Introduction: Dementia diseases are still incurable, and in order to assist in living well with the disease, researchers are increasing their attention to the value of control beliefs. Control beliefs are associated with coping and psychological well-being; however, knowledge on how they relate to well-being outcomes in people with dementia is limited. This review aimed to synthesize knowledge about control beliefs in this group to guide future interventions and research. Method: A systematic search of 6 databases (MEDLINE, CINAHL, PsychINFO, AgeLine, Embase, and the Cochrane Library) with broad search terms related to dementia, control, and coping was conducted. Studies that investigated people with a confirmed dementia diagnosis and that used a questionnaire to measure control beliefs quantitatively were included. Results: Eighteen studies were identified, examining self-efficacy, personal control/mastery, or locus of control. The studies varied in aim and design, with fair to good methodological quality. However, 10 studies included <50 participants with dementia, leaving findings unreliable due to low power. Participants with dementia in the mild to moderate stages were included, with average age in the seventies. Except for one validation study, the control belief questionnaires had not been validated for people with dementia. Conclusion: There is a lack of knowledge about control beliefs among people with dementia, due to few and low-powered studies. Although we cannot conclude regarding control beliefs, our findings support the feasibility of quantitative research on control beliefs among people with dementia and we recommend that they be included in this type of research.

No cure or treatment that can delay the progression of any dementia disorders are yet available, and due to an increase of older adults worldwide, the number of people with dementia will rise substantially in the years to come [1]. Over time, dementia leads to decreased ability to function cognitively, socially, and independently in everyday life. A growing interest regarding how to live and cope with dementia is emerging [2]. Knowledge about how people cope with dementia has value for implementing interventions that target adaptive coping strategies for activities of daily living as well as behavioral and psychological symptoms due to the disease.

Control beliefs has been an area of research for more than half a century in social, personality, and clinical psychology. Experiencing a sense of control has repeatedly been shown to be beneficial when coping with a variety of health problems [3, 4]. Many control constructs have been developed [5], and the most prominent are locus of control, learned helplessness, mastery, and self-efficacy. Although defined as distinct constructs, each definition attempts to explain how a person views his/her abilities, effort, or expectations of realizing an outcome. Indeed, several constructs and definitions have been proposed as indicators of the same underlying personality construct [6].

Studies have shown control beliefs to be beneficial for coping [7, 8]. In health research, for example, perception of control has been found to affect one’s ability to engage in positive health behaviors and adjust to a demanding situation [9]. In the 1970s, Langer and Rodin [10] demonstrated how a perception of control can positively impact upon well-being among nursing-home residents. In their intervention study, residents who were given more responsibilities in daily decision-making reported to be happier and appeared more active than that of a comparison group given the same activities but with a fixed time schedule. A positive difference was measurable even 18 months after the intervention. In addition, the study reported that the persons in the intervention group tended to live longer than those in the control group [11]. This study bridged the research on control among older people and control in health-related situations and helped shape subsequent gerontological research [8].

Control beliefs among older adults have been associated with the same tendencies as found among younger adults; less perceived control negatively affects well-being, and more perceived control leads to positive outcomes and overall successful aging [4, 8]. In addition, among healthy older people, more perceived control has been associated with greater use of effective strategies to improve memory and to maintain cognitive functioning [4, 7, 12]. According to Bandura [13], a person will invest more effort in a task when the outcome is believed to be attainable. As control beliefs are important to both mental well-being and cognition, they are likely important elements of psychosocial interventions for people with dementia. Knowledge about how control beliefs function among people with dementia could assist informal caregivers and health-care personnel in helping this group to cope with their progressive disease.

Research Aim

The aim of the present review was to synthesize knowledge on control beliefs among people with dementia by performing a systematic search of relevant quantitative research studies. By doing so, we wished to illuminate the present knowledge base and help guide future research on this topic.

