Five-Country Alzheimers Disease Survey Robert J. Blendon, Sc.D. - - PowerPoint PPT Presentation

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Five-Country Alzheimer’s Disease Survey

Robert J. Blendon, Sc.D. John M. Benson, M.A. Kathleen J. Weldon Harvard School of Public Health

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Experience with Alzheimer’s Disease

• Majority of public have personal experience with

Alzheimer’s disease, saying they know or have known someone with the disease

• About three in ten have personal experience with a

family member with Alzheimer’s disease

• About one in seven have had significant life

experience in giving support to someone who has Alzheimer’s disease

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Experience with Knowing Someone with Alzheimer’s Disease

42% 73% 33% 77% 19% 54% 34% 73% 30% 72% France Germany Poland Spain U.S. France Germany Poland Spain U.S Know or have known someone with Alzheimer’s And that person is/was a family member

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Experience with Being One of People Most Involved in Decision-making, Financial Support or Day-to-Day Caretaking for Someone with Alzheimer’s Disease

82% 17% 72% 27% 85% 13% 84% 14% 86% 14% France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, have been one of people most involved No, have not been one of people most involved

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Experience with Being One of People Most Involved in Decision-making or Financial Support for Someone with Alzheimer’s Disease

88% 11% 82% 18% 90% 9% 91% 8% 91% 9% France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, have been one of people most involved No, have not been one of people most involved

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Experience with Being One of People Most Involved in Day-to-day Care for Someone with Alzheimer’s Disease

86% 13% 80% 18% 88% 11% 89% 10% 91% 9% France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, have been one of people most involved No, have not been one of people most involved

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Beliefs about Availability of Treatment and Test

• Many believe there is now an effective medical or

pharmaceutical treatment to slow the progression of Alzheimer’s disease and make the symptoms less severe

• Majority in all five countries believe treatment is

currently available or will be in five years

• Significant portion of the public in all five countries

believes reliable medical test currently available

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

59% 47% 48% 27% 38% 63% 44% 42% 50% 40% There is an effective treatment to slow the progression of Alzheimer’s disease and make the symptoms less severe There is currently a reliable medical test

Public’s Perception of Availability of Effective Treatment and Reliable Medical Test

France Germany Poland Spain U.S. France Germany Poland Spain U.S

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

18% 24% 47% 18% 26% 27% 8% 7% 63% 19% 14% 42% 18% 31% 40% France Germany Poland Spain U.S. France Germany Poland Spain U.S France Germany Poland Spain U.S There is an effective treatment now There will be an effective treatment in next five years Is not an effective treatment now/will not be one in five years

Public’s Perception of Whether There Is Or Will Be an Effective Medical or Pharmaceutical Treatment to Slow the Progression of Alzheimer’s Disease in the Next Five Years

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

11% 30% 59% 27% 26% 48% 39% 23% 38% 25% 31% 44% 18% 32% 50% France Germany Poland Spain U.S. France Germany Poland Spain U.S France Germany Poland Spain U.S Yes, there is a reliable test No, there isn’t Don’t know

Public’s Perception of Whether There Is a Reliable Test Currently Available to Determine If a Person Suffering from Confusion and Memory Loss Is in Early Stages of Alzheimer’s

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Attitudes about Testing and Diagnosis

• Most report would see doctor for diagnosis if had

symptoms, and would want to be told if they had the disease

• Most would also want a family member to see a

doctor, and would want the family member to be told

• Significant public interest in early diagnostic testing

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Attitudes about Wanting to See a Doctor If They Were Exhibiting Signs of Confusion and Memory Loss

10% 89% 4% 95% 9% 85% 7% 90% 11% 88% France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, would want to see doctor to determine if Alzheimer’s No, would not want to see doctor

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Attitudes about Wanting a Family Member Who Was Exhibiting Signs of Confusion and Memory Loss to See a Doctor

2% 98% 1% 99% 2% 97% 1% 98% 6% 94% France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, would want family member to see doctor to determine if Alzheimer’s No, would not want family member to see doctor

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Attitudes about Wanting to Be Told If A Doctor Believed They Had Alzheimer’s Disease

5% 94% 2% 96% 2% 98% 3% 97% France Germany Poland Spain France Germany Poland Spain Yes, would want to be told No, would not want to be told

This question not asked in U.S.

