1.1-' I-I

ADCS - ACTIVITIES OF DAILY LIVING (ADL) INVENTORY

NOTES: (1) {P} refers to the participant and should be replaced by the participant'sname or relationship to the study partner each time an ADL questionis asked of the study partner.

(2) This ADL inventory must be given in the format of an interview of thestudy partner, either directly or by telephone. The form should NOT begiven to a study partner to complete on his/her own.

READ THE FOllOWING INSTRUCTIONS TO THE STUDY PARTNER:

I am goingto ask you about a numberof daily activitiesthat {P} may have performedduringthe past4 weeks. Pleasetell me about {P}'s actual performance,not aboutwhathe/shecould havedone if an opportunityhad arisen. For each activitythat {P}attempted, I'mgoing to ask you to chooseone out of a numberof descriptionsthat bestfits his/hermost usual performance.

For some activities, I'll ask about whether {P} performed independently, or withsupervision or help. Let me explain how we are defining these words:

Independently means that {P} completed the activity without being helped. We stillconsider it independent if {P} was reminded or prompted to get started, orreceived a little prompting while performing the activity.

With supervision means that {P} required verbal reminders and instructions whiledoing the activity.

With help means that {P} was given some degree of ~ assistance by anotherperson to perform the activity.

INSTRUCTIONS FOR THE RATER:

If the study partner states that {P} had no opportunity to perform the task during the pastfour weeks (e.g., {P} did not have access to a telephone, therefore could not possiblymake phone calls), the response should be recorded as 'no.'

If either the study partner's answer or the questionnaire are unclear, please make noteson the case report form detailing the problem.

For questions regarding specific ADL items, please refer to the ADL Response Card.

ADCS - Activitiesof DailyLiving(ADL) Inventory

A. General Remarks

There are widely varying ways to carryout ADL, especially Instrumental ADL.This leads to difficulty when trying toobtain ADL ratings from an informant in astandardized way for a clinical trial. TheADCS - ADL Inventory approaches theproblem by offering detailed descriptionsof each activity, and by asking theinformant to describe observed actions orbehaviors. The informant is asked to

focus on the past 4 weeks. The informantmust not estimate what the patient mightbe able to do had an opportunity arisen,but on what the patient actually did. Theinformant should not try to interpret thepatient's thought processes or intentions.To help the informant to remain focusedon observed actions and behavior duringthe past 4 weeks, it may be useful to askhim/her for examples of what the patientdid regarding the ADL in question.

B. Administering the ADCS - ADLInventory

The ADCS - ADL Inventory was devel-oped and tested as an interview adminis-tered by a rater in person or by tele-phone. It should not be filled out by theinformant.

C. Format of Questions

. For each basicADL (questions 1-5,6A), there is a forced choice of bestresponse.All other ADL consist of a main

question followed by subquestions(descriptors) .Subquestions are arranged inhierarchical fashion, starting with thehighest (most independent) level of

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.ADL performance and ending withthe lowest.

For each ADL, the initial response tothe main questions is "yes", "no" or"don't know". If an informant gives 4or more "don't know" responses, it isworth trying to identify an alternativeinformant.

After a "no" or "don't know" re-

sponse, the subquestions aredisregarded unless specific instruc-tions indicate otherwise. "No" or"don't know" act as fast forward cuesto proceed to the next ADL.

After a "yes" response, there are 2possible paths:

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1. From several descriptors, theinformant chooses the one that best

matches the patient's performance(e.g., question 6A). The informantshould be offered as many descrip-tors as necessary to describe thepatient's ADL ability, starting from thehighest level and proceeding down-wards

or

2. The informant makes a "yes" or"no" choice for each subquestion.There is a reminder in these cases to

ask every question after an initial"yes" (e.g., question 8).

D. Standardizing "indepen-dently", "with supervision",and "with help"

For many ADL, the hierarchy depends onhow much intervention is needed by theinformant or others to enable the patientto perform the ADL.

Independently = the patient completedthe ADL without physical help, and atmost with reminders to do the task, or abrief prompt during the ADL.

ADL

With supervision = the patient requiredverbal reminders and instructions whiledoing the ADL; this occupied thecaregiver's (or informant's) time.

With help = the patient was given somedegree of physical assistance by anotherperson to perform the ADL.

E. "Usual" performance of ADL

Patients may vary from day to day in theirADL performance. If an informantresponds that a patient sometimesperforms ADL at one level and some-times at another, the interviewer shouldask him/her to choose the most com-

monly applicable level/descriptor.

When In doubt about a higher or lowerlevel of ability, rate the higher one if thepatient does manage to perform at thatlevel fairly consistently.

F. Comments on specific questionsin the Inventory

1. Eating: self-explanatory

2. Walking: we are interested in mobility,not specifically walking. If the patientused a walker or wheelchair, but wasmobile outside of home without help, he/she is independent.

3. Toileting: self-explanatory

4. Bathing: minor physical help includesactions such as washing hair, help withdrying, running the water or adjusting itstemperature. More extensive help shouldbe scored as needing to be bathed.

5. Grooming: toenail cutting is not ratedsince physical difficulty may impede thisaspect of grooming, even in cognitivelynormal elderly.

