Illness representations of dementia: a scoping review

Figures & data

Table 3 Percentage changes of nocturia between the control and CPAP groups after CPAP therapy

	Control (n=14)	CPAP (n=21)	P-value
Δ Nocturia (%)	−5±55	−21±48	0.384
Δ TUO (%)	−4±29	4±46	0.515
Δ NUOP (%)	6±49	−26±27	0.040a
Δ NPI (%)	9±27	−21±30	0.005a

Notes: The percentage change of nocturia: Second time minus baseline nocturia divided by baseline nocturia.

a Statistical method: Independent t-test.

Abbreviations: CPAP, continuous positive airway pressure; NPI, nocturnal polyuria index; NUOP, nocturnal urine output; TUO, 24-hours total urine output.

Figure 1 Study selection flow diagram.

Table 1 Reviews of papers on IRs of dementia

Reference/year/country	Aims	Study design	Participants	Findings/results
Anderson et al, 2011/USA^Citation37	Study 1: To compare common-sense beliefs about the prevention of AD held by older and younger adults, and the connections between such beliefs and reports of preventive behaviors. Study 2: To manipulate young adults’ beliefs about AD preventability in order to determine causal relationships in the data	Quantitative; using vignette methodology	Study 1: 57 community-dwelling adults; mean age = 74 years; 82 students; mean age = 20 years. Study 2: 63 young adults who completed study 1	In study 1, it was found that compared with younger adults, older adults perceived themselves as less at risk, were more likely to believe that AD is preventable, and were more likely to report engaging in behaviors to prevent AD. Manipulating beliefs in Study 2 caused those who said that AD was preventable to see themselves as less at risk, report more prevention behaviors, and hold those with the disease more responsible for their fate.
Clare et al, 2016/UK^Citation24	To clarify the nature and implications of the IRs held by people with dementia using constructs from the SRM	Qualitative; semistructured interviews and quantitative; with questionnaires	Sixty-four people with dementia; mean age = 78.41 years; 64 primary caregivers; mean age = 66.48 years	Cluster analysis based on responses about identity and cause identified three profiles. “Illness” cluster participants perceived themselves as living with an illness and used diagnostic labels; “aging” cluster participants did not use diagnostic labels and viewed their difficulties as related to aging; and “no problem” cluster participants believed they did not have any difficulties. “Illness” cluster participants had better cognition and better awareness, but lower mood, and perceived more practical consequences than “aging” cluster participants.
Clare et al, 2006/UK^Citation15	To explore the way in which people who have received a diagnosis of dementia conceptualize their condition and its implications	Qualitative; semistructured interviews	Twenty-two people who had a diagnosis of mild-to-moderate AD or mixed dementia; mean age = 73.95 years	Representations covering illness identity, cause, course, cure/control, and consequences were successfully elicited, but diverged from professional constructs in some important respects. Most participants regarded their difficulties as part of normal aging, and one-third viewed their condition as stable or improving. Almost all participants described some positive coping strategies; participants who believed that nothing could be done to help were more likely to score above clinical cutoffs for depression or anxiety.
Giebel et al, 2017/UK^Citation39	To explore the perceptions of dementia (symptoms, causes, consequences, treatments) held by South Asians and to discern how these understandings vary by age and by the self-recognition of memory problems	Quantitative	Seventy-two younger and middle-aged adults aged 30–59 years; 55 older adults aged 60 years or older without memory problems; 33 older adults aged 60 years or older with subjective memory problems	Although all participants had similar understandings of the common symptoms of dementia (such as forgetting and confusion), perceptions of associated symptoms, causes, consequences, and preferred treatments of dementia varied among South Asians in different circumstances and in different age cohorts.
Glidewell et al, 2012/UK^Citation23	To explore whether one health care triad (a person with a diagnosis of dementia [PWD], their caregiver and primary care doctor) spoke about diagnosis in terms of IRs and to consider whether PWD IRs are understood	Qualitative; in-depth semistructured interviews	Three participants: person with a diagnosis of dementia (over 60 years old), his nominated informal caregiver (aged 67 years) and his doctor	All participants talked about IRs without prompting, with the exception of cause. There were areas where participants shared IRs, but also areas of discrepancy, which could have implications for health outcomes.