Selection of Eligible Studies

A systematic, computerized search of quantitative research literature was conducted in the MEDLINE, CINAHL, PsychINFO, AgeLine, Embase, and the Cochrane Library databases. The search was conducted by a research librarian at 3 time points, April 2019, October 2019, and January 2021. The second and third searches were restricted to articles published after January 2019.

The search strategy included Medical Subject Headings (MeSH), keywords, and text words for the following constructs: dementia, control, and coping. Perceived control can be viewed as an aspect of coping, and it is possible that some researchers have examined coping with the use of a control instrument; hence, coping was included in order to increase the likelihood of incorporating all relevant research. Control beliefs have been defined in numerous ways [5]; thus, we performed a search with a variety of search terms in order to encompass relevant studies (see Appendix 1 for an overview of dementia search terms and Appendix 2 for control and coping search terms).

The inclusion criteria in this review were research conducted by including persons with a confirmed dementia diagnosis, who had responded to a control belief instrument. Additionally, the research had to be original and peer-reviewed, have a quantitative design, and published after the year 2000. Reviews, protocols, conference abstracts, posters, or theoretical research were excluded as were articles in a language other than English. We also excluded articles that studied persons with dementia and mild cognitive impairment (MCI) as a single group, since we wished to have a clear focus on dementia.

The selection of relevant articles was performed in dyads to reduce the risk of oversights. One author was a member of every dyad throughout the selection process to ensure consistency. After an initial elimination of duplicates by EndNote, the selection procedure was performed as follows: First, all titles were divided into 3 parts and delegated at random to the 3 pairs (of the co-authors). Article titles that clearly did not meet the inclusion criteria were discarded. Disagreements within the dyads were resolved by consulting the other co-authors. The procedure was repeated when delegating and reading the abstracts, skimming the full articles, and, finally, when comprehensibly reading the remaining articles. Last, a search for additional articles was conducted by examining the reference lists of all included articles.

Quality Assessment

A quality assessment of each article was performed using the critical appraisal tool developed by Hawker et al. [14]. This tool is applicable to all study designs and comprises 9 areas for review: Abstract and Title; Introduction and Aims; Method and Data; Sampling; Data Analysis; Ethics and Bias; Results; Transferability and Generalizability; and Implications and Usefulness. Each area is given a score between 1 and 4 based on a set of guiding criteria; the minimum sum score is 9 and the maximum is 36. A higher total score indicates better quality. Two authors scored the articles separately, and minor disagreements of one point were averaged. No articles were excluded based on their quality assessment. The appraisal tool by Hawker et al. [14] allows for an assessment that focuses on the quality of each research article regardless of study design, meaning that a cross-sectional study can receive a score equal to a randomized controlled trial.

The 3 electronic searches yielded a total of 7,005 articles (final search performed in February 2021). EndNote was used to eliminate duplicates, resulting in 4,061 articles to be assessed for eligibility by the authors. After elimination first by a review of titles, then by abstracts followed by full-text readings, 16 articles remained. Two additional articles were found through examination of reference lists; thus, 18 articles were included in this review. Figure 1 shows the review process.

Fig. 1.

Overview of the review process.

Fig. 1.

Overview of the review process.

Close modal

Methodological Quality of the Studies

As shown in Table 1, the studies had good methodological quality, with 12 studies receiving a score above 30, and no studies below 20. The studies were, in general, well-justified with good methodological considerations, clear results and discussion sections, and appropriate conclusions regarding implications and usefulness. However, only one study used a control belief questionnaire validated for people with dementia and 10 included <50 participants with dementia.

Table 1.

Quality assessment of studies

Quality assessment of studies
Quality assessment of studies

Study Designs of the Articles

Of the 18 included articles, 11 were intervention studies, of which 7 were pilot studies. The remaining 7 articles were observational studies, of which 2 focused on scale psychometrics. Only 2 intervention studies examined control belief as the primary outcome [15, 16] and another 2 as part of the secondary outcomes [17, 18]. The remaining intervention and observational studies included control beliefs as exploratory outcome measures or as dependent measures without further specifications [19-32].

