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Beliefs About Memory Problems and HelpSeeking in Elderly PersonsPerla Werner PhD aa The Department of Gerontology, Faculty of Social Welfare andHealth Studies , University of Haifa , IsraelPublished online: 03 Oct 2008.

To cite this article: Perla Werner PhD (2004) Beliefs About Memory Problems and Help Seeking inElderly Persons, Clinical Gerontologist, 27:4, 19-30, DOI: 10.1300/J018v27n04_03

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Beliefs About Memory Problemsand Help Seeking in Elderly Persons

Perla Werner, PhD

ABSTRACT. Using the Health Belief Model as its conceptual frame-work this study examined elderly persons’ perceptions about memoryproblems and their decisions about seeking help for these problems.

In-depth interviews were used with 79 community-dwelling elderlypersons.

Participants believed memory problems to be an inevitable part of theaging process. Psychological consequences were mentioned as the mainimpact of these problems. Seeking care was presented mainly as a resultof fatalistic beliefs that nothing can be done to help with memory problems.

Findings of this study help identifying areas for potential interven-tion, such as the development of education strategies for elderly personsand for healthcare providers. [Article copies available for a fee from TheHaworth Document Delivery Service: 1-800-HAWORTH. E-mail address:<docdelivery@haworthpress.com> Website: <http://www.HaworthPress.com> © 2004by The Haworth Press, Inc. All rights reserved.]

KEYWORDS. Mild cognitive impairment, memory screening, healthbelief model, Alzheimer’s disease, help seeking, perceptions

INTRODUCTION

Alzheimer’s disease is characterized by a progressive deteriorationin intellectual abilities. It has been estimated that 5% to 10% of the adult

Perla Werner is affiliated with the Department of Gerontology, Faculty of SocialWelfare and Health Studies, University of Haifa, Israel.

Address correspondence to: Perla Werner, PhD, Associate Professor, Departmentof Gerontology, University of Haifa, Haifa, 31905, Israel.

Clinical Gerontologist, Vol. 27(4) 2004http://www.haworthpress.com/web/CG

2004 by The Haworth Press, Inc. All rights reserved.Digital Object Identifier: 10.1300/J018v27n04_03 19

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population aged 65 and older in the United States is affected by the dis-ease, and the incidence doubles every five years among those in this agegroup (Sternberg, Wolfson, & Baumgarten, 2000).

Although there are still no treatments to cure the disease, the impor-tance of early evaluation has been recently stressed by several Consen-sus Conferences (Small, Rabins, Barry, Buckholtz, DeKosky, Ferris etal., 1997; Patterson, Gauthier, Bergman, Cohen, Feightner, Feldman etal., 1999). At the personal level, early evaluation and management ofAlzheimer’s disease could improve the functional and self-care abilitiesof the elderly person suffering from the disease, could delay the deterio-ration of cognitive functioning and could enhance the elderly person’sand the caregiver’s quality of life (Doraiswamy, Steffens, Pitchumoni, &Tabrizi, 1998). At the public level, early detection of the disease couldbe associated with cost savings (Ernst, Hay, Fenn, Tinklenberg, &Yesavage, 1997).

Despite this benefits, there is still a considerable lag between the ap-pearance of the first symptoms of cognitive and memory deteriorationand the timing of diagnosis. Several studies have attributed this lag tolow levels of ascertainment by primary care physicians (Callahan, Hendrie, &Tierney, 1995; Eefsting, Boersma, Van den Brink, & Van Tilburg, 1996;O’Connor, Pollitt, Hyde, Brook, Reiss, & Roth, 1988).

However, recently the difficulty experienced by elderly persons them-selves and by their family caregivers to differentiate memory problemsin normal aging from their being predictors of Alzheimer’s disease hasbeen stressed (Knopman, Donohue, & Gutterman, 2000). Although theassessment of cognitive status is precipitated by a complaint of the el-derly person, it was found that only 26% of the elderly persons whoworried about their memory functioning consulted their physicians(Commissaris, Jolles, Verhey, Ponds, Damoiseaux, & Kok, 1993). There-fore, assessing the reasons for seeking or not seeking help for memoryproblems may be of utmost importance.