6A. "Selecting" clothes impliesactiveparticipationbythe patient.This may

involve physically selecting clothes, orproviding input to the caregiver aboutwishes or preferences. It is rated sepa-rately from physically getting dressed.

68. Dressing: the 3rd and 4th levels aresimilar. The intention is that "help only forbuttons, clasps or shoelaces" impliesonly a minor contribution from thecaregiver, i.e., the patient performs somedegree of fastening, zipping or tying.Using "clothes needing no fastening orbuttoning" implies that these have beencompletely abandoned. Velcro counts asa fastener.

7. Telephone: reminders or supervisionare allowable but not help, e.g., a patientcan be prompted to dial directory assis-tance, or told the number and still scoreat the highest level. If the patient makescalls only if the numbers are dictated bythe caregiver, or if the telephone is set upto automatically dial one of a preselectedgroup of numbers on pressing a singlebutton, the patient scores 2 points.

8. Television: if the patient sits in frontof a television screen without demon-

strating awareness or recollection ofsomething he/she sees, then allsubquestions will be answered as "no"."Talk about the content of a program"should be interpreted fairly broadly; thepatient does not need to initiate theconversation, but should require morethan a "yes" or "no" answer to a questionlike "Did vou enjoy the program?"

9. Conversation: "paid attention"

implies more than being present andseemingly alert during a conversation.The patient must participate verbally.Since it is difficult to judge whethernonverbal participation in a conversationis meaningful, it is not an option amongthe descriptors.

10. Clear dishes from a table: thepatient does not have to clear the table

entirely, but should participate enouQ,hto

ADL

make a useful contribution. Clearingitems other than dishes e.g., glasses orutensils are acceptable as alternatives.

11. Finds personal belongings: it maybe helpfulto give examplessuch asclothing,glasses,wallet, keys,etc.

12. Beverage: gettingor preparingabeverageafter instructionsor a re-mindercountsas nophysicalhelp.

13. Mealor snack: if the patientrequired supervision to cook or micro-wave, but functioned without physicalhelp, score as the highest level. Mixingor combining items without cooking canalso include supervision. An example ofthe lowest level of a "yes" response isthe patient who finds and eats food pre-prepared by someone else.

14. Dispose of garbage or litter: doesnot only refer to major householdgarbage produced in a kitchen. Dispos-ing of any trash in an appropriatecontainer qualifies for a "yes" response.

15. Travel: intended to cover the

patient's ability to remain oriented, notget lost and be able to venture beyondhome. It does not matter whether thepatient walked, drove, took publictransport or was a passenger in a car.The distance of 1 mile is arbitrary andimplies travel beyond sight of home.

16. Shopping: shopping is a complexactivity. We have focused on the twomost essential aspects (after getting tothe shop, covered by question 15),choosing items and paying. If the patientgoes shopping with a prewritten list anda sum of money provided by someoneelse, that should be scored as withoutsupervision, provided the patientselected the items on the list. Paying foritems could involve cash, check orcredit; the issue is whether supervision

or help is needed.

17. Keep appointments or meetings:mainly aimed at monitoring memory. An"appointment/meeting" may be liberallyinterpreted to include almost any kind ofpreplanned meeting, outing or excursion.It does not matter who made the appoint-ment or whether the patient traveledalone or with somebody else. The highestlevel implies the patient remembered theappointment on his/her own, memoryaids are acceptable.

18. Left alone: if the patient was leftalone for an hour or longer at home, thenthey automatically will score a "yes" fordescriptor c, "less than 1 hour at home."

19. Talk about current events: thepatient does not need to initiate conver-sation about current events, but mustdemonstrate awareness or recollection

by providing details of the event(s).Merely agreeing or disagreeing with otherpeople by saying "yes or "no" is notsufficient to display knowledge/recall ofcurrent events. Patients who are severelyaphasic will score "no" for talking aboutcurrent events.

20. Reading: looking at a book, maga-zine or newspaper and turning the pagesfor more than 5 minutes on end mayequal reading. Unless the patient com-municates the content of what he/shereads to someone else, it is not possibleto judge whether he/she actually reads ornot, in a way that shows elements ofcomprehension and retention of informa-tion. The informant should be encour-aged to interact with the patient to beable to make an accurate judgment.

21. Writing: short notes or messagescan be either spontaneous or written todictation. A shopping list, "to do" list, ortaking an intelligible telephone messagewould qualify.

22. Pastime, hobbl.2!.Same: the

ADL

menu of hobbies or games is to help theinformant and may provide us withsecondary information if complex hobbiesare lost and replaced by simpler ones. Ahobby should involve element(s) ofconcentration, knowledge and memory,and manual skills. If hobbies other than

those in the menu are offered, try todescribe what the patient does in somedetail so that we can monitor this.

23. Household appliance: an appli-ance is defined as a device with one or

more switches or controls, usually(though not necessarily) with an electricalor other power source, used to dochores. For men, tools with controls orswitches would qualify, but not a screw-driver, hammer or saw. Again, if thepatient needs only minimal verbalprompting to operate the appliance,press a switch, or operate a control, thehighest level is scored.