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Alzheimer’s Disease: Global Survey of
Patients and Caregivers
Prepared for:
www.harrisinteractive.com
August 23, 2007
©2007, Harris Interactive Inc.
All rights reserved.
Contents
Global Findings
Key Findings
4
Detailed Findings
7
Patients
8
Caregivers
2
3
20
Conclusions
31
Appendix
33
Patient and Caregiver Discrepancies
34
Findings by Country
45
Background and Methodology
52
Demographics
56
Patients
57
Caregivers
59
Global Findings
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©2007, Harris Interactive Inc.
All rights reserved.
Key Findings
4
This research looks at patients diagnosed with mild or moderate Alzheimer’s Disease (AD), and
at caregivers for such patients. It was conducted in six countries: The United States, Canada
(caregivers only thus far), France, Germany, Spain, and Brazil. Not just the caregivers but also
the patients spoke to us directly about their concerns and about what is important to them.
Most patients say they have warm relationships and a social life with family and friends, and
that they feel safe and supported at home. Caregivers back them up on this. In Europe,
however, patients are less likely to say they are able to enjoy life.
Caregivers are quite positive in all countries, but in France and Germany they are particularly
likely to say that they themselves can enjoy life.
When asked about a number of issues:
Caregivers across all countries rated a wide range of issues as highly important . Patients varied
somewhat more by country, but generally saw quality of life issues as highly important. Outside the US
patients were less likely to see access to detailed information as important.
Similarly, caregivers rated the performance on such issues more highly than patients did for the same
issues.
Comparing importance and performance ratings, Brazilian caregivers and patients had the greatest
number of important issues with poor performance, such as lack of availability of an organized peer
group for AD sufferers; an organized peer group for caregivers (asked only of caregivers); an awayfrom-home day program; and detailed information about AD.
Key Findings, cont’d
Medication use for AD is high everywhere, roughly 70% or higher, according to both patients
and caregivers. Within this range it is most prevalent in Spain, and least prevalent in Brazil and
Canada.
When asked explicitly about the importance of various medication improvements, caregivers
and patients agree that better control of AD symptoms and fewer bothersome side effects are
most important.
Large majorities of patients and caregivers in all countries are at least “somewhat satisfied” with
their or their patient’s current AD medication.
5
Other issues where performance fell below importance in other countries included: Having professional
home care in the US; the ability to enjoy life in the US for caregivers and in Spain for patients; the best
possible quality of life for patients in France and Spain; and for caregivers in Spain, medical treatment
helping to control AD symptoms.
Both patients and caregivers in Spain, where medication use is the highest, claim the lowest
satisfaction with their medications, and caregivers give the lowest ratings for the success of the
medication in controlling symptoms. In contrast, satisfaction is slightly higher in Brazil, as is caregiver
rating of the success of medication in controlling symptoms despite relatively low use of medication. In
short, medication use in one country versus another appears largely unrelated to satisfaction in those
countries.
Key Findings, cont’d
6
The most likely source of AD information according to both patients and caregivers across
countries is the patient’s physician.
In Brazil no more than 10% of patients mention any source other than their physician, but in the US and
Europe other physicians, friends/family members, and magazines/newspapers are all additional sources
for patients.
Caregivers, both in Brazil and elsewhere, seek information from a much broader range of sources than
patients.
Overall the use of services provided by AD organizations is higher in Europe than in the US or
Brazil, and most use appears to come from caregivers rather than patients.
In the US and Europe listings of local peer support AD groups is a regularly used service for a majority
of caregivers. Slightly fewer patients report using this service.
Other services used by relatively large percentages of patients or caregivers in various countries
include hearing about AD research and treatments, gathering medical information, and social events.
Detailed Findings
7
Patients
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Years Since Diagnosis: Patients
On average patients were diagnosed with AD three to four years ago
Number of Years Since AD Diagnosis
Base: AD Patients
US (b)
France (d)
Germany (e)
Spain (f)
Brazil (g)
Less than 1 year
ago
13%
16%
15%
16%
14%
1 year ago
20%
14%
11%
16%
12%
2 years ago
18%
20%
32%b
26%
28%
3 years ago
21%
13%
17%
11%
14%
4-5 years ago
11%
17%
14%
19%
15%
6+ years ago
15%
18%
10%
10%
7%
3.6
3.7
3.2
4.2
3.1
Mean # of years
9
Canada (c)
Q500 How many years ago did a physician or other healthcare professional first tell you that you have Alzheimer’s?
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
Prescription Medication Taking: Patients Currently Taking Medication
Most patients are currently on medication; patients in France and Germany have the
highest percentages who are new to medication. Brazil and the US have the highest
percentages on medication for more than a year but Spain has the highest use overall.
Are you currently taking prescription medication for Alzheimer’s
Disease?
US (b)
Currently taking
medication
84%
Base: AD Patients
currently taking
medication
Under 3 months
Canada (c)
France (d)
Germany (e)
83%
84%
Spain (f)
93%bdeg
Brazil (g)
73%
How long have you been taking prescription medication?
5%
5%
5%
4%
3%
3 to 6 months
12%g
27%bg
35%bfg
17%g
3%
7 months to 1 year
14%
28%bg
20%
25%g
12%
69%def
37%
38%
48%
80%def
More than 1 year
More time on medication
Base: AD Patients
Median time on medication (50%)
10
Q530 Are you currently taking prescription medication for Alzheimer’s Disease?
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
Q535 How long have you been taking prescription medication?
Base: Currently taking medication US (n=84) Canada (n=xx) France (n=83) Germany (n=84) Spain (n=93) Brazil (n=74)
Important Issues: Patients
Across countries the majority of patients say quality of life issues are important such
as “feeling safe and supported at home” and “keeping up a social life with family and
friends.
Importance according to patient
Base: AD Patients
% answering “Important”
US
Canada
(b)
(c)
France
Germany
Spain
Brazil
(d)
(e)
(f)
(g)
Access to detailed information about AD
89%defg
66%f
78%fg
43%
53%
Opportunities to discuss condition and
treatment with physician
98%defg
87%fg
90%fg
68%
64%
Medical treatment that helps control
symptoms
95%g
96%g
93%g
89%g
71%
Knowing you are taking prescribed meds as
directed
95%fg
91%g
93%fg
83%g
69%
Feeling safe and supported at home
99%eg
99%eg
93%
97%
90%
Having professional home care
58%f
49%f
76%bdf
33%
78%bdf
Best possible quality of life
99%g
98%g
97%g
98%g
81%
An organized peer group for AD sufferers
59%
58%
64%
54%
72%df
An away-from-home day program
35%
62%b
70%bf
51%
69%bf
Keeping up a social life with family and
friends
95%
98%g
95%
97%g
89%
Ability to enjoy life
99%g
100%eg
95%g
99%g
84%
High Importance (90% or more)
Low Importance (55% or less)
11
Q515 [INSERT ITEM AT Q515] – is that important to you or not?
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
Performance on Issues: Patients
Patients in general say they enjoy the quality of life issues they say are most
important.
True according to the patient
Base: AD Patients
% answering “True”
US
Canada
France
Germany
Spain
Brazil
(b)
(c)
(d)
(e)
(f)
(g)
Access to detailed information about AD
84%dfg
66%fg
80%dfg
41%
30%
Opportunities to discuss condition and
treatment with physician
86%fg
85%fg
90%fg
67%
55%
Medical treatment that helps control
symptoms
86%fg
87%fg
78%g
72%
64%
Knowing you are taking prescribed meds
as directed
86%fg
77%
90%dfg
71%
69%
Feeling safe and supported at home
92%g
93%g
90%g
96%g
75%
Having professional home care
36%
44%f
70%bdf
27%
71%bdf
91%defg
76%
81%
76%
72%
An organized peer group for AD sufferers
40%
64%bg
61%bg
54%bg
39%
An away-from-home day program
23%
63%bfg
65%bfg
39%b
42%b
Keeping up a social life with family and
friends
88%
95%g
92%g
91%g
78%
95%defg
81%f
81%f
64%
78%f
Best possible quality of life
Ability to enjoy life
High Performance (90% or more True)
Low Performance (55% or less True)
12
Q520 Is [REPEAT ITEM AT Q525] true or not true for you?
