International Journal of Alzheimer's Disease
Volume 2012 (2012), Article ID 903645, 9 pages
http://dx.doi.org/10.1155/2012/903645
Research Article
The Impact of Experience with a Family Member with Alzheimer’s Disease on Views about the Disease across Five Countries
Robert J. Blendon,1 John M. Benson,1 Elizabeth M. Wikler,2 Kathleen J. Weldon,1 Jean Georges,3 Matthew Baumgart,4 and Beth A. Kallmyer5
1Department of Health Policy and Management, Harvard School of Public Health, Boston, MA 02115, USA
2Program in Health Policy, Harvard University, Cambridge, MA 02138, USA
3Alzheimer Europe, 145 Route de Thionville, 2611 Luxembourg, Luxembourg
4Government Affairs, Alzheimer’s Association, Washington, DC 20005, USA
5Constituent Services, Alzheimer’s Association, Chicago, IL 60613, USA
Received 27 April 2012; Accepted 13 July 2012
Academic Editor: Ricardo Nitrini
Copyright © 2012 Robert J. Blendon et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Abstract
The objective of this paper is to understand how the public’s beliefs in five countries may change as more families have direct experience with Alzheimer’s disease. The data are derived from a questionnaire survey conducted by telephone (landline and cell) with 2678 randomly selected adults in France, Germany, Poland, Spain, and the United States. The paper analyzes the beliefs and anticipated behavior of those in each country who report having had a family member with Alzheimer’s disease versus those who do not. In one or more countries, differences were found between the two groups in their concern about getting Alzheimer’s disease, knowledge that the disease is fatal, awareness of certain symptoms, and support for increased public spending. The results suggest that as more people have experience with a family member who has Alzheimer’s disease, the public will generally become more concerned about Alzheimer’s disease and more likely to recognize that Alzheimer’s disease is a fatal disease. The findings suggest that other beliefs may only be affected if there are future major educational campaigns about the disease. The publics in individual countries, with differing cultures and health systems, are likely to respond in different ways as more families have experience with Alzheimer’s disease.
1. Introduction
Prevalence rates for Alzheimer’s disease in Europe and the United States are estimated as some of the highest in the world, growing rapidly with the aging demographic shift [1–4]. Alzheimer’s disease is one of the leading causes of death in these countries, and the costs imposed by it are substantial in terms of caregiving demands, lost productivity, and strains on health care systems [5]. Among scientists, health professionals, and policymakers, interest in the disease has grown in recent years due to the growing demands for care by patients and a number of important research findings, including the identification of additional genetic risk factors and the release of new diagnostic guidelines [6, 7]. This complements other recent scientific developments in potential drug therapies, diagnostic procedures [8], and other research on potential risk factors, such as dietary choices, chronic disease, and medication usage [9, 10].
Single-country surveys have looked at public attitudes and beliefs about Alzheimer’s disease [11, 12]. However, little is known about how levels of awareness and beliefs vary across Europe and the United States, with their different cultures and health systems. To fill this information void, Alzheimer Europe and the Harvard School of Public Health conducted a five-country international poll to assess public understanding about Alzheimer’s disease [13, 14]. The poll involved random samples of the public in France, Germany, Poland, Spain, and the US. It is important to look at attitudes and beliefs across countries because results from a single country may not be generalizable to other countries that have different values and experiences with Alzheimer’s disease.
The multicountry poll focused primarily on eight broad issues. These included (1) the relative public concern about the disease when compared to other serious national health problems, (2) the public’s willingness to see a physician to obtain a diagnosis if they were exhibiting symptoms possibly associated with the disease, (3) public beliefs about whether an effective treatment to slow the progression of the disease was currently available, (4) public beliefs about whether a reliable test was currently available that will determine if a person who is suffering from some confusion and memory loss is in the early stages of Alzheimer’s disease, (5) the public’s interest in future early diagnostic testing for the disease, should such a test become available, (6) public beliefs about whether Alzheimer’s disease is a fatal disease, (7) the level of public awareness of common symptoms that were associated with the disease, and (8) public attitudes about government spending on Alzheimer’s research and care.
The focus of this paper is an analysis of the beliefs and anticipated behavior of those in each country who report that they have had a family member with Alzheimer’s disease versus those who say they have not. If the experience of having a family member with Alzheimer’s disease affects beliefs and behaviors, overall public attitudes and understanding of the disease might be expected to change as the number of people with experience grows as a result of anticipated demographic shifts. Therefore, understanding the differences in perspective between those who have had a family member with the disease and those who have not is important in predicting possible changes in public beliefs and behaviors in each country. We present the major findings of the five-country poll in this comparative context and suggest implications of the possible changes in public response in the years ahead.
2. Methods
2.1. Source of Data
The data are derived from a February 2011 survey by Alzheimer Europe and the Harvard School of Public Health with nationally representative random samples of adults age 18 and older in France, Germany, Poland, Spain, and the United States [13].
2.2. Study Design
In each of the five countries, interviews were conducted of both landline telephone numbers using random-digit dialing and cell phone numbers using a list of random cell phone numbers across the country among adults age 18 and older. The average length of interview was 12 minutes. Table 1 shows interview dates, samples sizes, and margins of error at the 95% confidence level for each country.
Table 1
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Interview dates Total interviews Margin of error (percentage points)
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France February 7–14, 2011 529 ±4.3
Germany February 7–19, 2011 499 ±4.4
Poland February 7–10, 2011 509 ±4.3
Spain February 8–13, 2011 502 ±4.4
US February 7–27, 2011 639 ±3.9
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The fieldwork was conducted for Alzheimer Europe and the Harvard School of Public Health by TNS, an independent research company based in London, with branches in each of the five countries surveyed. TNS is one of the largest survey research companies internationally and also currently conducts the Eurobarometer surveys of adults in European Union countries for the European Commission.
The interviews were conducted in the language of each country. In the US, interviews were conducted in both English and Spanish.
2.3. Poststratification Weighting
Nonresponse in telephone surveys produces some known biases in survey-derived estimates because participation tends to vary for different subgroups of the population. To compensate for these known biases, the sample data are weighted to reflect the actual composition of the adult population in the surveyed countries, calculated on the basis of census data from each country, according to race/ethnicity (US only), age, gender, and region. The sample data are also weighted by telephone status (landline, cell). Other techniques, such as callbacks staggered over times of days and days of weeks and systematic respondent selection within households, are used to help ensure that the sample in each country is representative.
The data presented in this paper are weighted percentages. After weighting, the sample for each country reflects the demographic composition of the adult population of that country as presented in its census. The results for each country are generalizable to the adult population of that country.
2.4. Statistical Analysis
Data analysis comprises descriptive statistics to ascertain public attitudes on each of the measures. Percentages and confidence intervals (at the 95% confidence level) are shown for the responses to each survey item of those who report that they have had a family member with Alzheimer’s disease versus those who say they have not in each country.
The survey found that the public’s reported experience with a family member with Alzheimer’s disease varied substantially across the five countries. The proportion ranged from 19% in Poland to 30% in France, 33% in Spain, 34% in Germany, and 42% in the US.
Table 2 presents comparative data for those with and without experience for the first six issues discussed above. Table 3 shows comparative data between these two groups on public perceptions of common symptoms associated with Alzheimer’s disease. Table 4 presents comparative data between these two groups on attitudes about government spending related to Alzheimer’s disease. We highlight only those differences within each country that are statistically significant (