Alzheimer’s Association Caregiver Survey

Majority of caregivers contact a doctor upon noticing symptoms Question: " When you first noticed symptoms of dementia, what did you do? Check all that apply." Reach out to a PCP 66 Talk to family/friends 58 Online research 45 Reach out to a specialist Talk to the PWD Call an organization who specializes in AD Go to a memory loss event 29 28 13 7 None of these 2 20 40 60 80 100 % respondents

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 Reach out to only a PCP Reach to only a specialist Reach out to both Total

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."...by age % respondents Age 100 <35 35-44 45-54 55-64 65-75 >76 80 60 40 72 71 73 76 59 63 64 58 56 53 51 48 20 49 47 44 44 30 30 29 32 32 33 29 24 24 28 23 23 24 17 15 14 12 11 7 4 9 7 4 6 4 8 1 1 2 4 4 Reach out Talk to Online Talk to PWD Reach out to Call an Go to a None of these to a PCP family/friends research a specialist organization memory who loss event specializes in AD

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 that apply." The PWD insisted that they were fine 33 I thought the symptoms were a normal sign of aging 28 I didn’t want to upset the PWD 17 I didn't think the problem was that serious 16 I was afraid of what I might hear 13 Family/friends I talked to weren't concerned 11 I didn't think anything could be done about it 8 20 40 60 80 100 % respondents who delayed > 6 months

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 Spouse 40 30 20 39 36 32 31 29 28 26 10 22 21 22 19 15 17 18 16 16 16 13 14 13 10 11 11 9 9 7 6 7 The PWD insisted I thought it was a they were fine normal sign of aging I didn’t want to upset the PWD I didn’t think the problem was that serious I was afraid of what I might hear Famil/friends I talked to weren’t concerned I didn’t think anything could be done

Question: "Who was present at the Caregivers are actively involved from the beginning of the diagnosis process Question: "Were you involved or influential in getting the PWD to meet with a physician?" Question: "Who was present at the diagnosis?" % of respondents % of those who were formally diagnosed 100 100 12 No 12 Only a caregiver Only the PWD 80 80 14 60 60 88 Yes 40 Both the PWD and caregiver 40 74 20 20

Primary reactions to diagnosis are 'seeking information' and 'planning'; well aligned with CG actions post-diagnosis Question: "What was your primary reaction to the diagnosis? Check up to three." Question: "What did you do in the first few weeks after diagnosis? Check all that apply." Seeking information 53 Discussed diagnosis with family/friends Searched online for what to do next Made practical adjustments to house and daily routine Started planning for LTC and legal authority, etc. Continued living life as I did before Sought out support groups Stopped going to usual social activities 62 Planning 50 54 Fear 34 48 Depression 25 39 Relief 24 21 Fight 15 21 Confusion 12 17 Denial/disbelief 11 Got a second opinion 13 Isolation 6 5 Anger 6 Called a hotline Avoidance 6 None of these 1 20 40 60 80 100 % of respondents 20 40 60 80 100 % of respondents

receiving a diagnosis? Check up to three" 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 to three" Ways for the PWD to stay healthy Basic info about the disease Future planning (legal and financial help) Practical adjustments to make to the house Connection to professional care Emotional support Connection to peers who are CGs Ways to discuss the diagnosis with family clinical trials Going to social activities None of these 42 38 35 27 24 23 19 15 12 9 3 10 20 30 40 50 % of respondents

diagnosis? Check up to three"....by ethnicity 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 receiving a diagnosis? Check up to three"....by ethnicity % respondents 50 White/ Other African-American 40 Hispanic/ Latino 42 43 20 40 38 37 39 39 37 33 32 30 32 30 30 28 25 25 29 27 26 24 22 22 10 18 19 20 19 20 17 15 14 13 13 15 14 9 11 10 11 8 3 3 4 2 Ways for Basic info Future Practical Connection Emotional Ways to Going to None of the PWD about the planning adjustments to support to peers who discuss the to clinical social these to stay disease (legal & to make to professional are CGs diagnosis trials activities healthy financial the house care with family help)

diagnosis? Check up to three"...by PWD relationship Initial post-diagnosis needs vary little by PWD relationship Question: "What do you think would have been most helpful for you shortly after receiving a diagnosis? Check up to three"...by PWD relationship % respondents 50 40 30 46 43 40 20 40 40 38 37 35 35 36 33 28 28 24 24 16 26 26 26 26 23 23 25 10 20 20 16 18 16 18 19 16 12 12 14 10 12 10 9 10 7 7 3 2 2 Grandchild Other- relative or close friend Child/ child-in-law Spouse Ways for the PWD to stay healthy Basic info about the disease Future planning (legal and financial help) Practical adjustments to make to the house Connection to professional care Emotional support Connection to peers who are CGs Ways to discuss the diagnosis with family Connection to clinical trials Going to social events None of these

