Alzheimer’s Disease: Global Survey of Patients and Caregivers

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Alzheimer’s Disease: Global Survey of Patients and Caregivers

Prepared for:

August 23, 2007

2

Contents

Global Findings 3

Key Findings 4Detailed Findings 7

Patients 8Caregivers 20

Conclusions

AppendixPatient and Caregiver DiscrepanciesFindings by Country

31

33

34

45Background and Methodology 52Demographics 56

Patients 57Caregivers 59



Global FindingsGlobal Findings

4

Key Findings

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 away-from-home day program; and detailed information about AD.

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Key Findings, cont’d

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.

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.

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.

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Key Findings, cont’d

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.

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Detailed Findings



PatientsPatients

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Years Since Diagnosis: PatientsOn average patients were diagnosed with AD three to four years ago

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)

Base: AD Patients Number of Years Since AD Diagnosis

US (b) Canada (c) 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%

Mean # of years 3.6 3.7 3.2 4.2 3.1

10

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.

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)

Base: AD Patients Are you currently taking prescription medication for Alzheimer’s Disease?


Currently taking medication 84% 83% 84% 93%bdeg 73%

Base: AD Patients currently taking

medication How long have you been taking prescription medication?

Under 3 months 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%

More than 1 year 69%def 37% 38% 48% 80%def

Median time on medication (50%)

Mor

e tim

e on

med

icat

ion

11

Important Issues: PatientsAcross 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.

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)

Base: AD Patients Importance according to patient

% answering “Important” US Canada France Germany Spain Brazil

(b) (c) (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)

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Performance on Issues: PatientsPatients in general say they enjoy the quality of life issues they say are most important.

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)

Base: AD Patients True according to the patient

% 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

Best possible quality of life 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%

Ability to enjoy life 95%defg 81%f 81%f 64% 78%f

High Performance (90% or more True) Low Performance (55% or less True)

13

Base: AD Patients Discrepancy: Importance - Performance% Important – % True 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%

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.

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)

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Base: AD Patients currently taking medication

Importance of Improvements to Medication

% answering “Important” US (b) Canada (c) France (d) 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%

Medication Improvements: Patients Currently on MedicationThe 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.

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)

High Importance (90% or more) Low Importance (55% or less)

15

Top 2 Box% answering “Very satisfied” or “Somewhat satisfied”

24%

25%

23%

69%77%

46%g50%g58%g

44%g

53%df

43%df

46%df

96%fg

83%f90%fg


Somewhat satisfied Very satisfied

Medication Satisfaction: Patients Currently on MedicationWhile across countries the majority of patients are at least “somewhat satisfied” with their current medication, fewer patients in Spain agree.

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)

16

Attitudes: PatientsPatients 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.

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)

Base: AD Patients Which of the following apply for the Patient?

% answering “Applies” US 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%

Living with AD helps me appreciate the things in life that are really important 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%

High Applicability (90% or more) Low Applicability (55% or less)

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)

Base: AD Patients Patients who get AD info from the following sources% answering “Yes” US (b) Canada (c) France (d) Germany (e) Spain (f) Brazil (g)

Your physician 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%

None/don’t look for information on AD 0% 3% 2% 5%b 17%bdef

AD Information Sources: PatientsPatients’ physicians are the most likely sources of AD information.

Highly Mentioned Sources (55% or more)

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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

Base: AD Patients Ever used support services US* (b) Canada (c) France (d) Germany (e) Spain (f) Brazil** (g)

Have Used Support Services 26%g 64%bg 65%bg 55%bg 1%

Base: Patients who used AD support services

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

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.

Highly Used Services (55% or more)

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Why Support Services Not Used: Patients Aware of AD OrganizationsA sizeable number of patients who are aware of AD organizations have not used their services.

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

Base: AD Patients Aware of AD organizations but have NOT used support services US (b) Canada (c) France* (d) Germany** (e) Spain** (f) Brazil**(g)

Aware of AD organizations 34%efg 25%eg 11%g 18%g -

Base: Patients aware of AD organizations and have not

used them

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)



CaregiversCaregivers

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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)

Base: AD Caregivers Is the person with AD currently taking prescription medication?


Currently taking medication 88% 72% 98%bcg 94%cg 95%cg 79%

Base: AD Caregivers of patients currently taking medication

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%

More than 1 year 89%cdef 56%cd 30% 37% 53% 79%bcef

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.

Median time on medication (50%)

Mor

e tim

e on

med

icat

ion

22Q500 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)

Base: AD Caregivers Importance according to caregiver% answering “Very Important” or “Somewhat Important” US (b) Canada (c) France (d) Germany (e) Spain (f) Brazil (g)

Access to detailed information about AD 99%df 100%df 93% 99%df 91% 97%


98% 96% 100%cf 99% 96% 99%


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%

Caregiver’s ability to enjoy life 100%fg 99%g 100%fg 99%g 96%g 89%

Important Issues: CaregiversOnly “having professional home care” and “an away-from-home day program” drop to moderate importance for caregivers across all countries.

