Older adults' feedback now included in classic H70 study


"70 is the new 50" and "Culture can protect against Alzheimer's". Over its nearly 50-year existence, the Gothenburg H70 population-based study of aging and it's diseases has prompted many headlines. Now the scientists also know what the participants think of this extensive scrutiny.

“70 is the new 50,” “Culture can protect against Alzheimer’s,” and “Obesity in older people boosts dementia risk.” For almost half a century, headlines like this have abounded in the more than 700 scientific articles and 60 theses published by the H70 study. Now the scientists have also begun to take an interest in how their research subjects perceive these comprehensive investigations of aging and its diseases.

“Although the results are important for society at large and for our knowledge of various diseases, the participants’ experience also matters,” says Ingmar Skoog, professor of psychiatry at Sahlgrenska Academy and director of the University of Gothenburg’s Centre for Ageing and Health (AgeCap). Skoog also leads the H70 studies.

“If the research is to help improve older people’s health and well-being, we need to know how the research participants feel about taking part in the examinations our studies are based on,” he says.

Synneve Dahlin-Ivanoff, professor of occupational therapy, is the first author of the study, recently published in the BMC Geriatrics journal. A total of 38 representative H70 participants, 19 women and 19 men, were assigned to focus groups.

“We know relatively little about how older people experience the various examinations included in longitudinal population-based studies. That’s why we did this study. Despite the time-consuming and sometimes challenging examinations, the participants think it’s well worth the effort. Our study shows that they’d join in a new study if they had the opportunity,” Dahlin-Ivanoff says.

For one’s own and others’ benefit

“There are several reasons. Partly, they do it for their own sake. They get individual checkups, which seems especially important given that many think that, as older people, they lack the access to health care they should have. But they also help out for other people’s sake and because they want to contribute to the research, thereby improving life for older people. In general, the participants have great confidence in the researchers and the research.”

The examinations are perceived as both exciting and challenging. Some, such as cerebrospinal fluid tests and magnetic resonance imaging (MRI) scans, are considered more disagreeable than others. First, the patients have to decide whether they want the examinations done, which very much depends on what they have heard about the test from others.

In the next stage, they must decide whether they want to be given the results and, for example, be told about early signs of Alzheimer’s disease. The results can help them when they have to make important decisions about how to live their lives, depending on whether the tests show signs of any diseases or not.

Some questions are felt to be more embarrassing than others. Examples are those about private topics like sexuality, or whether the respondents can cook or get dressed. Nonetheless, they trust that the researchers are asking relevant questions.

“Depending on who’s asking the questions, the answers differ and so, too, do the results, especially when it comes to slightly more sensitive questions. Then the participants need to have confidence in the person asking them,” Dahlin-Ivanoff says.

Aging compared over time

“To date, the participants have mostly contributed as research subjects. In this study, they’ve played a more active part by getting the chance to share their experience, which can then be used to improve the research methods.

“For the H70 studies to be of high quality, we need to know how the participants perceive the examinations, so that we can ask the right questions, provide the right information, and make sure the participants understand the questions.”

In the fall of 2019, a follow-up to the H70 study has begun with participants who have turned 75, who are to be examined this year and in 2020. The results are expected to be available within a couple of years.

Ingmar Skoog thinks the H70 studies have taught us a great deal about how aging has changed over time.

“They give us unique scope for comparing the health of septuagenarians born in the early 20th century with people of the same age born more than four decades later. That’s why we can say that today’s 70-year-olds are much healthier than 70-year-olds were half a century ago — that ‘70 is the new 50.’ We’ve also learned a lot about which dementia risk factors there are, and about early signs of Alzheimer’s.”

Title: Was it worth it? Older adults’ experiences of participating in a population-based cohort study — a focus group study

Facts about H70:

• One of Sweden’s oldest population-based studies, started in 1971 and conducted in Gothenburg, in which various birth cohorts of 70-year-olds are examined and followed up continuously.

• The first cohort of 973 people were examined on 16 occasions, up to age 102, when the group comprised nine people.

• A further five 70-year old cohorts and one 75-year-old cohort have been examined, 1,203 septuagenarians born in 1944 being those included most recently.

Aims of H70:

• Studying normal physical, mental, and social aging, and developing reference values (benchmarks) for older people.

• Surveying the prevalence of, and also risk factors and indicators for, disease.

• Surveying the need for social and medical inputs for older people.

• Studying the scope for preventive aging-related measures and their effects on individuals and society; using a multidisciplinary approach to achieve broad clarification of aging and its implications for individuals and society.

Images: Picture from a meeting with H70 participants in early 2019 (photo: Johan Wingborg), and headshots of Synneve Dahlin-Ivanoff (photo: Magnus Gotander) and Ingmar Skoog (photo: Johan Wingborg)