well-known numbers. 3. Answers telephone but does not dial. 4. Does not use telephone at all. B. Shopping 1. Takes care of all shopping needs independently. 2. Shops independently for small purchases. 3. Needs to be accompanied on any shopping trip. 4. Completely unable to shop. C. Food Preparation 1. Plans, prepares and serves adequate meals independently. 2. Prepares adequate meals if supplies with ingredients. 3. Heats and serves prepared meals, or prepares meals but does not maintain adequate diet. 4. Needs to have meals prepared and served. D. Housekeeping 1. Maintains house alone or with occasional assistance (e.g. heavy work-domestic help ) 2. Performs light daily tasks such as dish washing, bed making. 3. Performs light daily tasks but cannot maintain acceptable level of cleanliness. 4. Needs help with all home maintenance tasks. 5. Does not participate in any housekeeping tasks. E. Laundry 1. Does personal laundry completely. 2. Launders small items rinses socks, stockings, etc. 3. All laundry must be done by others. F. Mode of Transportation 1. Travels independently on public transportation or drives own car. 2. Arranges own travel via taxi, but does not otherwise use public transportation. 3. Travels on public transportation when assisted or accompanied by another. 4. Travel to limited to taxi or automobile with assistance of another. 5. Does not travel at all. G. Responsibility for own Medication 1. Is responsible for taking medication in correct dosages at correct time. 2. Takes responsibility if medication is prepared in advance in separate dosages. 3. Is not capable of dispensing own medication. H. Ability to Handle Finances 1. Manages financial matters independently (budgets, writes checks, pays rent, bills, goes to bank), collects and keeps track of income. 2. Manages day-to-day purchases, but needs help with banking, major purchases, etc. 3. Incapable of handling money. Date: A Signature : 60

61 Lawton-Brody Definition: The Lawton Brody was developed in 1988 in Philadelphia at the Philadelphia Geriatric Center as part of their multilevel Assessment Instrument. This tool is primarily used to assist in assessing Functional status or the ability to perform self-care, selfmaintenance and physical activities. There are several tools utilized to assess functional status that are very similar to the Lawton-Brody including the Independent Activities of Daily Living Scale and the Functional Activities Scale. Lawton-Brody Link to Tool IADLS Version: Time to Administer N/A Type Non Standardized Assessment Tool Setting Administration Reference Primary Care Self-administered by the client/resident or administered by the caregiver Each category is reviewed and the highest level of function is circled Scale is signed and dated Lawton MP, Brody EM. (1969) Assessment of older people: selfmaintaining and instrumental activities of daily living. Gerontologist 9(3):

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63 Investigations and Labs Investigations and Labs 63

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65 Name: Date: Investigation & Labs for Screening Dementia Basic laboratory tests Results Complete blood count TSH Serum electrolytes BUN, Creatine Serum calcium Serum glucose levels Vitamin B 12 Neuroimaging in dementia Results Consider CT scan (see below) CT Scan Checklist *Note: CT scan recommended if 1 or more of the following criteria are present age at dementia onset < 60 focal neurological signs rapid progression of dementia recent head trauma use of anticoagulants history of urinary incontinence and gait disorder early in course short duration of dementia (less than 2 years) unexplained neurological symptoms history of cancer (especially in sites and types that metastasize the brain) any new localizing sign (e.g. hemiparesis or a Babinski reflex) unusual or atypical cognitive symptoms or presentation (e.g. progressive aphasia) Neuroimaging also recommended to evaluate for concomitant cerebrovascular disease as this may affect subsequent management (see reverse for additional tests) 65

66 Optional additional tests that may be helpful to diagnose specific causes of dementia Test (measurement of ) Results Amonia Blood gases Drug levels Erythrocyte sedimentation rate Folic acid Heavy metal levels Serum cortisol Serum lipids Urea nitrogen/ creatine Water soluble vitamins Carotid Doppler studies Chest radiography Electrocardiography Electroencephalography Lumbar puncture Mammography Serologic tests for syphilis Test for HIV PET Scan SPECT Scan B 66

67 Investigations and Labs Definition: Based on literature, the Third Annual Canadian Consensus Conference on Diagnosis and Treatment of Dementia and expert opinion, this checklist is for physicians to compile a comprehensive and thorough chart of medical testing and results throughout the screening of dementia. Investigations and Labs Link to Tool No Link Available Time to Administer Type Setting N/A Non Standardized Screening Checklist Primary Care Administration 1.If a dementia is suspected, the indicated tests are recommended. 2.Record results on checklist Reference Bergman et al. (2006) Third canadian consensus conference on diagnosis and treatment of dementia. Retrieved August 26 th 2008 from < D_2007.pdf> 67

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69 Dementia Collaborative Care Tools Three-Question Template & Summary of U-FIRST / P.I.E.C.E.S. P.I.E.C.E.S Aid for Family Physicians Kingston Standardized Behavioural Assessment (KSBA) Is It Alzheimer s Disease? 10 Warning Signs Dementia Observation System (DOS) Dementia Observation System (DOS) for Families 7 D s to Define Severity: Monitoring Response for Behaviour and Psychosis U-FIRST Wheel 69

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71 The P.I.E.C.E.S. Three-Question Template Q. 1 What has changed? Q. 2 What are the RISKS and possible causes? Q. 3 What is the action? August 2009 Question What has changed? Avoid assumptions; Think atypical! What are the RISKS and possible causes? Think P.I.E.C.E.S. Remember! Almost always multiple reasons for behaviour. What is the Action? Avoid assumptions Approach, Guidelines and Tools Always ask, what has changed? Determine if the problem/behaviour represents a change Is the problem/behaviour new? If so, in what way and when did the change emerge? Did the problem/behaviour already exist? If so, is it worse or different, and when did the change emerge? Is the problem/behaviour long-standing and unchanged? If so, what else could have changed, for example, caregiver stress? Remember to think atypical! Atypical presentations are very common in older persons. 1. Identify the RISKS and avoid assumptions! Is there a risk? And if so for whom? Person, other individuals, staff, family, visitors What is the risk? Remember the types of risks by using the acronym RISKS: R I S K S Roaming (wandering) Imminent physical; risk of harm - frailty (e.g. delirium), falls, fire, firearms Suicide Ideation Kinship Relationships (risk of harm by the older person or to the older person by others that includes avoidance of the person) Self-neglect, safe driving, and substance abuse What is the degree of risk? How imminent is the risk? Is the risk increasing? Remember! For any intervention, consider both the potential risks and potential benefits. Be vigilant and carefully observe and assess the individual s capacity to understand. 2. Remember, consider atypical presentation! Use P.I.E.C.E.S. to identify possible causes: Physical Intellectual Emotional Capabilities Environment Social 5 D s: Delirium, Disease, Drugs, Discomfort, Disability 7 A s: Amnesia, Aphasia, Apathy, Agnosia, Apraxia, Anosognosia, Altered Perception 4D s: Disorder Adjustment, Disorders of Mood, Delusional, Disorders of Personality ADL s, IADL s Consider: over/under stimulation, relocation, change in routine, noise, lighting, colours Consider: social network, life story, cultural heritage 3. Remember, all behaviour has meaning! Use P.I.E.C.E.S. to help you remember! 1. Use the 3 I s Interventions, Interactions, and Information to guide action. Intervention: What therapeutic approach, both nonpharmacological and pharmacological, may best address the person s needs? What other investigations need to be undertaken? Use P.I.E.C.E.S.! Interaction: Using what has changed and understanding of causes for interaction at bedside. Information: Think P.I.E.C.E.S.! What information should be shared with other team members, family, if the person is moved or requires transfer? How is the information shared? What are RISKS Factors? 2. Use U-First!/P.I.E.C.E.S. Collaborative Care Tool to promote dialogue and shared team solution finding. Collaborative Care (Shared Care) Algorithm and Tools S E P Understand Flag Interact Report Support Team I E Remember! Almost always multiple reasons for behaviour. C 71