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
Summary of Importance and Performance: Patients
AD patients in Spain and Brazil are the most likely to indicate that performance on
an issue falls substantially below its importance.
Discrepancy: Importance - Performance
Base: AD Patients
% Important – % True
13
US (b)
Canada (c)
France (d)
Germany (e)
Spain (f)
Brazil (g)
Access to detailed information about AD
5%
0%
-2%
2%
23%
Opportunities to discuss condition and
treatment with physician
12%
2%
0%
1%
9%
Medical treatment that helps control
symptoms
9%
9%
15%
17%
7%
Knowing you are taking prescribed
meds as directed
9%
14%
3%
12%
0%
Feeling safe and supported at home
7%
6%
3%
1%
15%
Having professional home care
22%
5%
6%
6%
7%
Best possible quality of life
8%
22%
16%
22%
9%
An organized peer group for AD
sufferers
19%
-6%
3%
0%
33%
An away-from-home day program
12%
-1%
5%
12%
27%
Keeping up a social life with family and
friends
7%
3%
3%
6%
11%
Ability to enjoy life
4%
19%
14%
35%
6%
Moderate discrepancy (10-19 percentage points)
High discrepancy (20 percentage points or more)
Q515 [INSERT ITEM AT Q515] – is that important to you or not? Q520 Is [REPEAT ITEM AT Q525] true or not true for you?
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
Medication Improvements: Patients Currently on Medication
The dosing regimen is relatively unimportant to patients, especially in the US and Spain.
Instead, as a rule, they are looking for better control of AD symptoms and fewer
bothersome side effects.
Importance of Improvements to Medication
Base: AD Patients currently
taking medication
% answering “Important”
US (b)
Canada (c)
Germany (e)
Spain (f)
Brazil (g)
Coming in a form that
makes it easier to take
63%
78%b
80%bfg
66%
65%
Having a dosing regimen
that is easier to comply with
54%
69%bf
86%bdf
49%
76%bf
Having fewer bothersome
side-effects
63%
96%bfg
95%bfg
72%
76%
Being better at controlling
the symptoms of
Alzheimer’s
96%fg
92%fg
98%fg
77%
72%
High Importance (90% or more)
14
France (d)
Low Importance (55% or less)
Q540 If you could improve the prescription medication you are currently taking for Alzheimer’s, would each of the following improvements be important or not?
Base: Currently taking medication US (n=84) Canada (n=xx) France (n=83) Germany (n=84) Spain (n=93) Brazil (n=74)
Medication Satisfaction: Patients Currently on Medication
While across countries the majority of patients are at least “somewhat satisfied” with their
current medication, fewer patients in Spain agree.
Top 2 Box
% answering “Very satisfied” or “Somewhat satisfied”
fg
96%
fg
90%
f
83%
77%
df
25%
df
43%
46%
69%
23%
df
53%
g
58%
g
50%
g
44%
g
46%
24%
US (b)
Canada (c)
France (d)
Germany (e)
Somewhat satisfied
15
Spain (f)
Brazil (g)
Very satisfied
Q545 Overall, how satisfied are you with your current prescription therapy for Alzheimer’s? Very satisfied, somewhat satisfied, not too satisfied, or not at all satisfied?
Base: Currently taking medication US (n=84) Canada (n=xx) France (n=83) Germany (n=84) Spain (n=93) Brazil (n=74)
Attitudes: Patients
Patients are less inclined to say talking with other AD sufferers gives them
perspective or that living with AD helps them appreciate the important things in life.
Which of the following apply for the
Patient?
Base: AD Patients
% answering “Applies”
Can.
Fr.
Ger.
Spa.
Bra.
(b)
(c)
(d)
(e)
(f)
(g)
I worry that the people who care for me may have too great a burden
52%g
52%g
70%bdfg
56%g
28%
I have a warm relationship with the people around me
95%dg
77%
87%
95%dg
82%
I wish I could persuade people around me that I am not helpless
53%
60%
63%
64%
51%
Talking with other people living with AD gives me perspective on my
situation
46%
50%g
45%
41%
33%
I want to be reassured that I am taking my AD medication as directed
63%
76%bg
81%bg
81%bg
61%
89%defg
55%fg
69%dfg
30%
40%
I don’t like to take medication that causes uncomfortable side-effects
67%
77%
89%bdfg
78%
74%
I worry about what other people think of me
39%
55%bg
64%bfg
48%
35%
I feel lucky to have people to help me with things I can no longer
manage myself
79%d
60%
90%bdfg
73%
69%
AD causes symptoms that are disturbing to me
70%g
74%g
82%bg
79%g
45%
I am well-respected by other members of my family
89%
84%
88%
89%
85%
Living with AD helps me appreciate the things in life that are really
important
High Applicability (90% or more)
16
US
Low Applicability (55% or less)
Q600 I’m going to read you some statements that other people have made about what it is like having Alzheimer’s Disease. For each one, please say
whether it applies to your situation or not.
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
AD Information Sources: Patients
Patients’ physicians are the most likely sources of AD information.
Patients who get AD info from the following sources
Base: AD Patients
% answering “Yes”
US (b)
Your physician
France (d)
Germany (e)
Spain (f)
Brazil (g)
89%fg
100%befg
96%fg
68%g
43%
Another physician or healthcare
provider
43%g
45%g
56%fg
35%g
7%
An AD organization
34%g
46%
50%bg
48%bg
4%
Internet
50%defg
11%fg
12%fg
3%
0%
Books
50%defg
24%g
31%g
22%g
4%
Magazines and newspaper articles
65%defg
39%g
34%g
31%g
6%
Medical journals
29%dfg
17%g
34%dfg
8%
3%
TV and radio programs
44%dfg
28%g
43%dg
30%g
9%
Friends and family members
55%g
83%befg
54%g
58%g
8%
Other
12%g
5%g
15%dg
9%g
0%
0%
3%
2%
5%b
17%bdef
None/don’t look for information
on AD
Canada (c)
Highly Mentioned Sources (55% or more)
17
Q700 What sources do you turn to for information about Alzheimer’s disease?
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
AD Support Services Used: Patients Who Have Used AD Support
Services In the US and Europe, various services provided by AD organizations are
utilized. Curiously, more US patients say they go to these organizations for
information than say they use their services.
Ever used support services
Base: AD Patients
US* (b) Canada (c)
Have Used Support Services
Base: Patients who used AD support
services
26%g
France (d)
64%bg
Germany (e)
65%bg
Spain (f)
55%bg
Brazil** (g)
1%
Regularly used services and benefits provided by AD
organizations
Medical info about AD (causes,
symptoms, etc.)
23%
48%
35%
53%
N/A
Information about new treatments for
AD
12%
30%
57%df
18%
N/A
Listings of local peer support groups
54%
45%
37%
62%e
N/A
Listings of home care services
0%
19%
34%
29%
N/A
Listings of physicians who treat AD
4%
42%
48%f
25%
N/A
Listings for housekeeping services
0%
16%
25%
15%
N/A
Social events for those living with AD
15%
28%
22%
56%de
N/A
Tips on how to cope with everyday life
15%
30%
31%
33%
N/A
Information on the latest research/
clinical trials
8%
6%
12%
13%
N/A
Other
23%
0%
3%
15%de
N/A
Highly Used Services (55% or more)
18
Q800 Have you ever used the support services available at an Alzheimer’s disease organization?