Heterogeneity in terms of aim, study design, sample size and outcome measures deemed a non-statistical synthesis of the results appropriate. Table 2 shows an overview of the study details.

Table 2.

Overview of aims, control belief constructs, and study findings

Overview of aims, control belief constructs, and study findings
Overview of aims, control belief constructs, and study findings

Study Settings

The participants’ home was the research setting in 9 studies [16-19, 21, 23, 28, 30, 31], while 3 were performed in recreational facilities, adult day care or senior centers, or in an assisted living facility [20, 24, 29]. One study was performed in a memory clinic [15], one allowed participants to choose between home or memory clinic [26], and another collected data at participants’ home, day care, or memory clinic [27]. Finally, 3 studies did not specify research setting [22, 25, 32].

Participants

Although the age range of the participants with dementia varied from 52 to 96 years, mean age in all studies was in the 70s. Four studies had an age specification as part of their inclusion criteria, with a minimum age varying between 55 and 65 years [16, 17, 25, 27]. See Table 3 for an overview of demographics regarding participants with dementia. Demographics of participating caregivers or comparison groups are not presented in this review.

Table 3.

Demographics of participants with dementia

Demographics of participants with dementia
Demographics of participants with dementia

Dementia Diagnosis

All studies in this review included participants with a confirmed dementia diagnosis; however, only 10 reported which diagnostic criteria had been used [15-18, 22, 25, 27, 28, 30, 32]. Five studies [15, 18, 27, 28, 30] diagnosed dementia according to the International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10) criteria [33], one study [32] used the Diagnostic and Statistical Manual of Mental Disorders, 4th edition (DSM-IV) criteria [34], and 2 studies [16, 22] based the dementia diagnosis on the Clinical Dementia Rating Scale (CDR) [35, 41]. Two studies based the dementia diagnosis on consensus criteria. One [25] used the criteria established by the National Institute of Neurological and Communicative Disorders and Stroke/Alzheimer’s Disease and Related Disorders Association [36], and the other study used the criteria established by the Movement Disorder Society [37, 38] and by the Dementia with Lewy Bodies consortium [39].

Where reported, the percentage of participants diagnosed as having Alzheimer’s disease (AD) ranged from 47 to 89% [18, 23, 25, 27, 28, 30, 31]. See Table 3 for overview of prevalence of diagnoses in individual studies. If specific dementia diagnoses were among the inclusion criteria, AD, vascular dementia (VD), or mixed AD/VD were the most commonly used diagnoses [15, 18, 19, 21, 25, 26, 28, 31]. One study only included participants with dementia due to Parkinson’s disease (PD) or Lewy body disease [17]. The remaining studies either included all types of dementia [23, 27, 30] or did not specify the etiological dementia diagnosis [16, 20, 22, 24, 29, 32].

Dementia Severity

Degree of dementia severity was an inclusion criterion in 11 studies, all of which recruited participants with mild to moderate dementia severity [15, 16, 18, 21-23, 25, 28, 30-32]. A definition of mild to moderate severity was presented in 9 studies, using 8 different types of criteria. Mini-Mental State Examination (MMSE) score [40] was used in 4 studies, and mild to moderate dementia was defined as either ≥15 [28, 30] or ≥18 [18], or ≥20 [15]. The CDR [35, 41] was used in 3 studies, indicating either very mild dementia with a score of 0.5 [22], mild dementia with a score of 0.5–1.0 [16], or mild to middle stage dementia with a score of 0.5–2.0 [21]. One study used a score of ≥12 on the Montreal Cognitive Assessment (MOCA) scale [42] to indicate mild to moderate dementia [31], and the final study used the DSM-IV to define mild to moderate dementia [32]. A further 3 studies also had cognitive assessment requirements as part of their inclusion criteria, but without indicating their purpose [17, 24, 26].