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73 What is P.I.E.C.E.S.? P.I.E.C.E.S. TM P.I.E.C.E.S. is an acronym that conveys the individuality and importance of the various factors in the well-being, self-determination, and quality of life for older people. The first three letters P-I-E, represent an individual's Physical, Intellectual, and Emotional health. The C can be seen as the centerpiece or focus in care, i.e., maximizing Capabilities which promotes the achievement of the highest quality of life possible. The E-S represents the Environment that an individual interacts with (physical as well as the emotional environment) and the person s Social self (cultural, spiritual, life story ). P.I.E.C.E.S. represents Physical, Intellectual, Emotional, Capabilities, Environment, Social and are the cornerstones of the approach. Delirium! Think 4 M s 1. Medicine: prescription, OCD, substance misuse 2. Microbials 3. Metabolic 4. Myocardial/Respiratory and other Medical disorders Causes of Delirium: I Watch Death I Infections W Withdrawal A Acute Metabolic T Toxins, drugs C CNS Pathology H Hypoxia D Deficiencies E Endocrine A Acute Vascular T Trauma H Heavy Metals Wise MG, Hilty DM, Cerda GM, Trzepacz PT. (2002) Delirium (confusional states). In: Wise MG, Rundell JR, editors. Textbook of consultation-liaison psychiatry: psychiatry in the medically ill. 2nd ed. Washington: American Psychiatric Publishing; pp Confusion Assessment Method (CAM) to help detect possible delirium 1. Acute onset 2. Inattention 3. Disorganized Thinking 4. Altered Level of Consciousness 5. Disorientation 6. Memory Impairment 7. Perceptual Disturbances 8. Psychomotor Agitation and Retardation 9. Sleep/Wake Cycle Disturbance Consider delirium if 1 & 2 and either 3 or 4 are present Inouye, S.K., van Dyck, C.H., Alessi, C. A., et al. (1990). Clarifying confusion: The Confusion Assessment Method. A new method for detection of delirium. Annals of Internal Medicine, 113: Identify & Assess Discomfort or Pain Flags: Emotional/behaviour changes: increased intensity of dementia, depression or delirium Physical changes: gait, posture, appetite, and sleep patterns, elevated BP, increased respirations, diaphoresis, pupil changes Assessment: 0-10 Rating. Faces Pain Rating Scale. Intellectual Detecting Cognitive Impairment (Mini Cog) Physical Often Urgent Emotional Behaviour Depression/Psychosis Risk Factors for Delirium 1. Cognitive Impairment 2. Sleep Deprivation 3. Immobility 4. Visual Impairment 5. Hearing Impairment 6. Dehydration Key to Diagnosis Change (short time) Communication Capabilities Flags: near misses excuses confabulation Repeat 3 words and remember them House Tree Car Name as many four legged animals in one minute (average 15) Recall the three words DRAW A CLOCK Hand on for 10 after 11 Adapted from S.Borson Also consider the MoCA a cognitive screening test designed to assist Health Professionals for detection of mild cognitive impairment. Psychoses/Behavioural challenges monitor, observe, record 7 Ds. 1. Dangerous - dangerousness/how threatening 2. Distressing - how distressing to self 3. Disturbing - disturbing quality/disturbing to others 4. Direct Action - whether the resident is acting on them 5. Jeopardizing Independence or social interactions 6. Distant vs Present - occurring in the past or present 7. Definite (fixed) - full or partial insight; are they fixed vs. insight The Do s & Don ts for Psychosis/Behaviour: Do ensure the persons and your safety Do understand this is a response to a real perception of the individual Do focus on the effects on the person not the content (i.e. validate) Do distract Don t confront the false beliefs Remember the delusions may not emerge until a period of time has elapsed it may take time to organize the delusion Signs of Depression. SIG: E CAPS Sleep disturbed Interest decreased Guilt feelings Energy lower Concentration poor Appetite disturbed Psychomotor retardation or agitation Suicidal ideation Dr. Carey Cross and reported in Jenike, M. (1989). Geriatric Psychiatry and Psychopharmacology: A clinical approach.p.36.chicago:yearbook Medical Publishers Inc DOS Dementia Observation System August Helps determine the % of time over 24-hr cycle that the person displayed a behaviour(s) of concern; helps team determine if behaviour(s) have responded to interventions and/or side effects to medications 2. Replaces opinion with measurable data by establishing the: Occurrence of specific behaviours of interest Frequency with which target behaviours occur Duration the target behaviours are displayed Frequency with which the target behaviours of greatest risk are displayed, in comparison with those behaviours that should be accommodated Guidelines for Selection and Monitoring the Use, Risk, and Benefits of Psychotropics Why is the psychotropic being used or considered? How do I select the right medication? How do I monitor the response and side effects? High Risk Elderly Where Competency May Be an Issue 6 Key Areas for Assessment: 1. Clinical 2. Capacity 3. Values & Preferences of Individual 4. Legal & least restrictive legal option, alternatives 5. Influences on our decision-making 6. Plan and reassessment; with specific indicators/triggers when to review P.I.E.C.E.S. Consult Group. January,

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75 Kingston Standardized Behavioural Assessment August 2009 Name: Case #: Sex: M F Age Education Years of Illness Date: Informant: Lives in Community or Lives in Care Facility Please check all of the following behaviours that have occurred in the last month or are presently occurring, and that are a change from your spouse/relative/client s earlier behaviour (prior to illness). Indicate whether they apply by marking the box beside the appropriate statement. The Total Score equals number of boxes checked. 1 Daily Activities 1 No longer takes part in favourite pastimes (or greatly reduced). 2 Reduced personal hygiene. (e.g. Would not take a bath unless told to do so, or wears the same clothes for days unless made to change). 3 If left on his/her own, doesn't eat properly. 4 Unsafe in daily activities, if left unsupervised. 5 No longer uses some common objects properly. (e.g. telephone) 6 Unable to handle personal finances. 7 Is unable to perform usual household tasks. 8 Gets confused in places other than home. 9 Overly dependent, wants more guidance than usual. 10 Trouble appreciating subtleties in conversations (e.g. recognizing humor). 11 Difficulty judging the passing of time. 12 Wanders aimlessly. 13 Hides things. 14 Hoards objects. 15 Fails to recognize family or friends. 16 Incontinence of urine/faeces in clothes in daytime. 17 Voids in non-toilet areas. < Total Daily Activities 2 Attention/Concentration/Memory 18 Can't concentrate, pay attention for long. 19 Misplaces things more than usual. 20 Has difficulty organizing his/her time or daily activities. 21 Forgets activities, conversations of only a short time before. 22 Forgets important everyday information. < Total Attention/Concentration/Memory 3 Emotional Behaviour 23 Shows little or no emotion. 24 Mood changes with no apparent reason. 25 Expresses inappropriate emotions, either type or intensity. 26 Makes uncharacteristically pessimistic statements. < Total Emotional Behaviour 4 Aggressive Behaviour 27 Verbally abusive at times. 28 Uncharacteristically excitable, easy to upset; reacts catastrophically. 29 Attempts to hit/strike out at others. < Total Aggressive Behaviour 5 Misperceptions/Misidentifications Claims an object/possession looks similar to, but is not the real one. Claims a family member looks similar but is not the true one. Thinks present dwelling is not their place of living. 33 Thinks people are present who aren't. < Total Misperception Behaviour 75

76 6 Paranoid Behaviour 34 Suspicious of family and friends. 35 Suspicious about money issues. 36 Accuses others of stealing his or her things. 37 Accuses spouse of infidelity. 38 Expresses suspicion around taking medication. < Total Paranoid Behaviour 7 Judgement/Insight 39 Shows poor judgement in social situations. 40 Shows poor judgement about driving. 41 Shows uncharacteristic change in his or her concern about money. 42 Poor choices in dressing. (e.g. wears clothes that are inappropriate for season or temperature, wears the same clothes for days). 43 Makes inappropriate sexual advances. 44 Shows less self control than usual. 45 Unable to identify personal safety risks. < Total Judgement/Insight 8 Perseveration 46 Repeats same actions over and over. 47 Repeats same words or phrases. 48 Repeatedly shouts or calls out. < Total Perseveration 9 Motor Restlessness 49 Desire to pace or walk almost constantly. 50 Can't sit still, restless, fidgety. 51 Tries doors, windows. 10 Sleep/Activity/Sundowning 52 Falls asleep at uncharacteristic times. 53 Gets up and wanders or awakens frequently at night, more than usual. 54 Sleeps more. 55 Behaviour more agitated or impaired in late afternoon. < Total Sleep/Activity/Sundowning 11 Motor/Spatial Problems 56 Poor coordination seen in limb/finger movements. 57 Slowness of movement 58 Unsteadiness when walking. 59 Has trouble dressing, especially with buttons or shoelaces. 60 Difficulty judging object sizes or how near an object is from themselves. < Total Motor Spatial Problems 12 Language Difficulties 61 Reads far less frequently than previously. 62 Substitutes some words for others. 63 Does not watch or follow television. 64 Does not speak unless spoken to. (e.g. Does not participate in conversations.) 65 Often cannot find the right word. 66 Trouble pronouncing words. 67 Does not understand simple commands, explanations. 68 Does not produce meaningful speech. < Total Language Difficulties < Total Motor Restlessness TOTAL SCORE 76

77 Kingston Standardized Behavioural Assessment - ANALYSIS FORM BEHAVIOURAL PROFILE TOTAL SCORE ANALYSIS COMM INST Total Score Descriptions Total Score Total Score Descriptions Total Score Language Difficulties Motor/Spatial Problems Sleep/Activity/Sundowning Motor Restlessness Perseveration Judgement/Insight Paranoid Behaviour Misperceptions Aggressive Behaviour Emotional Behaviour Attention/Concentration/Memory Daily Activities COMPARISON SCALE To produce a behaviour profile, count the number of items checked for each behavioural group and circle that number on the above chart in the appropriate column. To the right of the profile chart are columns for total score analysis. Select the appropriate column and circle the number matching the total score. (COM = community living; INST = institutional living). 77 C O N S I D E R P L A C E M E N T C O N S U L T / C O N C E R N C R I S I S C O N S U L T / C O N C E R N

78 KSBA Behavioural Analysis Procedures August COMM STEP 1 CIRCLE SUM OF TOTAL ITEMS SCORED (See arrow) COMPARISON SCALE Daily Activities Attention/Concentration/Memory Emotional Behaviour Aggressive Behaviour Misperceptions Paranoid Behaviour Judgement/Insight Perseveration Motor Restlessness Sleep/Activity/Sundowning Motor/Spatial Problems Language Difficulties All Items Total Score Descriptions STEP 2 READ TOTAL SCORE PERFORMANCE CLASSIFICATION IN COLUMN TO RIGHT (See arrow) STEP 3 CREATE BEHAVIOURAL PROFILE BY CIRCLING SUM OF ITEMS SCORED FOR EACH BEHAVIOURAL GROUP (See arrows). CONNECT CIRCLES, IF DIESIRED C O N S I D E R P L A C E M E N T C O N S U L T / C O N C E R N For explanations and samples as to how to use this form see KSBA Administration and Interpretation Manual, which can be freely downloaded from Clinical Services Geriatric Psychiatry Kingston Scales or e mail: kscales@queensu.ca Copyright 2007 R.W. Hopkins, 78 L. Kilik, D. Day (Sep 2007)

