Development of a Multidimensional Measure to Examine Fear of Dementia

Abstract

Persons with and without a family history of dementia report concerns for developing this syndrome; yet, less is known about the specific aspects of dementia that are feared. The Fear of Dementia (FOD) scale was created to assess these concerns. This study examined the psychometric properties of the FOD scale using a sample of middle-aged and older adults (N = 734). We then explored the factor structure of the scale 2 years later using a smaller sample from the first study (N = 226). Three factors emerged, highlighting several main areas of concern: Burden and Loss, Quality of Life, and Perceived Social and Cognitive Loss. Preliminary data suggest that the FOD scale is a reliable and valid instrument for assessing the multidimensional nature of the concern about developing dementia. Attention to what specifically is feared may help further our understanding of health behaviors, coping, and targeted supports.

Keywords

Alzheimer’s disease neurocognitive disorder health anxiety burden

Introduction

With the estimated five million individuals living with Alzheimer’s disease (AD) in the United States and projections indicating a growing incidence in the coming years (Alzheimer’s Association, 2016), AD has been identified as a national health priority (National Institutes of Health, 2010). Efforts are under way to raise public awareness about AD as well as other forms of dementia (e.g., Lewy body, frontotemporal, vascular). With intentions of improving information available to the public, professionals, and caregivers (see Devlin, MacAskill, & Stead, 2007), messages are available about novel pharmaceutical interventions under investigation, various symptoms, risks, and protective factors. The current lack of a cure for these progressive neurodegenerative diseases is perhaps one of the most discouraging messages (Daviglus et al., 2010) persons receive, wherein the prospect of irreversible decline and the loss of self over time is daunting. Indeed, AD is identified as a very concerning disease (Harvard School of Public Health, 2011; MetLife Foundation, 2011).

One question receiving less attention in the literature is how one’s level of concern relates to knowledge about dementia, current health practices, and consumer behavior (e.g., purchasing long-term care insurance). In this context, concerns about developing dementia are quite salient in that such concerns have far-reaching implications for early diagnosis and treatment, public policy, health promotion, and health-care practices.

Subjective concerns about declining memory fuel an individual’s fear that he or she has or will have dementia (see Cutler & Hodgson, 1996, 2001; Werner, 2002). Cutler and Hodgson (1996) coined the term anticipatory dementia, referring to the fear that subjective awareness of change in memory is a warning sign of impending cognitive impairment. People grow concerned about their risk for developing dementia based on their personal analysis of memory functioning. Importantly, this change may be due to several factors, including a progressive disease, delirium, or normal cognitive aging (see Attix & Welsh-Bohmer, 2006; Lezak, Howieson, Bigler, & Tranel, 2012).

Regardless of family history of dementia and associated perceived risk, people report concerns about cognitive and functional loss due to a neurocognitive disorder, although those with a family history may report greater concern (see Cutler & Hodgson, 1996, 2001). Believing that one is currently experiencing signs of cognitive loss was also related to increased concern about developing dementia (Cutler & Hodgson, 1996; Werner, 2002). Werner (2002) noted few adult participants in their study indicated a lack of concern about dementia, with over 50% reportedly being very concerned.

Additional factors have also been shown to predict level of fear, such as personal worry about memory functioning, gender, educational attainment, and marital status (Cutler & Hodgson, 2001). Women were more likely to report higher levels of concern for developing AD, as well as those who were married (Cutler & Hodgson, 2001; Hodgson & Cutler, 2004; Hodgson, Cutler, & Livingston, 1999). Findings on the relationship of knowledge about AD and level of concern are mixed. In a few studies, as the level of AD knowledge increased, so too did the level of concern (Cutler & Hodgson, 2001; Hodgson & Cutler, 2004), while another study found no such relationship (Werner, 2002).