High “Very”/”Somewhat” Important (90% or more) Low “Very”/”Somewhat” Important (55% or less)

23Q510 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)

Base: AD Caregivers True according to caregiver % answering “Very True” or “Somewhat True” US (b) Canada (c) France (d) Germany (e) Spain (f) Brazil (g)

Access to detailed information about AD 97%fg 92%g 94%fg 95%fg 85% 76%


93%cf 84% 90%f 99%bcdfg 77% 87%


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


Having professional home care 54% 66% 76%bf 79%bcf 59% 80%bcf


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%

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.

High Performance (90% or more “Very”/”Somewhat” True) Low Performance (55% or less” Very”/”Somewhat” True)

24Q505 [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)

Base: AD Caregivers Discrepancy: Importance - Performance% 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 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%


Having professional home care 30% 19% 0% 1% 10% 9%


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%

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.

Moderate discrepancy (10-19 percentage points) High discrepancy (20 percentage points or more)

25Q530 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)

Base: AD Caregivers of patients currently taking medication


% answering “Very Important” or “Somewhat Important” 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%


100%g 99% 100%g 100%g 99% 94%

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.

High “Very”/”Somewhat” Important (90% or more) Low Very”/”Somewhat” Important(55% or less)

26

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)

Top 2 Box% answering “Very satisfied” or “Somewhat satisfied”

Medication Satisfaction: Caregivers of Patients Currently on MedicationOnly 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.

24%

26% 33%23%

33%

28%

82%89%

80%

97%

72%76%

43%g

64%fg

56%g56%g56%g

51%bcdef


Somewhat satisfied Very satisfied

fg

bcdfg

27 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)

Base: AD Caregivers Applies for the Caregiver

% answering “Applies a Great Deal” or “Applies Somewhat” US 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

Caring for someone with AD helps me appreciate what’s really important 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

Caring for someone with AD is one way I can repay some of the love and care I received in the past 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

Attitudes: CaregiversIn 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.

High Applicability (90% or more) Low Applicability (55% or less)

28Q700 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)

Base: AD Caregivers Caregivers who get AD info from the following sources

% answering “Yes” US (b) Canada (c) France (d) Germany (e) Spain (f) Brazil (g)

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%

Friends and family members 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%

AD Information Sources: CaregiversPhysicians are the primary source of information for caregivers across all countries. Other sources vary by country.

Highly Used Sources (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

Base: AD Caregivers Ever used support services US (b) Canada (c) France (d) Germany (e) Spain (f) Brazil**(g)

Have Used Support Services 38%g 35%g 70%bcg 60%bcg 84%bcdeg 11%

Base: Caregivers who used AD support services



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

AD Support Services Used: Caregivers Who Have Used AD Support ServicesCaregivers in Europe are more likely to use support services provided by AD organizations.


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

Base: AD Caregivers Aware of AD organizations but have NOT used support services US (b) Canada (c) France* (d) Germany** (e) Spain** (f) Brazil** (g)**

Aware but have not used support services 43%defg 42%defg 23%fg 16% 11% 11%

Base: Caregivers aware of AD organizations and have

not used them


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

Why Support Services Not Used: Caregivers Aware of AD OrganizationsAs seen in the patient data, a sizeable number of caregivers aware of AD organizations have not used their services.




ConclusionsConclusions

32

Conclusions

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.



AppendixAppendix



Patient and Caregiver DiscrepanciesPatient and Caregiver Discrepancies

35

Prescription Medication Taking: Patients - Caregivers

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)

Base: AD Patients and Caregivers

Are you / the person with AD currently taking prescription medication for Alzheimer’s Disease?


Currently taking medication -4% -15% -10% -2% -6%

Base: AD Patients and Caregivers of patients currently taking medication

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%

More than 1 year -20% 7% 1% -5% 1%

Caregivers 20 percentage points or more higher than patients

36

Important Issues: Patients - Caregivers

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)

Base: AD Patients and Caregivers Importance according to patient and caregiver

% answering “Important” and % answering “Very” or “Somewhat Important”

US Canada France Germany Spain Brazil

(b) (c) (d) (e) (f) (g)

Access to detailed information about AD -10% -27% -21% -48% -44%

Opportunities to discuss condition and treatment with physician - -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%


37

Performance on Issues: Patients - Caregivers

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)

Base: AD Patients and Caregivers True according to the patient 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%


38

Base: AD Patients and Caregivers Discrepancy: Importance - Performance% 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%

Summary of Importance and Performance: Patients - Caregivers

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)

Patients 20 percentage points or more higher than caregivers

39



% answering “Important” and % answering “Very Important” or “Somewhat Important” 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%


-4% -8% -2% -22% -22%

Medication Improvements: Patients - Caregivers

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)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)


40

Medication Satisfaction: Patients - Caregivers


Medication Satisfaction

% answering “Very Satisfied” or “Somewhat Satisfied” 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% -

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)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)

Patients 20 percentage points or more higher than caregivers

41

Attitudes: Patients - Caregivers

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)

Base: AD Patients and Caregivers Which of the following apply for the Patient/Caregiver?