Constructs of Control Beliefs

Although many control constructs are described in the literature [5], self-efficacy [13] was most frequently applied in the included studies of this review. In all, 7 different scales measuring self-efficacy were used in 14 studies. Eleven studies measured self-efficacy at 2 or more time points [15-18, 20, 22-24, 29, 31, 32]. The General Self-Efficacy Scale (GSES) [43] was used in 8 studies and the remaining 6 self-efficacy scales [56-61] in one study each (see Table 2). The Mastery scale developed by Pearlin and Schooler [44] was used in 3 studies to examine personal control [19, 21, 26]. One study examined locus of control using the Locus of Control of Behavior scale developed by Craig et al. [45].

As seen in Table 2, internal consistency/scale reliability (Cronbach’s α) of the control instruments was reported in 6 articles [19, 21, 23, 26-28]. One study’s primary aim was to assess the applicability of the control belief scale for use among persons with dementia [27], while no other studies reported or did any validation of the control belief scales for the included study population. However, no studies reported methodological difficulties with the use of the control belief instruments.

Findings Regarding Control Beliefs

Five studies examined control beliefs using cross-sectional data. Clare et al. [30] examined the experience of discontinuity in the subjective experience of one self and found that this was associated with lower scores on self-efficacy. Fankhauser et al. [25] found that motivational processes (self-efficacy and activity, motivation, and decision regulation) were associated with depression and furthermore that motivational processes, not degree of social support, predicted depression in a regression analysis. In the study by Lamont et al. [28], high self-efficacy was found to be associated with increases on 3 different living-well scales. However, the effect sizes were reduced when accounting for shared variance with optimism and self-esteem, considered by the authors to be 2 related concepts. Burgener and Berger [21] examined differences in experiences of stigma among participants with AD and PD. They found that personal control was lower among those with AD and only associated with stigma among those with dementia due to PD. Finally, Halse et al. [27] found more external locus of control to be associated with more depressive symptoms, but no association between locus of control and cognitive function.

Two descriptive longitudinal studies examined personal control as one of several quality of life variables for participants with dementia. Burgener and Twigg [19] found improvements in personal control over an 18-month period; however, the main hypothesis that such a change could be predicted by caregiver factors was not supported. Burgener et al. [26] examined effects of perceived stigma on quality of life variables and found that personal control was associated with both the social isolation and internalized shame stigma subscales. This was more prominent among participants living in urban areas in the USA and those of African American decent.

The 11 intervention studies reported overall positive effects of the various interventions; however, only 5 found these effects to be potentially associated with changes in control beliefs. Examining the efficacy of an early stage memory loss support group, Logsdon et al. [24] found that the intervention was associated with increased quality of life and that this increase was associated with improved self-efficacy. Quinn et al. [15] found that self-efficacy effect sizes increased in the group receiving a self-management intervention compared to that in a group receiving treatment as usual. This increase persisted 6 months post-intervention, along with improved effect size increases in depression and well-being scores. Statistical analysis was not performed due to small sample size. Hindle et al. [17] found that goal-oriented cognitive rehabilitation was superior regarding self-efficacy at 2 months to both relaxation therapy and treatment as usual, but the effect was not sustained at the 6-month follow-up. Two small pilot studies also reported on improved self-efficacy after interventions [22, 32]. In their process of translating and validating a cognitive stimulation therapy manual using 13 participants with dementia, Werheid et al. [32] found that self-efficacy increased from pretest to posttest. Schmitter-Edgecombe et al. [22] found that their 5 participants with dementia showed an increased self-efficacy regarding beliefs about obtaining support from family or friends, one of 3 subscales on the Coping Self-Efficacy Scale.

