10 1016@j Dadm 2018 02 006

Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring - (2018) 1-16
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2 SPECIAL SECTION: State of the Field: Advances in Neuroimaging from the 2017 Alzheimer’s 57
3 Imaging Consortium 58
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Advances in Alzheimer’s imaging are changing the experience of 61
7 Alzheimer’s disease 62
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10 Shana D. Stitesa,*, Richard Milneb, Jason Karlawisha,c 65
Q14
11 a
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Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA
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b 67
Department of Public Health and Primary Care, Institute of Public Health, University of Cambridge School of Clinical Medicine, Cambridge, UK
13 c
Department of Medicine, University of Pennsylvania, Philadelphia, PA, USA
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Abstract Neuroimaging is advancing a new definition of Alzheimer’s disease (AD). Using imaging bio-
17 72
markers, clinicians may begin to diagnose the disease by identifying pathology and neurodegenera-
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tion in either cognitively impaired or unimpaired adults. This “biomarker-based” diagnosis may
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allow clinicians novel opportunities to use interventions that either delay the onset or slow the pro-
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gression of cognitive decline, but it will also bring novel challenges. How will changing the definition
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of AD from a clinical to a biomarker construct change the experience of living with the disease?
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Knowledge of AD biomarker status can affect how individuals feel about themselves (internalized
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stigma) and how others judge them (public stigma). Following a review of AD stigma, we appraise
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how advances in diagnosis may enable or interrupt its transfer from clinical to preclinical stages and
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then explore conceptual and pragmatic challenges to addressing stigma in routine care.
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Ó 2018 Published by Elsevier Inc. on behalf of the Alzheimer’s Association. This is an open access
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article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
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29 Keywords: Stigma; Alzheimer’s disease; Early diagnosis 84
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33 1. Introduction clinically to one defined biologically, and, in this article, 88
34 we argue that a biological definition will change the experi- 89
35
In medicine, stigma describes how, after a person is 90
ence of stigma.
36 labeled with a disease that has negative social connotations, 91
A biomarker-based definition—using, for example, struc-
37 their social status and sense of self may be tainted and deval- 92
tural magnetic resonance imaging that measures neurode-
38 ued [1–3]. In persons with Alzheimer’s disease (AD), stigma generation and positron emission tomography studies that 93
39 can affect how they perceive themselves, such as feeling they 94
measure brain metabolism or the presence of pathologic
40 have little worth or are incompetent and how others treat 95
markers—is a departure from the historic, and still quite 96
41 them, such as acting in ways that discriminate, patronize,
42
common, understanding of AD as a clinicopathologic state, 97
or isolate [4–7]. This stigma can lead to problems such as
43 defined by observable signs and symptoms. This definition is 98
economic hardships, loneliness, and depression [8]. To
44 often referred to as “dementia due to Alzheimer’s disease” or 99
date, the experience of stigma has been grounded in a disease
45 “Alzheimer’s disease dementia.” 100
label that is based on diagnosis of disabling cognitive and 101
46 Researchers are using a biomarker-based definition to test
47
behavioral impairments, that is, dementia caused by AD. in biomarker positive persons interventions to prevent or 102
48 Advances in neuroimaging and other biomarker assays are 103
slow cognitive and functional declines [9]. Should these tri-
49 changing our understanding of AD from a disease defined 104
als succeed, clinicians will use biomarker tests and these in-
50 terventions to diagnose and treat patients before the onset of 105
51 106
clinical signs and symptoms. This “preclinical” diagnosis is
52 107
*Corresponding author. Tel.: ---; Fax: ---. a novel opportunity to slow cognitive decline, but, it will also 108
53 Q2
54 E-mail address: stites@pennmedicine.upenn.edu bring challenges. The stigma experience of the clinical 109
https://doi.org/10.1016/j.dadm.2018.02.006
2352-8729/Ó 2018 Published by Elsevier Inc. on behalf of the Alzheimer’s Association. This is an open access article under the CC BY-NC-ND license (http://
creativecommons.org/licenses/by-nc-nd/4.0/).
REV 5.5.0 DTD DADM238_proof 19 March 2018 11:26 am ce

2 S.D. Stites et al. / Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring - (2018) 1-16
110 stages of the disease may spillover to individuals diagnosed Stereotypes about AD center on it being a chronic and 171
111 in preclinical stages. debilitating neurodegenerative disease. The diagnosis is 172
112 A biomarker-based definition of the disease will also strongly associated with the loss of capacity, suffering, 173
113 change the experience of living with the diagnosis. Persons disability, economic losses, and other undesirable features 174
114 175
who have dementia that fits the clinical criteria of AD but a [8]. These associations inform widely held ideas about the
115 176
biomarker result that excludes AD will have doubt cast on characteristics of a person who has AD. These ideas lead
116 177
117 their personal narratives of a symptom experience and their to stereotypes that focus on the later stages of disease 178
118 families’ caregiving narratives. Persons in the “preclinical when a person is most impaired and fully dependent for 179
119 stages” and their families will have to interpret what symp- care [12–15]. These ideas lead people to act in ways that 180
120 toms mark the transition from asymptomatic to symptomatic undermine a person’s competency, identity, sense of 181
121 AD. In short, biomarkers will change what it means for a per- normality, self-control, and social capital. This may include 182
122 son to live with AD. pressuring an individual to retire prematurely or habitually 183
123 We report a narrative review of what is known about AD interrupting to finish the individual’s sentences. This can 184
124 stigma and its effects on persons living with dementia and have deleterious effects on how persons living with dementia 185
125 their caregivers. This literature was derived from a search and caregivers feel about themselves and what they choose 186
126 187
of PubMed and Google Scholar with the key terms of to do or not do [6].
127 188
“stigma” and “Alzheimer’s disease.” We then discuss how
128 2.1. Types of stigma 189
129 advances in diagnosis and their translation into clinical prac- 190
130 tice may change stigma and thereby the experience of the Many models have been put forward to conceptually 191
131 disease. We offer research recommendations and consider- describe the AD stigma experience [3]. Three models that 192
132 ations for practice and public policy. describe the patient, caregiver, and public experience of 193
133 AD stigma are public stigma, self-stigma, and spillover 194
134 stigma. 195
2. Alzheimer’s disease stigma defined, its context and its
135 196
effects Public stigma, also referred to as “enacted” stigma, de-
136 197
scribes how the general population may carry negative or 198
137 Stigma is a complex social experience, referring to the re-
138 pejorative beliefs that cause them to act in discriminatory, 199
action of others when a person was thought to deviate from exclusionary, or patronizing ways toward persons who either
139 200
“normal” [2]. Stigma is often described as a process in which have or are closely associated with persons with AD [7,16].