79 Kingston Standardized Behavioural Assessment (KSBA) Definition: The Kingston Standardized Behavioural Assessment (KSBA) was designed to complement cognitive assessment tools by providing an indication of the number of behavioural symptoms associated with dementia which are currently affecting the individual. The KSBA also provides caregivers with comparative data to assist them in making difficult decisions about the required level of care. Kingston Standardized Behavioural Assessment (KSBA) Link to Tool Time to Administer Type chiatry/kingston_scales/ksba_(behaviour)/ Subjective to the person (caregiver) completing the scale and amount of time spent in dialogue with clinician. (Approximately 5-15 minutes) Standardized Assessment Tool Setting Primary Care and Long-Term Care Administration Interpretation Reference The informant (an individual who knows the person on a day-to-day basis) either completes the scale or has the items read to them by a physician. The informant is asked which of the 68 commonly observed behaviours in dementia have occurred in the last month and are a change from their spouse/relative/client s earlier behaviour 1. The number of checked items on the scale is tallied and recorded on the Total Score Descriptions Column corresponding to that individual s current living situation 2. Tally scores for the checked items in each group of behaviours on the KSBA and transfer this to the Behavioural Profile Hopkins R, Kilik L, Day D, Bradford L, Rows C, (2006) Kingston Standardized Behavioural Assessment The American Journal of Alzheimer s Disease and Other Dementias, 21: Kilik L, Hopkins R, Day D, Prince C, Prince P, Rows C. (2008) The progression of behaviour in dementia: An in-office guide for clinicians. The American Journal of Alzheimer s Disease and Other Dementias, 23: (Originally Published online Feb 13th 2008) 79

80 80 August 2009

81 Kingston Standarized Behavioural Assessment ADMINISTRATION AND INTERPRETATION MANUAL (INCLUDING LONG TERM CARE FORM) Geriatric Psychiatry Programme, Providence Care Mental Health Services, Kingston, Canada K7L 4X3 The Kingston Scales and Manuals can be freely downloaded from: Clinical Services Geriatric Psychiatry Kingston Scales e mail: kscales@queensu.ca Copyright 2007 R.W. Hopkins, L. Kilik 81

82 Purpose: Since progressive dementias such as Alzheimer s disease are characterized by behavioural as well as cognitive disturbances, the Kingston Standardized Behavioural Assessment (KSBA ) was designed to complement cognitive assessment tools such as the Kingston Standardized Cognitive Assessment - Revised (KSCA-R) by providing an indication of the number of behavioural symptoms associated with dementia which are currently affecting an individual. The KSBA also provides validation for caregivers struggling with the issue of moving their relative into a long term care setting. This, in our experience, is often a difficult and stressful decision for many family members and they usually leave it too late, impairing their own health as well as that of their relative. By being able to provide an objective score that reflects behavioural issues, a decision about long term care can often be made more easily. This can help to alleviate the distress and sense of guilt caregivers often experience. The information can also be used to facilitate the introduction of home support services. Likewise, for patients already in long term care settings, the KSBA allows staff to monitor and assess the behavioural status of an individual and institute further professional assessments or consultations. Since both the placement and introduction of home support services, not to mention caregiver stress, are almost always triggered by behavioural and not cognitive issues, a behavioural analysis of the individual is of great importance and not something that can be gained easily from other sources. The KSBA consists of two parts, the KSBA form which is a list of 68 commonly observed behaviours in dementia, broken into groups of related behaviours, and a second page, the Analysis Form for summarizing and analysing the reported behaviours. On the reverse side of the Analysis Form page is the Behaviour Analysis Procedures page; listing a brief set of instructions on how to use the Analysis Form. This Analysis Form is used by the health care professional, not the informant. The KSBA provides a powerful behavioural analysis that is normally only available to behaviourally trained clinicians (e.g. psychologists, psychometrists, etc.). Administration: The informant is an individual, who knows the person on a day-to-day basis i.e. spouse or other relative, or in the case of an individual living in long term care, the staff member who knows him or her best. The scale may be completed by the informant, or you can read the items to the informant and ask for a yes/no answer. The instructions are: Please check all of the following behaviours that have occurred in the last month or are presently occurring, and that are a change from your spouse/relative/client s earlier behaviour (prior to illness). Indicate whether they apply by marking the box beside the appropriate statement. The Total Score equals number of boxes checked. That is, all the behaviours that now apply. Not those that were seen months ago but have since disappeared. It should be noted that while many behaviours are discrete acts (like biting or hitting people), that can be fairly easily identified in both time and place, other behaviours like unable to handle personal finances or unsafe in daily activities, if left unsupervised are ongoing. Usually, once an individual is deemed incompetent to perform a task or is shown to be a risk for some behaviour, he or she is not given KSBA Manual 82 2

83 another chance to demonstrate his or her incompetence, but rather are kept away from such activities or closely supervised while performing them. These ongoing behaviours are checked as if they had recently occurred, as it is assumed that once one is unable to perform a task, the individual will continue to be unable. This situation only pertains to progressive dementias and similar disorders where no significant improvement is expected. It is important to remember that one only checks behaviours that are a recent change from the individual s pre-illness pattern of behaviour. To aid in the explanation of some behaviours to the informant, a glossary providing a more detailed explanation of the behaviours listed on the KSBA form is found at the end of this manual. Interpretation: The Analysis Form is divided into two parts; Total Score Analysis and a Behaviour Profile. TOTAL SCORE ANALYSIS On the right side of the Analysis Form page is a group of columns marked Total Score Analysis. The pair on the far right (marked INST) are for patients living in an institution and the two on the left (marked COMM) are for community dwelling patients. One simply counts the number of ticked items on the KSBA form and circles that number in the appropriate All Items column (COMM if community dwelling or INST if institutional dwelling). The Total Score Descriptions column provides the corresponding description for scores in that range. (See Examples on pages 5 to 12.) The Consult / Concern range for either community dwelling or institutional living patients represents the lower part of the response range. Scores in the range of Consider Placement (or in the case of institutional living patients Crisis ), are at a level that may indicate some serious difficulties. Normally, we have found that when community dwelling patients score at or above 38, it becomes increasingly difficult for family caregivers to continue to be able to provide care at home, or at least without considerable help. In the middle ranges, additional services or supports may be required by caregivers. Likewise, institutional living patients scoring above 58 might well benefit from a specialist consult or other intervention. However, it is advised that such consults/interventions be considered long before the Crisis point is reached. It must be remembered that these descriptive ranges are merely labels placed on a continuum, and that there are no true, hard and fixed demarcation points. What caregivers, lay or professional, can handle will vary between individuals and institutions. It must also be remembered, that there are differences between individual patients. If a patient scores only 1, yet that behaviour is related to violent physical outbursts, there would be need for help. At the present time the following statistics apply to the standard scale (NOT the LTC Form) and may be used as a guide. Score refers to the number of behaviours checked. The maximum score is 68. KSBA Score Summary COMMUNITY INSTITUTIONS n 103 n 38 Mean sd Min Max Mean sd Min Max Mean Score / KSBA Manual 83 3

84 BEHAVIOUR PROFILE The large chart on the left side of the Analysis Form page is the Behaviour Profile which lists the 12 groups of related behaviours with one column for each. For each column the number of possible behaviours in that group is displayed, starting with 0 (zero) at the bottom and going up to the maximum number of behaviours in that group, at the top. To fill out the profile, simply count the number of ticked items for each group of behaviours on the KSBA form and put that value in the Total box at the end of each group. Then transfer these values to the profile chart. If desired, these circled scores can be joined up with a line to create a visual profile, unique to each patient. See Examples on pages 5 to 12. It is useful to examine and compare individual groups of behaviours on the Analysis Form to assist in identifying specific behaviours for intervention. On the extreme left side of the Profile chart is a Comparison Scale column that is used to give each of the other column scores a relative value, allowing all groups to be compared to each other. For example, if the score on group 7 (Judgement/Insight) equals 5 and group 6 (Misperceptions) the score equals 3, then both can be said to have a relative score of 7.5. Or if the score on group 7 (Judgement/Insight) equals 4 and group 12 (Paranoid Behaviour) the score equals 2, then the scores represent relative values of 6 and 4 respectively. In this way, relative comparisons (i.e. degree of impairment or sparing) across the 12 groups of behaviours can be made. EXAMPLES On pages 5 to 12 are some sample Total Score Analyses and Profiles taken from actual cases. Examples 1 and 2 are community dwelling individuals but the first is an individual who has a relatively low number of total responses (i.e.14). The second individual is someone at a more advanced stage of dementia with a much larger number of total responses (i.e.49). In this later case, placement was imminent. Due to space limitations on the Analysis Form, some numbers are skipped in the All Items column. (See Example 2.) In these cases indicate the obtained score by placing a mark between the two numbers nearest to the score. Patients who obtain the same total score (e.g. 19) can have distinctly different profiles as can be seen in Examples 3 and 4. REPEATED ADMINISTRATIONS The KSBA is normally used to capture a current snapshot of an individual s behaviour. Typically, current has been taken to mean behaviours that have occurred in the last month. However, the KSBA can also be used to track behaviour change over time including change attributable to specific interventions. In such cases the KSBA may be administered repeatedly, and the interval may also be shorter than one month. When doing so, the reporting interval should match the repetition interval. For example, if you give it once a week to a patient, then only ask for behaviours that have been noted in that past week. One should also make sure that the chosen interval is clearly described when reporting changes over time. KSBA Manual 4 84

