Alzheimer’s Association Caregiver Survey

1. Alzheimer’s Association Caregiver Survey

2. Majority of caregivers contact a doctor uponnoticing symptoms Question: " When you first noticed symptoms of dementia, what did you do? Checkall thatapply." Reach out to aPCP 66 Talk tofamily/friends 58 Onlineresearch 45 Reachoutto aspecialist Talkto thePWD Callanorganization who specializes inAD Go to amemory lossevent 29 28 13 7 None ofthese 2 0 20 40 60 80 100 %respondents

3. Majority of caregivers reach out to some kind ofphysician for help upon noticingsymptoms Question: " When you first noticed symptoms of dementia, what did youdo?" %respondents 100 80 19 60 10 40 76 47 20 0 Total Reach out to only aPCP Reach to only aspecialist Reach out toboth

4. Many trends observed as participants age; youngerdem. more likely to access info online, less likely to contactPCP Question: " When you first noticed symptoms of dementia, what did you do? Check all that apply."...byage %respondents Age 100 <35 35-44 45-54 55-64 65-75 >76 80 60 40 72717376 64 5856 5963 5351 48 49474444 20 3233 32 30 3029 29 28 24 24 24 2323 17 1514 12 11 74 9 7 4 8 6 4 4 4 1 1 2 0 0 inAD

5. Main factors causing delay in physician contact werePWD & symptomignorance Question: " If you delayed contacting a physician, which were the primary reason(s)?Check all thatapply." The PWD insistedthat they werefine 33 I thought the symptoms were a normal sign ofaging 28 I didn’t want to upset thePWD 17 I didn't think theproblem was thatserious 16 I was afraid ofwhat I mighthear 13 Family/friends I talked to weren'tconcerned 11 I didn't thinkanything could be done aboutit 8 0 20 40 6080100 % respondents who delayed > 6months

6. Children/grandchildren more likely to cite PWD as causefor delay; spouses more likely to think problem isn't serious Question: " If you delayed contacting a physician, which were the primary reason(s)?Check all that apply."...by PWDrelationship % respondents who delayed >6months 50 Grandchild Other- relative or close friend Child/child-in-law Spouse 40 30 20 39 36 32 31 29 28 26 22 22 21 10 19 18 17 1616 16 15 14 13 13 11 11 10 9 9 7 7 6 0 ThePWDinsisted I thought itwasa theywerefine normal sign ofaging I didn’t want to upset thePWD I didn’tthinkthe problem was thatserious I was afraid of what I mighthear Famil/friends I talked to weren’tconcerned I didn’t think anything could bedone

7. Caregivers are actively involved from the beginning ofthe diagnosisprocess Question: "Were you involvedor influential in getting the PWD to meet with aphysician?" Question: "Who was present atthe diagnosis?" % of those who were formallydiagnosed % ofrespondents 100 100 Only acaregiver Only thePWD 12 No 12 14 80 80 60 60 Yes 88 Both thePWD andcaregiver 40 40 74 20 20 0 0

8. Primary reactions to diagnosis are 'seekinginformation' and 'planning'; well aligned with CG actionspost-diagnosis Question: "What was your primaryreaction to the diagnosis? Check up tothree." Question: "What did you do in the first few weeks after diagnosis? Check all thatapply." Discusseddiagnosis withfamily/friends Searchedonlinefor what to donext Madepracticaladjustments to house and dailyroutine Started planningforLTC and legal authority,etc. Continuedlivinglife as I didbefore Soughtout supportgroups Stoppedgoingto usual socialactivities 53 Seekinginformation 62 50 Planning 54 34 Fear 48 25 Depression 39 24 Relief 21 15 Fight 21 Confusion12 17 11 Denial/disbelief 13 Got a secondopinion 6 Isolation 5 Called ahotline 6 Anger Avoidance6 None ofthese 1 0 20 40 0 20 40 60 80 100 % ofrespondents 60 80 100 % ofrespondents