140 201
141 a label, such as a diagnosis, links the person to discrediting Self-stigma, also referred to as “felt” or “internalized” 202
142 characteristics associated with that label [10]. This process stigma, describes when a person cognitively or emotionally 203
143 has three features [10,11]. First, there is an authority who absorbs negative beliefs, attitudes, assumptions, and stereo- 204
144 has the power to apply a label to others. In medicine, this types related to the disease, such as feeling ashamed and 205
145 is typically a physician or other clinician who makes a inferior because of being closely linked to the disease [4]. 206
146 diagnosis. Second, the label must relate to negative or Self-stigma is associated with depression, avoidant coping, 207
147 deviant qualities, such as a disease marked by physiologic 208
social avoidance, low self-esteem, hopelessness, relatively
148 pathology, functional impairments, and symptoms outside 209
worse psychiatric symptoms, and decreased help-seeking 210
149 of normal functioning. Third, the person receiving the
150 behaviors [5]. 211
label must have less social power than the individual Spillover stigma, also referred to as “stigma by associa-
151 212
assigning the label, which is typically the case in the tion,” describes how people who do not have AD are none-
152 213
153 patient-clinician relationship. theless affected by the stigma related to the disease [5]. 214
154 When a clinician diagnoses a person with AD, the person Spillover stigma often affects individuals who share close 215
155 is transformed into a patient with the disease. The person is a social proximity to those who have the disease, such as fam- 216
156 member of a patient group associated with behaviors, abili- ily members and caregivers [17,18]. It can also affect 217
157 ties, and experiences related both formally and informally to individuals who have a different but similar condition, 218
158 the diagnosis [10]. The diagnostic label implies what signs such as mild cognitive impairment (MCI) [19]. 219
159 and symptoms the person may have and may be expected 220
160 to develop [2]. It is also linked to predictions about the pa- 221
161 2.2. Cultural context 222
tient’s future, such as prognosis and life expectancy.
162 The connection between observable characteristics of a dis- Stigma associated with the clinical form of the disease— 223
163 224
ease and its diagnosis reflects the medical convention of using that is, AD dementia—has been well documented across
164 225
165 a symptom-based system of classification to define and diag- many cultures, but its presentation varies by cultural context 226
166 nose disease. This approach can contribute to reifying stereo- [20,21]. In this section, we describe how disease 227
167 types and biases about the disease. It can lend to presumptions characteristics together with culturally influenced aspects 228
168 that, even in the absence of a diagnosis, individuals fit stereo- of social identity—such as age, race, and gender—can 229
169 types of the disease because they are seen to have symptoms interact (Fig. 1). When they do, they can make AD stigma 230
170 that are strongly associated with the disease. more frequent and intense. 231

S.D. Stites et al. / Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring - (2018) 1-16 3
232 burdens can intensify the stigma experience of AD. For 293
233 women living with dementia, stereotypes related to the 294
234 loss of femininity and sexual power that are assumed to 295
235 commence with age can increase the negative judgments 296
236 297
they encounter as a result of the disease. Moreover, the
237 298
presumed role as the de facto caregiver can result in
238 299
239 women being subsumed into this role by default upon 300
240 diagnosis of a spouse. Alternatively, upon their own 301
241 diagnosis, they can be vulnerable to lack of support and 302
242 encounter added stressors related to demands of caring for 303
243 others in addition to tending to their needs. 304
244 The relationships between race and AD stigma are com- 305
245 plex. In a small U.S. sample, African-Americans appeared 306
246 less likely than whites to endorse negative attributions 307
247 related to AD [34]. This finding raises the question of 308
248 309
whether this might be due to the widespread belief in
249 310
Fig. 1. Aspects of personal identity and disease beliefs intersect to alter African-American communities that AD is not a pathology
250 311
stigma of Alzheimer’s disease dementia. Abbreviation: SMI, serious mental but rather a natural part of aging [35]. This misbelief may
251 illness. 312
252 be a form of “silent stigma” [36], whereby it serves to protect 313
253 individuals from the stigma associated with the disease. In 314
254 2.2.1. Characteristics of the disease addition, how broader issues of racism and disparity inter- 315
255 sect with AD stigma remain largely unknown. However, it 316
256 Cultural beliefs about illness and disease affect the pre- is critical to understand this to address their underrepresen- 317
257 sentation and consequences of AD stigma. In general, phys- tation in research [37], which may compound existing health 318
258 ical illness tends to garner public pity and support as it is disparities that disproportionately affect them [38]. The 319
259 viewed, with some exceptions, as being outside the individ- absence of African-Americans and other socially disadvan- 320
260 ual’s control [22]. Debilitating physical illness can also lend 321
taged groups from research that moves the practices of AD
261 to paternalistic worries about the person’s welfare. In 322
diagnosis and treatment to genetic and biological markers
262 contrast, mental illnesses are known to intensify negative 323
263 risks excluding sections of the population from interventions 324
judgments and social distance [2,23,24]. Thus, AD stigma targeted on narrow biological data.
264 325
has the unique characterization of including dimensions These personal characteristics—older age, being female,
265 326
266
that are both “positive” (compassion and paternalism) and and being African-American—have significant roles in in- 327
267 “negative” (inflated doubts about competence) [25]. forming an individual’s personal and social identities. 328
268 Although AD is not officially categorized as a mental They are also risk factors for AD [39]. The concurrent role 329
269 illness [25], it shares many psychiatric symptoms in com- as a marker of identity and as an indicator of disease risk so- 330
270 mon with serious mental illnesses—apathy, agitation, lidifies their connections to the disease. The processes by 331
271 depression, and delusions. Research in the United States which these connections are established and maintained 332
272 has shown that the public can judge a person’s symptoms 333
warrant study to discover ways of modifying and limiting
273 to be more severe when they believe AD dementia is a 334
stigma.
274 mental illness [7]. This may be bound to culturally ascribed 335
275 ideas of controllability introduced previously, whereby 336
276 2.3. Experiences of AD stigma 337
negative reactions toward mental illness relate to miscon-
277 338
278
ceptions that symptoms manifest due to laziness or unwill- The next sections review how stigma affects patients, 339
279 ingness of the person to control their condition [22]. caregivers, political climate, and social systems. For each, 340
280 we distinguish among stigma associated with AD in general, 341
281 in dementia, and in the preclinical forms of the disease. 342
282 2.2.2. Effects of personal identity 343
However, much of the evidence is from studies of stigma
283 Features of the disease are not the only contributors to the associated with AD dementia. 344
284 stigma experienced by persons living with AD dementia. 345
285 346
Their age, gender, and race can intensify the stigma experi- 2.3.1. Patient experience of AD stigma
286 347
287 ence. Individuals living with dementia must contend with Stigma of AD is common. Across 54 countries, most 348
288 both the stereotypes about the disease and stereotypes and people surveyed (75%) believed individuals with demen- 349
289 beliefs about the competency and abilities of older adults tia face stigma [21]. Although the expression and inten- 350
290 [8,26–30]. sity differ between countries, the most common negative 351
291 Women encounter disproportionate social burdens asso- association is that of being discounted or marginalized 352
292 ciated with aging [31] and caregiving [24,32,33]. These by others (28%) [21]. In Australia, half of adults 353

354 surveyed discounted the ability of a person with demen- Table 1 415
355 tia to be able to have a meaningful conversation [40], Summary of areas for research in preclinical Alzheimer’s disease 416
356 while in Britain, most (81%) adults surveyed believed Research 417
357 they would be looked upon or treated differently if others Patient Experience of Alzheimer’s disease stigma 418
358 Individuals’ experiences, including perceptions of cognitive func- 419
knew they were diagnosed with dementia [41]. In the
359 tioning, family relationships, quality of life, treatment by others 420
United States, over half surveyed expected a person Psychological effects (forecasting, stereotyped threat, etc.)
