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Attitudes and participation of the elderly in population surveys: data from a longitudinal study on aging and dementia in Stockholm
Stockholm Gerontology Research Center, Division of Geriatric Medicine, Karolinska Institute, Stockholm.ORCID iD: 0000-0001-5800-6454
Stockholm Gerontology Research Center, Division of Geriatric Medicine, Karolinska Institute, Stockholm,.
NH & MRC Social Psychiatry Research Unit, The Australian National University, Canberra, Australia.
Stockholm Gerontology Research Center, Division of Geriatric Medicine, Karolinska Institute, Stockholm.
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1998 (English)In: Journal of Clinical Epidemiology, ISSN 0895-4356, E-ISSN 1878-5921, Vol. 51, no 3, 181-187 p.Article in journal (Refereed) Published
Abstract [en]

The aim of this article was to assess the attitudes of older adults (age >74 years) toward research participation. A questionnaire was mailed to the study population (n = 1197) which included people who had participated in a longitudinal study once, twice, three times, or more. The participants showed a positive attitude in general as 79% saw an advantage of participation and 72% did not report any negative reaction. Older elderly with impaired cognitive functioning and lower education showed the least positive attitude, reporting the first contact and the cognitive testing as the most stressful situations. The group who had participated more than once was the most positive, but more often refused some parts of the clinical examination. We conclude that: (1) more attention is necessary to the initial contact; (2) reduction of stressful or tiring examinations is recommended; and (3) complete information about the research, including the right to refuse individual parts of the study, must be given. Such procedures will improve both the quality and the ethics of the research.

Place, publisher, year, edition, pages
Elsevier, 1998. Vol. 51, no 3, 181-187 p.
Keyword [en]
elderly, participation, attitude, cognitive impairment, population survey, longitudinal study
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:rkh:diva-618DOI: 10.1016/S0895-4356(97)00242-4PubMedID: 9495683OAI: oai:DiVA.org:rkh-618DiVA: diva2:610601
Available from: 2013-03-12 Created: 2013-03-12 Last updated: 2017-12-06Bibliographically approved
In thesis
1. Being old in our society: health, functional status, and effects of research
Open this publication in new window or tab >>Being old in our society: health, functional status, and effects of research
2000 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis concerns health and functional status in old age, as well as older adults' attitudes towards research participation. Five studies were performed using data from the Kungsholmen Project, a population-based study on ageing and dementia ongoing in Stockholm since 1987.

Occurrence of dementia. Both prevalence and incidence of dementia were investigated. In the 75-79 age group the incidence rates for dementia were 19.6 for women and 12.4 for men per 1,000 person-years, whereas the corresponding figures were 86.7 and 15.0 among 90+ year old subjects. A prevalence study with an enlarged sample of nonagenarians showed that the probability of having dementia after the age of 75 increased by 10% each year and 90% every 5 years. AD contributed to 76. 5% and VaD to 17.9% of the prevalent cases.

Health and functional status. Higher morbidity prevalence in women than in men was detected only after the age of 85. 90+ year old women compared to men had an OR=2.2 (95% CI 1.1-4-3) for disability after adjustment for age, education, and number of diseases. Functionally independent men in the youngest age group had a higher risk of death than women (OR=0.4; 95% CI 0.3-0.7), whereas no gender difference was found among disabled subjects. Incidence of long term disability in women was higher than in men only in the 90+ years old subjects, although the difference was not statistically significant after adjustment.

Effects of research. In a postal questionnaire, 79% of the subjects reported advantages in research participation. Older elderly with impaired cognitive functioning and lower education showed the least positive attitude. The first contact and the cognitive testing were judged as the most stressful situations. Community-based longitudinal surveys also appear to have a social function, thus stressing ethical issues regarding the termination of contact when studies are completed.

Conclusions. The dementia incidence increases with age, even in the most advanced ages. This increase is especially evident among women, leading to an increased risk of dementia in the male gender. A large proportion of nonagenarians were functionally independent (73%) despite their advanced age, and 19% had no diseases at all. The gender distribution of morbidity, mortality and disability was modified by age. 90+ year old women were more disabled than men, partially due to the excess of dementia and other chronic diseases. We hypothesise that more women may be at higher risk of developing severe disability than men in the advanced ages due to a longer survival of women with slight disability in earlier ages.

Finally, this thesis provides empirical data concerning the impact of longitudinal research on participants that may help researchers in lowering the refusal rate in epidemiological studies, and might assist ethics committees in making their judgements.

Place, publisher, year, edition, pages
Stockholm: Norstedts Förlag, 2000. 51 p.
Keyword
ageing, attitude, dementia, functional status, morbidity, participation, population survey, nonagenarians
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:rkh:diva-561 (URN)91-628-4189-0 (ISBN)
Public defence
2000-05-25, Finskt Äldrecentrum, Sabbatsbergsområdet, Olivecronas väg 14, 00:00
Available from: 2014-09-17 Created: 2013-03-01 Last updated: 2016-04-19Bibliographically approved

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