Older adults hold various perspectives about dementia, but most likely negative representations. Interestingly, several individuals declined to participate in one study on dementia worries, citing discomfort with discussing the topic (Corner & Bond, 2004). Misunderstanding may inadvertently contribute to fear of dementia, such as not knowing how age-associated decline may differ from early dementia (Corner & Bond, 2004). To help alleviate concerns, these authors hypothesized that individuals attempted to psychologically distance themselves from the disease by “rationalizing that people with characteristics different to their own were more likely to develop dementia” (p. 148). Finally, many participants indicated that they would not contact a health professional if they were concerned about their memory functioning, citing a belief that little could be done to avert the disease process (Corner & Bond, 2004).

Should signs of dementia occur, to whom one turns can be vital in the road to a dementia diagnosis. In some cases, turning to a relative may be an initial safer option than seeking out a health-care professional. The worry produced by potential symptoms of AD is enough to cause some individuals to engage in symptom-seeking behaviors (Hodgson et al., 1999). Persons concerned about developing the disease, especially those with a family history, may repeatedly search for symptoms, interpret any cognitive changes as signs of the disease, or seek out external validation of their concerns (Hodgson et al., 1999). While anyone concerned about their risk may engage in such behavior, those without a family history of the disease engaged in fewer daily symptom-seeking behaviors (Hodgson et al., 1999). In seeking validation for concern from others, Hodgson et al., (1999) reported that family, friends, and professionals were all likely sources, with relatives most likely being the first contact. Among a sample of middle-aged adults, those indicating that they were very or somewhat concerned about personally developing AD largely sought out informal support networks to voice their concerns (Hodgson & Cutler, 2004). Within the informal networks, spouses, siblings, and children were the most likely contacts, while comparatively, fewer individuals turned to other informal sources such as friends and coworkers. Last, compared with relatives and the other informal sources, seeking help from a formal source, such as a professional, was least endorsed; yet, a sizeable percentage of persons still did so. Among formal sources, a physician was most often consulted (Hodgson & Cutler, 2004). Research on information-seeking supports concerned persons are not likely to turn to a professional and any concerns that are expressed may largely be underrecognized in the clinical setting, thus missing the opportunity for education, evaluation, and intervention.

Fear of AD lacks a unified theory or model to interpret observed differences in levels of concern. Some factors must account for why some individuals fear AD and others do not. The behavioral health-affiliated literature contains models that purport to explain responses to health threats (e.g., Prochaska & Velicer, 1997), but often center on diseases that may be reversed or stabilized, unlike a neurodegenerative disorder. These theories are likely helpful in appreciating some aspects of the experience, but insufficient in terms of addressing one’s fading sense of awareness.

Kessler, Bowen, Baer, Froelich, and Wahl (2012) pointed to several existing models for guiding an understanding of dementia worry. In addition to highlighting the overlap with aging anxiety and health anxiety, Kessler and colleagues argued for a psychological fear that emerges specific to developing a dementia. First, the authors proposed that dementia threatens the nature of human identity by targeting the sense of self and our need to distinguish ourselves as advanced beings and living a meaningful life (Kessler et al., 2012). The challenge to our symbolic self, Kessler et al. wrote, threatens “the very idea of individuals’ identity as human beings” (p. 278). Second, they proposed that dementia threatens the perception of an intersubjective reality. Human interaction involves various forms of communication, which may span verbal, behavioral, emotional, visual, and tactile forms. Throughout life, these forms of communication serve to connect us and provide a sense of shared experience; that is, despite differences, we are not alone in this world. Kessler et al. hypothesized that dementia is perceived to directly deprive a person of this shared experience, prompting withdrawal and isolation. As seen in other terminal illnesses, loved ones may still be alive, but communication is limited, creating a new, yet less well-defined dimensional aspect to a family’s grief that is ambiguous in nature (see Doka, 2004). Within the process of anticipatory grief, confrontation with the symptoms serves as a reminder of what can happen and leads one to question quality of life, should they also develop a dementia.