Gleason et al, 2016/USA^Citation19	To clarify processes promoting timely diagnosis of MCI for African Americans	Quantitative	187 African Americans; mean age = 60.44 years	Two commonsense model (CSM) factors influenced willingness to discuss MCI symptoms with providers. Anticipation of beneficial consequences and perception of low harm associated with an MCI diagnosis predicted a person’s willingness to discuss concerns about cognitive changes. No association was found between perceived controllability and causes of MCI and willingness to discuss symptoms with a provider.
Hamilton-West et al, 2010/UK^Citation33	1) To examine the potential utility of the CSM of IRs for understanding lay perceptions of dementia and predicting intentions to seek help in relation to possible signs and symptoms; 2) to develop a measure of dementia-related IRs.	Quantitative; using the vignette methodology	One hundred eighteen undergraduate psychology students; mean age = 20.27 years	Results indicated that cognitive deficits were more readily identified as dementia than noncognitive symptoms; these were commonly attributed to stress or depression. Participants were more likely to indicate an intention to seek professional help if they identified the problem in the vignette as dementia, perceived symptoms as severe, as having serious consequences, and as likely to be permanent, but less likely to do so if they identified the problem as stress or attributed symptoms to psychological causes.
Harman and Clare, 2006/UK^Citation16	To explore IRs and how these related to daily lived experience	Qualitative; semistructured interviews	Nine people who had a diagnosis of early-stage dementia; mean age = 65 years	Two overarching themes emerged: it will get worse, reflecting an understanding of dementia; and I want to be me, reflecting a desire to maintain one’s sense of identity. Participants faced a number of personal and interpersonal dilemmas.
Hurt et al, 2012/UK^Citation26	1) To assess differences in IRs, coping styles, and effect between people with SMC who have sought help and those who have not; 2) to determine the relative contribution of these factors to help-seeking; 3) to assess the role of personal experiences of another person with severe memory problems	Quantitative	Ninety-eight people with SMC, among them 60 help-seeking; mean age = 71.6 years and 38 nonhelp-seeking; mean age = 76.1 years	Both groups perceived SMCs to have a chronic timeline and a deteriorating course. Logistic regression revealed illness perceptions including social comparison and causal attributions to predict help-seeking behaviors. More general coping styles did not predict help-seeking.
Hurt et al, 2010/UK^Citation20	1) To investigate whether the dimensions drawn from illness perception CSM provide a valid model of perceptions held by patients with SMCs; 2) to develop a questionnaire to measure these perceptions.	Qualitative and quantitative	Thirty-two participants recruited from a memory clinic and community groups	The dimensions of illness perception measured by the IPQ-Revised were present in participant accounts of SMCs with the exception of timeline cyclical. The adapted measure (IPQ-Memory) showed good validity and reliability.
Lin et al, 2012/USA^Citation28	To describe beliefs about MCI in people diagnosed with the condition and examine the correlates (demographic and health) of those beliefs	Quantitative + cognitive interview	Thirty individuals diagnosed with MCI; mean age = 77 years	Participants correctly identified symptoms related to MCI; generally attributed MCI to aging, heredity, and abnormal brain changes; and believed MCI to be chronic, predictable, and controllable, causing little emotional distress. However, there were no consistent beliefs regarding the negative consequences of MCI or whether MCI was understandable. There were few significant correlates of beliefs. People with MCI are able to report their beliefs about their illness.
Lin and Heidrich, 2012/USA^Citation27	1) To describe the IRs of older persons with MCI; 2) to describe how older adults cope with MCI; 3) to examine the relationships between IRs and coping	Quantitative	Sixty-three older adults with MCI; mean age = 81.16 years	Participants endorsed an average of seven symptoms that they experienced and believed were related to MCI and an average of seven potential causes of MCI. Participants tended to believe MCI was chronic, not cyclic, and controllable, but they differed in their beliefs about the consequences, understandability, and emotional impact of MCI. Participants used many dementia prevention behaviors and memory aids, some problem-focused and emotion-focused coping strategies, and a few dysfunctional coping strategies. Cluster analysis identified three clusters of beliefs about MCI: “few symptoms and positive beliefs,” “moderate symptoms and positive beliefs,” and “many symptoms and negative beliefs.” Those in the “many symptoms and negative beliefs” cluster had significantly more negative beliefs about the consequences, unpredictability (cyclic timeline), and emotional impact of MCI than those in the other clusters. Participants in the “few symptoms and positive beliefs” cluster used significantly fewer memory aids, problem-focused coping strategies, emotion-focused coping strategies, and dysfunctional coping than those in the other two clusters.