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
Q805 Which services or benefits provided by the organization do you use regularly?
Base: Used AD support services Base: US (n=26*) Canada (n=xx) France (n=64) Germany (n=65) Spain (n=55) Brazil (n=1**)
Note: * = small base ** = base too small to report
Why Support Services Not Used: Patients Aware of AD Organizations
A sizeable number of patients who are aware of AD organizations have not used their
services.
Base: AD Patients
Aware of AD organizations but have NOT used support services
US (b)
Aware of AD organizations
Base: Patients aware of AD
organizations and have not
used them
34%efg
Canada (c)
France* (d)
25%eg
Germany** (e) Spain** (f)
11%g
18%g
Brazil**(g)
-
Reasons for NOT using services and benefits provided by AD
organizations
Too far/inconvenient to get to
6%
36%
N/A
N/A
N/A
No time
9%
44%
N/A
N/A
N/A
Don’t have the
services/benefits we need
3%
12%
N/A
N/A
N/A
Too much of a commitment
0%
28%
N/A
N/A
N/A
Don’t want to think so much
about AD
18%
20%
N/A
N/A
N/A
Other
65%
24%
N/A
N/A
N/A
Highly Likely Reason (55% or more)
19
Q800 Have you ever used the support services available at an Alzheimer’s disease organization?
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
Q810 Are you aware of any Alzheimer’s Disease organizations?
Base: Never used AD support services or not sure or decline to answer: US (n=74) Canada (n=xx) France (n=36) Germany (n=35) Spain (n=45) Brazil (n=101)
Q815 Why haven’t you used services provided by Alzheimer’s Disease organizations?
Base: Aware of AD organizations and have not used them: US (n=34) Canada (n=xx) France (n=25*) Germany (n=11**) Spain (n=18**) Brazil (n=0**)
Note: * = small base ** = base too small to report
Caregivers
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All rights reserved.
Prescription Medications: Caregivers of Patients Currently Taking Medication
The majority of caregivers say their patients are currently taking medication to treat
their AD. The US has the longest use of those on medications.
Is the person with AD currently taking prescription medication?
US (b)
Currently taking
medication
Base: AD Caregivers
of patients currently
taking medication
88%
Canada (c)
72%
France (d)
98%bcg
Germany (e)
94%cg
Spain (f)
95%cg
Brazil (g)
79%
How long has the person been taking prescription medication?
Under 3 months
2%
7%
4%
5%
4%
2%
3 to 6 months
2%
15%bg
37%bcg
30%bcg
24%bg
6%
7 months to 1 year
7%
21%bg
22%bg
26%bg
19%bg
4%
89%cdef
56%cd
30%
37%
53%
79%bcef
More than 1 year
Median time on medication (50%)
21
Q520 Is the person with Alzheimer’s Disease currently taking prescription medication for the condition?
Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
Q525 How long has the person been taking prescription medication?
Base: AD patients currently taking medication US (n=88) Canada (n=72) France (n=98) Germany (n=94) Spain (n=95) Brazil (n=90)
More time on medication
Base: AD Caregivers
Important Issues: Caregivers
Only “having professional home care” and “an away-from-home day program” drop
to moderate importance for caregivers across all countries.
Importance according to caregiver
Base: AD Caregivers
% answering “Very Important” or
“Somewhat Important”
US (b)
Access to detailed information about AD
99%df
100%df
93%
99%df
91%
97%
Opportunities to discuss condition and
treatment with physician
98%
96%
100%cf
99%
96%
99%
Medical treatment that helps control
symptoms
99%
98%
100%
99%
100%
100%
Knowing prescribed medications are taken
as directed
97%
98%
99%
99%
95%
100%f
AD person feels safe/supported at home
100%
100%
99%
99%
97%
96%
Having professional home care
84%f
85%f
76%
80%
69%
89%df
AD person--best possible quality of life
100%
100%
99%
100%
100%
98%
An organized peer group for AD sufferers
78%
80%
87%
83%
91%bc
93%bce
An organized peer group for caregivers
85%
79%
89%e
77%
83%
96%bcef
An away-from-home day program
66%
78%
87%b
84%b
85%b
82%b
AD person has social life--family/friends
99%
98%
100%
99%
97%
99%
100%fg
99%g
100%fg
99%g
96%g
89%
Caregiver’s ability to enjoy life
High “Very”/”Somewhat” Important (90% or more)
22
Canada (c) France (d) Germany (e) Spain (f) Brazil (g)
Low “Very”/”Somewhat” Important (55% or less)
Q500 I’d like to read you a list of statements that might or might not be important to you as caregiver to someone with Alzheimer’s Disease. For each item
on the list, I will first ask how important it is to you, and then ask how true it is for you as an Alzheimer’s caregiver.
Q505 [INSERT ITEM AT Q515] – is that very important, somewhat important, not too important, or not at all important?
Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
Performance on Issues: Caregivers
Issues that caregivers indicate are highly important are generally met, especially in
France and Germany. Several issues of moderate importance are less well met.
True according to caregiver
Base: AD Caregivers
23
% answering “Very True” or
“Somewhat True”
US (b)
Canada (c)
France (d)
Germany (e)
Spain (f)
Access to detailed information about AD
97%fg
92%g
94%fg
95%fg
85%
76%
Opportunities to discuss condition and
treatment with physician
93%cf
84%
90%f
99%bcdfg
77%
87%
Medical treatment that helps control
symptoms
85%
88%
90%f
94%bf
79%
89%f
Knowing prescribed medications are
taken as directed
93%
88%
98%c
97%c
92%
96%c
AD person feels safe/supported at home
99%
96%
97%
99%
96%
95%
Having professional home care
54%
66%
76%bf
79%bcf
59%
80%bcf
AD person--best possible quality of life
96%
91%
95%
97%
93%
94%
An organized peer group for AD
sufferers
66%
61%
75%c
72%
91%bcdeg
64%
An organized peer group for caregivers
71%c
54%
82%ceg
67%
88%bceg
65%
An away-from-home day program
50%
45%
80%bcg
79%bcg
77%bcg
59%c
AD person has social life--family/friends
87%
86%
92%f
98%bcf
80%
93%f
Caregiver’s ability to enjoy life
76%
85%
98%bcfg
99%bcfg
81%
84%
High Performance (90% or more “Very”/”Somewhat” True)
Brazil (g)
Low Performance (55% or less” Very”/”Somewhat” True)
Q510 How true is [PN: REPEAT ITEM AT Q515] for you – very true, somewhat true, not too true, or not at all true?
Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
Summary of Importance and Performance: Caregivers
The US, Canada, Spain, and Brazil all have areas where caregivers say that
performance on an issue falls substantially below its importance.