360 421
361 with AD dementia to be discriminated against by em- Processes used or not to cope with uncertainty after learning a 422
362 ployers (55%) and be excluded from medical decision- biomarker result, including distancing and protective behaviors
423
making (55%) [34]. Impact of the onset of subjective and objective symptoms
363 424
Effects of timing of biomarker disclosure and type of biomarker
364 AD stigma affects persons both before and after diagnosis.
result 425
365 Before a diagnosis, stigma impedes the willingness to seek Public stigma of Alzheimer’s disease 426
366 care, to educate oneself about the disease, and to participate Public reactions to preclinical Alzheimer’s disease 427
367 in research [5,18,30,42–46]. People may conceal symptoms How to develop effective media messages to promote the dignity of 428
368 to avoid being associated with the disease [5]. persons with the disease 429
369 In early stages of disease, a patient is often aware of their Practice 430
370 Service design and delivery 431
diagnosis and the stigma associated with it [47–55]. As a Appropriate procedures for follow-up and monitoring
371 432
result, they may feel shame, anxiety, and depression [47– Resource requirements of delivering this care
372 433
51]. This may make individuals hesitant to disclose their Consequences of demands for these resources
373 434
diagnosis or impairments, which can impede their access Caregiver role
374 Experiences of social burdens, including isolation, discrimination, 435
375 to care and result in worse health outcomes [47]. The stress 436
and rejection
376 of managing the psychosocial consequences of the disease Formal and informal processes of “caregiver” designation 437
377 can lead to development and exacerbation of existing symp- “Patient-caregiver” relationship, including issues of autonomy, so- 438
378 toms [56]. This is sometimes misconstrued by patients or cial opportunities, and willingness to plan for the possibility of 439
379 their caregivers as evidence of decline, increasing the burden future declines 440
380 of morbidity, likelihood of social withdrawal, and risk of in- Patient-reported outcomes 441
381 Development of measures to assess stigma and other psychosocial 442
stitutionalization [57,58]. It can also lend to relationship outcomes that have predictive and prognostic utility and are
382 443
conflict and loss, particularly with family members [59]. culturally valid
383 444
Stigma can create financial difficulties, like being fired or Policy
384 Protection of social rights 445
385 forced into early retirement or being unable to secure insur- 446
Protections and assurances related to access and use of biomarker
386 ance to cover the cost of care [60,61]. 447
results by individuals, health care systems, employers, and insurers
387 Persons living with dementia worry about conforming to ste- Access to resources and support 448
388 reotypes of the disease [62]. When faced with this threat, some Framework for engagement of patient’s organizations and other 449
389 react by exhibiting signs that confirm that stereotype [63]. This stakeholders 450
390 phenomenon, called stereotyped threat, has been found to affect Guidelines to assure education about and access to appropriate 451
391 support services, including power of attorney and advance directives 452
individuals even before the onset of cognitive symptoms; per-
in both clinical care and research settings
392 sons who learned their genetic risk for developing AD have 453
Allocation of services
393 been found to show lower performance on memory tasks than 454
Health policy actions to ensure fair access to diagnosis and associated
394 455
others who were at risk but uninformed [64]. therapies
395 456
Research with persons living with dementia and the
396 457
397 emerging findings from studies of unimpaired persons who 458
398 learned their risk of developing AD dementia raise important 459
399 questions, which are briefly summarized in Table 1. These gene- and biomarker-based risk estimates may both denote 460
400 findings suggest that advances in AD science may affect an elevated risk for dementia, they do differ. Biomarker- 461
401 the psychosocial wellbeing and daily lives of persons diag- based estimates are not as well quantified and they more 462
402 nosed early. The emerging research raises questions about readily change over time as compared to gene-based esti- 463
403 whether they experience similar negative experiences as mates. It is important therefore to understand the processes 464
404 those with clinical forms of disease and what types of psy- individuals do or do not use to cope with uncertainty after 465
405 chological effects may follow from learning one’s risk of learning an elevated or positive biomarker. How a biomarker 466
406 AD. To answer this, we need to understand what psycholog- is quantified and how it may change over time could influ- 467
407 468
ical processes (forecasting, stereotyped threat, etc.) may be ence how people react to their result. Research is needed
408 469
409 engaged in how people react after learning their biomarker to understand the experiences of persons who learn their 470
410 status. We summarize this and other recommendations for AD risk and to understand how learning varied types of 471
411 future study in Table 1. risk data—gene or biomarker—might affect their experi- 472
412 Much of what is currently known about the experiences of ences. This will inform interventions to limit the social 473
413 unimpaired persons who learn their AD risk comes from and psychological consequences of learning an Alzheimer’s 474
414 those who learned gene-based risk estimates. Although biomarker result. 475

476 Table 2 537

477 Summary of measures that have been validated or pilot tested in samples with Alzheimer’s disease dementia Q13
538
478 Items assess 539
479 Reliability clinical 540
480 Scale Description Content assessed (Cronbach’s a)* symptoms 541
481 Family Stigma in Alzheimer’s 42 items, five-point Stereotypes; prejudice (emotional reactions); 0.97 to 0.41 for 8 True
542
482 Disease Scale (FS-ADS) [17] Likert scales discrimination. Includes three scales: theoretical subscalesy 543
483 caregiver, lay person, and structural 544
484 The Social Impact Scale [114,115] 24 items, four-point Experience of social rejection; social and 0.87 Full scale; subscales True 545
485 Likert scale psychological feelings regarding 0.76 to 0.87 546
486 experience of stigma 547
487 The Stigma Scale for Chronic Eight items, five-point Six items about experience of treatment by 0.89 False 548
488 Illness (SSCI) Revised [113] Likert scale; others; two items about experience of 549
489 standardized t-scores embarrassment 550
Stigma Experience Scale 19 items; yes or no Nine items about experiences of stigma and 0.67 Full scale; subscales False
490 551
[116,125] responses 10 items about experiences with 0.70 and 0.50
491 discrimination
552
492 Weiner et al. scale [22] 13 items, nine-point Beliefs about stability-controllability of DNR True 553
493 Likert scale disease; affective and behavioral 554
494 consequences of disease; and stability of 555
495 the disease (improvability) 556
496 Fernando et al. [41,108] Eight items, five-point Stigmatizing attitudes including those related DNR False 557
497 Likert scale to being unpredictable, to blame, hard to 558
498 talk to 559
499 Kubiak et al. [110–112] 11 items, six-point Medical Condition Regard Scale assessing 0.86 False 560
Likert scale clinicians’ views of patients with a given
500 561
medical condition as enjoyable, treatable,
501 and worthy of medical resources
562
502 DNR, six-point Attributions of stability and pity toward DNR True 563
503 Likert scale clients with the four conditions. Items 564
504 obtained from the Psychiatric Disability 565
505 Attribution Questionnaire (PDAQ) 566
506 Low et al. 2010 [109] Seven items, agreed Attitudes toward people with dementia were DNR True 567
507 (coded 1) or disagreed assessed by asking them whether they 568
508 (coded 2) agreed or disagreed with a series of 569
509 statements 570
510 Abbreviation: DNR, data not reported. 571
511 *In samples with Alzheimer’s disease. 572
y
512 Modified version of the FS-ADS was used to derive seven empirical scales: Structural discrimination; negative severity attributions; negative esthetic attri- 573
513 butions; antipathy; supportiveness; pity; and social distance [16]. 574
