Insights into Caregiver Actions for Dementia Symptoms

Alzheimers Association Caregiver Survey

Majority of caregivers contact a doctor upon noticing 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 Reachout to aspecialist 29 Talkto thePWD 28 Call an organization who specializes in AD 13 Go to amemory lossevent 7 None ofthese 2 0 20 40 60 80 100 %respondents 2

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

Many trends observed as participants age; younger dem. more likely to access info online, less likely to contact PCP 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 5963 5856 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 Reachout to aPCP Talkto Online research Talk to PWD Reach outto a specialist Callan organization who specializes Go to a memory lossevent None ofthese family/friends inAD 4

Main factors causing delay in physician contact were PWD & symptom ignorance Question: " If you delayed contacting a physician, which were the primary reason(s)?Check all thatapply." The PWD insistedthat they were fine 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 60 80 100 % respondents who delayed > 6months 5

Children/grandchildren more likely to cite PWD as cause for 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 PWD relationship % respondents who delayed >6 months 50 Grandchild Other- relative or close friend Child/child-in-law 40 Spouse 30 20 39 36 32 31 29 28 26 22 22 21 10 19 18 17 16 16 16 15 14 13 13 11 11 10 9 9 7 7 6 0 The PWDinsisted they were fine I thought it was a normal sign ofaging I didn t want to upset thePWD I didn tthink the problem was thatserious I was afraid of what I mighthear Famil/friends I talked to weren t concerned I didn t think anything could bedone 6

Caregivers are actively involved from the beginning of the diagnosis process Question: "Were you involvedor influential in getting the PWD to meet with aphysician?" Question: "Who was present atthe diagnosis?" % of those who were formallydiagnosed % of respondents 100 100 Only a caregiver 12 No 12 Only thePWD 14 80 80 60 60 Y es 88 Both thePWD and caregiver 40 40 74 20 20 0 0 7

Primary reactions to diagnosis are 'seeking information' 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 with family/friends Searchedonlinefor what to donext Made practicaladjustments to house and dailyroutine Started planningfor LTC and legal authority,etc. Continuedlivinglife as I didbefore 53 Seekinginformation 62 50 Planning 54 34 Fear 48 25 Depression 39 24 Relief 21 15 Fight Soughtout supportgroups Stoppedgoingto usual socialactivities 21 12 Confusion 17 11 Denial/disbelief 13 Got a secondopinion 6 Isolation 5 Called ahotline 6 Anger 6 None ofthese Avoidance 1 0 20 40 60 80 100 0 20 40 60 80 100 % of respondents % of respondents 8

Ways to keep the PWD healthy and general information on dementia/AD considered most helpful after diagnosis Question: "What do you think would have been most helpful for you shortly after receiving a diagnosis? Check up tothree" Ways for thePWD to stayhealthy Basic infoabout thedisease Future planning (legal and financial help) Practicaladjustments to make to thehouse Connectionto professionalcare 42 38 35 27 24 23 Emotionalsupport Connection topeers who areCGs Ways to discussthe diagnosis with family Connectionto clinical trials Going tosocial 19 15 12 9 activities 3 None ofthese 0 10 20 30 40 50 % of respondents 9

Responses were relatively consistent across ethnicities; Hispanic need for emotional support was higher 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 39 39 37 33 32 3032 3030 28 29 2726 2525 24 2222 10 19 20 1920 18 17 15 13 1315 14 14 11 11 10 9 8 4 3 3 2 0 Waysfor thePWD tostay healthy Basicinfo aboutthe disease Future planning (legal& financial help) Practical adjustments to maketo thehouse Connection to professional care Emotional support Connection to peerswho discussthe areCGs Waysto Connection toclinical trials Goingto social activities Noneof these diagnosis with family 10

Initial post-diagnosis needs vary little by PWD relationship Question: "What do you think would have been most helpful for you shortly after receivinga diagnosis? Check up to three"...by PWD relationship % respondents 50 40 30 46 43 40 40 40 20 38 37 36 35 35 33 28 28 2626 26 26 25 2424 23 23 20 10 20 19 18 16 1816 16 16 14 12 12 12 10 10 10 9 7 7 3 2 2 0 Grandchild Other- relative or close friend Child/ child-in-law Spouse Waysfor the PWDto stay healthy Basic info about thedisease Future planning (legal and financial help) Practicaladjustments to make to the house Connection to professionalcare Emotionalsupport Connection to clinicaltrials Going to social events None ofthese Connection to peers who areCGs Ways to discussthe diagnosis with family 11

Large number of websites makes getting help difficult "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 Overwhelmed with number ofsites Price Inconvenient Didn't have time/energy Not ready Infowasn t to talk about disease Events weren t relevantto interests None- finding helpwas easy Can t tell which siteshave bestinfo Didn t know where tolook helpful 12

Younger caregivers more overwhelmed by number of sites; less likely to know where to look "What made it harder for you to get [the help you wanted]?"...by age % respondents Age 50 <35 35-44 45-54 55-64 65-75 >76 40 30 20 33 32 32 31 31 30 30 30 29 26 25 24 23 20 20 10 19 17 16 15 15 15 14 14 14 14 1213 12 12 12 12 12 10 11 910 9 8 8 9 9 79 8 8 8 8 8 7 7 7 6 5 4 0 Didn t know where tolook Overwhelmed with number ofsites Price Inconvenient No time/energy Not ready totalk Infowasn t helpful Events weren t relevant to interests Can t tell which sites have bestinfo aboutdisease 13