9. Ways to keep the PWD healthy and general informationon dementia/AD considered most helpful afterdiagnosis Question: "What do you think would have been most helpful for you shortlyafter receiving a diagnosis? Check up tothree" Ways for thePWD to stayhealthy Basic infoabout thedisease Futureplanning(legal andfinancialhelp) Practicaladjustments to make to thehouse Connectionto professionalcare Emotionalsupport Connection topeers who areCGs Ways to discussthe diagnosis withfamily Connectionto clinicaltrials Going tosocial activities None ofthese 42 38 35 27 24 23 19 15 12 9 3 0 10 20 30 40 50 % ofrespondents

10. Responses were relatively consistent acrossethnicities; Hispanic need for emotional support washigher Question: "What do you think would have been most helpful for you shortly after receivinga diagnosis? Check up to three"....byethnicity %respondents 50 White/ Other African-American 40 Hispanic/Latino 43 42 20 40 3837 3939 37 33 32 3032 3030 29 28 2525 2726 24 2222 19 20 1920 10 18 17 15 14 14 13 1315 11 11 10 9 8 4 3 3 2 0

11. Initial post-diagnosis needs vary little by PWDrelationship Question: "What do you think would have been most helpful for you shortly after receivinga diagnosis? Check up to three"...by PWDrelationship %respondents 50 40 30 46 43 40 40 40 20 38 37 36 33 3535 16 28 28 2424 2626 2626 25 23 23 20 10 20 19 18 16 1816 16 14 12 12 12 10 10 10 9 7 7 3 2 2 0 Grandchild Other- relative or closefriend Child/child-in-law Spouse Connection to clinicaltrials Going to social events None ofthese Connection to professionalcare Emotionalsupport Connection to peers who areCGs Ways to discussthe diagnosis with family WaysforthePWDtostayhealthy Basic info about thedisease Future planning (legal and financial help) Practicaladjustmentstomaketothehouse

12. Large number of websites makes getting helpdifficult "What made it harder for you to get [the help you wanted]? Check all thatapply" %respondents 60 40 20 30 28 26 22 15 13 12 11 8 7 0 Can’t tell which siteshave bestinfo Didn’t know where tolook Events weren’t relevantto interests None- finding helpwas easy Overwhelmed with number ofsites Price Inconvenient Didn't have time/energy Not ready Infowasn’t to talk about disease helpful

13. Younger caregivers more overwhelmed by number ofsites; less likely to know where tolook "What made it harder for you to get [the help you wanted]?"...byage %respondents Age 50 <35 35-44 45-54 55-64 65-75 >76 40 30 20 33 30 32 32 31 31 30 30 29 26 25 24 23 20 20 19 10 1715 16 15 15 12 14 14 14 11 14 13 12 12 12 12 12 910 10 7 77 9 9 79 9 8 8 8 8 8 5 8 8 6 4 0 Price Inconvenient Can’t tell which sites have bestinfo Didn’t know where tolook Overwhelmed with number ofsites No time/energy Not ready totalk aboutdisease Infowasn’t helpful Eventsweren’t relevant to interests

14. Of those who said 'finding help was easy,' fewerwere Hispanic, urban, andyoung "What made it harder for you to get [the help you wanted]?" Response: None- [Finding help waseasy] ...byethnicity ...byincome ...bylocation ...byage ...bygender % respondentswho selected'Easy' % respondentswho selected'Easy' % respondentswho selected'Easy' % respondentswho selected'Easy' % respondentswho selected'Easy' 50 50 50 50 50 40 40 40 40 40 30 30 30 30 30 20 20 20 20 20 3031 26 25 25 23 23 23 23 2222 22 10 20 10 10 10 10 19 19 16 15 0 0 0 0 0 Male Female White/Other African-American Hispanic/Latino Asian Urban Suburban Rural 55-64 65-75 <50K 50K-100K >100K <35 35-44 45-54

15. Family/friends are most commonly used resourceamong all CGs; care consultant among most effective resources Question: "What resources have youused for support andinformation?" Question: "What have been the most useful sources of support and information foryou?" % respondents who useresource %respondents 100 100 80 80 60 60 91 87 83 40 40 72 72 57 54 20 20 0 0 Care Inperson Phone consultant support hotlineor groups or support classes number Family/ HealthcareWebsites friendsprofessional Online forum Online Care Inperson Phone forum consultant support hotlineor groups or support classes number Family/ HealthcareWebsites friendsprofessional Nothelpful Somewhat helpful Veryhelpful 15