Lingler et al, 2016/USA^Citation21	To characterize illness perceptions among persons with MCI (PWMCI) and their family care partners, and to examine whether PWMCI’s and their family care partners’ illness perceptions were associated with their own, as well as the other member of the dyads emotional reactions to MCI	Quantitative	Sixty persons with MCI; mean age = 71 years; 60 family care partners; mean age = 64.2 years	Compared with family members, PWMCI perceived MCI to be less potentially serious and more within their personal control, but dyads otherwise shared similar perceptions of MCI. Among PWMCI, perceived seriousness of the potential consequences of MCI was the only dimension found to be significantly correlated with emotional distress. For family members, increased MCI-related emotional distress was significantly associated with perceptions of MCI as potentially serious, permanent, or confusing. A dyadic analysis showed that MCI-related emotional distress, in both PWMCI and family members, was linked to the PWMCI’s perception of the seriousness of MCI.
Lingler et al, 2006/USA^Citation17	To examine the experience of living with and making sense of the diagnosis of MCI from the patient’s perspective	Qualitative; in-depth, semistructured interviews	Twelve older adults with amnestic or nonamnestic MCI; mean age = 76 years	Understanding and coming to terms with the syndrome, or assigning meaning, constituted a fundamental aspect of living with a diagnosis of MCI. This process comprises interrelated emotional and cognitive dimensions. Participants employed a range of positive, neutral, and negative phrasing in order to depict their emotional reactions to receiving a diagnosis. Cognitive representations of MCI included both prognosis-focused and face-value appraisals. Expectations of normal aging, personal experience with dementia, and concurrent health problems were key contextual factors that provided the backdrop against which participants assigned meaning to a diagnosis of MCI.
Matchwick et al, 2014/UK^Citation25	To explore cause and control IRs in older adults with AD	Qualitative; semistructured interviews	Six individuals diagnosed with AD; mean age = 77 years	Three main themes emerged indicating that participants were trying to make sense of their AD by comparing it with their previous experience of physical illnesses. All participants acknowledged their diagnosis of AD, but engaged with it in a graded way because of a lack of tangible diagnostic evidence. Participants developed pragmatic emotional responses to their situation.
Moniz-Cook et al, 2006/UK^Citation18	To understand the meanings of dementia held by people awaiting assessment at a memory clinic and their families	Qualitative; semistructured interview	Eighty-four persons who underwent assessment at a memory clinic; mean age = 76.7 years and their 84 family members; mean age = 70 years	Most of the older people awaiting assessment described their lives as having purpose, meaning, and pleasure for themselves and others. However, these individuals, who later received a diagnosis of dementia, and their family members, perceived dementia as a loss of mind, associated it with loss of bodily functions (continence and mobility), and considered that it would negatively affect personal relationships and pleasure. For many, the consequences of dementia were predicted to be family upset, inactivity, and an inevitable relocation to a care home. Most of the individuals and their family members showed a mutual concern for each other’s future well-being.
Parveen et al, 2017/UK^Citation36	To explore perceptions of dementia and awareness/use of services among people from British Indian, African and the Caribbean, and East and Central European communities	Discussion groups regarding dementia; awareness-raising road shows; and multiple choice quiz	Sixty-two British Indian, 50 African and Caribbean, and 63 East and Central European	Three main themes are presented: perceptions of dementia, awareness of dementia in the wider family and community, and awareness and use of services. The findings suggest that although groups attributed a biological basis for memory loss, a number of misconceptions prevailed regarding the cause of dementia. Groups also made use of religion, as opposed to medical health care services, as a form of personal and treatment control. Seeking help from health care services was hindered by lack of awareness of services, and culturally specific barriers such as language.