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Attitudes about Wanting a Family Member to Be Told If a Doctor Believed That Family Member Had Alzheimer’s Disease

13% 81% 11% 80% 9% 87% 10% 84% Among those who said would want family member to see doctor France Germany Poland Spain France Germany Poland Spain Yes, would want family member to be told No, would not want family member to be told

This question not asked in U.S.

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Interest in Getting a Test Before Exhibiting Symptoms to Determine If They Were Likely to Get Alzheimer’s in the Future, Should Such a Test Become Available

35% 35% 30% 27% 32% 39% 20% 48% 30% 48% 28% 23% 33% 39% 26% France Germany Poland Spain U.S. France Germany Poland Spain U.S France Germany Poland Spain U.S Very likely to get such a test Somewhat likely Not too/not at all likely

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Perceptions of Symptoms of Alzheimer’s Disease

• General agreement on some symptoms of Alzheimer’s,

disagreement on others

• Majorities see the following as being common symptoms of

Alzheimer’s: confusion and disorientation, wandering and getting lost, difficulty remembering things in their life from the day before, difficulty managing daily tasks, difficulty managing and paying bills

• Opinion is divided the following are common symptoms of

Alzheimer’s disease: difficulty remembering things in their life from years before, anger and violence, loss of appetite

• Less than half of people in all countries believe hallucinations
• r hearing voices and problems with pain are common

symptoms

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms of Alzheimer’s Disease

84% 88% 92% 91% 92% 80% 88% 91% 95% 96% 74% 85% 80% 88% 86% 73% 86% 87% 89% 92% 80% 83% 94% 92% 91%

Difficulty remembering things from day before Difficulty managing daily tasks Difficulty managing and paying bills Wandering and getting lost Confusion and disorientation France Germany Poland Spain U.S.

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms of Alzheimer’s Disease

Loss of appetite Hallucinations and hearing voices Problems with pain Anger and violence Difficulty remembering things from years before France Germany Poland Spain U.S.

25% 40% 52% 53% 68% 24% 40% 33% 48% 76% 21% 26% 21% 35% 58% 22% 34% 31% 40% 44% 23% 24% 37% 46% 47%

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms or Signs of Alzheimer’s Disease:

Confusion and Disorientation

1% 7% 92% 2% 2% 96% 5% 9% 86% 2% 7% 92% 2% 7% 91% France Germany Poland Spain U.S. France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, is a common symptom No, is not a common symptom Don’t know

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms or Signs of Alzheimer’s Disease:

Wandering and Getting Lost

1% 8% 91% 1% 5% 95% 4% 8% 88% 2% 9% 89% 1% 6% 92% France Germany Poland Spain U.S. France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, is a common symptom No, is not a common symptom Don’t know

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms or Signs of Alzheimer’s Disease: Difficulty Remembering Things in Their Life from the Day Before

2% 7% 92% 2% 7% 91% 7% 13% 80% 3% 10% 87% 1% 5% 94% France Germany Poland Spain U.S. France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, is a common symptom No, is not a common symptom Don’t know

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms or Signs of Alzheimer’s Disease:

Difficulty Managing Daily Tasks

2% 10% 88% 2% 10% 88% 4% 11% 85% 2% 12% 86% 2% 16% 83% France Germany Poland Spain U.S. France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, is a common symptom No, is not a common symptom Don’t know

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms or Signs of Alzheimer’s Disease:

Difficulty Managing and Paying Bills

3% 14% 84% 6% 14% 80% 9% 18% 74% 7% 21% 73% 2% 18% 80% France Germany Poland Spain U.S. France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, is a common symptom No, is not a common symptom Don’t know

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms or Signs of Alzheimer’s Disease: Difficulty Remembering Things in Their Life from Years Before