514 575
515 2.3.2. The family and caregiver experience of AD stigma Demands on caregivers to manage stigma shift based 576
516 Through close association with a person who has AD de- upon the severity of the disease, frequency and intensity of 577
517 care, and availability and willingness of others to help or 578
mentia, caregivers and family members are often affected by
518 579
stigma [17,65]. A large amount of the burden from stigma coparticipate [67,68]. All of which are largely currently
519 580
520 arises from the need to manage the social consequences of defined and informed by the individual’s signs and 581
521 the disease. Because of negative associations and fear, symptoms and the stigma that accompany them [14]. In 582
522 wider family members tend to distance themselves from essence, the severity of disease determines the demands of 583
523 the patient and caregivers [65]. This adds to the physical, caregiving both in terms of managing care and the social 584
524 emotional, and social costs of the copious time and energy ramifications of the disease [21]. 585
525 caregivers dedicate to care [66]. In addition to reducing Efforts to minimize the effects of stigma can harm the 586
526 the caregivers’ support network, caregivers often invest psy- person with dementia. For example, to protect the individ- 587
527 chological and emotional resources into what is called ual’s dignity, caregivers may keep the individual’s problems 588
528 “impression management,” a term that describes strategies and needs as private as possible. They may choose to become 589
529 the solitary bearer of all caregiving responsibilities and even 590
to manipulate or control situations in ways that minimize
530 591
or avoid negative social reactions [65]. Caregivers, for delay or not seek help from health care professionals. Each
531 592
532 example, may make up socially appropriate excuses for of these behaviors can worsen an individual’s health [69]. 593
533 why the person living with dementia may be unavailable Caregivers can experience poor health as a result of car- 594
534 for a social engagement or frequently answer on the person’s ing for a person with AD dementia. A collection of factors 595
535 behalf to assure an image of competency or lucidity when likely contributes to the poor outcomes experienced by care- 596
536 moments of confusion unexpectedly arise. givers but stigma can exacerbate these problems. For 597

598 instance, it can intensify the strain, stress, or injury that can 14,75]. The common negative depictions are useful for 659
599 arise from the physical demands of addressing mobility some purposes—such as motivating financial donation in 660
600 problems. Or, the loss of employment opportunities because fundraising campaigns—but they also promote and affirm 661
601 of a persistent need to manage issues related elopement, stigma by emphasizing negative aspects of the condition [15]. 662
602 663
falls, and basic needs. It can also increase difficulties related Societal attitudes that are dismissive and devaluing can
603 664
to the psychic and social burden of the disease, independent stifle the public momentum that is needed to enact policies,
604 665
605 of the severity of the disease. These may include employ- garner funding, develop programming, or advance research. 666
606 ment discrimination or other forms of structural discrimina- This can lead to imbalances and injustices in social structure, 667
607 tion as well as loss of social relationships and experiences of political decisions, and legal regulations [17,69]. The effects 668
608 harsh social judgments. are visible over a range of areas, such as in the reluctance to 669
609 Aspects of the caregiver’s identity, particularly gender accept new therapies [76], scrutiny of medicare-reimbursed 670
610 and familial relationship, can modify the effects of stigma. services [77], diminished work force, and the difficulty most 671
611 The responsibility for caregiving tends to fall disproportion- countries face in prioritizing public policy to address AD 672
612 ately on women, usually a wife or adult daughter [24,32,33]. from among other competing demands [78]. 673
613 The gender disparity among caregivers adds to the social Stigma can also affect how services are commissioned, 674
614 675
burden already faced by women due to ageism and sexism designed, and provided [79]. The disparaging attitudes and
615 676
[8,28–30]. In addition, as caregivers, women report beliefs can spillover to negatively affect how health care pro-
616 677
617 contending with more stigma and greater caregiving viders care for persons with AD [30,79–81]. They can affect 678
618Q3 burdens compared to men [70]. The burden women care- how people linked to the disease are treated within social 679
619 givers encounter due to stigma can differ based upon their systems, such as being patronized, isolated, excluded, and 680
620 relationship to the person with dementia, where young adults discriminated against [82–84]. All of which, in turn, can 681
621 report greater burdens than spouses [70]. further limit a person’s opportunities for employment and 682
622 The experience of being a caregiver for a person with AD to otherwise live productively in the society. In more 683
623 dementia is unique from that of caring for individuals with deleterious forms, they can contribute to social 684
624 other diseases [71,72]. The finding that clinical symptoms expectations and acceptance that persons living with AD 685
625 shape the caregiver experience raises questions about how should be sequestered in institutions. 686
626 687
the caregiver experience may be affected by diagnosis before Our review of literature on public stigma underscores the
627 688
the onset of symptoms and how the anticipation of symptom importance of media portrayals of AD. Studies would be
628 689
629 onset and then the experience of emergent symptoms may useful that can aid in informing efforts to improve public at- Q4 690
630 affect this experience. We return to this topic later to discuss titudes and beliefs about AD, including how effective mes- 691
631 the ways they may shift because of advances in sages promote the dignity of persons with the disease. In 692
632 neuroimaging and other biomarker-based diagnostics. Section 4.0, we return to discussions of the effects of 693
633 disclosing risk data in terms of the shifting role of the care- 694
634 2.3.3. Public stigma of AD giver and gaps in existing public policies. 695
635 Public stigma typically describes how members of the 696
636 general population act in discriminatory, exclusionary, or 697
637
2.4. Interventions to reduce stigma of AD 698
patronizing ways toward persons who either have or are
638 Statewide and national programs have created strategies 699
closely associated with AD [7,16]. In this section, we
639 700
broaden this definition to understand public stigma as a and opportunities to address and reduce stigma, for example,
640 701
wide-spread social problem that manifests in social systems through national dementia strategies or legal frameworks
641 702
642 and has consequences for those systems. like the U.S.’s National Alzheimer’s Project Act 703
643 Social systems, such as a neighborhood or work place, [43,85,86]. These include public education and awareness 704
644 manifest the stigma of AD in ways that range from indiffer- about AD and effective and sensitive communication to 705
645 ence to rejection. Surveys of the general public repeatedly limit passing on stigmatizing beliefs and negative 706
646 show that the public responds in ways that discount, stereo- stereotypes associated with the disease [21,44,85]. Efforts 707
647 type, infantilize, marginalize, and reject persons with demen- to reduce stigma face challenges and opportunities from 708
648 tia [21,40,73]. Typically, messages in mass media are advances in neuroimaging. Challenges include how these 709
649 consistent with those findings. A common characterization advances may expand the stigma of AD to affect more 710
650 depicts persons with AD as “zombies,” dehumanizing them groups, particularly individuals who are unimpaired but at 711
651 712
as mindless and lifeless [6]. The media’s typical treatment risk to develop dementia. Opportunities include that
652 713
of AD relies on stereotypes that promote ageism, gerontopho- stigma may evolve or even become less potent.