Previous studies on fear of AD have assessed self-reported fear at a single point in time with a single question. For example, a typical prompt, as seen in Hodgson et al. (1999), asks the following question: “I’d like to ask how concerned you are about personally developing AD. Would you say you’re very concerned, somewhat concerned, not very concerned, or not at all concerned about developing Alzheimer’s?” (p. 366). A single-question approach may miss more specific concerns. The purpose of the present study was to report the development of a multidimensional scale that focuses on the concerns one may have about developing dementia. We sought to obtain information from a sample of cognitively intact (i.e., without diagnosis) adults with intention of following such persons over time. Aside from a few published exceptions (French, Floyd, Wilkins, & Osato, 2012; Kessler, Südhof, & Frölich, 2014), most studies measuring fear of dementia have relied on a single question targeting such fear and do not quantitatively assess any specific components of fear of developing dementia. We believe the present study will provide a more robust examination of dementia fear and its potential correlates.

Method

Participants

There were 734 participants in the present study, ranging in age from 40 to 93 years, with an average age of 61.39 (SD = 12.89; see Table 1). Most participants were female (64.5%), White (87.3%), married (67.1%), and working full-time (44.9%), with an average of 15.23 years of education (SD = 2.69). As we explored capturing thoughts about developing dementia, we assessed participants’ degree of exposure to persons living with a form of dementia. They reported knowing an average of 1.98 individuals with dementia. A small percentage reported currently serving as a dementia care partner (3.3%), but a greater portion reported previous work as a care partner (14.8%). Almost 10% of the participants currently work or worked in a setting that exposed them to dementia. While only 2.2% reported having had an evaluation for dementia, 57.5% indicated they were actively doing something to prevent developing dementia (e.g., exercising, diet, cognitive stimulation).

Table 1.

Demographic Data for Time 1 and Time 2.

	Time 1	Time 2
Participants	734	226
Age range	40–93	42–95
Average age	61.39 (12.89)	71.38 (10.87)
Gender (% female)	64.5%	73%
Education (years)	15.23 (2.69)	15.53 (2.75)
Race/Ethnicity (%)
Caucasian	87.3	96.9
African-American	4.9	.9
Hispanic	4.2	.9
Other	2.1	.9
Missing	1.5	.4
Marital status (%)
Married	67.1	55.3
Divorced	13.7	12.4
Widowed	13.2	27.4
Single	5.2	4.9
Employment (%)
Retired	36.6	66.8
Full-time	44.9	20.8
Part-time	11.8	10.2

This study was designed as a longitudinal examination of fear of dementia over time. Participants who indicated their willingness to be recontacted after a period of 2 years received another survey packet at an address they supplied. An average of 26 months elapsed between Time 1 (2010) and Time 2 (2012). Participants in the second wave of data collection (N = 226) were largely female (73.1%) and Caucasian (96.9%). The average age was 71.20 (SD = 11.17). For a comparison of demographics characteristics of the sample across the two measurement periods, see Table 1. The group who indicated a willingness to be followed over time was approximately a decade older than those who did not and were more likely to be retired.

Measures

Development of a measure to assess fear of dementia

The Fear of Dementia (FOD) scale was designed to assess a participant’s level of concern regarding various aspects of AD and other dementias. Questions targeted concerns about dementia, reflecting perceptions of risk for developing a dementia syndrome, cognitive decline, changes in relationships with others, health-related concerns, loneliness, being institutionalized, death from disease, and everyday functional dependence. Participants indicated their level of concern on a 5-point scale, ranging from 1 (not concerned) to 5 (very concerned). Items were derived from the developers’ clinical experience, brainstorming, and review of the qualitative literature on dementia fears (e.g., Corner & Bond, 2004; Cutler & Hodgson, 1996, 2003; Hodgson et al., 1999). An initial set of 39 items were developed (see Table 2) with an option for participants to write in any additional concerns not covered. Participants were provided with the following prompt: “How concerned or fearful are you about the following aspects related to having AD? Please read each item carefully and circle the number that best represents your feeling.” Prior to analysis (see later), all items were recoded if necessary to reflect greater fears about dementia.

Table 2.

Fear of Dementia Scale Items.