Help seeking can be conceptualized as a health-related decision-making process. While early studies dealing with help-seeking deci-sions adhered mainly to a rational action framework, lately the impor-tance of motivation, beliefs, and perceptions on the decision to seekmedical help has been stressed (Pescosolido, 1992) also in the area ofdementia (Braun, Takamura, & Mougeot, 1996; Hicks & Lam, 1999).The Health Belief Model (HBM) (Sheeran & Abraham, 1998) is one ofthe theoretical models used to understand health-related decision mak-ing in general and help-seeking behavior in particular. This model fo-cuses on the social psychology of decision making and on the role of

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beliefs in the person’s decision to seek help. The model includes twomain constructs: threat perception and behavioral evaluation. Threatperception depends on two beliefs: perceived susceptibility to illness andanticipated severity of the illness. Behavioral evaluation also consists oftwo sets of beliefs, those relating to the benefits of a health behavior andthose concerning the barriers to enacting the behavior.

With the HBM as its conceptual framework, the aim of the presentstudy was to explore elderly persons’ perceptions regarding their inten-tions to seek medical help and to perform a memory assessment whenconfronted with memory problems.

METHODS

Participants: A convenience sample of 79 community-dwelling el-derly persons aged 55 years and older participated in the study. Theirmean age was 67.6 (SD = 9.9). Forty participants (50.6%) were femaleand the rest male. The majority were married (71.8%), the remainderwidowed (17.9%) or single (10.3%). On average they had 2.9 children(SD = 1.6). Approximately a third of the participants (33.3%) were bornin Israel, 47.4% were born in Europe or America, 15.4% in Asia or Af-rica, and 2.8% in other countries. Participants reported having an aver-age of 13.5 (SD = 3.6) years of education.

Three items from the Cambridge Examination for Mental Disordersof the Elderly (CAMDEX: Roth, Huppert, Tym, & Mountjoy, 1988)were used to assess whether the participants had subjective memoryproblems in three areas: remembering where things are, rememberingthe correct date, and remembering the name of known persons. Eachitem was rated from 1–not at all, to 4–all the time. Overall, participantsreported having few subjective memory problems: mean 2.2 (SD = 0.7),1.6 (SD = 1.5), and 1.5 (SD = 0.8), respectively, for complaints aboutmisplacing things, forgetting dates, and forgetting names, respectively.

Design: Semi-structured interviewing and qualitative analysis wereemployed in this study. The interview schedule was developed to cover-ing the HBM components.

Interviewers were 15 graduate students at the Department of Geron-tology at the University of Haifa who were trained in in-depth inter-viewing techniques. All interviews were conducted in Hebrew, betweenDecember 2000 and January 2001, at the participants’ homes. Verbatimresponses were recorded during the interview. Data were screened im-

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mediately after the interview and information and/or clarifications wereadded where necessary.

Before the interview began, the study was explained in detail and oralinformed consent was obtained from the participants. Information wasprovided regarding memory problems in the elderly and the possibilityof assessing these problems by physicians using standardized instru-ments.

Data analysis: The interview data were analyzed following Smith’sguidelines (1995) which include imparting order and meaning to thedata through looking for emerging themes and the connections betweenthem.

RESULTS

1. Causes of Memory Problems–Perceived Susceptibility

Through the structured questions participants reported having fewmemory problems, but a different picture emerged from the semi-struc-tured interviews. Memory problems were recurrently mentioned as aproblem for almost all participants. It was regarded as an almost inevita-ble part of growing older, a natural and normal process accompanyingaging.

Well, I really have some memory problems. I forget all kind of things. . . . Forexample I forget the names of my three daughter, would you believe it? Ihave three daughters and sometimes I can’t remember their names. Itcomes and goes, I never know when will I forget and when will I remem-ber anything. . . . But I know this is part of the aging process. It does notmean I’m sick, its just the natural course of life (M., female, 78 years).

