Fear of Dementia in the General Population: Findings from the German Socio-Economic Panel (GSOEP)

Abstract

The aim was to identify the determinants of fear of dementia in the general population. Data were taken from the innovation sample (n = 1,498; year 2012) of a nationally representative, longitudinal study. Summarizing, 28.8% reported no fear of dementia, 34.3% reported a little fear of dementia, 21.2% reported some fear of dementia, and 15.7% reported severe fear of dementia. Regressions showed that increased fear of dementia was associated with increased age, being female, an increased perceived own risk for developing dementia, an increased agreement that a diagnosis of dementia would ruin one’s life, and a decreased perception that memory deterioration is preventable. Addressing modifiable factors may assist in reducing fear of dementia.

Keywords

Dementia dementia worry fear of dementia German Socio-Economic Panel

INTRODUCTION

Currently, there are about 1.7 million individuals with dementia in Germany. It is projected that this number will increase to about 3 million in 2050 [1]. While only about 1% of the individuals aged 65 to 69 suffers from dementia, about 40% of the individuals aged 90 and over suffers from it [1].

Dementia is a syndrome characterized by progressive cognitive decline, frequently caused by Alzheimer’s disease. In the course of this illness, performing activities of daily living become increasingly difficult for affected individuals. Therefore, they need supervision and a considerable amount of care. Thus far, a variety of determinants (e.g., genetic or lifestyle factors) of dementia have been identified. However, there is still uncertainty about the causes of dementia [2]. Furthermore, in the German general population about 55% of the individuals believe in the fact that dementia could be prevented, for example by brain/memory training, mental activities, or by an active lifestyle. To put it the other way around: 45% did not believe in the fact that dementia could be prevented [3]. Thus, 1) due to the high prevalence rate among the oldest old, 2) the difficulties it can cause, and 3) the perceived (non-)preventability of dementia in the population, it appears plausible that individuals develop a fear of dementia. Actually, recent surveys in industrialized countries found that 30 to 60% worried about developing Alzheimer’s disease or other forms of dementia [4 –7]. Fear of dementia can be defined “as an emotional response to the perceived threat of developing dementia” [8]. It can include elements of fear of aging and fear of health deteriorations [8].

Knowledge about the determinants of fear of dementia is of great importance because this fear can have deleterious effects on psychological well-being [9]. Furthermore, greater dementia-related anxiety is associated with suicidal ideation [10]. In addition, fear of dementia may negatively impact the awareness of symptoms and therefore may hamper early diagnosis of dementia [5]. As pointed out by Cantegreil-Kallen and Pin [5], early diagnosis can help to benefit from existing treatment options (i.e., starting early treatment) which may help to maintain their current cognitive abilities for a while.

Previous studies focusing on the determinants of fear of dementia mainly rely on small samples (for example: [4, 11]) which are not generalizable to the general population. Studies based on nationally representative samples (e.g., from France [5]) are almost entirely missing. As determinants of fear of dementia, most of the previous studies focused on sociodemographic factors as well as caring for someone with dementia and the presence of close friends or relatives with dementia [2 , 9]. To the best of our knowledge, there is a lack of studies which focused on other dementia-related factors (i.e., perceived modifiability of memory deterioration: perceived own risk for developing dementia; perceived consequences of dementia diagnosis). Therefore, the aim of this study was to identify the determinants of fear of dementia based on data from a nationally representative sample—with a special emphasis on the mentioned dementia-related determinants.

METHODS

Sample

Data were derived from the German Socio-Economic Panel (GSOEP), located at the German Institute for Economic Research, DIW Berlin (beginning in 1984). The GSOEP is a population-based longitudinal study of adults aged 17 years and over residing in Germany. Annually, about 11,000 households and over 20,000 individuals took part in the interviews. Topics include, for example, subjective well-being, labor force participation, or health. It has been shown that responses rates [12] are very high and survey attrition is low [13]. Further details with regard to the sampling frame and survey design were reported elsewhere [14].

Fear of dementia was only assessed in the innovation sample from the GSOEP study (GSOEP-IS) in the year 2012. Like the GSOEP, the GSOEP-IS is a representative sample of the general adult population living in private households [15]. The GSOEP-IS which takes place since 2011 includes core questions and also incorporates innovative content exclusively designed by the users. The tools are selected through a competitive referred process with the aim to achieve important and high-quality assessments.

Concentrating on fear of dementia, we therefore used data from the innovation sample (GSOEP-IS) taking place in the year 2012, with n = 1,498 individuals in the analytic sample.

In the GSOEP, informed consent was obtained from all participants. An ethical approval was not obtained because criteria for the need of an ethical statement were not achieved (risk for the respondents, lack of information about the aims of the study, examination of patients). However, the German Council of Science and Humanities (Wissenschaftsrat) evaluated the GSOEP and approved it.

Dependent variables

Individuals who were not diagnosed with dementia from a doctor, were asked: How concerned are you about getting a form of dementia such as Alzheimer’s one day? [1 = Not at all; 2 = a little; 3 = somewhat; 4 = severely?]. This is a common way to assess fear of dementia and was also used in similar studies [5, 16].

