1. Alzheimer’s Association Caregiver Survey

2. 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

3. 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

4. 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
59 63 64
58 56
53 51 48 20 30
30 29 32
32 33 29 24 24 28
23 23 24 17
15 14
6 4 8
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

5. 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
% respondents who delayed > 6 months

6. 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

7. 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

8. 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
% of respondents 20 40
% of respondents

9. 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

10. 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
39 39 37 33
30 30 28
25 25 29
27 26 24
22 22 10 18 17 15 14 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)

11. 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 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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

19. 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
55 54
56 57
55 54 50 52 54 47 20 43 43 40
41 43 36 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

20. 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

21. 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 5
5 4 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

22. 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
% reporting the following actions from physician

23. 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

24. 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 31 28 21
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

25. 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 35
34 33 36
29 32 26 28
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

26. 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"