653 714
654 bia, and negative emotions [12,15,74,75]. Individuals living 715
655 with dementia are typically shown in the later stages of 716
3. The effects of advances in neuroimaging
656 disease when they are incapable of making autonomous 717
657 decisions, are a burden to their family members and A recent conceptual framework outlines how results from 718
658 caregivers, and are unable to speak for themselves [12– neuroimaging and other biomarker-based tests might be 719

720 used to diagnose AD and how negative AD biomarker results not know this information. The finding raises the concern 781
721 may be used to rule out the disease as the cause of cognitive that, in addition to consequences that are already well known 782
722 decline [87]. Biomarker tests will change what is means to to affect individuals linked to AD dementia, stigma that 783
723 live with the knowledge of “having” this disease, particu- spills over to affect individuals in the preclinical stage may 784
724 785
larly the experience of stigma in those identified in preclin- raise unique psychosocial concerns. It could affect percep-
725 786
ical stages of disease. It will also have important tions of cognitive functioning and could also inadvertently
726 787
727 consequences for symptomatic individuals who learn a impact clinical evaluation. 788
728 negative result. We focus only on the former group in the 789
729 following discussion. 3.1.1. Research recommendations 790
730 We need to understand how knowledge of one’s 791
731 biomarker status may change the experience of worsening 792
3.1. How advances in early diagnosis might cause a
732 symptoms and signs of cognitive and behavioral problems. 793
spillover of AD stigma from the clinical to the preclinical
733 This work should examine how longitudinal changes in neu- 794
734 stage 795
roimaging and other biomarker-based tests affect how indi-
735 Emerging evidence from people diagnosed with MCI and viduals perceive their abilities to function in daily life, how 796
736 797
research volunteers in AD prevention trials—who learn their they evaluate their experience of symptoms, and how they
737 798
Alzheimer gene and biomarker results so they can partici- may be judged by others. The timing of when a person learns
738 799
739 pate—suggests that stigma currently associated only with his or her neuroimaging result may be a key factor for under- 800
740 the dementia disease stage may spillover to individuals standing the strategies individuals use to effectively cope 801
741 with only mild or even no symptoms [88–92]. In other with and accommodate this information. This knowledge 802
742 words, cognitively unimpaired persons identified in a will also help inform interventions to minimize the impact 803
743 “preclinical” stage of the disease based on biomarker of stigma in preclinical stages of disease. 804
744 results may experience stigma, such as social isolation, How learning one’s biomarker-based risk of AD affects 805
745 discrimination, and internalized distress. an individual’s and their families’ psychological and social 806
746 Understanding how persons with MCI or other similar functioning remains largely unknown. Questions in need 807
747 conditions contend with this may help anticipate the experi- of study include understanding the specific ways stigma of 808
748 809
ence of living in the preclinical stage of the disease. Inter- AD may spillover to affect persons in preclinical stages of
749 810
views with persons diagnosed with MCI found they disease such as the distancing and protective behaviors
750 811
751 expressed a strong desire to differentiate themselves from described in Section 2.3.2. This work should examine how 812
752 persons with dementia because of its negative associations these findings may vary across groups, such as those defined 813
753 [19]. However, they had difficulty doing this because of by age, gender, race, and other cultural contexts, and if these 814
754 the challenge of distinguishing between diagnostic cate- effects differ by the timing of biomarker disclosure and in 815
755 gories of MCI and AD. These findings suggest AD stigma what ways learning a biomarker result might be different 816
756 can spillover to affect individuals with clinically distinct than learning a gene-based result. 817
757 stages of the disease. 818
758 Being aware versus unaware of one’s diagnosis affects 819
759 3.2. How advances in neuroimaging and other biomarker 820
quality of life in older adults with MCI and mild AD demen-
760 methods might reduce AD stigma 821
tia [93]. Among patients who were either aware or unaware
761 822
of their diagnosis but otherwise similar in cognitive func- By changing the understanding of the disease, advances
762 823
763 tioning, awareness of diagnosis was associated with gener- in neuroimaging and other biomarker methods of early diag- 824
764 ally lower quality of life as measured by satisfaction, nosis could help to reduce stigma associated with AD. 825
765 difficulty, basic functioning, and physical wellbeing. This 826
766 finding raises the question of how learning one has “preclin- 3.2.1. Shifting the definition of AD from clinical to 827
767 ical AD” may affect the psychosocial wellbeing of individ- biological 828
768 uals. A biomarker diagnosis may reduce stigma. Persons with 829
769 Evidence from cognitively unimpaired persons shows diseases believed to be biologically based are judged less 830
770 there may be psychosocial consequences to learning a posi- harshly than those with diseases judged to be psychological 831
771 tive gene-based test result. Using a nested case-control or mental [7,22]. In addition, the emerging biological 832
772 design [64], 144 cognitively unimpaired older adults learned definition may also give caregivers a better means to avoid 833
773 834
or did not learn their gene-based risk of developing AD de- and manage stigma by providing them use of a
774 835
775 mentia, then completed objective verbal and visual memory medicalized definition to account for disabilities and 836
776 tests and self-report measures of memory function. The two behavioral symptoms [47,66]. 837
777 groups did not differ in objective memory test performance, A key factor that will influence how “biological evi- 838
778 but those who knew they were at risk of AD performed worse dence” affects stigma will be how this new knowledge is 839
779 on an objective verbal memory test and judged their memory associated with disease risk factors. The notion that certain 840
780 more harshly than those who were similarly at risk but did behaviors can modify the disease risk can create a sense of 841

842 personal responsibility that, in turn, can increase stigma as a Studies nested within Alzheimer’s prevention trials are 903
843 person who develops the disease can be judged as having not providing information about the impact of disclosing the results 904
844 acted responsibly. In juxtaposition, the idea that nothing can of gene and biomarker tests to people [91,97–100]. Of particular 905
845 be done to change one’s risk may lead to complacency or, relevance is the “Study of Knowledge and Reactions to Amyloid 906
846 907
possibly, a sense of being a victim of circumstance. The Testing,” a companion study to the “Anti-Amyloid Treatment in
847 908
development of recommendations for managing risk that is Asymptomatic Alzheimer’s Disease (A4)” trial. This interview
848 909
849 accurate, consistent, and helps guide health promoting be- study follows persons who have learned the results of an 910
850 haviors demands attention and study [94]. amyloid positron emission tomography scan. The study’s 911
851 In addition to offering a means to discover novel thera- baseline interviews of those who learned they had an elevated 912
852 pies, advances in neuroimaging and other assays have the level of brain amyloid showed they understood that the result 913
853 potential to improve diagnostic accuracy and patient man- conferred an increased but uncertain risk for later developing 914
854 agement within the current standard of care [95]. They offer AD dementia [97]. Interviewees made clear that they wanted 915
855 opportunities to improve both the course and prognosis of more information and education than had been offered about 916
856 the disease. Consistent with prior research that has shown the result, particularly how a dimensional biomarker is turned 917
857 stigma is intensified by the expectation that a person’s con- into a categorical result (“elevated” or “not elevated”). These 918
858 919
dition will worsen over time [16], improving expectations findings have direct implications for how advances in neuroi-
859 920
for treatment of persons diagnosed with the disease may maging and other biomarker technologies are translated into
860 921
861 help reduce stigma, including that related specifically to routine clinical practice. They suggest the use of biomarker 922
862 discrimination, pity, and social distance. testing will require changes to the content and structure of a 923
863 typical clinical encounter to meet demands for education, plan- 924
864 ning, and shared decision-making. 925
4. Considerations for practice
865 It will be crucial to study and understand how stigma af- 926
866 Successful translation of advances in AD diagnostics into fects efforts—services, programs, clinical practices—aimed 927
867 routine clinical practice holds promise for reducing the at meeting the demands for education, planning, and shared 928
868 stigma associated with AD. We examine pragmatic consid- decision-making that will accompany these advances in 929
869 diagnosis. It could exacerbate existing gaps in patient- 930
erations of this undertaking related to the shifting role of
870 931
the caregiver, public policy, and service design and delivery, caregiver education, impede the ability to link individuals
871 932
as well as conceptual issues in measurement and evaluation. to appropriate resources, and serve as a barrier to engaging
872 933