Item 1	I am (or will be) at risk for developing Alzheimer’s disease
Item 2	I have signs or symptoms of memory loss
Item 3	I will lose my identity or sense of who I am
Item 4	Others will think less of me
Item 5	I will lose my memory
Item 6	I will be unable to remember important facts (names, dates, etc.)
Item 7	I will lose my ability for abstract thought
Item 8	I will be an emotional burden to those caring for me
Item 9	My physical health will decline or suffer
Item 10	I will feel embarrassed by the diagnosis of Alzheimer’s disease
Item 11	I will no longer be able to make good decisions and act on them
Item 12	My mental and emotional health will decline or suffer
Item 13	I will lose my freedom or sense of autonomy
Item 14	I will not receive the quality of care that I need to deserve
Item 15	I will no longer be a contributing member of society
Item 16	I will no longer be able to interact with family or friends
Item 17	I will be alone
Item 18	I will be a physical burden to others who care for me
Item 19	I will live with Alzheimer’s for many years
Item 20	I will be unable to communicate my thoughts and feelings
Item 21	I will have trouble recognizing my friends and family
Item 22	I will not be able to provide care for my loved ones when they need it
Item 23	I will eventually die from Alzheimer’s disease
Item 24	I will avoid formal diagnostic testing to determine if I have Alzheimer’s
Item 25	I will be a financial burden to my loved ones or to society
Item 26	I will end up in a long-term care facility (i.e., nursing home)
Item 27	I will be able to care for myself or live independently
Item 28	I have signs or symptoms of impaired judgment
Item 29	I will be unable to pay for my care
Item 30	I will be unaware of my surroundings (e.g., house, neighborhood)
Item 31	I will be disoriented to the date, where I am at, or what time it is
Item 32	I will no longer be able to remember by childhood
Item 33	I will no longer be able to remember my (grand)children’s names
Item 34	I will be unable to drive
Item 35	I will be unable to make my own appointments (doctor, dentist, etc.)
Item 36	Other people will avoid me
Item 37	I will no longer be able to remember my anniversary or birthday
Item 38	I will no longer be able to work
Item 39	I will not be able to have conversations with people I care about

Construct validity

To establish construct validity of the FOD scale, the Anxiety about Aging scale (AAS; Lasher & Faulkender, 1993) was administered. The AAS is a 20-item, self-report measure of anxiety about aging. Respondents rate their level of agreement with age-related statements, ranging from 1 (strongly disagree) to 5 (strongly agree). A higher score on this scale indicates a greater endorsement of anxiety about the aging process. The AAS possesses adequate construct validity and reliability (Lasher & Faulkender, 1993). The internal consistency estimate based upon data from the current sample was .52. Total AAS scores were used here.

The NEO Five-Factor Inventory Revised (NEO FFI-R; McCrae & Costa, 2004) was also administered to participants. The NEO FFI-R is a 60-item measure of five personality traits (Neuroticism, Agreeableness, Conscientiousness, Extraversion, and Openness to Experience) created in response to several limitations of the NEO Five-Factor Inventory, wherein via work by McCrae and Costa (2004), several items were replaced and revalidated. Respondents indicate the extent to which statements are representative of themselves, ranging from strongly agree to strongly disagree on a 5-point scale. The NEO FFI-R is reliable and valid, showing modest improvements in these respects over the original scale. A higher score for each of the dimensions indicates greater endorsement of traits in that scale. For the entire scale, the internal reliability estimate in the current study was .65. Total subscale scores for the NEO FFI-R were used here.

During the Time 2 follow-up, additional questions about health were included in the survey. Specifically, we inquired about the participants’ perception of their overall physical health and their health when comparison with their peers. The first item, “please rate your overall physical health,” displayed options ranging from 1 (poor) to 4 (excellent). The second item, “compared to other adults your age, how would you rate your health,” allowed participants to select from 1 (worse), 2 (same), or 3 (better). With both questions, a higher score represents a more favorable perception of health.

Procedures

Participants were recruited from a variety of sources, including parents and grandparents of students enrolled in undergraduate courses at a large public university in the Southwest, via a newspaper ad placed in the local paper of a suburban town, and with the help of two community-based gerontologists at their places of employment (a large urban church and a large retirement village). Of the 800 initial surveys distributed, 762 were returned, resulting in 735 usable surveys.