I know I have some memory problems but I don’t worry about them.Memory problems at my age are natural. You can’t “forget” aboutthem (laughing) (A., male, 66 years).

Memory is like a muscle and when you get old it wears down as anyother muscle (C., female, 75 years).

Beliefs such as these may act to protect elderly persons from worriesabout decreasing functioning. Indeed, several participants attributedmemory problems to external causes, such as lack of attention, over-load, and physical problems rather than to age.

Last week I lost some personal papers. I looked everywhere but couldnot find them. Some time later one of the secretaries at the first floor ofthe building where I work, called me and told me that she found the pa-pers on her desk. Then I remembered that when I came back from lunchI stopped by her desk to sign some documents. I was so distracted that I

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forgot my personal papers there. Yes, . . . I have memory problems butmainly short-term problems and especially when I’m distracted (I.,male, 55 years).

I lost my job and while I was looking for another job I studied acu-puncture and Chinese medicine. During this time I had memory prob-lems, but as a consequence of physical problems that appeared whileexercising the use of Chinese needles on me (S., female, 61 years).

Sometimes I forget the names of persons whom I’m talking to. I don’tthink this is related to age, because I always had this problem. How-ever, lately I noticed that people are offended when I don’t remembertheir names. I think it’s a problem of lack of attention and carelessness.I don’t care what is the name of this person. But now if I realize thatsomeone gets offended, I try to concentrate and I try to remember thename (R.P., female, 60 years).

2. Consequences of Memory Problems–Perceived Severity

Even though participants minimized the importance of memory prob-lems, describing them mainly as a natural process, the effects and con-sequences of these problems were described as very bothersome andprofound. Psychological consequences carried more weight than physi-cal consequences. They included fear, shame, frustration, and embarrass-ment.

Its very frustrating. Several times I go into a room and I can’t remem-ber why I went in there. Oi . . . makes me crazy!!! (E., male, 58 years).

When I can’t find my keys I get very angry. I yell at my wife, and thenfeel more frustrated and anxious (I., male, 74 years).

Its very embarrassing. Sometimes I’m talking with someone and Iforget the name. I stand there, look at their face and can’t remembertheir name. I don’t know what to do . . . (S.B., female, 82 years).

3. Prevention–Perceived Benefits of Memory Assessment

Respondents frequently said, “I have no idea” or “I don’t know any-thing about that” when asked regarding the benefits of seeking a mem-ory assessment. Ignorance or lack of awareness and was sometimesaccompanied by fatalistic beliefs as some respondents who consideredmemory problems inevitable and saw no benefits in undergoing the as-sessment.

I don’t see any benefits. There is no cure for memory problems. So,what good will it do to do an assessment? Memory problems are age-re-

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lated and there is nothing we can do. For some people the problems areworse than for others, but there is no available treatment (E., male, 58years).

There is no hope for memory problems . . . so there is no benefit insuch an assessment (C.S., male, 74 years).

There are no benefits . . . everything is in God’s hands (S.M., female,64 years).

If it is meant to be, it will happen. It will not help to know, there is nomagic cure (N., female, 58 years).

There is no cure . . . so what’s the point? It’s not like someone will tellus, “Go, do these exercises and everything will be fine” (S., female, 71years).

For those who were less fatalistic, the main benefits were conceptual-ized in terms of preventing further deterioration and enhancing qualityof life.

Some respondents had sufficient knowledge to describe the benefitsof the memory assessment in terms of slowing the progression of thedisease.

The memory assessment can help in the diagnosis of Alzheimer’sdisease. If you know you can delay the disease. Then it will be beneficialto do a memory assessment; you could slow the deterioration process(R., female, 59 years).

Such an assessment could tell me whether I’m in the average rangefor normal aging or whether I have a cognitive problem (R., male, 56years).

Others described the benefits more related to the decrease of anxiety,embarrassment, and shame.

The assessment may prove to society and to those around the elderlyperson that he/she is not “crazy” but sick. It may also help in the casethe person suffers from memory problems as a result of side effects ofsome medications. The physician can discontinue these medicationsand people will not laugh at him (M.M., female, 76 years).