Independent variables

Regarding socioeconomic factors, we included age, gender, marital status (married, living together with spouse; other (married, living separated from spouse; widowed; single; divorced)), employment status (employed (full-time employed; regular part-time employed; vocational training; marginally employed; near retirement, zero working hours; military service; community service; sheltered workshop); not employed), as well as education (according to the International Standard Classification of Education (ISCED-97) [17]; low education (ISCED 0-2), medium education (ISCED 3-4), and high education (ISCED 5-6)) in the regression model.

With regard to health-related variables, we included self-rated health (from 1 = very good to 5 = very bad) and chronic conditions (count score of chronic illnesses: diabetes; asthma; cardiac disease (also: cardiac insufficiency, weak heart); cancer; stroke; migraine; high blood pressure; depressive disorder; joint diseases (including arthritis/rheumatism); chronic backache; sleep disorder; other illness) in the regression model.

Furthermore, dementia-related questions were included in the regression model:

How do you estimate your risk of getting a form of dementia such as Alzheimer’s one day? (1 = very low, 2 = low, 3 = average, 4 = increased or 5 = high)

Furthermore, individuals were asked to what extent they agree with the following statements (from 1 = does not apply at all to 7 = fully applies). The exact wording for these two questions were:

There is quite a lot of what I can do by myself to keep my mind from reduction.

The diagnosis of dementia such as Alzheimer’s would ruin my life.

Statistical analysis

First, sample characteristics for the analytical sample are displayed. Subsequently, determinants of fear of dementia were analyzed using multiple linear regression analysis. In a robustness check, multiple linear regressions were replaced by ordered probit regressions. The level of significance was set at α= 0.05. Statistical analysis was conducted using Stata 16.0 (Stata Corp., College Station, TX).

RESULTS

Sample characteristics

For the analytical sample, descriptive statistics were provided in Table 1. 52.5% of the individuals were female and most individuals (60.1%) had a medium education. In total, 28.8% reported no fear of dementia, 34.3% reported a little fear of dementia, 21.2% reported some fear of dementia, and 15.7% reported severe fear of dementia.

Table 1

Sample characteristics for analytical sample (GSOEP-IS, 2012; n = 1,498)

Variables	Mean (SD)/N (%)
Age: Mean (SD)	50.9 (17.3)
Gender: N (%)
Male	711 (47.5%)
Female	787 (52.5%)
Education: N (%)
Low education	239 (16.0%)
Medium education	901 (60.1%)
High education	358 (23.9%)
Marital status: N (%)
Married, living together with spouse	904 (60.4%)
Other (married, not living together with spouse; divorced; widowed; single)	594 (39.6%)
Employment status: N (%)
Employed (full-time employed; regular part-time employed; vocational training; marginally employed; near retirement, zero working hours; military service; community service; sheltered workshop)	857 (57.2%)
Not employed	641 (42.8%)
Self-rated health (from 1 = “very good” to 5 = “very bad”): Mean (SD)	2.5 (1.0)
Sum of chronic diseases: Mean (SD)	1.0 (1.2)
Perceived own risk for developing dementia (from 1 = very low to 5 = high): Mean (SD)	2.4 (0.9)
Agreement that a diagnosis of dementia would ruin his/her life (from 1 = does not apply to 7 = fully applies): Mean (SD)	5.2 (1.9)
Perception that memory deterioration is preventable (from 1 = does not apply to 7 = fully applies): Mean (SD)	5.8 (1.5)
Fear of dementia: Mean (SD)	2.2 (1.0)
Fear of dementia: N (%)
Not at all	432 (28.8%)
A little	513 (34.3%)
Somewhat	317 (21.2%)
Severely	236 (15.7%)

Main regression analysis

Findings of multiple linear regressions are displayed in Table 2. R² equaled 0.29. Using variance inflation factors, it was tested whether multicollinearity is an issue in our study. However, highest VIF was 2.09 (mean VIF was 1.41). Therefore, we concluded that multicollinearity was not present in our study.

Table 2

Determinants of fear of dementia (from 1 = not at all to 4 = severely). Results of multiple linear regression analysis

Independent variables	Fear of dementia
Age	0.01^***
	(0.00)
Gender: Female (Ref.: Male)	0.19^***
	(0.05)
Employment status: Not employed (Ref.: Employed)	–0.03
	(0.05)
Educational level: – Medium education (Ref.: low education)	–0.03
	(0.07)
– High education	–0.13
	(0.08)
Marital status: Married, living together with spouse (Ref.: Other)	–0.06
	(0.05)
Self-rated health (from 1 = “very good” to 5 = “very bad”)	–0.02
	(0.03)
Count score of chronic diseases	0.03
	(0.03)
Agreement that a diagnosis of dementia would ruin his/her life (from 1 = does not apply to 7 = fully applies)	0.06^***
	(0.01)
Perceived own risk for developing dementia (from 1 = very low to 5 = high)	0.54^***
	(0.02)
Perception that memory deterioration is preventable (from 1 = does not apply to 7 = fully applies)	–0.03^*
	(0.02)
Constant	0.54^***
	(0.16)
Observations	1,498
R²	0.29

Unstandardized beta-coefficients are reported; robust standard errors in parentheses; ^*** p < 0.001, ^** p < 0.01, ^* p < 0.05, ⁺ p < 0.10.