873 patients and other stakeholders, particularly in socioeco- 934
874 nomically marginalized groups. [69,101]. Moreover, 935
4.1. Service design and delivery
875 stigma and fear of dementia pose risks as powerful 936
876 Two challenges of a biomarker-based diagnosis of AD are motivating factors that could lead to the preemptive 937
877 the design and delivery of programs and services for persons introduction of new diagnostic and therapeutic 938
878 who undergo these diagnostics. How the health care system technologies. It will be crucial to study and attend to these 939
879 addresses these challenges will affect patients’ psychosocial issues as to help assure the translation of advanced 940
880 wellbeing. diagnostics is not rushed before their value is established 941
881 and their consequences are appropriately addressed. 942
882 943
4.1.1. Service design
883 944
Advances in neuroimaging and other diagnostics for AD 4.1.2. Service delivery
884 945
885 will require redesigning clinical services. Developing lan- As many as one-third of adults aged 65 years and older 946
886 guage to explain these services offers opportunities to reduce may have “elevated amyloid.” Routine use of biomarker 947
887 stigma. Because stigma can be conveyed and perpetuated in testing in clinical practice could potentially overwhelm cur- 948
888 the language used to talk about ideas or experiences [27], it rent systems, designed to manage relatively small groups of 949
889 is critical to understand and intentionally shape the language patients, with large numbers of cognitively unimpaired per- 950
890 that describes these technologies and their results [81]. sons identified as at risk. These issues raise an important 951
891 Because these technologies will be linked to diagnosis, un- question about how to manage and “treat” individuals with 952
892 derstanding how the language that describes them interacts preclinical forms of the disease as part of a continuum of 953
893 with how patients make sense of their diagnosis will be care that includes those with symptomatic AD. These chal- 954
894 important. Patients often understand an AD diagnosis lenges could, if left unaddressed, exacerbate AD stigma. 955
895 956
through their expectations for normal aging and personal ex- One challenge is how to monitor individuals who are
896 957
897 periences with dementia [96]. A cognitively unimpaired in- cognitively unimpaired but found to be at risk for developing 958
898 dividual who learns a diagnosis of “AD” may face greater AD dementia. Some may be prescribed therapies and require 959
899 challenges to their identity than someone who learns a diag- ongoing monitoring of these medications. Others may need 960
900 nosis of “amyloidosis.” The effects of language require study monitoring that has assurances built in to identify emergent 961
901 to optimize terms that limit stigma while encouraging active health needs and capabilities to link individuals with appro- 962
902 engagement in health promoting activities. priate services while also, alternatively, assuring individuals 963

964 are not entered prematurely into unnecessary treatment. The present unimpaired but who later may begin to experience 1025
965 design of these care delivery systems for groups of unim- problems in memory and cognition will define a novel 1026
966 paired but at-risk individuals may pose unique challenges element to what it means to be a caregiver of a person diag- 1027
967 to clinical practice, which focuses on care for clinical symp- nosed with AD. 1028
968 1029
toms [102]. These areas remain largely unstudied at present Critical questions remain unanswered about how individ-
969 1030
but appropriate procedures for this follow-up and monitoring uals undergoing testing and their families navigate the emer-
970 1031
971 need to be established. Central to this is the need to avoid gence of the caregiver role. Of particular importance is 1032
972 translating a risk of dementia into a condition treated and re- understanding what social burdens, including isolation, 1033
973 garded as symptomatic disease and the concomitant risk of discrimination, and social rejection, may affect persons 1034
974 overtreating worried adults. The success of these efforts assuming this role and how these vary along the lines of 1035
975 will be essential for limiting the spillover of stigma from age, race, and gender. Understanding this may help antici- 1036
976 clinical to preclinical disease stages and for reducing stigma pate how advances in early diagnosis could add to existing 1037
977 associated with preclinical stages. disparities in caregiving and help to inform strategies for 1038
978 The volume of care resultant from routine use of intervention. In addition, it will be important to understand 1039
979 biomarker testing and its reliance on potentially expensive how a caregiver becomes designated and the responsibility 1040
980 1041
testing modalities could be resource intensive. The real or of a health care professional in guiding this process. More-
981 1042
perceived competition for resources could intensify stigma, over, as part of understanding the “patient-caregiver” rela-
982 1043
983 particularly in terms of feelings of exclusion or marginaliza- tionship, it will be necessary to learn how early diagnosis 1044
984 tion of those in the less served or underserved groups. It may affect the individual’s autonomy, social opportunities, 1045
985 could also intensify stigma toward clinically impaired and willingness to plan for the possibility of future declines, 1046
986 groups by establishing a connotation that they are beyond particularly given that the person undergoing testing may be 1047
987 help or otherwise discountable. mildly impaired or unimpaired. 1048
988 Disclosing biomarker results to research volunteers in- 1049
989 volves patient-provider interactions like tailored educa- 1050
990 tion, helping the patient plan for the future, and shared 1051
991 4.3. Assessing stigma 1052
decision-making [103,104]. Clinical encounters that
992 1053
focus on education, planning, and shared decision- Patient-reported outcomes (PROs) are likely to be valu-
993 1054
making will be formative for helping patients interpret able in the care of persons with preclinical AD as patient-
994 1055
995 brain imaging results and the associated risk for Alz- reported data are less likely to be biased by the disease pro- 1056
996 heimer’s in ways that are accurate, affirming, and, as cess [52–55]. PROs that can measure stigma and other 1057
997 needed, corrective to stigmatizing expectations. The psychosocial factors will improve our understanding of 1058
998 safe and effective disclosure of the results of this testing how knowledge of AD biomarkers affects individuals and 1059
999 to a patient needs to address social relationships that in developing and testing of interventions to reduce stigma. 1060
1000 affect an individual’s health and wellbeing and acknowl- Using PROs routinely may help improve delivery of clin- 1061
1001 edge how this information may affect their personhood. ical care, such as monitoring those who are at risk and help- 1062
1002 These emphases on relationships and personhood are ing guide efforts to improve patient endpoints. Strategic 1063
1003 core to the clinician-patient relationship and effective development and implementation of psychosocial PROs 1064
1004 1065
clinical management. They are also what characterize may be particularly useful for addressing the novel demands
1005 1066
dignity in clinical care [79]. Enhancing dignity, the an- for education, planning, and shared decision-making that
1006 1067
1007 tithesis of stigma, tends to lead to decreases in stereotyp- will be needed to deploy advances in neuroimaging and 1068
1008 ing and an increased value for the individual. However, other methods of early diagnosis into routine clinical 1069
1009 large gaps remain in the knowledge and methods that practice. 1070
1010 are needed to effectively accomplish these tasks. Particu- 1071
1011 larly, given the demands embedded in routine clinical 4.3.1. Existing stigma measures 1072
1012 practice, new methods may need to be developed to To inform development of a measure that assesses the 1073
1013 accommodate the resource requirements of delivering psychosocial effects of early diagnosis, we reviewed existing 1074
1014 this care, such as mixed modality interventions that instruments to understand what might be needed. We 1075
1015 would distribute efforts across in-person and virtual inter- focused only on measures that were developed specifically 1076
1016 actions. for AD or later adapted for this purpose because AD—unlike 1077
1017 1078
other conditions [106]—invokes both positive (compassion
1018 1079
1019 and warmth) and negative dimensions (inflated doubts about 1080
4.2. The caregiver role in preclinical AD
1020 competence and paternalism) of stigma [25]. Although 1081
1021 A diagnosis of dementia initiates caregiving attitudes several studies have measured AD stigma [107], all have 1082
1022 and roles [105], but we do not know what attitudes and been for the purpose of understanding the phenomenon in 1083
1023 roles a family member experiences after a diagnosis of pre- the dementia stages of the disease. Our review focuses 1084
1024 clinical AD. Being the partner or child of an adult who is at largely on the eight that have been evaluated for their 1085

1086 psychometric properties or at least have been pilot tested for In addition to these domains, there is a need for measures 1147
1087 their appropriateness and validity (Table 1). that capture aspects that may be unique to emerging disease 1148
1088 stages where individuals may be clinically unimpaired, such 1149
1089 4.3.2. What domains to assess as beliefs about and expectations for the future and changes 1150
1090 1151
A paramount challenge to addressing AD stigma and its to social capital such as planning for the future related to
1091 1152
spillover to novel stages being defined by biomarkers is occupation, finances, and independent living. The capacity