85 THE LONG TERM CARE FORM In addition to the standard (68 item community) form, there is a Long Term Care (LTC) form for use in long term care facilities. The LTC form differs from the community form in that 25 new items have been added, while 19 items were removed from the original scale, yielding a total of 74 for the LTC form. The removed items were ones that were unlikely to be applicable to a person in a long term care facility (e.g..shows poor judgement about driving, Is unable to perform usual household tasks). The new items are ones that are much more likely to be seen in long term care residents (e.g. Resistant to bathing, Repeatedly rearranges furniture). The LTC form is therefore better able to capture the essence of the behavioural disturbances seen in long term care patients. Administration and interpretation of the form is basically the same as with the standard community form. The rater being the staff member (or members) who knows the patient best. KSBA Manual 5 85

86 Example 1 August 2009 BEHAVIOURAL PROFILE TOTAL SCORE ANALYSIS COMM INST Total Score Descriptions Total Score Total Score Descriptions Total Score Language Difficulties Motor/Spatial Problems Sleep/Activity/Sundowning Motor Restlessness Perseveration Judgement/Insight Paranoid Behaviour Misperceptions Aggressive Behaviour Emotional Behaviour Attention/Concentration/Memory Daily Activities COMPARISON SCALE C O N S I D E R P L A C E M E N T C O N S U L T / C O N C E R N C R I S I S C O N U L T / C O N C E R N KSBA Manual 6 86

87 Example 2 August 2009 BEHAVIOURAL PROFILE TOTAL SCORE ANALYSIS COMM INST Total Score Descriptions Total Score Total Score Descriptions Total Score Language Difficulties Motor/Spatial Problems Sleep/Activity/Sundowning Motor Restlessness Perseveration Judgement/Insight Paranoid Behaviour Misperceptions Aggressive Behaviour Emotional Behaviour Attention/Concentration/Memory Daily Activities COMPARISON SCALE C O N S I D E R P L A C E M E N T C O N S U L T / C O N C E R N C R I S I S C O N S U L T / C O N C E R N KSBA Manual 7 87

88 Kingston Standardized Behavioural Assessment August 2009 Name: Example 3 Case #: Date: Nov Informant: Daughter Lives in:community_x or HFTA NH Rest Hm Hosp Other Below are listed some behaviours that your spouse/relative/client may show. Please check all of the following behaviours that have occurred in the last month or are presently occurring. Indicate whether they apply by marking the box beside the appropriate statement. The Total Score equals number of boxes checked. X X 1 Daily Activities 1 No longer takes part in favourite pastimes (or greatly reduced). 2 Reduced personal hygiene. (e.g. Would not take a bath unless told to do so, or wears the same clothes for days unless made to change). 3 If left on his/her own, doesn't eat properly. X 4 Unsafe in daily activities, if left unsupervised. 5 No longer uses some common objects properly. (e.g. telephone) X 6 Unable to handle personal finances. X 7 Is unable to perform usual household tasks. 8 Gets confused in places other than home. 9 Overly dependent, wants more guidance than usual. 10 Trouble appreciating subtleties in conversations (e.g. recognizing humor). 11 Difficulty judging the passing of time. 12 Wanders aimlessly. 13 Hides things. 14 Hoards objects. 15 Fails to recognize family or friends. 16 Incontinence of urine/faeces in clothes in daytime. 17 Voids in non-toilet areas. 5 < Total Daily Activities X 20 2 Attention/Concentration/Memory 18 Can't concentrate, pay attention for long. 19 Misplaces things more than usual. Has difficulty organizing his/her time or daily activities. X 21 Forgets activities, conversations of only a short time before. X 22 Forgets important everyday information. 3 < Total Attention/Concentration/Memory 3 Emotional Behaviour 23 Shows little or no emotion. X 24 Mood changes with no apparent reason Expresses inappropriate emotions, either type or intensity. Makes uncharacteristically pessimistic statements. 1 < Total Emotional Behaviour 4 Aggressive Behaviour 27 Verbally abusive at times. 28 Uncharacteristically excitable, easy to upset; reacts catastrophically. 29 Attempts to hit/strike out at others. 0 < Total Aggressive Behaviour 5 Misperceptions/Misidentifications Claims an object/possession looks similar to, but is not the real one. Claims a family member looks similar but is not the true one. Thinks present dwelling is not their place of living. 33 Thinks people are present who aren't. 0 < Total Misperception Behaviour 88 KSBA Manual 8

89 6 Paranoid Behaviour 34 Suspicious of family and friends. 35 Suspicious about money issues. 36 Accuses others of stealing his or her things. 37 Accuses spouse of infidelity. 38 Expresses suspicion around taking medication. 0 < Total Paranoid Behaviour 7 Judgement/Insight 39 Shows poor judgement in social situations. 40 Shows poor judgement about driving. 41 Shows uncharacteristic change in his or her concern about money. 42 Poor choices in dressing. (e.g. wears clothes that are inappropriate for season or temperature, wears the same clothes for days). 43 Makes inappropriate sexual advances. 44 Shows less self control than usual. 45 Unable to identify personal safety risks. 0 < Total Judgement/Insight 8 Perseveration 46 Repeats same actions over and over. 47 Repeats same words or phrases. 48 Repeatedly shouts or calls out. 0 < Total Perseveration 9 Motor Restlessness 49 Desire to pace or walk almost constantly. 50 Can't sit still, restless, fidgety. 51 Tries doors, windows. 0 < Total Motor Restlessness 10 Sleep/Activity/Sundowning 52 Falls asleep at uncharacteristic times. 53 Gets up and wanders or awakens frequently at night, more than usual. X 54 Sleeps more. 55 Behaviour more agitated or impaired in late afternoon. 1 < Total Sleep/Activity/Sundowning X Motor/Spatial Problems Poor coordination seen in limb/finger movements. X 57 Slowness of movement X 58 Unsteadiness when walking. X 59 X 60 Has trouble dressing, especially with buttons or shoelaces. Difficulty judging object sizes or how near an object is from themselves. 5 < Total Motor Spatial Problems 12 Language Difficulties X 61 Reads far less frequently than previously. X 62 Substitutes some words for others. 63 Does not watch or follow television. 64 Does not speak unless spoken to. (e.g. Does not participate in conversations.) 65 Often cannot find the right word. X 66 Trouble pronouncing words. X 67 Does not understand simple commands, explanations. 68 Does not produce meaningful speech. 4 < Total Language Difficulties 19 TOTAL SCORE KSBA Manual 9 89

90 Example 3 August 2009 BEHAVIOURAL PROFILE TOTAL SCORE ANALYSIS COMM INST Total Score Descriptions Total Score Total Score Descriptions Total Score Language Difficulties Motor/Spatial Problems Sleep/Activity/Sundowning Motor Restlessness Perseveration Judgement/Insight Paranoid Behaviour Misperceptions Aggressive Behaviour Emotional Behaviour Attention/Concentration/Memory Daily Activities COMPARISON SCALE C O N S I D E R P L A C E M E N T C O N S U L T / C O N C E R N C R I S I S C O N S U L T / C O N C E R N KSBA Manual 10 90

91 Kingston Standardized Behavioural Assessment August 2009 Name:_Example 4 Case #: Date: Nov Informant: Spouse Lives in:community_x or HFTA NH Rest Hm Hosp Other Below are listed some behaviours that your spouse/relative/client may show. Please check all of the following behaviours that have occurred in the last month or are presently occurring. Indicate whether they apply by marking the box beside the appropriate statement. The Total Score equals number of boxes checked. X 1 Daily Activities 1 No longer takes part in favourite pastimes (or greatly reduced). 2 Reduced personal hygiene. (e.g. Would not take a bath unless told to do so, or wears the same clothes for days unless made to change). X 3 If left on his/her own, doesn't eat properly. 4 Unsafe in daily activities, if left unsupervised. 5 No longer uses some common objects properly. (e.g. telephone) X 6 Unable to handle personal finances. X 7 Is unable to perform usual household tasks. X 8 Gets confused in places other than home. 9 Overly dependent, wants more guidance than X usual. 10 Trouble appreciating subtleties in conversations (e.g. recognizing humor). X 11 Difficulty judging the passing of time. X 12 Wanders aimlessly. X 13 Hides things. 14 Hoards objects. 15 Fails to recognize family or friends. 16 Incontinence of urine/faeces in clothes in daytime. 17 Voids in non-toilet areas. 9 < Total Daily Activities 2 Attention/Concentration/Memory 18 Can't concentrate, pay attention for long. X 19 Misplaces things more than usual. 20 Has difficulty organizing his/her time or daily activities. X 21 Forgets activities, conversations of only a short time before. X 22 Forgets important everyday information. 3 < Total Attention/Concentration/Memory 3 Emotional Behaviour 23 Shows little or no emotion. 24 Mood changes with no apparent reason. 25 Expresses inappropriate emotions, either type or intensity. 26 Makes uncharacteristically pessimistic statements. 0 < Total Emotional Behaviour 4 Aggressive Behaviour 27 Verbally abusive at times. 28 Uncharacteristically excitable, easy to upset; reacts catastrophically. 29 Attempts to hit/strike out at others. 0 < Total Aggressive Behaviour 5 Misperceptions/Misidentifications Claims an object/possession looks similar to, but is not the real one. Claims a family member looks similar but is not the true one. Thinks present dwelling is not their place of living. 33 Thinks people are present who aren't. 0 < Total Misperception Behaviour KSBA Manual 11 91