It helps you reduce your doubts and fears (S., female, 62 years).It clarifies the situation, helps you know what is the real picture.

Confronts you with your problems (I., male, 64 years).If I had severe memory problems I would feel like I have no control of

my life. The assessment could help me regain this control and reducemy concerns (B., female, 61 years).

4. Prevention–Perceived Barriers to Undergoing a Memory Assessment

Participants expressed many perceived and objective barriers thatthey felt prevented them from undergoing a memory assessment test.

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The barriers were grouped into two broad types: structural and psycho-social.

Structural barriers are factors that may affect the target population’saccess to health services. The most frequently mentioned structural bar-rier was cost.

If I have to pay out-of-pocket I don’t want to do it (A., female, 75 years).Psychosocial barriers include perceptions, beliefs, and attitudes. The

most frequently mentioned psychosocial barriers to having a memorytest were fear of learning that one has indeed memory problems, thestigma associated with these problems, and concern at being labeled an“old person.”

You don’t perceive memory problems as a functional limitation untila physician tells you that they are a problem. You tend to ignore them . . .there is no pain or physical limitation. When the physician tells you,then you become really old, dependent, you lose your independence (Y.,male, 55 years).

I wouldn’t do a memory assessment. Its really depressing to knowyou have memory problems, mainly because there is nothing to do about it(A., male, 58 years).

Knowing that I have severe memory problems will make me reallyanxious. I think I would stop doing things I’m doing today, I would feelparalyzed (A., female, 55 years).

People are afraid that the assessment will tell them that they havememory problems, and then what will the others think? Among us, Pol-ish people, its very important what others think; if they know you have aproblem it is as if have a stigma (B., male, 58 years).

Knowing that I have memory problems will jeopardize my confi-dence, and this will worsen my problems (R., male, 56 years). It’s reallyfrightening. People may think you are in the first stages of dementia. Itwill deepen your depression, hopelessness, and dissatisfaction with life(R., female, 59 years).

Some participants were unable to think of any barriers to doing mem-ory assessment tests. For some, the reasons for not finding barriers wererelated to their lack of knowledge about these tests (I don’t think thereare barriers, but I don’t know anything about this–I.V., male, 60 years; Ireally don’t know. . . . What can be bad about such a test?–R., female, 78years). Others believed that any prevention strategy might help to en-hance the quality of life (What negative consequences can there be? Itslike a hearing test, you can sometimes find a problem before you areaware of it, and then you can prevent further deterioration–I.A., male,67 years).

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An additional belief mentioned as a barrier to undergoing the test wasbased on perceptions regarding the health care system.

I know several cases in which going to a physician ruined their lives.They were told they have cancer and afterwards they found they werenot sick at all, so why to go to do any test? (R.J., male, 55 years).

I don’t belief in any tests. All these tests are only experimental . . .(B.L., female, 65 years).

5. Health-Care Seeking Behavior

Almost all respondents reported that they would seek help only whenthe memory problems became so serious that they affected their dailyfunctioning. The following are examples of their statements:

I would do a memory assessment only if my memory problems af-fected my daily functioning, if I couldn’t function at work.

I would go [for an assessment] only if I start forgetting the names ofmy children, their birth dates, and so on.

Only if I felt I’d lost control of my life would I go to check my memory.Otherwise, if I can still function in my day-by-day life, I will not go.

Regarding the source of help, almost all participants stated that ifthey sought help they would go to their family physician first. Severalparticipants mentioned seeking help from their relatives (mainly thespouse) and from friends who had already visited a physician aboutmemory problems.

DISCUSSION

With the expansion of research confirming that what was considered“normal” age-associated memory impairment or mild cognitive impair-ment in fact represents very mild dementia (Goldman & Morris, 2001),the importance of detecting these problems at earlier stages increases.