Quinn et al, 2017/UK^Citation29	To explore IR components (label, cause, control, and timeline) in caregivers of people with dementia	Qualitative; semistructured interviews	Fifty caregivers of people with dementia; mean age = 66.49 years	The majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, aging, lifestyle, life events, and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time.
Quinn et al, 2018/UK^Citation38	To develop and validate a brief measure called the Representations and Adjustment to Dementia Index (RADIX)	Quantitative and qualitative	Three hundred eighty-five community-dwelling people with mild-to-moderate dementia; mean age = 76.25 years	The RADIX demonstrates acceptable psychometric properties and has proven to be a useful measure for exploring people’s beliefs about dementia.
Roberts and Connell, 2000/USA^Citation22	To examine attitudes, beliefs, and experiences regarding AD among patients’ first-degree relatives	Quantitative	Two hundred thirty-two children and siblings of people with AD; mean age = 53.5 years	Relatives were knowledgeable about AD, had an accurate sense of their disease risk, and endorsed etiologically significant factors as causes. Nonetheless, many participants held misconceptions about AD and what may be unrealistic expectations for future treatment developments. Levels of perceived distress and threat were generally high and associated with the female gender and younger age. AD represented the foremost health concern of approximately one-third of first-degree relatives.
Roberts et al, 2003/USA^Citation34	To investigate differences between African Americans and whites in their beliefs, knowledge, and information sources regarding AD	Quantitative	Four hundred fifty-two white and African American; mean age = 47 years	African Americans and whites were generally similar in their beliefs about common symptoms, prominent risk factors, and the effectiveness of treatments for AD (although whites expressed greater certainty in these beliefs than African Americans). In comparison with whites, African Americans showed less awareness of facts about AD, reported fewer sources of information, and indicated less perceived threat of the disorder.
Shinan-Altman et al, 2014/Israel^Citation31	To examine and compare AD IRs among social workers and nurses	Quantitative	One hundred twenty-two social workers and 205 nurses; mean age in both groups = 41 years	Participants perceived AD as a chronic disease associated with severe consequences. Nurses attributed more psychological reasons to AD than social workers. Nevertheless, social workers perceived AD as being more chronic and having more severe consequences compared with nurses. Despite some similarities, differences were found between the social workers and nurses’ AD IRs.
Shinan-Altman et al, 2016/Israel^Citation32	To examine the relationship between AD IRs and burnout among social workers and nurses, based on the self-regulatory model	Quantitative and qualitative	In the quantitative method, 327 social workers and nurses; mean age = 40.83 years. In the qualitative method, eight social workers and nurses; mean age = 41 years	In the quantitative method, emotional representations were associated with burnout, while only some of the cognitive IRs were associated with burnout. In the qualitative method, AD characteristics were perceived as affecting participants on both personal and professional levels; the participants expressed negative feelings toward AD and stated that these perceptions and feelings had led them to burnout.
Shinan-Altman and Werner, 2017/Israel^Citation35	To examine the relationship between help-seeking for early detection of AD and lay persons’ beliefs and emotional reactions toward AD	Quantitative	Two hundred thirty-six community-dwelling adults; mean age = 59 years	Multiple regression analyses showed that AD consequences and perceived threat were the main predictors of help-seeking for the early detection of AD, explaining 9.2% of the variance.
Lo Sterzo and Orgeta, 2017/UK^Citation30	To describe IRs in dementia caregiving and examine the relationship between illness perceptions and caregivers’ sense of coherence	Quantitative	One hundred fifty-five family caregivers of people with dementia, age range: 26–82 years	Regression analyses indicated that after controlling for demographic factors, burden, and psychological distress in caregivers, illness coherence and emotional responses to the disease independently contributed toward explaining variance in caregivers’ sense of coherence.