Discrepancy: Importance - Performance
Base: AD Caregivers
% Very or Somewhat Important –
% Very or Somewhat True
24
US (b)
Canada (c)
France (d)
Germany (e)
Spain (f)
Access to detailed information about AD
2%
8%
-1%
4%
6%
21%
Opportunities to discuss condition and
treatment with physician
5%
12%
10%
0%
19%
12%
Medical treatment that helps control
symptoms
14%
10%
10%
5%
21%
11%
Knowing prescribed medications are
taken as directed
4%
10%
1%
2%
3%
4%
AD person feels safe/supported at home
1%
4%
2%
0%
1%
1%
Having professional home care
30%
19%
0%
1%
10%
9%
AD person--best possible quality of life
4%
9%
4%
3%
7%
4%
An organized peer group for AD
sufferers
12%
19%
12%
11%
0%
29%
An organized peer group for caregivers
14%
25%
7%
10%
-5%
31%
An away-from-home day program
16%
33%
7%
5%
8%
23%
AD person has social life--family/friends
12%
12%
8%
1%
17%
6%
Caregiver’s ability to enjoy life
24%
14%
2%
0%
15%
5%
Moderate discrepancy (10-19 percentage points)
Brazil (g)
High discrepancy (20 percentage points or more)
Q505 [INSERT ITEM AT Q515] – is that very important, somewhat important, not too important, or not at all important? Q510 How true is [REPEAT ITEM AT Q515] for you
– very true, somewhat true, not too true, or not at all true? Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
Medication Improvements: Caregivers of Patients Currently on
Medication Caregivers in all countries say various AD medication improvements are
highly important. They agree with patients that control of AD symptoms and fewer
bothersome side effects are most important.
Base: AD Caregivers of
patients currently taking
medication
% answering
“Very Important” or
“Somewhat Important”
Importance of Improvements to Medication
US (b)
Canada (c)
France (d)
Germany (e)
Spain (f)
Brazil (g)
Coming in a form that
makes it easier to take
82%
79%
99%bcefg
93%bcg
86%
80%
Having a dosing regimen
that is easier to comply with
89%
89%
93%g
96%g
88%
80%
Having fewer bothersome
side-effects
90%
94%g
97%bg
100%bcfg
96%g
84%
Being better at controlling
the symptoms of
Alzheimer’s
100%g
99%
100%g
100%g
99%
94%
High “Very”/”Somewhat” Important (90% or more)
25
Low Very”/”Somewhat” Important(55% or less)
Q530 If you could improve the prescription medication the person is currently taking for Alzheimer’s, how important would each of the following improvements
be? [INSERT ITEM AT Q531] Would that improvement be very important, somewhat important, or not too important, or not at all important?
Base: AD patients currently taking medication US (n=88) Canada (n=72) France (n=98) Germany (n=94) Spain (n=95) Brazil (n=90)
Medication Satisfaction: Caregivers of Patients Currently on Medication
Only in Brazil do more than a third of caregivers say they are “very satisfied” with their
patients’ current medication. Nonetheless, Canada and Germany show higher satisfaction
overall, including both “very” and “somewhat” satisfied.
Top 2 Box
% answering “Very satisfied” or “Somewhat satisfied”
97%bcdfg
89%fg
82%
26%
80%
33%
33%
72%
76%
23%
28%
51%bcdef
g
56%
g
56%
64%fg
g
56%
43%g
24%
US (b)
Canada (c)
France (d)
Germany (e)
Somewhat satisfied
26
Spain (f)
Brazil (g)
Very satisfied
Q535 Overall, how satisfied are you with the current prescription therapy the person is taking for Alzheimer’s? Very satisfied, somewhat satisfied, not too
satisfied, or not at all satisfied?
Base: AD patients currently taking medication US (n=88) Canada (n=72) France (n=98) Germany (n=94) Spain (n=95) Brazil (n=90)
Attitudes: Caregivers
In addition to having a warm relationship with the person suffering from AD, the
majority of caregivers also want assurance that their patients are taking their
medication as directed.
Applies for the Caregiver
Base: AD Caregivers
% answering “Applies a Great Deal” or “Applies Somewhat”
Can.
Fr.
Ger.
Spa.
Bra.
(b)
(c)
(d)
(e)
(f)
(g)
Caring for someone with AD is burdensome
75%g
69%g
94%bcfg
94%bcfg
82%cg
18%
I have a warm relationship with the person who has AD
92%
96%
96%
98%
100%bcd
97%
It's hard to persuade people that the person with AD isn’t helpless
79%
70%
73%
83%c
83%c
82%c
Talking with other AD caregivers gives me perspective
78%
70%
83%c
81%
84%c
78%
I want to be sure the person with AD is taking medication as
directed
83%
85%
95%bc
96%bc
95%bc
96%bc
96%defg
94%defg
73%
83%f
71%
82%f
I don’t want to administer drugs with uncomfortable side-effects
88%
83%
85%
96%bcdg
94%cdg
79%
I worry what others think about the person who has AD
38%
31%
62%bc
53%bc
50%c
53%bc
90%dg
87%dg
76%
83%
82%
76%
It is hard to know how to provide good care for the person with AD
68%
64%
75%g
68%
80%cg
59%
I worry about the safety and well-being of the person with AD when
I am not there
82%
85%
82%
89%
86%
88%
Caring for someone with AD is rewarding
83%df
75%df
55%
76%df
61%
90%cdef
Caring for someone with AD helps me appreciate what’s really
important
Caring for someone with AD is one way I can repay some of the
love and care I received in the past
High Applicability (90% or more)
27
US
Low Applicability (55% or less)
Q600 I’m going to read you some statements that other people have made about caring for someone with Alzheimer’s Disease. For each one, please
say whether it applies a great deal to your situation, applies somewhat, applies only a little, or doesn’t apply at all.
Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
AD Information Sources: Caregivers
Physicians are the primary source of information for caregivers across all
countries. Other sources vary by country.
Base: AD Caregivers
Caregivers who get AD info from the following sources
% answering “Yes”
US (b)
Canada (c)
France (d)
Germany (e)
Spain (f)
The patient’s physician
92%g
87%g
92%g
98%cg
94%g
74%
Another physician/healthcare
provider
59%g
59%g
69%g
61%g
61%g
39%
An AD organization
57%g
52%g
66%cg
59%g
77%bceg
15%
Internet
81%defg
84%defg
56%ef
42%
33%
52%f
Books
79%cefg
56%
70%ce
53%
59%
61%
Magazines and newspaper articles
85%cdefg
71%eg
71%eg
50%
72%eg
54%
Medical journals
40%
37%
51%c
46%
38%
39%
TV and radio programs
51%
51%
47%
41%
63%deg
46%
69%eg
84%beg
74%eg
55%
75%eg
44%
Other
13%
25%bg
21%
18%
36%bdeg
11%
None/don’t look for information on
AD
0%
1%
5%b
3%
4%b
4%
Friends and family members
Brazil (g)
Highly Used Sources (55% or more)
28
Q700 What sources do you turn to for information about Alzheimer’s disease?
Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
AD Support Services Used: Caregivers Who Have Used AD
Support Services
Caregivers in Europe are more likely to use support services provided by AD organizations.
Ever used support services
Base: AD Caregivers
US (b)
Have Used Support Services
Base: Caregivers who used AD support
services
38%g
Canada (c) France (d) Germany (e) Spain (f)
35%g
70%bcg
60%bcg
84%bcdeg
Brazil**(g)
11%
Regularly used services and benefits provided by AD
organizations
Medical info about AD (causes, symptoms,
etc.)
16%
23%
50%bc
37%b
75%bcde
N/A
Information about research and treatments
for AD
18%
14%
36%c
60%bcd
45%bc
N/A
Listings of local peer support groups
45%
31%
53%c
70%bcd
70%bcd
N/A
Listings of home care services
16%
31%
23%
47%bd
46%bd
N/A
Listings of physicians who treat AD
5%
3%
26%bc
40%bc
32%bc
N/A
Listings for housekeeping services
11%
9%
16%
13%
13%
N/A
Social events for those living with AD
26%
14%
31%
33%c
61%bcde
N/A
Tips on how to cope with everyday life
32%
26%
47%ce
18%
42%e
N/A
Other
37%e
34%e
21%e
5%
27%e
N/A
Highly Likely Reason (55% or more)
29
Q815 Have you or has the person with Alzheimer’s ever used the support services available at an Alzheimer’s disease organization?
Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
Q820 Which services or benefits provided by the organization do you or the person with Alzheimer’s use regularly?
Base: Caregivers who used AD support services US (n=38) Canada (n=35) France (n=70) Germany (n=60) Spain (n=84) Brazil (n=13*)
Note ** = base too small to report
Why Support Services Not Used: Caregivers Aware of AD Organizations
As seen in the patient data, a sizeable number of caregivers aware of AD organizations
have not used their services.
Base: AD Caregivers
Aware of AD organizations but have NOT used support services
US (b)
Aware but have not used
support services
Base: Caregivers aware of
AD organizations and have
not used them
43%defg
Canada (c)
42%defg
France* (d)
23%fg
Germany** (e) Spain** (f)
16%
11%
Brazil** (g)**
11%
Reasons for NOT using services and benefits provided by AD
organizations
Too far / inconvenient
to get to
14%
2%
48%
N/A
N/A
N/A
No time
14%
5%
17%
N/A
N/A
N/A
Don’t have services/ benefits
we need
7%
14%
9%
N/A
N/A
N/A
Too much of a commitment
0%
0%
9%
N/A
N/A
N/A
Don’t want to think so much
about AD
0%
5%
4%
N/A
N/A
N/A
Other
72%
81%
61%
N/A
N/A
N/A
Highly Likely Reason (55% or more)
30
Q815 Have you or has the person with Alzheimer’s ever used the support services available at an Alzheimer’s disease organization?
Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
Q825 Are you aware of any Alzheimer’s disease organizations?
Base: Never used AD support services or not sure or decline to answer US (n=62) Canada (n=65) France (n=30) Germany (n=40) Spain (n=16**) Brazil (n=101)
Q830 Why haven’t you used services provided by Alzheimer’s Disease organizations?
Base: Caregivers aware of AD organizations and have not used them: US (n=43) Canada (n=42) France (n=23*) Germany (n=16**) Spain (n=11**) Brazil (n=12**)
Note: * = base too small to report ** = small base
Conclusions
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©2007, Harris Interactive Inc.
All rights reserved.
Conclusions
32
On many of the issues most important to patients, caregivers, or both, needs are being met.
On the other hand, there are a number of needs where performance ratings fall well below
importance ratings, suggesting substantial room for progress.
When it comes to AD treatments the majority of both patients and caregivers say their treatment
helps control the symptoms of AD and that they are at least somewhat satisfied with this
treatment. At the same time, improved treatments that increase symptom control while
lessening side effects would be important.
The primary source of AD information is the patient’s physician according to both patients and
caregivers. Indeed the patient’s physician is almost the only source in Brazil. Elsewhere other
physicians, family and friends, and magazines/newspapers are all additional sources for
patients. More caregivers than patients use these and other sources for AD information.
AD organizations are a source of information and of support services for more caregivers than
patients. Such organizations appear particularly well established in Europe in terms of use by
both patients and caregivers.
Appendix
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©2007, Harris Interactive Inc.
All rights reserved.
Patient and Caregiver Discrepancies
www.harrisinteractive.com
©2007, Harris Interactive Inc.
All rights reserved.
Prescription Medication Taking: Patients - Caregivers
Base: AD Patients
and Caregivers
Are you / the person with AD currently taking prescription medication
for Alzheimer’s Disease?
US (b)
France (d)
Germany (e)
-4%
-15%
-10%
-2%
-6%
Under 3 months
3%
1%
-
-
1%
3 to 6 months
10%
-10%
5%
-7%
-3%
7 months to 1 year
7%
6%
-6%
6%
8%
-20%
7%
1%
-5%
1%
Currently taking
medication
Canada (c)
Spain (f)
Brazil (g)
Base: AD Patients
and Caregivers of
patients currently
taking medication
More than 1 year
Caregivers 20 percentage points or more higher than patients
35
Q530/Q520 Are you/the person with AD currently taking prescription medication for Alzheimer’s Disease?
Base: AD Patients US (n=100/100) Canada (n=xx) France (n=100/100) Germany (n=100/100) Spain (n=100/100) Brazil (n=102/114)
Q535/Q525 How long have you/has the person with AD been taking prescription medication?
Base: Currently taking medication US (n=84/88) Canada (n=xx) France (n=83/98) Germany (n=84/94) Spain (n=93/95) Brazil (n=74/90)
Important Issues: Patients - Caregivers
Importance according to patient and caregiver
Base: AD Patients and Caregivers
% answering “Important” and % answering
“Very” or “Somewhat Important”
US
Canada
(b)
(c)
Access to detailed information about AD
Opportunities to discuss condition and
treatment with physician
France
Germany
Spain
Brazil
(d)
(e)
(f)
(g)
-10%
-27%
-21%
-48%
-44%
-
-13%
-9%
-28%
-35%
Medical treatment that helps control
symptoms
-4%
-4%
-6%
-11%
-29%
Knowing you are taking/knowing prescribed
meds are taken as directed
-2%
-8%
-6%
-12%
-31%
Feeling/AD person feels safe and supported
at home
-1%
-
-6%
-
-6%
Having professional home care
-26%
-27%
-4%
-36%
-11%
Best possible / AD person quality of life
-1%
-1%
-3%
-2%
-17%
An organized peer group for AD sufferers
-19%
-29%
-19%
-37%
-21%
An away-from-home day program
-31%
-25%
-14%
-34%
-13%
Keeping up a social life with family and
friends / AD person has social life
-4%
-2%
-4%
-
-10%
Ability to enjoy life
-1%
-
-4%
3%
-5%
Caregivers 20 percentage points or more higher than patients
36
Q515 [INSERT ITEM AT Q515] – is that important to you or not?
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
Q505 [INSERT ITEM AT Q515] – is that very important, somewhat important, not too important, or not at all important?
Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
Performance on Issues: Patients - Caregivers
True according to the patient and caregivers
Base: AD Patients and Caregivers
% answering “True” and % answering
“Very” or “Somewhat True”
US
Canada
France
Germany
Spain
Brazil
(b)
(c)
(d)
(e)
(f)
(g)
Access to detailed information about AD
-13%
-28%
-15%
-44%
-46%
Opportunities to discuss condition and
treatment with physician
-7%
-5%
-9%
-10%
-32%
Medical treatment that helps control
symptoms
1%
-3%
-16%
-7%
-25%
Knowing you are taking/knowing
prescribed meds are taken as directed
-7%
-21%
-7%
-21%
-27%
Feeling/AD person feels safe and
supported at home
-7%
-4%
-9%
-
-20%
Having professional home care
-18%
-32%
-9%
-32%
-9%
Best possible / AD person quality of life
-5%
-19%
-16%
-17%
-22%
An organized peer group for AD sufferers
-26%
-11%
-11%
-37%
-25%
An away-from-home day program
-27%
-17%
-14%
-38%
-17%
Keeping up a social life with family and
friends / AD person has social life
1%
3%
-6%
11%
-15%
Ability to enjoy life
19%
-17%
-18%
-17%
-6%
Caregivers 20 percentage points or more higher than patients
37
Q520 Is [REPEAT ITEM AT Q525] true or not true for you?
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
Q510 How true is [PN: REPEAT ITEM AT Q515] for you – very true, somewhat true, not too true, or not at all true?
Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
Summary of Importance and Performance: Patients - Caregivers
Discrepancy: Importance - Performance
Base: AD Patients and Caregivers
% Important - % True and
% Very or Somewhat Important –
% Very or Somewhat True
US (b)
Canada (c)
France (d)
Germany (e)
Spain (f)
Brazil (g)
Access to detailed information about AD
3%
1%
-6%
-4%
2%
Opportunities to discuss condition and
treatment with physician
7%
-8%
-
-18%
-3%
Medical treatment that helps control
symptoms
-5%
-1%
10%
-4%
-4%
Knowing you are taking/knowing
prescribed meds are taken as directed
5%
13%
1%
9%
-4%
Feeling/AD person feels safe and
supported at home
6%
4%
3%
-
14%
Having professional home care
-8%
5%
5%
-4%
-2%
Best possible / AD person quality of life
4%
22%
13%
15%
5%
An organized peer group for AD
sufferers
7%
-18%
-8%
-
4%
An away-from-home day program
-4%
-8%
-
4%
4%
Keeping up a social life with family and
friends / AD person has social life
-5%
-5%
2%
-11%
5%
Ability to enjoy life
-20%
17%
14%
20%
1%
Patients 20 percentage points or more higher than caregivers
38
Q515 [INSERT ITEM AT Q515] – is that important to you or not? Q520 Is [REPEAT ITEM AT Q525] true or not true for you?
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
Q505 [INSERT ITEM AT Q515] – is that very important, somewhat important, not too important, or not at all important? Q510 How true is [REPEAT ITEM AT Q515] for you
– very true, somewhat true, not too true, or not at all true? Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
Medication Improvements: Patients - Caregivers
Base: AD Patients and
Caregivers of patients
currently taking medication
% answering “Important”
and % answering
“Very Important” or
“Somewhat Important”
Importance of Improvements to Medication
US (b)
Canada (c)
France (d)
Germany (e)
Spain (f)
Brazil (g)
Coming in a form that
makes it easier to take
-19%
-21%
-13%
-20%
-15%
Having a dosing regimen
that is easier to comply with
-35%
-24%
-10%
-39%
-4%
Having fewer bothersome
side-effects
-27%
-1%
-5%
-24%
-8%
Being better at controlling
the symptoms of
Alzheimer’s
-4%
-8%
-2%
-22%
-22%
Caregivers 20 percentage points or more higher than patients
Q540 If you could improve the prescription medication you are currently taking for Alzheimer’s, would each of the following improvements be important or not?
39
Base: Currently taking medication US (n=84) Canada (n=xx) France (n=83) Germany (n=84) Spain (n=93) Brazil (n=74)
Q530 If you could improve the prescription medication the person is currently taking for Alzheimer’s, how important would each of the following improvements
be? [INSERT ITEM AT Q531] Would that improvement be very important, somewhat important, or not too important, or not at all important?
Base: AD patients currently taking medication US (n=88) Canada (n=72) France (n=98) Germany (n=94) Spain (n=95) Brazil (n=90)
Medication Satisfaction: Patients - Caregivers
Base: AD Patients and
Caregivers of patients
currently taking medication
% answering “Very
Satisfied” or “Somewhat
Satisfied”
Medication Satisfaction
US (b)
Canada (c)
France (d)
Germany (e)
Spain (f)
Brazil (g)
Top 2 Box
8%
3%
-1%
-3%
1%
Very satisfied
20%
2%
10%
-5%
2%
Somewhat satisfied
-12%
2%
-14%
3%
-
Patients 20 percentage points or more higher than caregivers
Q545 Overall, how satisfied are you with your current prescription therapy for Alzheimer’s? Very satisfied, somewhat satisfied, not too satisfied, or not at all satisfied?
40
Base: Currently taking medication US (n=84) Canada (n=xx) France (n=83) Germany (n=84) Spain (n=93) Brazil (n=74)
Q535 Overall, how satisfied are you with the current prescription therapy the person is taking for Alzheimer’s? Very satisfied, somewhat satisfied, not too satisfied, or
not at all satisfied?
Base: AD patients currently taking medication US (n=88) Canada (n=72) France (n=98) Germany (n=94) Spain (n=95) Brazil (n=90)
Attitudes: Patients - Caregivers
Which of the following apply for the
Patient/Caregiver?
Base: AD Patients and Caregivers
US
Can.
Fr.
Ger.
Spa.
Bra.
(b)
(c)
(d)
(e)
(f)
(g)
-23%
-42%
-24%
-26%
10%
3%
-19%
-11%
-5%
-15%
I wish I could persuade people around me that I am not helpless / It’s
hard to persuade people that the person with AD isn’t helpless
-26%
-13%
-20%
-19%
-31%
Talking with other people living with AD/other AD caregivers gives me
perspective on my situation
-32%
-33%
-36%
-43%
-45%
I want to be reassured that I am taking my AD medication as directed / I
want to be sure the person with AD is taking medication as directed
-20%
-19%
-15%
-14%
-35%
Living with/caring for someone with AD helps me appreciate the things
in life that are really important
-7%
-18%
-14%
-41%
-42%
I don’t like to take medication that causes uncomfortable side-effects / I
don’t want to administer drugs with uncomfortable side effects
-21%
-8%
-7%
-16%
-5%
I worry about what other people think of me / about the person who has
AD
1%
-7%
-11%
-2%
-18%
% answering “Applies” and “Applies a Great Deal” or “Applies
Somewhat”
I worry that the people who care for me may have too great a burden /
Caring for someone with AD is burdensome
I have a warm relationship with the people around me / the person who
has AD
Caregivers 20 percentage points or more higher than patients
41
Q600 I’m going to read you some statements that other people have made about what it is like having Alzheimer’s Disease. For each one, please say
whether it applies to your situation or not.
Base: AD Patients US (n=100) Canada (n=xx) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=102)
Q600 I’m going to read you some statements that other people have made about caring for someone with Alzheimer’s Disease. For each one, please
say whether it applies a great deal to your situation, applies somewhat, applies only a little, or doesn’t apply at all.
Base: AD Caregivers US (n=100) Canada (n=100) France (n=100) Germany (n=100) Spain (n=100) Brazil (n=114)
AD Information Sources: Patients - Caregivers
Base: AD Patients and Caregivers
% answering “Yes”
Patients and Caregivers who get AD info from the following
sources
US (b)
Canada (c)
France (d)
Germany (e)
Spain (f)
Brazil (g)
Your physician / The patient’s
physician
-3%
8%
-2%
-26%
-31%
Another physician or healthcare
provider
-16%
-24%
-5%
-26%
-32%
An AD organization
-23%
-20%
-9%
-29%
-11%
Internet
-31%
-45%
-30%
-30%
-52%
Books
-29%
-46%
-22%
-37%
-57%
Magazines and newspaper articles
-20%
-32%
-16%
-41%
-48%
Medical journals
-11%
-34%
-12%
-30%
-36%
TV and radio programs
-7%
-19%
2%
-33%
-37%
Friends and family members
-14%
9%
-1%
-17%
-36%
Other
-1%
-16%
-3%
-27%
-11%
-
-2%
-1%
1%
13%
None/don’t look for information
on AD
Caregivers 20 percentage points or more higher than patients
42
Q700 What sources do you turn to for information about Alzheimer’s disease?
Base: AD Patients/Caregivers US (n=100/100) Canada (n=xx) France (n=100/100) Germany (n=100/100) Spain (n=100) Brazil (n=102/114)
AD Support Services Used: Patients - Caregivers
Ever used support services
Base: AD Patients and Caregivers
US* (b) Canada (c)
Have Used Support Services
Base: Patients and Caregivers who
used AD support services
-12%
France (d)
-6%
Germany (e)
5%
Spain (f)
-29%
Brazil** (g)
-10%
Regularly used services and benefits provided by AD
organizations
Medical info about AD (causes,
symptoms, etc.)