92 6 Paranoid Behaviour 34 Suspicious of family and friends. X 35 Suspicious about money issues. 36 Accuses others of stealing his or her things. 37 Accuses spouse of infidelity. 38 Expresses suspicion around taking medication. 1 < Total Paranoid Behaviour 7 Judgement/Insight X 39 Shows poor judgement in social situations. X 40 Shows poor judgement about driving. X Shows uncharacteristic change in his or her concern about money. Poor choices in dressing. (e.g. wears clothes that are inappropriate for season or temperature, wears the same clothes for days). 43 Makes inappropriate sexual advances. 44 Shows less self control than usual. 45 Unable to identify personal safety risks. 3 < Total Judgement/Insight 8 Perseveration 46 Repeats same actions over and over. 47 Repeats same words or phrases. 48 Repeatedly shouts or calls out. 0 < Total Perseveration 9 Motor Restlessness 49 Desire to pace or walk almost constantly. 50 Can't sit still, restless, fidgety. 51 Tries doors, windows. 0 < Total Motor Restlessness 10 Sleep/Activity/Sundowning 52 Falls asleep at uncharacteristic times. X 53 Gets up and wanders or awakens frequently at night, more than usual. 54 Sleeps more. 55 Behaviour more agitated or impaired in late afternoon. 1 < Total Sleep/Activity/Sundowning 11 Motor/Spatial Problems 56 Poor coordination seen in limb/finger movements. 57 Slowness of movement 58 Unsteadiness when walking. 59 Has trouble dressing, especially with buttons or shoelaces. 60 Difficulty judging object sizes or how near an object is from themselves. 0 < Total Motor Spatial Problems 12 Language Difficulties 61 Reads far less frequently than previously. 62 Substitutes some words for others. X 63 Does not watch or follow television. 64 Does not speak unless spoken to. (e.g. Does not participate in conversations.) X 65 Often cannot find the right word. 66 Trouble pronouncing words. 67 Does not understand simple commands, explanations. 68 Does not produce meaningful speech. 2 < Total Language Difficulties 19 TOTAL SCORE KSBA Manual 12 92

93 Example 4 August 2009 BEHAVIOURAL PROFILE TOTAL SCORE ANALYSIS COMM INST Total Score Descriptions Total Score Total Score Descriptions Total Score Language Difficulties Motor/Spatial Problems Sleep/Activity/Sundowning Motor Restlessness Perseveration Judgement/Insight Paranoid Behaviour Misperceptions Aggressive Behaviour Emotional Behaviour Attention/Concentration/Memory Daily Activities COMPARISON SCALE C O N S I D E R P L A C E M E N T C O N S U L T / C O N C E R N C R I S I S C O N S U L T / C O N C E R N KSBA Manual 13 93

94 Description of Behaviours 1 Daily Activities 1 - No longer takes part in favourite pastimes (or greatly reduced). - no longer participates in hobbies or previously preferred activities like playing the piano, or card games - reduction in self-directed leisure activities 2 - Reduced personal hygiene. - would not take a bath unless told to do so, or wears the same clothes for days unless prompted to change - reduction in individual s normal self-directed hygiene - care done by nursing staff 3 - If left on his/her own, doesn't eat properly. - will not independently eat adequate meals or will miss meals, even if provided - weight loss may be apparent 4 - Unsafe in daily activities, if left unsupervised. - may leave stove on, water running, choking, unsafe with hot liquids, unsafe getting into bath, etc. 5 - No longer uses some common objects properly. - now seems to have difficultly handling common household objects such as telephones, microwaves, etc. - difficulty with kitchen utensils - knowing what to use 6 - Unable to handle personal finances. - gets confused paying bills - may not pay at all, or pays twice - now someone else has to handle finances 7 - Is unable to perform usual household tasks - such as cleaning, minor repairs, or prepare meals. - gets confused while trying to fix something, - or unable to organize oneself to prepare meals 8 - Gets confused in places other than home. - gets confused in other people s homes or other familiar places such as shopping centres, neighbourhood, etc. - if taken off unit for activities/appointments could not find their way back to unit alone. 9 - Overly dependent, wants more guidance than usual. - asks for more help, or approval from caregiver than in past; relies on caregiver to initiate activities - often described as shadowing 10 - Trouble appreciating subtleties in conversations - now has trouble recognizing humour - does not get jokes 11 - Difficulty judging the passing of time. - may keep asking time of day, etc. - may prepare for appointments etc., several hours before necessary 12 - Wanders aimlessly. - walks around looking lost - not rapid pacing as in motor restlessness 13 - Hides things. - hides things away that do not need to be hidden, e.g. dentures - stores things in inappropriate places such putting a purse or wallet in freezer KSBA Manual 14 94

95 14 - Hoards objects. - more extreme version of hiding; collecting excessive quantity of things 15 - Fails to recognize family or friends. - does not know them or thinks they are someone else 16 - Incontinence of urine/faeces in clothes in daytime. - clothes includes Depends etc Voids in non-toilet areas. - plant pots, hall corners, etc. - not the same as incontinence in clothes or incontinence briefs 2 Attention/Concentration/Memory 18 - Can't concentrate, pay attention for as long as they used to. - attention span reduced, thinking is more muddled, often slower 19 - Misplaces things more than usual. - like normal failures of memory/forgetfulness, only much more frequent - forgets where they put something down e.g. book, glasses, etc Has difficulty organizing his/her time or daily activities. - seems to be busy but accomplishes very little - activities are organized by someone else 21 - Forgets activities, conversations of only a short time before. - within that day 22 - Forgets important everyday information. - such as scheduled appointments and activities, phone numbers, addresses, etc. 3 Emotional Behaviour 23 - Shows little or no emotion. - reduction of normal emotional range 24 - Mood changes for no apparent reason Expresses inappropriate emotions, either type or intensity. - e.g. laughing at news of a death, or crying at mild disappointment 26 - Makes uncharacteristically pessimistic statements. 4 Aggressive Behaviour 27 - Verbally abusive at times. - must be directed at someone or something 28 - Uncharacteristically excitable, easy to upset; reacts catastrophically. - reactions to change are exaggerated - intensity of emotional reaction is excessive for the situation 29 - Physically aggressive. - hitting, biting, pinching, spitting, pushing, hair pulling, etc. KSBA Manual 15 95

96 5 Misperceptions/Misidentifications Behaviour 30 - Claims an object or possession looks similar to, but is not the real one. - e.g. the family car in driveway is not recognized as own car, or a piece of jewellery/glasses is identified as looking similar to but not their own 31 - Claims a family member looks similar (to that person) but is not the true one Thinks present dwelling is not their place of living. - e.g. the person in the nursing home does not recognize that they live in that facility - or, the person who lives in their own home but states they want to or is packing to go home 33 - Thinks people are present who aren't. - thinks people are present in the room or somewhere in the house when in fact they are not e.g. believes that people on TV are real and in the room, a deceased family member is living elsewhere in the house, misinterprets own image in mirror as another person 6 Paranoid Behaviour 34 - Suspicious of family and friends. - accuses family or staff of putting poison in food or drinks 35 - Suspicious about money issues. - suspects people around them are trying to steal their money - suspects people around them are taking unusual interest in their financial affairs 36 - Accuses others of stealing his or her things Accuses spouse of infidelity. - refers to current behaviour not some incident from long past Expresses suspicion around taking medication. - suggests that the contents of the medicine bottle is not what it says on the label - believes that the medicine is poison - NOT questions re the value of the medication 7 Judgement/Insight 39 - Shows poor judgement in social situations. - e.g. Making inappropriate comments - off-coloured jokes - no longer respects the social decorum required in a given situation e.g. unwanted comments on physical appearance 40 - Shows poor judgement about driving. - wants to drive when he or she should not - believes he or she could safely drive despite evidence to the contrary 41 - Shows uncharacteristic change in his or her concern about money. - e.g. very reluctant to pay bills, or may give away money to strangers 42 - Poor choices in dressing. - e.g. wears clothes that are inappropriate for season or temperature. - nursing staff picks out clothing 43 - Makes inappropriate sexual advances. - behaviour should be explicit and not vague references that could be interpreted in many ways 44 - Shows less self control than usual. - problems controlling eating, drinking, etc. (not just memory problem) - e.g. eating a whole pot of chili at one sitting - difficulty denying impulses 45 - Unable to identify personal safety risks. - unable to foresee obviously dangerous outcomes to certain actions KSBA Manual 16 96

97 - unable to take personal safety into account in decision making - will eat food even if clearly spoiled 8 Perseveration 46 - Repeats same actions over and over. - such as tapping or rocking in a chair 47 - Repeats same words or phrases. - includes repetition of syllables or sounds 48 - Repeatedly shouts or calls out. 9 Motor Restlessness 49 - Desire to pace or walk almost constantly. - different from aimless wandering, i.e. faster 50 - Can't sit still; restless; fidgety. - e.g. restlessly moving from chair to chair (or in wheel chair, etc.) 51 - Tries doors, windows. - seems unable to inhibit the tendency to use handles and knobs on things - exit seeking behaviour 10 Sleep/Activity/Sundowning 52 - Falls asleep at uncharacteristic times. - during conversations or during meals, or increased daytime sleep 53 - Gets up and wanders or awakens frequently at night more than usual Sleeps more. - more than usual 55 - Behaviour more agitated or impaired in late afternoon. - ADL is more impaired in late afternoon or early evening; exacerbation of already problematic behaviours 11 Motor/Spatial Problems Score even if due to physical problems e.g. arthritis, vision, etc Poor coordination seen in limb/finger movements. - e.g. difficulty using pens or pencils, or moving a cup to one s mouth - includes tremor 57 - Slowness of movement Unsteadiness when walking Has trouble dressing, especially with buttons or shoelaces. - struggles to put on clothes the right way - lefts and rights frequently mixed up or clothes sometimes on backwards 60 - Difficulty judging object sizes or how near an object is from themselves. - may make exaggerated steps to step over something quite low, such as a crack in the floor, change in carpet colour KSBA Manual 17 97