Memory problems are first recognized by the person herself and bythose surrounding her. However, to ascertain whether the problems areindeed a prodrome of dementia rather than a variant of normal aging, astructured assessment should be performed by a professional. The deci-sion to take this action depends, according to the HBM, on a variety offactors, including perceived threat, beliefs and benefits, and barriers as-sociated to the action. The aim of the present study was to explore per-ceptions of memory problems in the elderly population and determinants

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of their willingness to seek help for these problems and perform a mem-ory assessment.

Findings from our study showed that several influences seem to acton the willingness to seek a memory status assessment. Perceptions ofsusceptibility were rooted in beliefs about causes of memory problems,while perceptions of severity were influenced mainly by the psycho-social consequences of memory problems.

Regarding causes of memory problems, we found that participantsbelieved memory problems to be an inevitable part of the aging process.This finding corroborates results of other studies examining opinions ofelderly persons regarding other medical conditions, such as heart dis-ease, arthritis, and sleep problems. In a study assessing 601 elderly per-sons aged 75 and over. Goodwin, Black, and Satish (1999) found thatfrom 28% to 62% of the participants viewed these chronic medical con-ditions as a normal part of aging.

The importance of this finding is twofold: first it shows that elderlypersons hold misperceptions or lack of knowledge regarding memoryproblems. Second, beliefs regarding several diseases as a normal part ofaging have proven associated with decreased use of preventive medicalservices (Goodwin et al., 1999). While the importance of providing ed-ucation and expanding the knowledge of formal and informal care-givers of elderly persons with dementia has been previously stressed(Werner, 2001), these points underline the importance of expanding ed-ucation about dementia among the general population also (Mundt, Kaplan, &Greist, 2001).

For the majority of the participants, the psychological consequenceswere the main impact of memory problems. Participants expressed shame,embarrassment and anxiety regarding their memory problems. Cogni-tive-behavioral models of stress show that feelings of distress, shameand anxiety are related to maladaptive behaviors and to increased dis-tress (Rimes & Salkovskis, 1998).

Findings from the present study showed that the majority of the par-ticipants expressed fatalistic beliefs regarding the benefits for seekingcare. Their thoughts expressed a feeling of “Why bother?” and “It’s notworth it.” While the benefits for seeking care for other diseases may bevery clear–cure of the illness, for a disease for which there is no cure thebenefits of help-seeking might be less obvious (Coon, Davies, McKibben, &Gallaher-Thompson, 1999). However, since fatalistic beliefs may en-hance elderly persons’ feelings of hopelessness and decrease their utili-zation of preventive services (Goodwin et al., 1999), extensive effortsshould be made to change these thoughts. Even if the disease cannot be

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cured, the importance of early diagnosis of dementia for slowing the de-terioration process and for enhancing the well-being of the elderly per-son and the caregivers should be stressed (Knopman et al., 2000; Jolley &Benbow, 2000). Indeed, participants who reported benefits in perform-ing a memory assessment expressed their thoughts in terms of slowingthe deterioration process and improving well-being by reducing anxietyand fears.

Psychological barriers such as fears and embarrassment were foundin this study to be very important. Not surprisingly, similar findings werefound in studies examining other screening behaviors (Lee, 2000; Baum,Friedman, & Zakowski, 1997; Aiken, West, Woodward, & Reno, 1994).

This study had several limitations. No medical confirmation of mem-ory problems was available. However, since the goal was to exploreperceptions, this limitation does not affect the validity of the findings.Additionally, as these data are qualitative in nature, we cannot quantifywhat proportion of the population maintains a specific belief or attitudeand the results can not be considered representative of the Jewish Israelipopulation as a whole. Further quantitative surveys should be under-taken to determine the extent to which these beliefs exist in the popula-tion.

However, these data do show important findings and identify areasfor potential intervention, such as encouraging the development of edu-cation strategies for elderly persons and for healthcare providers. It alsohighlights the utility of the HBM as the conceptual framework for un-derstanding the relationship between beliefs and help-seeking behavior.

As screening tests for medical problems in general and for Alzhei-mer’s disease in particular become more widely available, it becomesincreasingly important to understand the processes involved in the deci-sion whether or not to seek testing. Findings of this qualitative studyprovide first findings about these issues.

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