Of those who said 'finding help was easy,' fewer were Hispanic, urban, and young "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 30 31 26 2325 25 23 23 23 22 22 22 10 20 10 10 10 10 19 1619 15 0 0 0 0 0 White/Other African-American Hispanic/Latino Asian Urban Suburban Rural Male Female <50K 50K-100K >100K <35 35-44 45-54 55-64 65-75 14

Family/friends are most commonly used resource among all CGs; care consultant among most effective resources Question: "What resources have you used for support and information?" Question: "What have been the most useful sources of support and information for you?" % respondents who useresource % respondents 100 100 13 15 12 19 23 26 27 80 80 39 44 60 60 50 42 41 43 49 91 87 83 40 40 72 72 57 54 48 44 20 20 39 35 32 31 27 0 0 Family/ HealthcareWebsites friends professional Online forum Care In person Phone Family/ HealthcareWebsites friendsprofessional Online forum consultant support hotline or groups or support Care In person Phone consultant support hotlineor groups or support classes number classes number Nothelpful Somewhat helpful Veryhelpful 15

Resources previously used vary relatively little across diagnosis timings 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 76 76 74 74 71 71 70 70 68 6257 61 61 6057 58 5653 56 55 55 4443 20 0 Diagnosed<6 monthsago Diagnosed 6 months-1 yearago Diagnosed1- 2 years ago Diagnosed2- 5 years ago Diagnosed5- 10 years ago Diagnosed >10 years ago Family/ friends Healthcareprofessional Websites Onlineforum Careconsultant In person support groups orclasses Phone hotline or supportnumber 16

On average, caregivers are most interested in care consultants; phone resources less popular Question: "How likely would you be to use the below resources in the future ifthey were convenient for you (assume cost is not abarrier)?" % of respondents 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 Online Online Inperson support group Inperson classes Phone hotlinefor crisis or emotional support Phone hotline for information andplanning Phone support groups classes/webinars forums/ message boards Definitely would notuse Probably would notuse Mightuse Would probablyuse Would definitelyuse 17

Rankings for resources likely to use in the future roughly similar across caregiver types Question: "How likely would you be to use the [following] if they were convenient for you?"...by PWD relationship % 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 close friend Child/child-in-law Spouse In person careconsultant Onlineclasses/webinars In person supportgroup In personclasses Phone hotline for information andplanning Phone supportgroups Online forums/ messageboards Phone hotline for crisis or emotionalsupport 18

Support groups are low in relative importance shortly after diagnosis; only moderately more important later on Question: "How likely would you be to use the [following] if they were convenient for you?"...by diagnosis timing % respondents likely to use 100 80 60 40 75 73 68 68 66 5961565455 5657 5554 5554 54 53515150 52 50 454749 49474746 484746474242 47 43 43 4143 20 40 393439 36 33 28 0 Diagnosed<6 monthsago Diagnosed 6 months-1 yearago Diagnosed1- 2 years ago Diagnosed2- 5 years ago Diagnosed5- 10 years ago Diagnosed >10 years ago 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

PCPs provide most diagnoses; PCPs more likely to use general terms e.g. 'memory loss' and 'dementia' Question: " What form/stage ofdementia/AD were they initially diagnosed with?"...by physician type Question: "What type of physician delivered thediagnosis?" % respondents %respondents 100 0 100 1 2 3 3 3 2 Anotherdementia 4 2 5 Latestage Mid stage 5 16 15 23 22 80 80 32 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 PCP Neurologist Psychiatrist Geriatrician No Total PCP Neurologist Psychiatrist Geriatrician diagnosis 20

Few differences between diagnosing physician by ethnicity; wealthy and spouses most likely to see neurologist Question: "What type of physician delivered the diagnosis?"...by PWD relationship ...by ethnicity "...by income ...by PWDrelationship Overall % respondents % respondents %respondents %respondents 100 100 100 100 2 4 5 4 4 4 5 5 5 6 7 3 8 4 3 5 5 3 5 5 5 6 12 4 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 Populationoverall White/Other African-Hispanic/Latino Asian American <50K 50K-100K >100K Grandchild Other- Child/child- Spouse relative or close friend in-law Neurologist PCP Geriatrician Psychiatrist 21

Majority of physicians do not give CGs practical information at point of diagnosis 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 22

PWDs are told a variety of descriptors during their 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 Only told the PWD they hadAD Told the PWD they had AD and memoryloss ordementia Only told the PWDtheyonly haddementia Only told the PWDtheyhad memoryloss Told thePWD they had dementia and memoryloss Told thePWD none ofthese Total Received an ADdiagnosis Did not receive an ADdiagnosis 23

Geriatricians most likely to provide info on dementia and apply a stage to diagnosis; PCPs least likely 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 1 1 0 0 Gave background info on dementia/AD Applied a stage to the diagnosis Gave a prescription for Aricept or similardrug Providedinfo Toldthe PWD theyhave dementia Told the PWDthey haveAD Provided info on the Alzheimer s Association Told the PWD they have memoryloss Noneof these on drugs prescribed 24

Spouses more likely to report that PWD was diagnosed with 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 35 353533 3433 323329 2932 28 26 1 1 2 2 0 Gave Applied a Gavea Provided info on drugs prescribed Toldthe PWD theyhave dementia Told the PWDthey haveAD Provided info on the Alzheimer s Association Toldthe PWD theyhave memory loss Noneof these background stage to the prescription info on dementia/AD diagnosis forAricept or similar drug 25

CGs show greater interest in caregiving information than dementia background; opportunity for Ass'n to supplement 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" Informationon caregiving 57 "Make sure the patient understoodthe directions" An explanation of dementia/AD 53 "What comesnext" "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" 0 20 40 60 80 100 "Resources forcare" %respondents "Assisted living placement" 26