7%
-2%
-2%
-22%
N/A
Information about new treatments for
AD
-6%
-6%
-3%
-27%
N/A
Listings of local peer support groups
9%
-8%
-33%
-8%
N/A
Listings of home care services
-16%
-4%
-13%
-17%
N/A
Listings of physicians who treat AD
-1%
16%
8%
-7%
N/A
Listings for housekeeping services
-11%
-
12%
2%
N/A
Social events for those living with AD
-11%
-3%
-11%
-5%
N/A
Tips on how to cope with everyday life
-17%
-17%
13%
-9%
N/A
-14
-21%
-2%
-12%
N/A
Other
Caregivers 20 percentage points or more higher than patients
43
Q800 Have you ever used the support services available at an Alzheimer’s disease organization?
Base: AD Patients/Caregivers US (n=100/100) Canada (n=xx) France (n=100/100) Germany (n=100/100) Spain (n=100/100) Brazil (n=102/114)
Q805 Which services or benefits provided by the organization do you use regularly?
Base: Used AD support services Base: US (n=26*/38) Canada (n=xx) France (n=64/70) Germany (n=65/60) Spain (n=55/84) Brazil (n=1**/13*)
Note: * = small base ** = base too small to report
Why Support Services Not Used: Patients - Caregivers
Base: AD Patients and
Caregivers
Aware of AD organizations but have NOT used support services
US (b)
Aware of AD organizations
Base: Patients and Caregivers
aware of AD organizations and
have not used them
Canada (c)
-9%
2%
Germany** (e) Spain** (f)
-5%
7%
Brazil**(g)
-11%
Reasons for NOT using services and benefits provided by AD
organizations
Too far/inconvenient to get to
-8%
-12%
N/A
N/A
N/A
No time
-5%
27%
N/A
N/A
N/A
Don’t have the
services/benefits we need
-4%
3%
N/A
N/A
N/A
Too much of a commitment
-
19%
N/A
N/A
N/A
Don’t want to think so much
about AD
18%
16%
N/A
N/A
N/A
Other
-7%
-37%
N/A
N/A
N/A
Patients 20 percentage points or more higher than caregivers
44
France* (d)
Caregivers 20 percentage points or more higher than patients
Q800/Q825 Have you ever/ or has the person with AD ever used the support services available at an Alzheimer’s disease organization?
Base: AD Patients/Caregivers US (n=100/100) Canada (n=xx) France (n=100/100) Germany (n=100/100) Spain (n=100/100) Brazil (n=102/114)
Q810/Q825 Are you aware of any Alzheimer’s Disease organizations?
Base: Never used AD support services or not sure or decline to answer: US (n=74/62) Canada (n=xx) France (n=36/30) Germany (n=35/40) Spain (n=45/16**)
Brazil (n=101/101)
Q815/Q830 Why haven’t you used services provided by Alzheimer’s Disease organizations?
Base: Aware of AD organizations and have not used them: US (n=34/43) Canada (n=xx) France (n=25*/23*) Germany (n=11**/16**) Spain (n=18**/11**) Brazil
(n=0**/12**) Note: * = small base ** = base too small to report
Findings by Country
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©2007, Harris Interactive Inc.
All rights reserved.
United States
Patients and caregivers both indicate that two key quality of life needs are being met: Home
environment safety and support and “the best quality of life possible under the circumstances.”
They also report having warm relationships with those around them and that caring for someone,
or living, with AD helps them appreciate important things in life.
Two somewhat less important issues should be noted as performance is particularly low: the
availability of professional home care and the ability of caregivers to enjoy life.
Roughly 85% of patients take AD medication. Nearly all patients and caregivers agree that
improved control of AD symptoms would be important. By and large patients and caregivers feel
they’re taking/giving medications as directed, but caregivers could use more reassurance of this.
On other medication issues caregivers are more negative than patients:
46
Caregivers are less satisfied with their current medications (26% “very satisfied” vs. 46% for patients.)
Caregivers say they don’t like administering AD medications that cause uncomfortable side effects more
often than patients say they don’t like taking medications because of uncomfortable side effects (88% vs.
67%.)
Caregivers want dosing regimens that are easier to comply with, medications that come in a form that is
easier to take, and medications that have fewer bothersome side effects. Patients also want these
improvements, but in smaller numbers.
Most patients and caregivers consider the patient’s physician a source for AD information. They
tend to turn to their family and friends for AD information than to AD organizations. As a rule they
feel their need for AD information is both important and largely being met.
Canada (Caregivers Only)
47
Over 90% of caregivers agree that they “have a warm relationship with the person who has
Alzheimer’s Disease” and that “caring for someone with Alzheimer’s Disease helps me
appreciate the things in life that are really important.”
Positive feelings extend to important needs that are met including knowing “the person feels
safe and supported in their home environment” and that the AD person “enjoys the best quality
of life under the circumstances.”
Other needs are reported as less well met, with particularly low performance on away-fromhome day programs and organized peer groups for AD caregivers.
Canadian caregivers report the lowest percentage of their patients on medications (72%) of the
six countries studied. Their overall satisfaction with medications, however, is as high as in most
countries. That said, they agree that current AD medications could be “better at controlling the
symptoms of Alzheimer’s,” that they could have “fewer bothersome side effects,” and that they
“don’t like to give the person with Alzheimer’s disease a medication that causes uncomfortable
side effects.”
The majority of caregivers say they have adequate information now, largely from the patient’s
physician, friends and family, and the Internet. Half of caregivers say they turn to an AD
organization for information.
France
48
Lifestyle issues important to nearly all patients and caregivers include the patient’s “feeling safe
and supported in your home environment” and “keeping up a social life with family and friends.”
Both groups report these needs are met in their life situation.
On the other hand, the 76% of French patients who say they have the best possible quality of
life is markedly lower than the percentage who say this is important.
Nearly all caregivers report that their patients take AD medications, but somewhat fewer
patients report this. Caregivers are also more likely to emphasize the importance of “a dosing
regimen that is easier to comply with” and of medications “coming in a form that makes it easier
to take,” but 80% or more are reasonably satisfied with their current medications.
Access to detailed information about Alzheimer’s Disease is important to nearly all caregivers
but fewer patients. The patient’s physician and family and friends are the two most likely
sources now turned to by patients and caregivers in search of AD information.
Roughly two thirds of both groups say they have used support services from AD organizations.
Germany
Most patients and caregivers say they have warm relationships with those around them. They
also say that an active social life and a safe and supportive home environment are important,
but patients are somewhat less likely than caregivers to say these latter needs are being met.
Despite the fact that 76% of caregivers say it’s rewarding taking care of their AD patient, nearly
all of them also say it’s burdensome. Patients pick up on this: 70% worry that their caregivers
may have too great a burden.
Both patients and caregivers point to the importance of discussing the AD condition and
treatment with the patients’ physicians and also say that need is being met.
49
The patient’s physician is the main source of AD information for both patients and caregivers. They also
use information from AD organizations.
Nearly all patients and caregivers are reasonably satisfied with their current medication.
Nonetheless, they also agree that important AD medication improvements would lead to “fewer
bothersome side effects” and better control of the symptoms of Alzheimer’s. Caregivers, more
than patients, also say that important improvements would include a dosing regimen that is
easier to comply with and a form of medication that is easier to take.
Spain
Quality of life issues important to most patients and caregivers include the patient’s active
social life and the enjoyment of “the best quality of life possible under the circumstances.”
Whether these needs are well met, however, is at issue:
Patients are somewhat more likely than caregivers to say that they have an active social life.
Caregivers are more likely than patients to say their patients enjoy the best life possible.
Caregivers consider access of information about AD and the opportunity to discuss their
patient’s condition and treatment options with the patient’s physician highly important, but these
needs are less likely to be met. On the other hand, these needs are roughly met for the fewer
number of patients who say they are important.
50
The patient’s physician and family and friends are the two most likely sources turned to for AD
information according to both patients and caregivers. AD organizations are also popular among
caregivers – 77% say they turn to these organizations for information; only 48% of patients say the
same.