Large number of websites makes getting help difficult "What made it harder for you to get [the help you wanted]? Check all that apply" % respondents 60 40 20 30 28 26 22 15 13 12 11 8 7 Can’t tell which sites have best info Didn’t know where to look Overwhelmed with number of sites Price Inconvenient Didn't have time/energy Not ready Info wasn’t Events weren’t relevant to interests None- finding help was easy to talk about disease helpful

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 30 31 31 32 32 30 29 30 26 24 25 23 10 20 19 20 17 15 15 16 12 12 14 14 14 14 11 15 12 12 12 13 12 9 10 10 7 7 7 8 8 9 9 7 9 8 9 8 8 5 8 8 4 6 Can’t tell which sites have best info Didn’t know where to look Overwhelmed with number of sites Price Inconvenient No time/energy Not ready to talk about disease Info wasn’t helpful Events weren’t relevant to interests

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 was easy] ...by ethnicity ...by income ...by location ...by age ...by gender % respondents who selected 'Easy' % respondents who selected 'Easy' % respondents who selected 'Easy' % respondents who selected 'Easy' % respondents who selected 'Easy' 50 50 50 50 50 40 40 40 40 40 30 30 30 30 30 20 20 20 20 20 30 31 25 26 23 23 23 25 23 10 20 10 22 22 10 10 22 19 19 10 15 16 White/Other African-American Hispanic/Latino Asian <50K 50K-100K >100K Urban Suburban Rural <35 35-44 45-54 55-64 65-75 Male Female

for support and information?" 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 % respondents who use resource 100 100 27 13 15 23 12 19 26 39 44 50 42 49 41 43 48 35 32 31 80 80 60 60 91 87 40 83 40 72 72 57 54 20 20 Family/ HealthcareWebsites friends professional Online Care In person Phone forum consultant support hotline or groups or support classes number Family/ HealthcareWebsites friends professional Online forum Care In person Phone consultant support hotline or groups or support classes number Not helpful Somewhat helpful Very helpful 15

Resources previously used vary relatively little across diagnosis timings Question: "What resources have you used for support and information?"...by diagnosis timing % respondents 100 80 60 93 89 92 87 89 90 87 91 90 86 87 87 40 83 79 81 81 82 74 78 74 76 76 70 71 70 71 74 68 60 57 62 57 58 61 61 55 56 53 56 55 44 43 20 Diagnosed <6 months ago Diagnosed 6 months-1 year ago Diagnosed 1- 2 years ago Diagnosed 2- 5 years ago Diagnosed 5- 10 years ago Diagnosed >10 years ago Family/ friends Healthcare professional Websites Online forum Care consultant In person support groups or classes Phone hotline or support number

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 if they were convenient for you (assume cost is not a barrier)?" % of respondents 100 4 8 9 9 8 6 10 10 14 13 13 15 17 80 17 16 22 22 25 24 27 26 60 25 27 34 23 40 29 30 27 26 25 25 22 20 35 25 24 22 23 23 22 19 In person care consultant Online Online In person support group In person classes Phone hotline for crisis or emotional support Phone hotline for information and planning Phone support groups classes/webinars forums/ message boards Definitely would not use Probably would not use Might use Would probably use Would definitely use

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 72 73 63 61 65 58 58 57 58 57 57 59 52 45 48 47 48 46 47 47 20 42 42 43 40 41 39 41 41 41 36 38 31 Grandchild Other- relative or close friend Child/ child-in-law Spouse In person care consultant Online classes/webinars Online forums/ message boards In person support group In person classes Phone hotline for crisis or emotional support Phone hotline for information and planning Phone support groups

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 66 68 59 61 56 54 55 55 54 56 57 55 54 45 47 49 50 52 53 51 51 50 54 47 49 4747 46 20 43 43 48 47 46 47 42 42 40 41 43 36 39 34 39 33 28 Diagnosed <6 months ago Diagnosed 6 months-1 year ago Diagnosed 1- 2 years ago Diagnosed 2- 5 years ago Diagnosed 5- 10 years ago Diagnosed >10 years ago In person care consultant Online classes/webinars Online forums/ message boards In person support group In person classes Phone hotline for crisis or emotional support Phone hotline for information and planning Phone support groups