1092 1153
1093 determining which dimensions to measure. Existing metrics to understand both the short-term and longer term social ef- 1154
1094 capture multiple dimensions such as attitudes toward re- fects on individuals who learn biomarker results will also be 1155
1095 sponsibility [41,108,109], beliefs about the mutability of essential. Thus, it will be of importance to develop a measure 1156
1096 the condition [22,110–113], and emotional reactions that is sensitive and specific enough to capture these effects. 1157
1097 [17,113–115]. They also tend to ask directly about Because existing measures were developed to assess 1158
1098 experiences of “stigma,” which has been shown to result in stigma in clinical forms of the disease, they often rely at least 1159
1099 poor psychometric properties [115,116]. in part on assessing respondents’ experiences or beliefs 1160
1100 Measures informed by existing literature and interviews about symptoms. As Alzheimer’s diagnosis shifts from a 1161
1101 with patients elicited aspects of stigma connected to phys- symptom-based understanding of the disease to a biologi- 1162
1102 1163
ical, psychological, and social wellbeing. The Family cally defined stage, measures focused on outward-
1103 1164
Stigma in AD Scale, which was informed by existing presenting characteristics related to symptoms, esthetics,
1104 1165
1105 literature on family stigma of mental illness [17], assesses and functioning may not adequately capture experiences of 1166
1106 cognitive attributions (stereotypes), emotional reactions unimpaired or mildly impaired persons who learn they are 1167
1107 (prejudice), and behavioral consequences (discrimination). at risk for developing AD dementia. In fact, a heavy 1168
1108 These are domains known to be relevant to understanding emphasis could appear tone-deaf and reify stereotypes in 1169
1109 stigma of AD as understood via labeling theory [17]. Simi- asymptomatic populations. Measures to assess and under- 1170
1110 larly, the Social Impact Scale was developed for persons stand stigma and other psychosocial experiences of the dis- 1171
1111 with HIV/AIDS and cancer and then later adapted and tested ease may need to shift away from reliance on symptoms. 1172
1112 with patients with AD dementia [114,115]. This scale Instead, queries framed around behaviors related to conceal- 1173
1113 assesses two domains: experiences of social rejection and ing and sharing information may be more useful. When 1174
1114 1175
social psychological feelings regarding stigma. It also symptoms are queried, the framing may need to be concep-
1115 1176
allows for estimation of four subscales: social rejection, tualized along a continuum of experience to be capture expe-
1116 1177
1117 financial insecurity, internalized shame, and social isolation. riences of a disease that occurs as a progression rather than a 1178
1118 Instruments developed to assess stigma across a range of static state. 1179
1119 diseases, of which AD dementia was one, measure factors 1180
1120 common to the experience of having chronic conditions. 4.3.3. Who to assess 1181
1121 Weiner et al. developed a scale to compare stigma across Most existing measures were designed to assess stigma 1182
1122 a range of diagnoses [22]. The instrument assesses three in the general public or among those diagnosed with the 1183
1123 domains: belief that the cause of the disease is stable and disease. One notable exception is the Family Stigma in 1184
1124 controllable (responsibility, blame, changeability); affec- AD Scale, whose creators recognized the import of assess- 1185
1125 tive and behavioral reactions (liking, pity, anger, charitable ing stigma of AD across multiple groups. The scale has 1186
1126 1187
donations, and personal assistance); and beliefs about the versions tailored to patients, caregivers, and a general pub-
1127 1188
stability of the condition (e.g., likelihood of improvement lic [17]. As biomarker-based diagnosis broadens the range
1128 1189
1129 with medical treatment, psychotherapy, etc.). The Stigma of disease stages, there will be a need for measures that can 1190
1130 Scale for Chronic Illness was originally developed to capture effects on family members, such as genetic herita- 1191
1131 assess internalized and experienced stigma across chronic bility that could differ by familial and biological relation- 1192
1132 illnesses [113,117]. These measures can be helpful for ship and for individuals impacted by novel relationships, 1193
1133 understanding how stigma can differ across conditions, such as the early designation of “care partner” for an unim- 1194
1134 but they tend to omit domains that may be critical for paired adult. 1195
1135 understanding the psychosocial effects specific to AD. 1196
1136 There is no one measure that assesses all domains that 4.3.4. The scale score 1197
1137 may be relevant to understanding the consequences of AD All but one existing measure of AD stigma offers a grand 1198
1138 stigma. Key domains commonly recognized in clinical prac- score that is either a mean or sum of item responses. Both 1199
1139 1200
tice include family and other relationship loss, social isola- calculations are useful as descriptors and comparators. How-
1140 1201
1141 tion, mental wellbeing, and personal loss of social capital ever, without the ability to transform them to standardized 1202
1142 and domains of quality of life including the experience of scores, such as theta or T-scores, they lack the benefits of 1203
1143 subjective cognitive problems, activities of daily living, Item Response Theory scoring, such as added precision 1204
1144 physical functioning and wellbeing, mood and psychologi- and standardized interpretation. A measure that permits 1205
1145 cal wellbeing, and perceptions of functioning and satisfac- easy and routine calculation of T-scores, such as the Stigma 1206
1146 tion in daily life. Scale for Chronic Illness-8 [113], would allow for ease in 1207

1208 interpreting clinical significance. It would be useful to his health insurance limited because of having documenta- 1269
1209 develop a robust measure of AD stigma that has the benefits tion about AD in the medical record, and about 45.6% ex- 1270
1210 of these psychometric properties. Moreover, a scale score pressed strong concerns that results from a brain imaging 1271
1211 that was developed and tested to have predictive and prog- test could result in capitations in health insurance, which 1272
1212 1273
nostic utility could help guide clinical decision-making. was similar to estimates for genetic testing (44.7%,
1213 1274
This, in turn, would help align interventions to individuals P . .05) [34]. These estimates are in addition to the
1214 1275
1215 who could most benefit from them. more than half of respondents that expected a person 1276
1216 with AD dementia to be discriminated against by em- 1277
1217 4.3.5. Cultural validity ployers (55%) and be excluded from medical decision- 1278
1218 Although biomarker technologies are bringing the under- making (55%) [34]. These concerns may reflect personal 1279
1219 standing of AD closer to its biological and molecular path- experiences with affected friends or immediate family 1280
1220 ways, clinical and psychosocial outcomes remain heavily and their knowledge of the challenges people with AD 1281
1221 influenced by sociocultural factors. As AD stigma and its ef- can face. They may also indicate a barrier that may limit 1282
1222 fects can differ based on cultural factors, including race, interest in and uptake of new diagnostic techniques. It is 1283
1223 ethnicity, and economic status [118], it is crucial that new in- thus important to consider how and by whom information 1284
1224 1285
struments attend to these factors. This will avoid limitations about AD biomarkers is accessed, and what, if any, consti-
1225 1286
related to inappropriate wording, unsuitable response sets, tute appropriate uses of this information for individuals,
1226 1287
1227 and oversight of key cultural nuances. In addition to health care systems, and insurers. 1288
1228 improved psychometric properties, instruments that attend 1289
1229 to cultural variation can generate results that offer informa- 1290
5.2. Access to resources and support
1230 tion that better informs culturally relevant programs, pol- 1291
1231 icies, and interventions [86]. The support needed after learning a diagnosis of preclin- 1292
1232 ical AD is unknown. Patients’ organizations, such as the Alz- 1293
1233 heimer’s Association and Alzheimer Europe, could offer a 1294
1234 5. Public policy 1295
valuable resource for connecting with others who have
1235 similar shared experiences; however, their engagement 1296
Stigma has the potential to undermine the uptake of ad-
1236 1297
vances in neuroimaging and other biomarker-based could also reinforce a disease state or activate internalized
1237 1298
methods of AD diagnosis and to compromise the wellbeing stigma, particularly given their strong affiliations with clin-
1238 1299
1239 of people who undergo this testing. Public policy changes ical forms of the disease. The ways patient’s organizations 1300
1240 may be warranted to protect individuals’ social rights and choose to engage persons identified in preclinical disease 1301
1241 privileges, assure access to support, and guarantee the stages will be an important aspect of establishing the frame- 1302
1242 fair allocation of services. This will help ensure the suc- work through which individuals view themselves and are 1303
1243 cessful introduction of biomarker-based diagnostic tools viewed by others. 1304
1244 and models of care. Guidelines should be established to ensure access to 1305
1245 appropriate support services while distinguishing be- 1306
1246 tween individuals who do and do not have clinical dis- 1307
1247 5.1. Protection of social rights 1308
ease. These guidelines should be developed in
1248 1309
Social, employment, and economic policies need to collaboration with patients’ organizations and the public.