98 12 Language Difficulties 61 - Reads far less frequently than they used to Substitutes some words for others. - substitutes an incorrect term for an object or uses a nonsensical word - makes substitutions usually without knowing it 63 - Does not watch or follow television Does not speak unless spoken to. (e.g. Does not participate in conversations.) 65 - Often cannot find the right word. - halted speech while struggling to find the right word 66 - Trouble pronouncing words Does not understand simple commands, explanations Does not produce meaningful speech. - caregiver cannot reliably understand person s requests or responses. Items Found Only in the Long Term Care Form 1 Daily Activities 2 - Resistant to bathing. 3 - Refuses to leave own room. 5 - Does not like being touched. 6 - Combines foods not usually eaten together. i.e. mixes food on plate 7 - Refuses to eat. 8 - Drools on self, clothing Eats other s food at meal time Smears faeces. 2 Attention/Concentration/Memory 21 - Easily distracted by surrounding noises Places things in inappropriate places. 3 Emotional Behaviour 27 - Expresses suicidal feelings, threatens to hurt him/herself 4 Aggressive Behaviour 30 - Throws things at, or pinches others. 5 Misperceptions/Misidentifications 36 - Sees or hears things that are not there Talks to pictures or mirrors. 7 Judgement/Insight 43 - Seeks constant attention Eats non-food items Grabs others nearby Shows increased sexual drive, interest Accident prone, gets hurt a lot Invades personal space. KSBA Manual 18 98

99 8 Perseveration 53 - Talks about same topic over and over again Clapping/noise making. 9 Motor Restlessness 59 - Repeatedly rearranges furniture Bangs head deliberately. 12 Language Difficulties 74 - Speaks in meaningless phrases, or unintelligible language. Copyright 2008 [Jan 2008] KSBA Manual 19 99

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101 B Is It Alzheimer s Disease? 10 Warning Signs Checklist for Individual/ Family Memory loss that affects day-to-day function It s normal to occasionally forget appointments, colleagues names or a friend s phone number and remember them later. A person with Alzheimer s disease may forget things more often and not remember them later, especially things that have happened more recently. Difficulty performing familiar tasks Busy people can be so distracted from time to time that they may leave the carrots on the stove and only remember to serve them at the end of a meal. A person with Alzheimer s disease may have trouble with tasks that have been familiar to them all their lives, such as preparing a meal. Problems with language Everyone has trouble finding the right word sometimes, but a person with Alzheimer s disease may forget simple words or substitute words, making her sentences difficult to understand. Disorientation of time and place It s normal to forget the day of the week or your destination-for a moment. But a person with Alzheimer s disease can become lost on their own street, not knowing how they got there or how to get home. Poor or decreased judgment People may sometimes put off going to a doctor if they have an infection, but eventually seek medical attention. A person with Alzheimer s disease may have decreased judgment, for example, not recognizing a medical problem that needs attention or wearing heavy clothing on fa hot day Problems with abstract thinking From time to time, people may have difficulty with tasks that require abstract thinking, such as a balancing a cheque book. Someone with Alzheimer s disease may have significant difficulties with such tasks, for example not recognizing what the numbers in the cheque book mean. Misplacing things Anyone can temporarily misplace a wallet or keys. A person with Alzheimer s disease may put things in inappropriate places: an iron in the freezer or a wristwatch in the sugar bowl. Changes in mood or behaviour Everyone becomes sad or moody from time to time. Someone with Alzheimer s disease can exhibit varied mood swings-from calm to tears to anger- for no apparent reason. Changes in personality People s personalities can change somewhat with age. But a person with Alzheimer s disease can become confused, suspicious or withdrawn. Changes may also include apathy, fearfulness or acting out of character. Loss of initiative It s normal to tire of housework, business activities or social obligations, but most people regain their initiative. A person with Alzheimer s disease may become very passive, and require cues and prompting to become involved. 101

102 102 August 2009

103 Dementia Observation System August 2009 Use corresponding numbers to record in ½ intervals. 1. Sleeping in Bed 5. Restless, Pacing 2. Sleeping in Chair 6. Exit Seeking 3. Awake/Calm 7. Aggressive verbal 4. Noisy 8. Aggressive physical YMD Time Schindel Martin, L. (1998). The dementia observational system: A useful tool for discovering the person behind the illness. Long Term Care, 8(4), B 103

104 Dementia Observation System Use corresponding numbers to record in ½ hr intervals 1. Sleeping in Bed 3. Awake/Calm 5. Restless, Pacing 7. Aggressive -verbal 2. Sleeping in Chair 4. Noisy 6. Exit Seeking 8. Aggressive - physical YMD 07/01/08 07/01/09 07/01/10 07/01/11 07/01/12 07/01/13 07/01/14 Time , Buspar 5mg , , 7 4, , 7 2 4, , , 5 4, , 5 5, , , , , 6 4, , , 5, , , 5, , , , 5 3 4, 5 4, , , 7 3, 4 4, , 7 3, 4 4, , 7 3 4, , 7 3 4, , , , 5 5, , 5 5, 6, Buspar 2.5mg , 5 5, 6, , , 6, , , 6, , , 6, , 5 3 3, 4, , , 5 3 3, 4, , 3, , 5 1 3, 4, , 7, 6, , 5 1 3, , , 5 1 3, , 4, , 7 1 3, , 7, , 4, 3 1 3, , , 4, 6 1 3, , 7, , 4 1 3, , , 1 3, , 4, , , , , 6, 7 1 3, , , , , 4, , 6, , ,

105 Dementia Observational System (D.O.S) August 2009 Schindel Martin, L. (1998). The dementia observational system: A useful tool for discovering the person behind the illness. Long Term Care, 8(4), Why do we use the D.O.S.? The D.O.S. is used to assess the person s activities over the course of a 24 hour cycle; it is an attempt to answer the clinical question What is the rhythm of this person s day? This tool provides the clinical team with information that will replace opinion with measurable data and helps to determine if there is evidence to support a behavioural diagnosis such as a sleep pattern disturbance. The D.O.S. also helps to determine the % of time over the 24 hour cycle that the person displayed a behaviour of concern, such as the vocally disruptive; it helps the team to determine if interventions are helping to reduce the frequency of any behaviour of interest; this tool is most helpful because it replaces opinion with measurable data by establishing the: Occurrence of a distinct behavioural entity Frequency with which target behaviours occur Duration the target behaviour is displayed Frequency with which the target behaviours of the GREATEST risk are display in comparison with those behaviours that should be ACCOMODATED General Information The D.O.S. is a caregivers descriptive worksheet that comes in two versions: 1. Standardized Has behavioural key that tracks sleep, calm/awake noise, restlessness, exit-seeking, verbal aggression, and physical aggression Most useful for the person who is newly admitted and has a scant behavioural history; use this to determine what behaviours the person is likely to display that might require an intervention plan 2. Individualized Has behavioural key that describes up to eight behaviours; these target behaviours can be welldefined and written on the form to capture the unique characteristics of the person s profile Designed so that the lower the number assigned to the behaviour, the lower the associated risk The higher the number, the higher the associated risk with that behaviour Note: for both versions it is very important to include positive behaviour labeled, as awake/calm. If behavioural key does not include these anchors, portions of the 24 hours map will either be left blank or staff will write descriptors into the squares, resulting in inconsistencies. It is recommended for both versions that the first three anchors remain the same i.e. sleeping in bed, sleeping in chair, awake and calm. This is important because if you are evaluating a behavioural or psychopharmacological intervention, you will need to know if the target behaviour reduces in frequency simply because the person is sleeping a good deal of the time as a side effect of medications that are either introduced or titrated to higher doses. 105

106 When do you use the D.O.S.? Upon admission for the first 7 14 days, using the standardized version to establish a baseline for behavioural profile Whenever there is a change or concern in the person s typical behavioural profile Whenever the team needs an outcome measure to determine if the target behaviour has changed in frequency and duration How do we administer the D.O.S.? Select the corresponding number from the behavioural key that best describes the person s behaviour within the time period and record that in the slot provided under the appropriate date. Record the behaviour in 30 minute intervals for the duration of 7 14 days or as directed by the clinical leader. It is important to keep the following principles in mind: Consult with the health care aides when designing the individualized behavioural key so that it is representative of the behaviours they are observing and a team approach to care. Review the observational record as frequently as possible and give staff positive feedback for completing it, so the recorders see that it is a useful tool. Don t worry if pieces of time are missing from the record, you will still likely be able to get a better picture of what is going on in a 24 hour cycle over 7-14 days than you would if you only had the progress records available to you. How do we interpret the results? Using coloured highlighter pens, assign colours to each of the numbers on the behavioural rating key; collapse categories using one colour. For e.g., on both versions of the record, categories 1 and 2 represent sleep pattern, therefore a single colour can be used for numbers 1 and 2. If you have the following colours available, it is most helpful to assign them in the following fashion: BLUE: sleep GREEN: calm/awake (or any other category that represent neutral behaviour) YELLOW: restlessness, low level agitation ORANGE/PINK: higher level agitation and verbal aggression RED: physical aggression August 2009 Using the coloured markers, colour each 30 minute square, for each 24 hour cycle with the appropriate colour. For each 24-hour column, calculate the number of hours spent in sleep, calmness, restlessness, verbal aggression/agitation, and physical aggression Summarize your analysis in the person s progress record with a note that describes the total number of days of the record, ranges of hours spent in each category of behaviour, and any significant negatives. E.g., There is no evidence on the Dementia Observational Record of any periods of physical aggression during the 7-day period of observation ; The periods of noisemaking are episodic and time-limited, ranging from hours in length, usually occurring between hours. Communicate your findings to the appropriate team members, e.g., the physician who may be using it as one piece of data to consider in making a decision to start or change a medication. 106