Results

Factor Analysis of the FOD Scale Items

Initial tests exploring the comparability of the variance/covariance matrix and the respective factor structures across Time 1 and Time 2, using an exploratory three-factor model as a basis, via confirmatory factor analysis resulted in poor fits (χ²₁₅₈₀ = 4,714, confirmatory fit index = .77, root mean square error of approximation = .10).

The dimensionality of the 39 items from the FOD scale was analyzed using principal component analysis (PCA) in SAS version 9.4, wherein each principal component is derived independent of the other, wherein each accounts for unique variance in relationships among items (Hair, Anderson, Tatham, & Black, 1995). Prior to performing PCA, the suitability of the data for factor analysis was assessed. Inspection of the correlation matrix revealed the presence of many coefficients of .3 and above. The Kaiser-Meyer-Olkin value was .98, exceeding the recommended value of .6 (Kaiser, 1970), and Bartlett’s test of sphericity (Bartlett, 1954) reached statistical significance, supporting the factorability of the correlation matrix.

PCA with a promax rotation revealed the presence of three components with eigenvalues exceeding 1, explaining 21.57%, 1.95%, and 1.76% of the common variance among items, respectively. An inspection of the scree plot showed a significant drop after the first component and a leveling off after the third component. After a review of the scree plot, variance accounted for, and the items on each component, the three-component solution was retained, with this three-factor solution explaining 25.28% of the common variance among items. A promax rotation was performed to aid in the interpretation of the data (standardized regression coefficients are reported in Tables 3 and 4). While the measured variables at Time 1 did not always show simple structure (i.e., measured variables loaded on more than one factor at a level of 0.40, or higher), we maintained simple structure by removing measured variables from the final factor structure that did not achieve simple structure. This lack of simple structure suggests that some items were associated with more than one latent factor.

Table 3.

Principal Component Analysis of FOD Items at Time 1.

Scale item	Burden and loss	Quality	Social and of life cognitive loss
1	−25	74	20
2	−37	67	13
3	24	64	−8
4	11	15	48
5	10	86	−4
6	17	82	−10
7	14	19	−11
8	5	80	5
9	20	57	14
10	3	4	77
11	23	73	−1
12	24	71	5
13	28	68	1
14	1	14	67
15	60	17	9
16	54	40	1
17	13	3	71
18	12	57	23
19	16	52	21
20	44	48	6
21	61	36	3
22	64	11	9
23	35	−4	44
24	−12	−1	71
25	23	33	34
26	5	40	44
27	31	53	15
28	−3	19	45
29	18	9	53
30	75	11	14
31	76	13	9
32	76	−3	10
33	65	20	−6
34	76	4	0
35	81	6	2
36	50	−17	54
37	80	−19	17
38	92	−20	−10
39	63	36	−10

Note. Standardized regression components loadings are listed. FOD = Fear of Dementia.

Table 4.

Principle Components Analysis of FOD Items at Time 2.

Scale item	Burden and loss	Quality of life	Social and cognitive loss
1	1	−9	84
2	−33	−1	92
3	18	−4	69
4	60	−10	15
5	20	−2	75
6	3	14	75
7	12	4	69
8	69	−4	30
9	50	2	36
10	62	−1	9
11	47	1	49
12	54	−1	45
13	52	10	32
14	89	2	−12
15	76	28	−24
16	57	26	15
17	70	23	−16
18	84	4	3
19	48	20	25
20	42	31	31
21	35	38	30
22	53	35	3
23	18	44	18
24	40	4	9
25	93	−1	−13
26	71	3	9
27	70	6	20
28	5	8	47
29	82	−5	−1
30	34	49	16
31	17	55	27
32	−11	87	5
33	9	72	8
34	6	72	−1
35	9	75	5
36	33	52	−8
37	−18	97	0
38	7	72	−18
39	31	50	17

Note. Standardized regression components loadings are listed. FOD = Fear of Dementia.

The first component (13 items) indicated concerns related to becoming a burden to others should they develop dementia. Representative items included “I will be a physical burden to others,” “I will be an emotional burden to others,” and “I will be unable to care for myself or live independently.” As such, this component was labeled Burden and Loss. These items largely reflected concerns not only for how dementia may impact their own life and functioning but also for the effect of their dementia on others in their support networks.