Finally, 6 studies reported effective interventions, but found no changes in control beliefs. Clare et al. [18] found that goal-oriented cognitive rehabilitation was effective with regard to improved everyday functioning; however, self-efficacy did not change. In a large study evaluating effect of an exercise intervention of physical function, activity, well-being, and exercise self-efficacy, Regan et al. [29] reported increases on all outcomes except self-efficacy. Stockwell-Smith et al. [16] examined effectiveness of a psychosocial intervention for care recipients and carer dyads using both quantitative and qualitative methods. Statistical differences on self-efficacy were not found; however, qualitative reports postintervention indicated increased self-efficacy regarding identifying and accessing community support. Roberts and Silverio [23] examined a 4-session educational and support program. Although the 37 participants with dementia increased their use of several measured coping and health behaviors, no statistical changes were found regarding coping self-efficacy or psychosocial adjustment to the illness. In a small study including 19 participants with dementia, Leroi et al. [31] examined effectiveness of a sensory intervention to improve quality of life for participants with hearing and/or vision impairment. Mean increases in quality of life were reported as clinically significant, but only slight changes were found regarding self-efficacy. Finally, Fitzsimmons and Buettner [20] concluded that their group interventions target health promotion as a success, but mean self-efficacy scores remained stable.

To the best of our knowledge, this is the first systematic review conducted of scientific studies investigating constructs of control beliefs among people with dementia. We found 18 studies that met our inclusion criteria, examining a total of 3 different constructs using 9 different control belief scales. The studies had a wide variety of research aims and designs, with good methodological quality. However, 7 studies were pilots, and as many as 10 studies included <50 participants with dementia. Low-powered studies reduce the possibility of detecting effects, increase possibility of false positives, or may inflate effects sizes of valid effects.

Most of the included studies examined control beliefs in relation to an intervention. Knowledge about perceived control is valuable when designing and implementing psychosocial interventions to support and enhance coping with a dementia disorder. Regardless of the idiosyncratic ways dementia can evolve, there is inevitably a fall in functioning in daily activities, in social activities, and in autonomy. A common coping mechanism is withdrawal from that which has become difficult, leading to reduced social network, increased isolation, and increased feelings of helplessness. Some become overwhelmed and experience symptoms of anxiety and depression [46]. Intervention programs should preferably be offered before this happens.

The interventions reported in this review were diverse, aiming to examine feasibility of cognitive rehabilitation, effectiveness of physical exercise, or effectiveness of addressing hearing and vision difficulties [17, 18, 22, 29, 31]. Other interventions aimed to improve a variety of quality of life variables [15, 20, 23, 24, 32] or to increase the use of support services [16]. Two studies had control beliefs as a primary outcome [15, 16]. Both considered their intervention effective, and one found indication of increased self-efficacy [15].

Five studies had follow-up measures after 6 or more months from baseline. One study reported an increase in personal control over an 18-month period [19], while the other 4 with a timespan of 6 months or more did not find control belief changes [16-18, 26]. However, most studies had a shorter time frame with measures done at baseline and again typically after 2 or 3 months. Dementia progresses differently for all individuals, but in the mild stages of the disease, it can be assumed that the changes are slow and minor. More longitudinal data on the associations between cognitive status and control beliefs are thus needed to examine whether cognitive decline affects a person’s perception of control. The included studies could not answer this question because of too short follow-up time and being low-powered.

By observing baseline data, it appears that level of perceived control among people with dementia is comparable to other populations without dementia. The GSES was used in 7 studies, with mean baseline scores ranging from 27.2 to 33.2 [15, 17, 18, 20, 28, 30, 32]. Though not comparable in age, a similar GSES mean of 29.46 (SD 5.33) was reported in a large study with 19,120 participants from 25 countries [47]. Furthermore, the descriptive longitudinal studies measuring personal control with the Mastery scale found mean baseline scores ranging from 23.5 to 25.5. Similar means have been reported among middle-aged adults [48] and older adults without dementia [49]. Although caution is needed in interpreting the results of the included studies due to small sample sizes, it indicates that self-efficacy and personal mastery levels among people with dementia resonate other populations. This is encouraging, from both methodological and coping perspectives.

Studies reporting cross-sectional results found several important associations of control beliefs in people with dementia that are useful for our understanding of coping with the diseases. Two studies examining self-efficacy found that a higher level was associated with less depression and better quality of life [25, 28], resonating findings among older people with depression [8, 50]. Compared to people with PD, people with AD reported less personal control and scored higher on the internalized shame subscale of a stigma measure [19]. Finally, low self-efficacy was associated with experiencing a discontinuity in their sense of self because of the dementia disease [30]. This feeling of discontinuity was associated with several negative measures, such as higher scores on loneliness and depression and lower scores on quality of life.