107 Using the DOS as a Tool to Assist You in Working With Your Family Health Team (adapted from P.I.E.C.E.S. Dementia Observation System) Included below are some tips to assist you to use the Behavioural/Dementia Observation System to gather and communicate important information about new and distressing behaviors. This information will help you and your family doctor and other members of the care team to determine the best approach to care. In conversation with your healthcare team decide what behaviors are of greatest concern or risk. Some of the changes in behavior most often reported by families are listed below: August 2009 suspiciousness accusing others physically threatening rapid emotional changes threatening to harm self tearfulness agitation verbally threatening sleeping during the day awake at night repetitive actions that are disruptive This list may help you and your healthcare team to identify the behaviors of greatest concern. Have a look at the list as this may help you and the health care team describe and identify what you are seeing. Because everyone is different there may be something that you and your family member may be experiencing that is not on the list. Together with the team choose only a couple of behaviors to monitor at one time. Complete the Behavioural/Dementia Observation System as best as you can for 3-4 days. Each behavior you have identified is given a number and is written at the top left hand corner of the page. For example: 1. Pacing 2. Awake at night Over the course of the 3 days when the identified behavior occurs mark the corresponding number/s in the appropriate time slot if more than one of the identified behaviours occur at the same time include the corresponding numbers in the same time slot. It is not necessary to get up at night to record night-time behaviors. It is sufficient to record these behaviors the next morning. B 1. Pacing 2. Awake at night EXAMPLE Date Monday Tuesday Wednesday Thursday Friday COMMENTS 3:00am :00 am

108 BEHAVIOURAL/DEMENTIA OBSERVATION SYSTEM August 2009 NAME Date 7:00 am COMMENTS 8:00 am 9:00 am 10:00 am 11:00 am 12:00 pm 1:00 pm 2:00 pm 3:00 pm 4:00 pm 5:00 pm 6:00 pm 7:00 pm 8:00 pm 9:00 pm 10:00 pm 11:00 pm 12:00 am 1:00 am 2:00 am 3:00 am 4:00 am 5:00 am 6:00 am 108

109 The 7 D s to Define Severity: Monitoring Response for Behaviour and Psychosis P.I.E.C.E.S. Patient s Name: Date: A// DANGEROUS 1. Dangerousness Yes No Immediate High Risk To Self To Others Residents Caregivers Staff Potential High Risk Intermediate Low B// DISTRESS AND INDEPENDENCE 2. Distress (Psychological/ Social) High Intermediate Low Expressed Distress Objective observed (ie agitation) 3. Directing Action 4. Disturbing relationships and defining place of residence C// DISABILITY 5. Disability (Medical/Functional) Yes No Comments A. Medical Affecting physical health & nutrition Affecting medical treatment, medical illness (ie.e drug Rx) B. Functional Dressing Eating Ambulation Transferring Hygiene Other 2 D s that are useful additional characteristics for monitoring: 1. Distant vs. Present 2. Definitive vs. Fixed B 109

110 Using the 7 D s 1) Determining the risk and need for immediate action 2) Defining the disability and need for treatment and what type of treatment (non pharmacological, atypical, dementia drugs) 3) Monitoring response to treatment 4) As a vehicle to assist in collaborative care *NOTE* The first things to respond to are the: 1) Distress and disturbing characteristics 2) Individual may identify these are occurring more in the past 3) Then the delusion itself (if ever) 110

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113 CONDITIONS EITHER ASSOCIATED WITH AND / OR RESPONSIBLE FOR COGNITIVE IMPAIRMENT Delirium Periodic Health Exam Tools for Screening and Identification Red Flags for Potential Delirium 113

114 114 August 2009

115 Red Flags for Potential Delirium Over 75 years old Post surgical Chronic illness Previous delirium episode Diagnosis of dementia/cognitive impairment Drugs (polypharmacy, psychoactives anticholinergics, alcohol abuse) Poor nutritional status (dehydration, malnutrition) Contributing factors Sensory losses (sight, hearing) Environmental change Social losses If there is a positive flag consider prevention 1. Maximizing health 2. Maintaining brain health 3. Educating individual/family about maintaining brain health 4. Consider potential for possible delirium before surgery or medications or medications B 115

116 Red Flags for Potential Delirium Definition: Collection of red flags for potential delirium from the VIHA website as well as expert opinion. Red Flags for Potential Delirium Link to Tool No link available Time to Administer Type Setting 5 minutes Non-Standardized Screening Tool Primary Care Administration Checklist Interpretation Red flags for clinical consideration Reference Vancouver Island Health Authority (2006). Delirium in the older person: A medical emergency. Retrieved May 20 th 2009 from<< E3200F2D71/0/decision_tree_09.pdf>> 116

117 Tools for Delirium Assessment and Management The Confusion Assessment Method (CAM) (see Algorithm for Diagnosing Delirium Causes for Delirium Checklist Causes of Delirium: DELIRIUMS CHAOS 117

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119 Confusion Assessment Method Instrument (CAM) Definition: The Confusions Assessment Method (CAM) was originally developed to identify delirium quickly and accurately. The full CAM or shortened version can be used to detect the presence of delirium in individuals. Confusion Assessment Method Instrument (CAM) Link to Tool Time to Administer Type Setting Administration Interpretation Form only: Form, administration and scoring manual: FF24-41E3-BDC5-41CFE4E44F33/0/cam_training_pkg.pdf 5-10 minutes Standardized Screening Tool Primary Care Information is gathered from an interview with the individual and from discussions with caregivers and family members, a review of the individual s chart, as well as observations by the interviewer. A delirium should be suspected if features 1 and 2 and either 3 or 4 are present. If so, further investigation is warranted to confirm a diagnosis of delirium Cole, M. (2004). Delirium in elderly patients. American Journal of Geriatric Psychiatry, 12, Dolan, M., Hawkes, W., Zimmerman, S., & Morrison, R. (2000). Delirium on hospital admissionin aged hip fracture patients: Prediction of mortality and 2 year functional outcomes. Journal of Gerontology: Medical Sciences 55A, M527-M534. Reference Inouye, S.K. (2008). The Confusion Assessment Method (CAM): Training manual and coding guide. New Haven: Yale University, accessed, May 2, 2008, from Inouye, S.K., van Dyck, C.H., Alessi, C.A., Balkin, S., Siegal, A.P. and Horowitz, R.I. (1990). Clrifying confusion: The confusion assessment method: A new method for detection of delirium. Annals of Internal Medicine, 113, Milisen, K., Foreman, M.D., Abraham, I.L., De Geest, S., Gooderis, J., Vandermeulen, E., et al. (2001). A nurse-led interdisciplinary intervention program for delirium in elderly hipfracture patients. The Journal of the American Geriatrics Society, 49, Marcantonion, E.R., Flacker, J.M., Wright, R.J., & Resnick, N.M. (2001). Reducing delirium after hip fracture: A randomized trial. The Journal of the American Geriatrics Society, 49,

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121 Algorithm for Diagnosing Delirium Determining Diagnosis Key Question Think 3 C s C C hange ommunicate Has there been a significant change in last few weeks? Has the family/friends noted an acute change in their ability to communicate? Has there been an acute change in capabilities? C apabilities If Delirium, What s the Cause? Think 4 Ms 4 M s M M M M edicine; over the counter, prescription starting, stopping and drug interactions, substances (alcohol) edical illness; (1) Particularly cardiac or respiratory (2) Re-emergence of past or chronic illness (3) New acute illness, i.e., UTI, pneumonia, etc. icrobials; infections etabolic (hemalogical) B 121

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123 Causes for Delirium Checklist MEDICINES Prescribed Medication : New Ones Yes No : Withdrawn recently Yes No : Syndrome of sudden compliance Yes No :Adherence problems (mixing up meds) Yes No Over-the-Counter Medication Yes No (Remember over the fence) Substance Misuse :Alcohol Yes No :Other Yes No MEDICAL ILLNESS Myocardial Infarction Yes No Respiratory Yes No Hypoxia Yes No Relapse or new medical illness Yes No MICROBIALS Infection, Particularly UTI or pneumonia Yes No METABOLIC Hydration Yes No Others Yes No Remember! Usually multiple causes. Remember! One cause may be found as initial reason followed by another cause causing a relapse or responsible for lack of recovery Remember! Many times, it is delirium and no cause is found B 123

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125 Causes of Delirium: DELIRIUMS D Drugs: (Prescription, OTC, Herbal, Alcohol) Minimize anticholinergic load E Emotional: (Depressed, Mania/ Depression) and Environment L Low O2 States (MI, CHF, COPD, Pulmonary Embolus) I Infection: Pulmonary / Urinary / Abdominal / Skin: Deep Decubitus R Retention: Urinary and Feces I Ictal: Seizures U Under: Hydration, Nutrition, Sleep M Metabolic Changes: Blood Sugar, Calcium & Sodium S System Failure: Stroke, Subdural and Stress A useful acronym when looking for underlying cause(s) of a delirium is the acronym "DELIRIUMS" (see above). There are many potential causes of delirium but the big 4 cause of delirium are drugs, infection, system failure and metabolic. It is important to appreciate that in many cases there are multiple predisposing and precipitating factors present. 125