The second component (14 items) indicated concerns related to their functional status and cognitive performance. Representative items included “I will not receive the quality of care that I need or deserve,” “I will be alone,” and “I will end up in a long-term care facility (i.e., nursing home).” As is seen in many neurodegenerative disorders, as the disease progresses, there is a significant impairment in an ability to carry out independent and basic activities of daily living that affect one’s quality of life. This second component appeared to represent concerns related to this loss of quality of life, and as such, was labeled Quality of Life.

The final component (8 items) at Time 1 captured a participant’s concerns about social consequences of dementia (e.g., “I will be alone”) and secondarily reflected concerns about cognitive loss (e.g., “I have signs or symptoms of impaired judgment”; see Table 3). However, at Time 2, the third factor appeared to more strongly measure current concerns or symptoms of cognitive impairment (see Table 4). Representative items included “I am at risk for developing Alzheimer’s disease,” “I will have signs or symptoms of memory loss,” and “I will lose my identity or sense of who I am.” As outlined in earlier work (Cutler & Hodgson, 1996), a (mis)perception of memory decline is associated with increased risk of developing dementia. At Time 2, such fears were termed Perceived Social and Cognitive Loss and are represented in this final component.

Internal Consistency

Total scores for the FOD scale at Time 1 produced high internal consistency reliability, returning a Cronbach’s alpha of .98, and the 35-item version at Time 1 produced an alpha of .97. Factors 1, 2, and 3 at Time 1 revealed alphas of .97, .92, and .86, respectively. At Time 2, total scores for the FOD scale returned an alpha of .98, and the 35-item version at Time 2 returned an alpha of .96. Factors 1, 2, and 3 at Time 2 revealed alphas of .97, .88, and .73, respectively.

Stability Over Time

An investigation of the measure’s stability over time revealed a three-component structure was found at Time 2 with the follow-up sample, but at Time 2, it appeared that Factor 3 shifted from a concern with social issues and secondarily cognitive loss associated with dementia to central concern with cognitive issues, but Factors 1 and 2 remained relatively stable from Time 1 to Time 2 (see Table 3). Factor 1 (Burden and Loss) had 17 items with significant loadings (standardized regression coefficients), Factor 2 (Quality of Life) had 11 items with significant loadings, and Factor 3 (Perceptions of Cognitive Loss) had 7 items. As the factor score of the FOD scale appeared to change somewhat over time (see Tables 3 and 4), we did not calculate test–retest correlations across the 2-year time frame for the FOD factors derived from the PCA at each occasion.

Construct Validity of the FOD Scale

Examining the relationship between aging anxiety and our FOD scale, correlation coefficients were computed among the FOD factors and the AAS at Time 1 and Time 2. The results of the correlational analyses presented in Tables 5 and 6 show that the correlations between these variables were statistically significant. In general, findings suggested that if participants reported higher levels of anxiety about their own aging process, they tended to also report higher levels of concern about developing specific feared aspects of dementia.

Table 5.

Correlations Among FOD Factors, NEO-FFI-R, and AAS at Time 1.

	N	E	O	A	C	AAS
Factor 1	.08	.14	.05	.09	.12	.04
Factor 2	.16*	−.04	−.04	−.01	−.07	.20**
Factor 3	.27***	−.03	.02	−.13	−.07	.19*

Note. FOD = Fear of Dementia; NEO-FFI-R = NEO Five Factor Inventory Revised; Factor 1 = Burden and Loss; Factor 2 = Quality of Life; Factor 3 = Perceived Social and Cognitive Loss; N = Neuroticism; E = Extraversion; O = Openness; A = Agreeableness; C = Conscientiousness; AAS = Anxiety about Aging Scale.

*p < .05. **p < .01. ***p < .001.

Table 6.

Correlations Among FOD Factors, NEO-FFI-R, and AAS at Time 2.

	N	E	O	A	C	AAS	OPH	CPH
Factor 1	.31***	−.05	−.03	.01	.02	.18*	.03	−.18*
Factor 2	.25**	−.10	−.02	−.04	−.19*	.22**	−.05	−.17*
Factor 3	.15*	.04	−.07	.04	.01	.17*	−.12	−.20**

*p < .05. **p < .01. ***p < .001.