Spain has the highest percentage of patients on medication of the countries studied, but
relatively low satisfaction with those medications.
Caregivers, more than patients, say improvements would be important if they led to medications coming
in a form that makes it easier to take and a dosing regimen that is easier to comply with.
Patients and caregivers both say that improvements would be important if they led to better control of
AD symptoms and fewer bothersome side effects.
Brazil
51
Both patients and caregivers say certain AD issues are at least moderately important, but then say
performance is poor:
The most important needs to patients are feeling safe and supported at home and keeping a social life with
family and friends. For both, performance ratings are at least 10 percentage points lower.
Access to AD information and an organized peer support group for the person suffering from AD are
moderately important needs for patients and highly important to caregivers, but are not as available as they
should be according to both groups.
Brazil’s patients and caregivers report relatively low current medication taking (73% and 79%
respectively). As elsewhere, however, more caregivers want reassurance that the person with
Alzheimer’s is taking the medication as directed.
Patients and caregivers are reasonably satisfied with AD medications, but most caregivers endorse
better control of AD symptoms as an important medication improvement.
Few caregivers and patients say they are aware of any AD organizations. As elsewhere, the majority
consider the patient’s physicians a source for AD information.
Background and Methodology
www.harrisinteractive.com
©2007, Harris Interactive Inc.
All rights reserved.
About the Study
Novartis commissioned Harris Interactive in May of 2007 to conduct research for possible public
release among patients and caregivers of patients with early-stage Alzheimer’s disease (AD) in
the US, Canada, France, Germany, Spain and Brazil.
Research objectives of this study include:
Assess unmet needs of early-stage AD patients and their caregivers;
Identify information or communication gaps between patients and caregivers;
Identify information or communication gaps with physicians, as perceived by patients and
caregivers;
Gain insight into challenges facing caregivers in seeking to ensure appropriate treatment for their
patients;
Identify perceived barriers to optimal treatment and compliance – including issues around the
formulation and modes of administration of currently available medications.
53
How the Research was Conducted
54
The study was conducted between June 14th and August 20th, 2007.
100 to 102 patients were interviewed in each of France, Germany, Spain, Brazil and the US.
100 to 114 caregivers were interviewed in each of the same countries and in Canada.
Interviewing of Canadian patients is still underway and will be reported separately.
Study participants were initially recruited through nationally recruited physicians who referred
patients and caregivers who might qualify for the study.
In France, Germany and Spain, all patients and caregivers were recruited through the physician recruit.
In Brazil patients and caregivers were referred by nationally recruited physicians as well as physicians
working in private clinics and nursing homes, and by the nursing homes directly.
In the US and Canada, patients and caregivers were recruited through the physician recruit, Harris
Interactive’s General and/or Chronic Illness Panels, referrals from AD organizations via advertisements,
and vendor-supplied lists of AD sufferers and household members.
To qualify for the study the following criteria were met:
Patients - diagnosed with mild-to-moderate AD
Caregivers – provide care and/or assistance of any kind to someone diagnosed with mild-to-moderate
AD
Patients and caregivers were invited to complete the 10 minute survey over the phone.
Methodology
Statistical Testing of Findings
In conducting this analysis, data were tabulated and tested at 95% confidence. Testing differences between
subgroups at the 95% confidence level indicates that there is no more than a 5 in 100 chance that the
difference observed between the subgroups could have been obtained by chance.
Numbers with superscripts (a, b, c) indicate a statistically significant difference between the subgroups being
analyzed.
Directional vs. Statistically Significant Findings
Where results are not indicated as being statistically significant, caution should be exercised in drawing
conclusions.
Sum of percentages
Percentages shown generally add to 100% of the base, whether all patients in a given country, all caregivers
in a given country, or subsets of either. If they should add to 100% but are somewhat off, the missing
respondents said they were unsure or declined to answer.
Terminology: Patient and Caregivers
Patients confirmed that a physician or other healthcare professional had told them they had Alzheimer’s
disease.
Caregivers confirmed that they were helping such patients, for instance by going to doctors’ appointments
with them, helping them take medication, helping with their housework or cooking, helping them bathe or
dress, providing emotional support, and so on.
55
Demographics
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©2007, Harris Interactive Inc.
All rights reserved.
Patient Demographics
www.harrisinteractive.com
©2007, Harris Interactive Inc.
All rights reserved.
Patient Demographics
Base: All
Patients
US (b)
Canada (c)
France (d)
(n=100)
(n=100)
(n=100)
68.9
Mean Age
Germany (e)
Spain (f)
Brazil (g)
(n=100)
(n=100)
(n=102)
71.3
73.9
73.4b
77.0bdef
62%eg
60%eg
42%
57%eg
34%
38%
40%
58%bdf
43%
66%bdf
Gender
Male
Female
Base: All Patients
US*
Recruited to study by:
58
Base: All Patients
Brazil*
Recruited to study by:
Physician recruit
2%
General/Chronic Illness Panels
5%
AD organizations
10%
Vendor supplied lists
83%
Q900 How old are you?
Q1010 Gender
Base: AD Patients
* Breakdown of patients in the US and Brazil recruited through a variety of sources
Doctors in private clinics
8%
Doctors in nursing homes
36%
Nursing homes
56%
Caregiver Demographics
www.harrisinteractive.com
©2007, Harris Interactive Inc.
All rights reserved.
Caregivers Demographics
Base: All
Caregivers
US (b)
Canada (c)
France (d)
(n=100)
Spain (f)
Brazil (g)
(n=100)
(n=114)
(n=100)
(n=100)
59cdefg
54defg
47g
44
48g
42
Male
25%g
30%g
27%g
27%g
26%g
12%
Female
75%
70%
73%
73%
74%
88%bcdef
US*
Canada*
Mean Age
(n=100)
Germany (e)
Gender
Base: All Caregivers
Recruited to study by:
60
Physician recruit
12%
General/Chronic Illness Panels
57%
AD organizations
21%
Vendor supplied lists
10%
Base: All Caregivers
Brazil*
Indicated by:
11%
87%
2%
-
Q900 May I ask how old you are?
Q1010 Gender
Base: AD Caregivers
* Breakdown of caregivers in US, Canada and Brazil recruited through a variety of sources
Doctors in private clinics
10%
Doctors in nursing homes
30%
Nursing homes
60%
Demographics of Caregivers’ Patients
Base: All Caregivers
US (b)
(n=100)
Canada (c)
France (d) Germany (e) Spain (f)
Brazil (g)
(n=100)
(n=100)
(n=100)
(n=100)
(n=114)
78e
81bdefg
76
75
76
77e
Male
43%g
38%
38%
60%bcdg
50%g
28%
Female
57%e
60%e
57%e
40%
50%
70%bdef
-
2%
5%bef
-
-
2%
42%cdefg
6%
19%cg
11%
16%cg
7%
39%dg
45%dfg
22%g
36%dg
31%g
5%
Grandparent
3%
5%
8%g
11%bg
10%bg
2%
Other relative
13%
27%bdg
11%
24%bdg
38%bdeg
11%
Unrelated friend
3%
13%bdg
1%
18%bdfg
5%
3%
-
4%
36%bcef
-
-
68%bcdef
Mean Age
Gender
Decline to answer
Relationship
Spouse or partner
Parent
Other
61
Q800 Is the person with Alzheimer’s Disease we’ve been discussing a man or a woman?
Q805 What is that person’s relationship to you? Is the person with Alzheimer’s Disease your spouse or partner, your parent, your grandparent, another
relative, or an unrelated friend?
Q810 How old is the person with Alzheimer’s disease?
Base: AD Caregivers