% answering “Applies” and “Applies a Great Deal” or “Applies Somewhat”

US 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 / Caring for someone with AD is burdensome -23% -42% -24% -26% 10%

I have a warm relationship with the people around me / the person who has AD 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%


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)

Base: AD Patients and CaregiversPatients and Caregivers who get AD info from the following

sources% answering “Yes” 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%

None/don’t look for information on AD - -2% -1% 1% 13%

AD Information Sources: Patients - Caregivers


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

Base: AD Patients and Caregivers Ever used support services US* (b) Canada (c) France (d) Germany (e) Spain (f) Brazil** (g)

Have Used Support Services -12% -6% 5% -29% -10%

Base: Patients and Caregivers who used AD support services



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

Other -14 -21% -2% -12% N/A

AD Support Services Used: Patients - Caregivers


44

Why Support Services Not Used: Patients - Caregivers

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

Base: AD Patients and Caregivers Aware of AD organizations but have NOT used support services

US (b) Canada (c) France* (d) Germany** (e) Spain** (f) Brazil**(g)

Aware of AD organizations -9% 2% -5% 7% -11%

Base: Patients and Caregivers aware of AD organizations

and have not used them


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 Caregivers 20 percentage points or more higher than patients



Findings by CountryFindings by Country

46

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: 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.

47

Canada (Caregivers Only)

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-from-home 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.

48

France

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.

49

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.

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.

50

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.

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.

51

Brazil

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 MethodologyBackground and Methodology

53

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.

54

How the Research was Conducted

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.

55

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.



DemographicsDemographics



Patient DemographicsPatient Demographics

58

Patient Demographics

Base: All Patients


(n=100) (n=100) (n=100) (n=100) (n=100) (n=102)

Mean Age 68.9 71.3 73.9 73.4b 77.0bdef

Gender

Male

Female

62%eg

38%

60%eg

40%

42%

58%bdf

57%eg

43%

34%

66%bdf

Base: All Patients Brazil*

Recruited to study by:

Doctors in private clinics

Doctors in nursing homes

Nursing homes

8%

36%

56%

Q900 How old are you? Q1010 GenderBase: AD Patients* Breakdown of patients in the US and Brazil recruited through a variety of sources

Base: All Patients US*


Physician recruit

General/Chronic Illness Panels

AD organizations

Vendor supplied lists

2%

5%

10%

83%



Caregiver DemographicsCaregiver Demographics

60

Caregivers Demographics

Base: All Caregivers


(n=100) (n=100) (n=100) (n=100) (n=100) (n=114)

Mean Age 59cdefg 54defg 47g 44 48g 42

Gender

Male

Female

25%g

75%

30%g

70%

27%g

73%

27%g

73%

26%g

74%

12%

88%bcdef

Q900 May I ask how old you are? Q1010 GenderBase: AD Caregivers* Breakdown of caregivers in US, Canada and Brazil recruited through a variety of sources

Base: All Caregivers Brazil*

Indicated by:

Doctors in private clinics

Doctors in nursing homes

Nursing homes

10%

30%

60%

Base: All Caregivers US* Canada*


Physician recruit

General/Chronic Illness Panels

AD organizations

Vendor supplied lists

12%

57%

21%

10%

11%

87%

2%

-

61

Demographics of Caregivers’ Patients

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

Base: All Caregivers US (b) Canada (c) France (d) Germany (e) Spain (f) Brazil (g)

(n=100) (n=100) (n=100) (n=100) (n=100) (n=114)

Mean Age 78e 81bdefg 76 75 76 77e

Gender

Male

Female

Decline to answer

43%g

57%e

-

38%

60%e

2%

38%

57%e

5%bef

60%bcdg

40%

-

50%g

50%

-

28%

70%bdef

2%

Relationship

Spouse or partner

Parent

Grandparent

Other relative

Unrelated friend

Other

42%cdefg

39%dg

3%

13%

3%

-

6%

45%dfg

5%

27%bdg

13%bdg

4%

19%cg

22%g

8%g

11%

1%

36%bcef

11%

36%dg

11%bg

24%bdg

18%bdfg

-

16%cg

31%g

10%bg

38%bdeg

5%

-

7%

5%

2%

11%

3%

68%bcdef

Alzheimer’s Disease: Global Survey of Patients and Caregivers

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