Interestingly, Neuroticism at Time 1 was predictive of greater FOD Factors 1 and 3 scores at Time 2 (rs = .23, .18, .09, respectively, all ps < .05), as well less Conscientiousness (r = −.23, p < .05) with regard to FOD Factor 3 scores at Time 2. In addition, aging anxiety predicted FOD Factors 1 and 3 scores 2 years later (rs = .20 and .21. respectively, p < .05).

Participants’ perceptions of health (overall rating of physical health and comparing their health to others their age) and the FOD factors scores were not correlated at Time 1, with the exception the finding of those rating their health as better at present tended to report fewer concerns about quality of life (r = −.17, p < .03). There was minimal correlation between participants’ rating of health compared with their peers and concerns about quality of life that can occur with dementia at Time 1. This pattern was not replicated at Time 2, with the correlations between FOD factors and health at present being nonsignificant, while those with health related to others of one’s age being −.17 (Quality of Life), −.18 (Burden and Loss), and −.20 (Perceived Social and Cognitive Loss; all ps < .05), suggesting that better relative health was associated with fewer concerns about dementia. This pattern generally suggests that perceptions of one’s health are somewhat protective of concerns about dementia.

Discussion

Previous research on identifying and assessing fear of dementia has viewed this unique concern in global terms (i.e., to what extent do you fear developing a dementia?). However, the goal of the present study was to better understand the nuances of fear of dementia in a relatively large middle-aged and older-adult sample. This is important because the meaning of a dementia diagnosis is highly individualized and, therefore, may invoke different fears among individuals. To examine the factor structure of fear of dementia in more detail, we assessed over 700 individuals using this newly constructed FOD scale and then tested a subsample of over 200 of these individuals 2 years later.

During the 2-year period between data collections, fear of dementia received increased attention, as evidenced by the publication of the 30-item self-report Fear of Alzheimer’s Disease scale (FADS) by French et al. (2012) and the first known published attempt to integrate and conceptualize dementia fears by Kessler et al. (2012, 2014) in Germany. Interestingly, French et al. also outlined three components in their measure: (a) general fear of AD, (b) physical symptoms experienced because of thinking about AD, and (c) catastrophic attitudes about AD. While many of our overall items parallel one another, the three FOD components align largely with the general fear component of the FADS; thus, we offer that the FOD breaks those general fears down into various specific concerns. Further, we believe the FOD offers greater emphasis on concerns about the relational impact of the disease. Notably, the FADS adds additional areas not covered by the FOD, as evidenced by their attention to physical reactions, such as “My appetite decreases when I think about developing Alzheimer’s disease” and “I feel hot and even sweat when I think about developing Alzheimer’s disease” (p. 525). Perhaps most important, and certainly stressed in these recent publications, was a recognition of variability in what one fears about a dementia disease, which in turn increases understanding and allows one to better appreciate both inter- and intraindividual differences in such fears.

Based on PCA, fear of AD was conceptualized here as comprising three major concerns. First, there was a clear concern for becoming a burden to others and of personal loss, whether it expressed itself as financial, physical, or emotional. The second component highlighted how a dementia disease can impact one’s quality of life. The third component of the FOD scale was a perception of social/cognitive loss. That a purely loss factor was identified over the 2-year time frame could reflect persons’ greater focus on the loss of such skills that they associate with an older age, borne perhaps of the presumed link between dementia and aging, in contrast to a broader focus on the social and cognitive aspects of dementia 2 years earlier.

The construct validity of our measure was supported with significant correlations found with anxiousness about the aging process, as well as several personality traits, neuroticism in particular. In contrast, no such relationships at each occasion were found between FOD and the remaining dimensions of the NEO-FFI-R, speaking to the convergent and divergent validity of the FOD scale.