Abbreviations: AD, Alzheimer disease; IPQ, Illness Perception Questionnaire; IRs, illness representations; MCI, mild cognitive impairment; SMC, subjective memory complain; SRM, Self-Regulation Model.

Table 2 Assessment instruments of dementia IRs

Assessment	No of items	IR dimensions	Rating scale	Reliability	Validity
Revised IPQ (IPQ-Revised) and the Brief IPQ Anderson et al, 2011^Citation37	22	Controllability, controllable causes, uncontrollable causes, controllable risk factors, uncontrollable risk factors	1= strongly disagree to 5= strongly agree	Cronbach’s alpha =0.79	–
Revised IPQ (IPQ-Revised) Shinan-Altman and Werner, 2017;^Citation35 Shinan-Altman et al, 2014, 2016 ^Citation31,Citation32	68	Identity, causes, timeline, consequences, control, coherence, cyclical, timeline, and emotional representations	For the identity dimension: 0= no, 1= yes; for the other dimensions: 1= strongly disagree to 5= strongly agree	Cronbach’s alpha ranged from 0.65 to 0.90	–
Brief IPQ Lo Sterzo and Orgeta, 2017^Citation30	8	Consequences, timeline, personal control, treatment control, identity, concern, emotional representations, and coherence	0–10 varies	–	–
Revised IPQ (IPQ-Revised) Lingler et al, 2016^Citation21	32	Timeline chronic, seriousness, personal control, coherence, timeline cyclical, and emotional upset	Five-point Likert scale from strongly disagree to strongly agree	Cronbach’s alpha ranged from 0.82 to 0.90	–
IPQ-Memory Hurt et al, 2010, 2012^Citation20,Citation26	85	Identity, timeline (acute/chronic), timeline (stability/decline), personal control (blame), personal control (helplessness), consequences, emotional representation, coherence, treatment control, social comparison, and cause	For the identity dimension: 0= no, 1= yes; for the other dimensions: 1= strongly disagree to 5= strongly agree	Cronbach’s alpha ranged from 0.68 to 0.89	Concurrent validity; discriminant validity
IPQ-MCI Lin and Heidrich, 2012;^Citation27 Lin et al, 2012 ^Citation28	97	Identity, causes, consequences, chronic timeline, cyclic timeline, personal control, treatment control, and coherence	For the identity and cause dimensions: 0= no, 1= yes; for the other dimensions: 1= strongly disagree to 5= strongly agree	Cronbach’s alpha ranged from 0.76 to 0.90	–
IPQ and questions adapted from the Barts Explanatory Model Interview (BEMI) Hamilton-West et al, 2010^Citation33	13 items for causes	Causes, timeline, consequence, identity, and Cure–control	Seven-point Likert scale, high scores indicating greater agreement (expect the timeline dimension)	Cronbach’s alpha ranged from 0.74 to 0.87	Face validity
Barts Explanatory Model Inventory for dementia (BEMI-D) Giebel et al, 2017^Citation39	197 perceptions	Symptoms, causes, consequences, and treatments	Varies	–	Face valid
A description of the MCI diagnosis followed by survey questions Gleason et al, 2016^Citation19	54	Causes of MCI; consequences of MCI – potential harm; consequences of MCI – potential benefits; controllability of MCI	Four-point, bidirectional Likert scale, ranging from 1 (definitely no or strong disagreement) to 4 (definitely yes or strong agreement)	Cronbach’s alpha ranged from 0.71 to 0.96	–
IPQ with adaptations Roberts and Connell, 2000^Citation22	27	Cause, treatment beliefs, distress, and perceived threat	Varies	Cronbach’s alpha ranged from 0.63 to 0.88	–
Representations and Adjustment to Dementia Index (RADIX) Quinn et al, 2018^Citation38	23	Identity, cause, timeline, control, and consequences	The identity and cause questions were open-ended; timeline, control, and consequences were rated on a four-point Likert scale	Cronbach’s alpha ≥0.70/test–retest	Each subscale was validated separately

Abbreviations: IPQ, Illness Perception Questionnaire; IRs, illness representations; MCI, mild cognitive impairment.

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