PCPs provide most diagnoses; PCPs more likely to use general terms e.g. 'memory loss' and 'dementia' Question: " What form/stage of dementia/AD were they initially diagnosed with?"...by physician type Question: "What type of physician delivered the diagnosis?" % respondents % respondents 100 100 3 2 1 3 2 3 2 4 Another dementia 5 Late stage Mid stage 5 16 15 32 22 23 80 80 31 26 60 60 31 30 Early stage 100 8 15 40 40 10 13 MCI 55 27 30 20 20 21 28 Dementia 15 11 8 Memory Loss 3 PCP Neurologist Psychiatrist Geriatrician No diagnosis Total PCP Neurologist Psychiatrist Geriatrician

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 PWD relationship % respondents % respondents % respondents Overall % respondents 100 100 100 100 5 5 4 6 5 4 4 5 4 2 3 8 4 7 5 5 4 6 5 5 3 5 3 12 80 80 80 80 25 33 28 33 34 33 35 34 38 36 41 42 60 60 60 60 40 40 40 40 63 67 57 57 57 60 57 52 55 54 46 44 20 20 20 20 Population overall White/Other African-Hispanic/Latino Asian American Geriatrician Psychiatrist <50K 50K-100K >100K Grandchild Other- Child/child- Spouse relative or close friend in-law Neurologist PCP

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 doctor do? Check all that apply." Did Did not Gave background info on dementia/AD 49 51 Applied a stage to the diagnosis 47 53 Gave a prescription for Aricept or similar drug 45 55 Provided info on any drugs prescribed 42 58 Provided info on the Alzheimer's Association 33 67 None of these 1 99 20 40 60 80 100 % reporting the following actions from physician

PWDs are told a variety of descriptors during their diagnoses; only a third are told they have Alzheimer's Question: "When the PWD received their diagnosis, which of the following did the doctor do? Check all that apply." % respondents 100 32 80 8 60 11 100 40 15 16 20 17 Only told the PWD they had AD Told the PWD they had AD and memory loss or dementia Only told the PWD they only had dementia Only told the PWD they had memory loss Told the PWD they had dementia and memory loss Told the PWD none of these Total Received an AD diagnosis Did not receive an AD diagnosis

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 the doctor do?"...by physician PCP Neurologist % resp. 60 Psychiatrist Geriatrician 40 60 55 55 52 54 54 49 46 46 47 44 46 45 43 44 20 41 41 40 36 39 36 33 33 33 30 33 28 31 30 31 28 21 1 1 1 Gave background info on dementia/AD Applied a stage to the diagnosis Gave a Provided info Told the PWD they have dementia Told the PWD they have AD Provided info on the Alzheimer’s Association Told the PWD they have memory loss None of these prescription for Aricept or similar drug on drugs prescribed

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 the doctor do?"...by PWD relationship % respondents 100 Grandchild Other-relative or close friend Child/ child-in-law Spouse 80 60 40 57 54 54 48 49 49 46 51 47 20 42 38 40 40 41 41 40 41 41 35 34 33 32 33 29 35 35 33 36 29 32 26 28 1 1 2 2 Gave Applied a Gave a background stage to the prescription Provided info on drugs prescribed Told the PWD they have dementia Told the PWD they have AD Provided info on the Alzheimer’s Association Told the PWD they have memory loss None of these info on diagnosis dementia/AD for Aricept or similar drug

CGs show greater interest in caregiving information than dementia background; opportunity for Ass'n to supplement Question: "What would have been most valuable from your clinician after... the diagnosis? Check all that apply" Responses for 'Other' things that would have been helpful from clinicians "A referral to a specialist/neurologist" "Make sure the patient understood the directions" "What comes next" Information on care giving 57 An explanation of dementia/AD 53 "What I might expect in the near to late future as well as any support groups for myself and my cousin" Access to a care consultant 47 A referral for where to find more info 40 "A way to contact other caregivers who are going through it and a list of sitters/nurses who I could call if I need assistance or a break" An explanation of drugs prescribed 36 "Counseling for the patient" Other 2 "What assistance is available" 20 40 60 80 100 % respondents "Resources for care" "Assisted living placement"