The relationship observed between a component of anxiety (specific to aging) and our components is parallel to that found in French et al. (2012), who examined the relationship of dementia fear to state anxiety. We offer that our findings here support Kessler et al.’s (2012) theoretical proposal that concern about developing dementia was related to aging anxiety. Likewise, components of fear of dementia were positively correlated with Neuroticism, often described as possessing negative emotional traits, including anxiety, fear, and emotional instability (McCrae & Costa, 2004). Previous work has demonstrated the relationship between neuroticism and health worries, behaviors, and quality of life (e.g., Costa & McCrae, 1985; Jorm et al., 1993; Lahey, 2009). It may be that higher neuroticism (and less conscientiousness) predisposes persons to develop dysfunctional fears about dementia and its consequences. Indeed, these qualities, to varying degrees at Time 1, were predictive of greater FOD factor scores at Time 1, as was greater anxiety with growing older.

Finally, as we observed at best a small correlation between comparing one’s health with their peers and our three FOD components, more robust investigation is needed to better understand the relationship between physical and cognitive health, whether it be actual or perceived, and how that may translate into how one might act on such concerns as a predictor of fears about being diagnosed with some form of dementia. It may be that perceptions of one’s health as better might be protective of the development of fears about dementia.

Limitations of the Study

Interpretation of the findings here should be made with several limitations in mind. First, while the initial data collection included a sizable number of participants, the majority was recruited from the parents and grandparents of undergraduate psychology students; this represented a convenience sampling approach. Second, a percentage of the older participants were recruited by two community-based gerontologists working in a religious environment (i.e., a Presbyterian church and a Christian-based retirement community). This religious affiliation may serve as a buffer to such existential concerns related to loss of self when a dementia progresses to a devastating state. Third, the sample largely represented Caucasian individuals, while other minority groups were underrepresented, which may skew the extent or the nature of dementia concerns identified in our study.

An age difference was also prominent in those who were willing to participate in the follow-up effort, with the longitudinal sample being a decade older than the Time 1 sample. Consideration of these age differences should be considered when interpreting the results. The follow-up sample represents arguably a different generation of adults, whose concerns about dementia may be lessened or exacerbated by living to a greater age. However, it should also be noted that the simple structure of the FOD scale improved at Time 2. This suggests that these three factors become more coherent (at least, psychometrically) with an older sample.

Implications and Future Directions

Support for a multidimensional view of fear of dementia can begin to inform clinical and educational interventions. Going forward, once we gain a better understanding of fear of dementia and have ways to capture this construct, we may consider turning our attention to what do I do with this fear? A certain level of fear or concern may be needed to stimulate movement and health-related behaviors; however, research has not determined at what point this occurs for those with dementia concerns. Additional endeavors may also explore how concerns about dementia change over time. We may ask, what feedback can be given to the many persons concerned about developing dementia? Attempts to reduce someone’s fear of AD may be unsuccessful and ultimately serve to invalidate their concerns, knowing that previous research has supported that education about dementia increased concerns. Perhaps shifting toward discussing instead of educating is more personally validating. With a reliable and valid measure in place, we can now investigate how one’s level of fear relates to health behaviors, knowledge, experience, and exposure to dementia.

Footnotes

Author Note

This research was completed at the University of North Texas.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The authors received no financial support for the research, authorship, and/or publication of this article.

Author Biographies

Kyle S. Page holds board certification in geropsychology and is employed as a staff psychologist at the VA Central Iowa Health Care System, Des Moines, Iowa. His clinical and research interests involve fear of dementia, working with staff and families on managing dementia-related challenging behaviors, and decisional capacity.

Bert Hayslip Jr. is a regents professor emeritus at the University of North Texas. He is a fellow of the American Psychological Association, the Gerontological Society of America, and the Association for Gerontology in Higher Education. In 2016, he received the Distinguished Career Contribution to Gerontology Award from the Behavioral and Social Sciences Section of the Gerontological Society of America.

Dee Wadsworth is a community based gerontologist who assists older adults and their families as they navigate the aging journey. A frequent public speaker and workshop leader, she promotes the spiritual and psychological wisdom that aging may bring.

Philip A. Allen is professor of psychology at the University of Akron. His research interests include cognitive aging and Chiari malformation Type I using behavioral, EEG, and MRI methods.

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