16. Resources previously used vary relatively littleacross diagnosistimings Question: "What resources have you used for support and information?"...by diagnosistiming %respondents 100 80 60 93 92 91 9087 90 89 89 87 87 87 86 83 82 81 81 40 79 7874 7676 74 74 71 70 7170 68 6257 61 61 6057 58 5653 56 55 55 4443 20 0 Diagnosed >10 yearsago Diagnosed<6 monthsago Diagnosed 6 months-1 yearago Diagnosed1- 2 yearsago Diagnosed2- 5 yearsago Diagnosed5- 10 yearsago Family/ friends Healthcareprofessional Websites Onlineforum Phone hotline or supportnumber Careconsultant In person support groups orclasses

17. On average, caregivers are most interested incare consultants; phone resources lesspopular Question: "How likely would you be to use the below resources in the future ifthey were convenient for you (assume cost is not abarrier)?" % ofrespondents 100 4 8 8 9 9 10 10 6 14 13 13 15 17 16 17 80 22 22 25 24 27 26 25 27 60 23 34 40 29 30 26 27 25 25 22 20 35 25 24 23 23 22 22 19 0 In person care consultant Inperson support group Phone hotline for information andplanning Phone support groups Inperson classes Online Online Phone hotlinefor crisis or emotional support classes/webinars forums/ message boards Definitely would notuse Probably would notuse Mightuse Would probablyuse Would definitelyuse

18. Rankings for resources likely to use in the futureroughly similar across caregivertypes Question: "How likely would you be to use the [following] if they were convenient for you?"...by PWDrelationship %respondents 80 60 40 73 72 65 63 61 59 58 58 58 57 57 57 52 48 48 47 47 47 46 45 43 42 42 41 41 40 41 41 20 39 38 36 31 0 Grandchild Other- relative or closefriend Child/child-in-law Spouse In person careconsultant Onlineclasses/webinars Online forums/ messageboards In person supportgroup In personclasses Phone hotline for crisis or emotionalsupport Phone hotline for information andplanning Phone supportgroups

19. Support groups are low in relative importance shortlyafter diagnosis; only moderately more important lateron Question: "How likely would you be to use the [following] if they were convenient for you?"...by diagnosistiming % respondents likely touse 100 80 60 40 75 73 68 68 66 5961565455 5657 5554 5554 54 52 53515150 50 454749 47 49474746 484746474242 4143 43 43 20 40 393439 36 33 28 0 Diagnosed >10 yearsago Diagnosed<6 monthsago Diagnosed 6 months-1 yearago Diagnosed1- 2 yearsago Diagnosed2- 5 yearsago Diagnosed5- 10 yearsago Phone hotline for information andplanning Phone supportgroups In person careconsultant Onlineclasses/webinars Online forums/ messageboards In person supportgroup In personclasses Phone hotline for crisis or emotionalsupport

20. PCPs provide most diagnoses; PCPs more likely touse general terms e.g. 'memory loss' and'dementia' Question: " What form/stage ofdementia/AD were they initially diagnosed with?"...by physiciantype Question: "What type of physician delivered thediagnosis?" %respondents %respondents 100 0 100 1 2 3 3 2 3 Anotherdementia 4 2 5 Latestage Midstage 5 16 15 23 22 32 80 80 26 31 60 60 Earlystage 30 31 100 8 15 40 40 MCI 13 10 27 55 30 21 20 20 Dementia 28 15 11 MemoryLoss 8 3 0 0 No diagnosis PCP Neurologist PsychiatristGeriatrician Total PCP Neurologist Psychiatrist Geriatrician