Multiple linear regressions showed that increased fear of dementia was associated with increased age (β= 0.01, p < 0.001), being female (β= 0.19, p < 0.001), an increased perceived own risk for developing dementia (β= 0.54, p < 0.001), an increased agreement that a diagnosis of dementia would ruin his or her life (β= 0.06, p < 0.001), and a decreased perception that memory deterioration is preventable (β= –0.03, p < 0.05).

In a robustness check, multiple linear regressions were replaced by ordered probit regressions (results not shown, but available upon request). However, in terms of significance, findings remained the same.

DISCUSSION

The purpose of this study was to identify the determinants of fear of dementia. Based on data from a nationally representative sample from Germany, our study contributes to the current knowledge on the determinants of fear of dementia. In our view, the particular benefit of our study is that it identifies a link between dementia-related questions (perception of own risk for developing dementia; modifiability of memory deterioration consequences of dementia diagnosis for own life) and the fear of dementia. Furthermore, nationally representative data were taken from the GSOEP-IS study.

In our study, increased fear of dementia was associated with being female and higher age. This is well in line with the findings of previous studies [5, 11]. We assume that the link between being female and increased fear of dementia can be explained by the higher general tendency to worry in women [18]. Another explanation might be that women are more often affected by dementia due to the higher life expectancy. Furthermore, because it is well known that the risk for developing dementia increases with age, the link between higher age and increased fear of dementia appears to be plausible. This is in accordance with the risk-as-feelings hypothesis of Loewenstein et al. [19]. They proposed that factors such as immediacy can contribute to risk assessment [19]. Therefore, it is plausible that higher age is positively associated with fear of dementia (since higher age is associated with dementia risk).

With regard to dementia-related factors [1) modifiability of memory deterioration; 2) own risk for developing dementia; 3) consequences of dementia diagnosis], regression analysis additionally revealed that increased fear of dementia was associated with an increased perceived own risk for developing dementia, an increased agreement that a diagnosis of dementia would ruin his or her life, and a decreased perception that memory deterioration is preventable.

In our study, when individuals think that they cannot prevent memory deterioration fear of dementia was high. A possible reason may be that the belief that memory deterioration is not preventable is associated with a low internal locus of control. A low internal locus of control reflects the belief that life’s outcomes (e.g., cognitive abilities) are not based on own efforts (such as cognitive activities) [20]. Analogously, in the case of cancer, a low internal locus of control was associated with an increased fear of cancer [21]. Therefore, we assume that a similar mechanism (locus of control and fear of dementia) may also take place in dementia.

The link between risk perception and fear of dementia which was found in our study also appears to be plausible. For various other diseases, it has been shown that there is a clear link between risk perceptions and fear [22 –24]. Thus, it appears plausible that these factors are correlated in our study referring to dementia (for example, in our study, the pairwise correlation between risk perception and fear of dementia was r = 0.50, p < 0.001)

Aside from risk perception, Drottz-Sjöberg [25] also emphasized the importance of the consequences if an event takes place. In our study, it is conceivable that individuals reported an increased fear of dementia, when a dementia diagnosis has perceived negative consequences for their own life. For example, in cancer research, it has been shown that fear of consequences and fear of cancer recurrence are related [26, 27].

This study contributes to the current knowledge about the determinants of fear of dementia. Various determinants (including dementia-related variables) were included in our regression model. A population-based sample was used (GSOEP-IS). It has been reported that response rates are very high in this study [12]. The tool used has a high face validity and was also used in previous studies [5, 16]. However, future studies with more sophisticated scales such as the “Fear of Alzheimer’s Disease Scale” or the “Fear of Dementia Scale” [28, 29] are required to validate our findings. More precisely, we think that future studies based on these multiple-item, psychometrically sound (i.e., reliable and valid) measures would enhance our current findings. Given data availability, future studies should also include other independent variables such as the family history of dementia, family support, apolipoprotein E genotype or whether the individual has experience caring for individuals with dementia. Furthermore, this is a cross-sectional study, with the widely acknowledged limitations (for example, it is difficult to determine causal relationships). Future longitudinal studies are required to clarify whether changes in the independent variables are associated with changes in fear of dementia. Moreover, it is worth noting that data assessment took place in the year 2012. Since fear of dementia may have changed in the last years, future studies are required to replicate our findings.

Conclusion and future research

In our study, several determinants of fear of dementia have been identified. Addressing modifiable factors may assist in reducing fear of dementia. This is important since fear of dementia is in turn associated with various adverse outcomes. For example, fear of dementia is associated with subsequent increased depressive symptoms or decreased satisfaction with life [9].

DISCLOSURE STATEMENT

Authors’ disclosures available online (https://www.j-alz.com/manuscript-disclosures/20-0106r1).

Ethical approval

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