3% 30% 68% 2% 21% 76% 9% 33% 58% 4% 52% 44% 3% 50% 47% France Germany Poland Spain U.S. France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, is a common symptom No, is not a common symptom Don’t know

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms or Signs of Alzheimer’s Disease:

Anger and Violence

5% 42% 53% 8% 44% 48% 16% 49% 35% 9% 50% 40% 6% 47% 46% France Germany Poland Spain U.S. France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, is a common symptom No, is not a common symptom Don’t know

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms or Signs of Alzheimer’s Disease:

Loss of Appetite

8% 40% 52% 17% 49% 33% 29% 50% 21% 14% 55% 31% 11% 51% 37% France Germany Poland Spain U.S. France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, is a common symptom No, is not a common symptom Don’t know

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms or Signs of Alzheimer’s Disease:

Hallucinations or Hearing Voices

9% 51% 40% 20% 40% 40% 23% 51% 26% 12% 54% 34% 8% 69% 24% France Germany Poland Spain U.S. France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, is a common symptom No, is not a common symptom Don’t know

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Common Symptoms or Signs of Alzheimer’s Disease:

Problems with Pain

10% 65% 25% 16% 60% 24% 29% 50% 21% 15% 64% 22% 9% 68% 23% France Germany Poland Spain U.S. France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, is a common symptom No, is not a common symptom Don’t know

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Beliefs about Whether Alzheimer’s Is a Fatal Disease

• Large numbers do not believe Alzheimer’s is a fatal

disease

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Perception of Whether Alzheimer’s Is a Fatal Disease

35% 61% 53% 42% 55% 34% 62% 33% 50% 44% France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, is a fatal disease No, is not

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Beliefs about Likely Caretakers

• Family members seen as critical to providing care
• Most often expected to be spouse
• Significant minorities in some countries expect care to

come from a paid caretaker, either hired or arranged through the government or a charitable organization.

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Expectations about Who Would Be Their Primary Caretaker if They Had Alzheimer’s Disease

3% 25% 24% 45% 12% 29% 12% 44% 10% 16% 24% 43% 12% 42% 10% 31% 21% 30% 8% 36%

France Germany Poland Spain U.S France Germany Poland Spain U.S. France Germany Poland Spain U.S France Germany Poland Spain U.S

Spouse Child or other relative Other/more than one of these Paid caregiver (hired or arranged through govt or charitable org)

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Expectations about Who Would Be Their Primary Caretaker if They Had Alzheimer’s Disease: Family Members

12% 12% 45% 5% 7% 44% 12% 12% 43% 4% 6% 31% 6% 2% 36% France Germany Poland Spain U.S. France Germany Poland Spain U.S France Germany Poland Spain U.S Spouse Child Another relative

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Expectations about Who Would Be Their Primary Caretaker if They Had Alzheimer’s Disease: Other Caregivers

1% 12% 13% 2% 11% 21% 8% 1% 9% 10% 6% 1% 11% 22% 20% 1% 20% 18% 12% 1%

France Germany Poland Spain U.S. France Germany Poland Spain U.S France Germany Poland Spain U.S France Germany Poland Spain U.S

Friend Hired caregiver Caregiver provided by govt agency or charitable organization More than one of these (family or others)

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Information-Seeking Behavior of Public with High Levels of Personal Experience with Alzheimer’s

• Most who would benefit from information have not

sought it from Alzheimer’s organizations

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Experience Seeking Information on Alzheimer’s Disease from an Alzheimer’s Association

55% 45% 79% 21% 71% 25% 64% 36% 70% 30%

Among those who were among those most involved in financial support/decision-making/day-to- day care of someone with Alzheimer’s France Germany Poland Spain U.S. France Germany Poland Spain U.S Yes, sought information No, have not sought information

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Perceptions about Community’s Inclusion

• f People with Alzheimer’s in Events
• Majorities report their communities support involving

people with Alzheimer’s in family and social events

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Attitudes on Whether the People in Their Community Prefer That People with Alzheimer’s Disease Attend Weddings, Social Club Events or Other Events