126 126 August 2009

127 CHAOS Treatment Checklist With permission from author Jean Nelson CHAOS Treatment Checklist C Eliminate cause, calm gentle approach (Think 4M s) H Hydrate, nourish A Ambulate (Ensure mobility is maintained) O Orientate, increase observation Ensure consistent environment, people (family and staff), good lighting etc Remember, do not challenge misperceptions but address fears, provide structure and reassurance S Set free, address safety, sleep, sensory needs, stimulation and socialization Avoid unnecessary sedation and restraints Reminder: 4 M s (Causes of Delirium) 1. Medicine 2. Medical 3. Metabolic 4. Microbials (infections) B 127

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129 Depression Office and Primary Care Checklists Signs of Depression: SIG E CAPS 129

130 130 August 2009

131 Name of Resident/Client: Date: Signs of Depression: SIG E CAPS S I Sleep is disrupted Interest is decreased G E C A P S Guilt (feelings of guilt, having regrets, etc) Energy is lower than usual Concentration is poor and memory problems may occur Appetite is disturbed, usually a loss of appetite accompanied by weight loss Psychomotor retardation or agitation Suicidal ideation, at leas a passive wish to die, is frequently present B 131

132 SIG E CAPS Definition: An acronym which reflects the Diagnostic and Statistical Manual of Mental Disorders, DSM-IV, American Psychiatric PR, 4 th Edition, June 15, 2000 criteria for major depression SIG E CAPS Link to Tool No Link Available Time to Administer Type 1 Minute Non Standardized Assessment Tool Setting Administration Observe the patient for the listed criteria Interpretation If 5 symptoms are present, the patient likely suffers from a major depressive episode which will require active treatment. Reference References: Dr. Carey Cross Jenike, M. (1989). Geriatric Psychiatry and Psychopharmacology: A clinical approach. p. 36. Chicago: Yearbook Medical Publishers Inc. 132

133 Tools for Mood / Anxiety Assessment and Management Cornell Scale for Depression NICE Job Aid for Depression 133

134 134 August 2009

135 Cornell Scale for Depression August 2009 Person Name: Administered: Date: Administered at (check one) Assessment By: Discharge Mood-related Signs 1. Anxiety.. anxious expression, ruminations, worrying 2. Sadness.. sad expression, sad voice, tearfulness 3. Lack of reactivity to pleasant events. 4. Irritability Easily annoyed, short tempered Cyclic Functions 12. Diurnal variation of mood symptoms worse in the morning Difficulty falling asleep later than usual for this person Multiple awakenings during sleep Early morning awakening earlier than usual for this person... Behavioural Disturbance 5. Agitation... restlessness, handwringing, hairpulling 6. Retardation slow movements, slow speech, slow reactions 7. Multiple physical complaints (score 0 if GI symptoms only) Loss of interest less involved in usual activities (score only if change occurred acutely, i.e. less than 1 month)... Ideational Disturbance 16. Suicide feels life is not worth living, has suicidal wishes, or makes suicide attempt Poor self-esteem self-blame, self-depreciation, feelings of failure Pessimism anticipation of the worst Mood-congruent delusions delusions of poverty, illness, or loss... Physical Signs 9. Appetite loss eating less than usual Weight loss (score 2 if greater than 5 lbs. in 1 month) Lack of energy fatigues easily, unable to sustain activities (score only if change occurred acutely, i.e. in less than 1 month).. Scoring System Ratings should be based on symptoms and signs occurring during the week prior to interview. No score should be given if symptoms result from physical disability or illness. 0 = absent 1 = mild or intermittent 2 = severe N/A = unable to evaluate 135

136 Cornell Scale for Depression in Dementia Definition: The Cornell Scale for Depression in Dementia was designed to assess signs and symptoms of major depression in people with cognitive impairment. Cornell Scale for Depression in Dementia Link to Tool Time to Administer Type Relevance Administration Interpretation Reference Tool: minutes Standardized assessment tool For use in community, hospital and long term care facilities Scores are determined by a combination of prior observation and two interviews: 20 minutes with the caregiver and 10 minutes with the patient. All symptoms (occurring on a regular, persistent basis only) are rated for severity in three grades; 0= absent 1= mild or intermittent 2= severe No score is given if the interviewer is unable to evaluate the symptom. The administration and scoring guidelines should be read and the assessor should be familiar with the instrument before attempting the Cornell. The guidelines provide detailed information about how to ask each question and the meaning of the questions. The answers should be based on symptoms from the week prior to the interview. Depressive symptoms are suggested by a total score of 8 or more. Alexopoulos, G.S. (1988) Cornell Scale for Depression in Dementia. Biological Psychiatry, 23(3), p

137 7B August 2009 The Cornell Scale for Depression Why do we use the Cornell? The Cornell provides a quantitative rating of depression in persons with or without dementia. The scale was designed to utilize information obtained from caregivers, as well as an interview with a person. Frequent coexistence of depression and dementia in older people suggested the need for a depression-rating instrument designed specifically for use in this group. The Cornell is found to be reliable, sensitive and valid in rating depression in a population of demented subjects with various degrees of depression. Scoring is based on both observation and verbal feedback. The scale is designed as screening tool and is not diagnostic (Alexopoulous, Abrams, Young, Shamoian, 1988).. How do we administer the Cornell? Administration requires two separate interviews. The clinician first interviews the person's caregiver: During the caregiver interview, the clinician inquires about the signs and symptoms of depression as they appear on the scale. Additional descriptions can be used to clarify to the caregiver the meaning of an item. The clinician assigns preliminary scores to each item of the scale on the basis of the caregiver's report. Next, the clinician briefly examines the person using the Cornell scale items as a guide. If there is disagreement between the clinician's impression and the caregiver's report, the caregiver is interviewed again in order to clarify the source of discrepancy. Finally, the clinician scores the Cornell scale based on his/her judgement formed during this process. Please note: Two items, loss of interest and lack of energy require both a disturbance occurring during the week prior to interview and relatively acute changes in these areas occurring over less than one month. The Scale 19 questions distributed within five major headings (mood-related signs, behavioural disturbance, physical signs, cyclic functions and ideational disturbance). Each question is scored on a three-point scale: 0 = absent; 1 = mild or intermittent; 2 = severe; n/a = unable to evaluate. The item "suicide" is rated with a score of 1 if the person has passive suicidal ideation, e.g. feels like life is not worth living. A score of 2 is given to subjects who have active suicidal wishes, or have made a recent suicide attempt. History of a suicide attempt in a subject with no passive or active suicidal ideation does not in itself justify a score. The clinician is to mark an n/a when an item cannot be evaluated. 137

138 Older persons often have disabilities or medical illnesses with symptoms and signs similar to those of depression. Scoring of the Cornell scale on such items as "multiple physical complaints", "appetite loss", "weight loss", "lack of energy" and possibly others may be confounded by disability or physical disorder. To minimize assignment of falsely high Cornell scale scores in disabled or medically ill persons, raters are instructed to assign a score of "0" for symptoms and signs associated with these conditions. In many cases the relationship between symptomatology and physical disability or illness is obvious. In some persons, however, this determination cannot be made reliably. There is a maximum score of 38. The ratings are based on behaviours observed or reported the previous week. The five categories (mood-related signs, behavioural disturbance, physical signs, cyclic functions, and ideational disturbance) provide a format to assist the interviewer in organizing his/her assessment interviews and observation. The total time for administration and rating of the Cornell Scale is approximately 30 minutes. How do we interpret the results? (adapted from: Alexopoulous et al., 1988, p. 232, Table 2)*: Caution must be used when interpreting the score. It is important for the clinician to note the exact responses. This will allow a more consistent interpretation of the scores in each area when the tool is used. Average Cornell Ratings No psychiatric diagnosis 1.4 Non-depressive psychiatric disorders 4.8 Minor or probable major depressive disorder 12.3 Definite major depressive disorder

139 Are my older patients at higher risk of depression? August 2009 Risk factors socially isolated persistent complaints of memory difficulties chronic disabling illness major physical illness within the last 3 months persistent sleep difficulties somatic concerns or recent-onset anxiety refusal to eat or neglect of personal care recurrent or prolonged hospitalization diagnosis of dementia, Parkinson s disease, or stroke recent placement in a nursing/ltc home If your patient is recently bereaved active suicidal ideation guilt not related to the deceased psychomotor retardation mood congruent delusions marked functional impairment (2 months after loss) reaction that seems out of proportion to the loss Further Assessment: A complete biopsychosocial assessment should be conducted following a positive screen for depression. Details for this assessment are listed on the reverse. Available depression assessment tools for elderly persons without significant cognitive impairment: Geriatic Depression Scale (GDS) the SELFCARE self-rating scale the Brief Assessment Schedule Depression Cards (BASDEC) Available depression assessment tools for elderly persons with moderate to severe cognitive impairment: Cornell Scale for Depression in Dementia CANADIAN COALITION FOR SENIORS MENTAL HEALTH To promote seniors mental health by connecting people, ideas and resources 139 COALITION CANADIENNE POUR LA SANTÉ MENTALE DES PERSONNES ÂGÉES Promouvoir la santé mentale des personnes agées en reliant les personnes, les idées et les ressource