21. Few differences between diagnosing physician byethnicity; wealthy and spouses most likely to seeneurologist Question: "What type of physician delivered the diagnosis?"...by PWDrelationship ...byethnicity "...byincome ...by PWDrelationship %respondents %respondents %respondents Overall %respondents 100 100 100 100 2 4 5 4 5 6 5 4 4 5 7 8 4 3 5 5 3 5 5 5 6 12 4 3 80 80 80 80 25 28 33 34 34 33 33 35 36 38 41 42 60 60 60 60 40 40 40 40 67 63 60 57 57 57 57 55 54 52 46 44 20 20 20 20 0 0 0 0 White/Other African-Hispanic/Latino Asian American Geriatrician Psychiatrist Populationoverall <50K 50K-100K >100K Grandchild Other- Child/child-Spouse relative orclose friend in-law Neurologist PCP

22. Majority of physicians do not give CGspractical information at point ofdiagnosis Question: "When the PWD received their diagnosis, which of the following did the doctordo? Check all thatapply." Did Didnot Gavebackground info ondementia/AD 49 51 Applied astage to thediagnosis 47 53 Gave a prescriptionfor Aricept or similardrug 45 55 Provided infoon any drugsprescribed 42 58 Provided info onthe Alzheimer'sAssociation 33 67 99 1 None ofthese 0 20 40 60 80 100 % reporting the following actions fromphysician

23. PWDs are told a variety of descriptors duringtheir diagnoses; only a third are told they haveAlzheimer's Question: "When the PWD received their diagnosis, which of the following did the doctordo? Check all thatapply." %respondents 100 32 80 8 60 11 100 15 40 16 20 17 0 Total Told the PWD they had AD and memoryloss ordementia Only told the PWD they hadAD Only told the PWDtheyonly haddementia Only told the PWDtheyhad memoryloss Told thePWD they had dementia and memoryloss Told thePWD none ofthese Received an ADdiagnosis Did not receive an ADdiagnosis

24. Geriatricians most likely to provide info on dementiaand apply a stage to diagnosis; PCPs leastlikely Question: "When the PWD received their diagnosis, which of the following did thedoctor do?"...byphysician PCP Neurologist % resp. 60 Psychiatrist Geriatrician 40 60 55 55 54 54 52 49 47 46 46 4645 44 44 43 41 41 20 4036 39 36 33 33 30332831 33 31 30 28 21 1 11 0 0 Gave background info on dementia/AD Applied a stage tothe diagnosis Gavea Providedinfo Toldthe PWD theyhave dementia Told the PWDthey haveAD Provided info on the Alzheimer’s Association Told the PWD they have memoryloss Noneof these prescription for Ariceptor similardrug on drugs prescribed

25. Spouses more likely to report that PWD was diagnosedwith a general term than'Alzheimer's' Question: "When the PWD received their diagnosis, which of the following did thedoctor do?"...by PWDrelationship %respondents 100 Grandchild Other-relative or closefriend Child/child-in-law Spouse 80 60 40 57 54 54 51 4946 4849 47 42 414140 41 41 20 4040 38 36 353533 35 3433 323329 2932 28 26 1 1 2 2 0 Noneof these Toldthe PWD theyhave dementia Provided info on the Alzheimer’s Association Toldthe PWD theyhave memory loss Gave Applied a Gavea background stage to theprescription Provided info on drugs prescribed Told the PWDthey haveAD infoondiagnosis dementia/AD forAricept or similar drug

26. CGs show greater interest in caregiving informationthan dementia background; opportunity for Ass'n tosupplement Question: "What would have been mostvaluable from your clinician after... the diagnosis? Check all thatapply" Responses for 'Other' things that would have been helpful from clinicians "A referral to aspecialist/neurologist" "Make sure the patient understoodthe directions" "What comesnext" Informationon caregiving 57 An explanation of dementia/AD 53 "What I might expect in the near to latefuture as well as any support groups for myself and mycousin" Access toa careconsultant 47 A referral forwhere to find moreinfo 40 "A way to contact other caregivers whoare going through it and a list of sitters/nurses who I could call if I need assistance or a break" An explanation of drugsprescribed 36 "Counseling for thepatient" 2 Other "What assistance isavailable" 80100 %respondents 0 20 40 60 "Resources forcare" "Assisted livingplacement"