12% 80% 24% 73% 10% 80% 9% 85% 7% 89% France Germany Poland Spain U.S. France Germany Poland Spain U.S Most people prefer that people with Alzheimer’s continue to attend Most people prefer that people with Alzheimer’s stop attending

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Attitudes about Government Funding for Alzheimer’s Disease

• Support levels high for both Alzheimer’s research and

care-giving in all five countries

• However, spending more on Alzheimer’s is not a

major voting issue in most countries

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Attitudes on Government Spending on Research on New Treatments for Alzheimer’s Disease

23% 5% 67% 11% 2% 83% 13% 3% 75% 20% 1% 68% 11% 1% 83% France Germany Poland Spain U.S. France Germany Poland Spain U.S France Germany Poland Spain U.S Increased Decreased Kept about the same

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Attitudes on Government Spending on Caring for People with Alzheimer’s Disease

29% 5% 60% 17% 1% 79% 14% 3% 72% 20% 3% 69% 9% 1% 85% France Germany Poland Spain U.S. France Germany Poland Spain U.S France Germany Poland Spain U.S Increased Decreased Kept about the same

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Attitudes on Whether a Candidate Favoring Spending More Money on Alzheimer’s Would Affect Their Vote

67% 5% 26% 44% 3% 47% 57% 2% 34% 56% 7% 33% 72% 1% 25% France Germany Poland Spain U.S. France Germany Poland Spain U.S France Germany Poland Spain U.S Make more likely to vote for this candidate Make less likely to vote for this candidate Wouldn’t make much of a difference

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Concerns about Alzheimer’s Disease

• Alzheimer’s disease ranked as a major concern in

many countries

• Older people more likely to say Alzheimer’s is the

disease they are most afraid of getting

• Substantial variation in concern across countries
• Worries about family even higher than worries about

self

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Attitudes about What Disease They Are Most Afraid of Getting, Top Three Choices

10% 17% 12% 14% 18% 22% 24% 13% 23% 27% 40% 49% 43% 44% 41%

France Germany Poland Spain U.S.

Cancer Alzheimers’s Stroke Cancer Alzheimers’s Stroke Cancer Heart disease Alzheimers’s Cancer Alzheimers’s Stroke Cancer Alzheimers’s Heart disease

Note: Respondents were offered a choice from a list of seven diseases, including Alzheimer’s disease, cancer, stroke, heart disease, diabetes, influenza, and depression.

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Proportion of Public Reporting Alzheimer’s as the Disease They Are Most Afraid of Getting

32% 35% 20% 30% 47% 22% 25% 14% 19% 18% 15% 13% 6% 22% 21% 22% 24% 12% 23% 27%

France Germany Poland Spain U.S.

Total 18-34 35-59 60+ Total 18-34 35-59 60+ Total 18-34 35-59 60+ Total 18-34 35-59 60+ Total 18-34 35-59 60+

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Worries about Themselves or a Family Member Getting Alzheimer’s Disease

43% 57% 5% 95% 55% 43% 48% 49% 21% 77%

France Germany Poland Spain U.S. France Germany Poland Spain U.S

Very/somewhat worried Not too/not at all worried

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public Worries about Getting Alzheimer’s Disease

63% 30% 7% 20% 28% 52% 74% 18% 4% 68% 21% 9% 44% 40% 16% France Germany Poland Spain U.S. France Germany Poland Spain U.S France Germany Poland Spain U.S Very worried Somewhat worried Not too/not at all worried

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Harvard School of Public Health/Alzheimer Europe Five-Country Alzheimer’s Disease Survey, February, 2011

Public’s Worries about Someone in Their Family Getting Alzheimer’s Disease

48% 33% 18% 6% 16% 78% 59% 27% 12% 55% 25% 20% 22% 43% 33% France Germany Poland Spain U.S. France Germany Poland Spain U.S France Germany Poland Spain U.S Very worried Somewhat worried Not too/not at all worried