The results found in this review support conclusions made by others, for example, that persons with dementia are prone to thoughts of helplessness, loss of identity, and embarrassment, particularly in the mild stages of the disease process [46, 51]. People with dementia may also be prone to lowered expectations and prejudice by those in their surroundings, and so-called dementia-ism can be a source of stigma and negative self-stereotypes [52]. Addressing low control expectations has been shown to positively affect memory training among older adults with cognitive deficits [53, 54]. Health-care personnel and informal caregivers assisting people with dementia should focus on control beliefs to enhance coping. Supporting people with dementia to reach own goals by focusing on increasing their perception of control could lead to empowering effects and may thereby reduce some of the negative psychological effects of the disease.

Apart from the study by Halse et al. [27] that validated the Locus of Control of Behavior Scale for people with dementia, none of the studies reported having validated the control belief questionnaire for the current population. Still, the studies did not report difficulties with the use of such questionnaires. Depending on the degree of cognitive deficit, people with dementia may be expected to struggle with questions that require judgments on a Likert-type scale, which is commonly used in such questionnaires. One could speculate that they would answer arbitrarily if they did not understand the questions or how to respond. This should be detectable in an internal reliability analysis, and 7 studies reported a Cronbach’s alpha score ranging from 0.69 to 0.90. This indicates that reliable data regarding control beliefs using quantitative measures can be acquired in this manner, which is supported by the study of Halse et al. [27]. Therefore, we suggest that persons with dementia should be included in this type of research as their voices are important and informative.

Notably, the 18 studies tended to include participants with mild to moderate dementia, and most of those included had either AD, VD, or a mix of these diseases. Although there is an overall lack of knowledge regarding control beliefs among persons with dementia, studies should also include participants in the severe stages of the disease and with other dementia diagnoses. Furthermore, studies focusing specifically on subgroups with comorbidities such as depression or anxiety would likely give further knowledge on who and how a person with dementia could benefit from a focus on control beliefs to increase coping effectiveness.

This review applied a broad search strategy regarding terms to cover both dementia and control beliefs, and thereby, it should capture most of what has been published in English and in peer-reviewed journals. Furthermore, we applied a strict definition of dementia, meaning that studies mixing our target group with people with mild cognitive impairment were excluded. This was done in order to promote the generalizability of our findings, a necessity also advocated by others [55]. However, particularly due to the exclusion of non-English articles, there may exist additional research on the topic that is missing in this review.

Understanding how experiences of control influences coping can make it easier for informal caregivers and health-care personnel to give effective support to the person with dementia, allowing them to live independently longer and thereby prevent premature burden on society. This systematic review revealed that too few and small studies exist to conclude on the relations between perceived control and dementia; thus, there is a need for more robust studies. However, our findings support that quantitative research on control beliefs among people with dementia is feasible, and people with dementia are recommended to be included in this type of research. The rising interest in this field of knowledge is encouraging, as it may enlighten best practice and help in the development of effective interventions so that people with dementia can cope and live well with their disease.

We would like to acknowledge the staff at the library at the Norwegian National Advisory Unit on Ageing and Health, particularly Katarina Einarsen Enne, for invaluable assistance in performing the systematic search for this review.

The study is exempt from Ethical Committee approval as it is a review based on already published research data.

The authors have no conflicts of interest to declare.

This research was internally founded by the Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Norway.

I.H., K.E., G.H.B., G.S., and M.L.B. contributed to the design and/or analysis and/or interpretation of data and have contributed in the drafting, revising, and final version of the manuscript. They all agree to be held accountable for the content of the manuscript and have signed an Author Submission Statement declaring this.

Search words for dementia in different databases

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Search words for control and coping in different databases

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