1249 1310
consider the potential harms caused by the stigmatization Rather than active clinical intervention, support may
1250 1311
1251 of people with preclinical AD, notably the potential for involve enabling conversation and action related to a 1312
1252 discrimination in employment, insurance, and driving. In possible future with AD dementia. Dementia is among 1313
1253 the case of genetic testing, national regulations and interna- the most feared aspects of aging. The stigma associated 1314
1254 tional agreements protect the rights of individuals to ge- with it can prevent open discussion of its implications. 1315
1255 netic privacy and prohibit discrimination [119], including Here, patients’ organizations and health care providers 1316
1256 the U.S. Genetic Information Nondiscrimination Act of have a role in communicating the meaning of changing 1317
1257 2008 [120]. However, as in the case of Genetic Information diagnostic criteria and associated disease categories. 1318
1258 Nondiscrimination Act of 2008, such legislation may not This includes establishing frameworks and training for 1319
1259 extend to biomarker testing, such as brain imaging results clinical communication and raising public awareness 1320
1260 [121] nor does it address protections for long-term care in- about AD and dementia. A first step in the latter involves 1321
1261 1322
surance, which is often a key factor for persons undergoing establishing clear guidance on communication about new
1262 1323
1263 AD gene and biomarker testing in the United States diagnostic categories and the role of neuroimaging bio- 1324
1264 [122,123]. markers [91,124]. Furthermore, both public health 1325
1265 The absence of social protections regarding the access programs and patients’ organizations have a role in 1326
1266 and use of an individual’s data about dementia risk poses supporting conversations about future health and 1327
1267 potential harms to individuals. In the United States, financial planning, while national and state legislatures 1328
1268 46.6% of adults surveyed worried a person would have may be better positioned to ensure development of 1329

1330 clear frameworks related to powers of attorney and uals in preclinical stages may also experience unique 1391
1331 advance directives related to care and research psychosocial concerns, such a stereotyped threat, burdens 1392
1332 participation. of planning for the future, and anticipatory disease- 1393
1333 specific distress. The effects may impact on an individual’s 1394
1334 1395
5.3. Allocation of services sense of mental and physical wellbeing as well as impede
1335 1396
their ability to live and work productively in society—be
1336 1397
To ensure the just introduction of new diagnostic technol- that due to, for example, change to personal identity, re-
1337 1398
1338 ogies, health care must be fairly allocated. This includes sponsibility, and authority or the result of being discrimi- 1399
1339 balancing the requirements of the population that is unim- nated against by others. 1400
1340 paired but at risk for developing the disease with individuals The psychosocial effects of early diagnosis warrant study 1401
1341 living with AD dementia. This balance between caring for to better support, reduce stigma, and shape accurate and
1342 the unimpaired and impaired is particularly salient, given appropriate expectations for individuals with AD and their 1402
1343 the potential impact of stigma on political and social families. Several important areas for study are emerging. 1403
1344 decision-making. For instance, as a result of the stigma asso- These include the need to discover how individuals are 1404
1345 ciated with dementia—including the relative exclusion of affected by learning their biomarker result, how these effects 1405
1346 the older population and people with symptomatic dementia may differ based on the type of test result individuals learn 1406
1347 from the public sphere—public discourse and funding could 1407
and when they learn it, and how individuals cope with the un-
1348 1408
become skewed toward relatively younger “charismatic” or certainty that comes with learning these facts about them-
1349 1409
1350 telegenic groups diagnosed with the latest technology as selves. This line of inquiry may help inform the safe and 1410
1351 having “preclinical Alzheimer’s disease.” This would detract effective translation of advances in early diagnosis into 1411
1352 both resources and attention from older, more impaired routine clinical practice, including development of the ap- 1412
1353 groups. By studying and illuminating the role of stigma in proaches that are needed to safely monitor and follow indi- 1413
1354 social and political discussions around health care priority viduals after disclosure and aid in developing interventions 1414
1355 setting, it might be possible to avoid or limit biased resolu- to optimize outcomes for individuals who learn their risk 1415
1356 tions. of AD. There also remains a need to understand how, if at 1416
1357 The fair introduction and use of new diagnostic technol- all, individuals engage behaviors and activities to manage 1417
1358 ogies also requires equitable access to these resources. The their risk or to plan for the future. 1418
1359 provision of new diagnostic tests based on neuroimaging is 1419
To accomplish these goals, PRO measures must be devel-
1360 1420
currently localized in centers with the requisite equipment oped to assess the effects of stigma on individuals who learn
1361 1421
1362 and expertise. This has the potential to perpetuate and exac- their biomarker-based risk of AD and their family members. 1422
1363 erbate inequalities in access to timely diagnosis and health Improving measurement will aid in the development of in- 1423
1364 care, not least as the population considered eligible for terventions to reduce the deleterious effects of living with 1424
1365 testing grows. Providing a high standard of care to people the knowledge that one has preclinical AD. In addition, mea- 1425
1366 who are privileged by virtue of either wealth or location risks sures to appraise the public’s views and expectations associ- 1426
1367 increasing the stigmatization of those who are not treated ated with AD may help inform messaging campaigns and 1427
1368 early, such that having symptomatic dementia becomes other population-based interventions to reduce public stigma 1428
1369 seen as an individual failure to seek care or as a consequence of the disease. 1429
1370 of lower socioeconomic status. Health policy actions are Advances in neuroimaging and other biomarker technol- 1430
1371 needed to ensure fair access to diagnoses and associated 1431
ogies are shifting the definition of AD away from a
1372 1432
therapies. symptom-based definition and toward a biologically
1373 1433
1374 defined stage. These developments could have dramatic ef- 1434
1375 fects on undoing the conflation of AD with other stigma- 1435
6. Conclusion
1376 tized states, such as mental illness and natural aging, by 1436
1377 Neuroimaging and other methods to measure AD bio- changing expectations that symptoms may be mutable 1437
1378 markers are changing the definition of the disease. Clinicians and shifting stereotypes that currently tend to rely heavily 1438
1379 may soon be able to routinely diagnose and treat AD in on the disease’s signs and symptoms. It will be important 1439
1380 cognitively unimpaired adults. This “preclinical” diagnosis to understand how these changes affect individuals, 1440
1381 would allow clinicians novel opportunities to slow cognitive including caregivers, particularly over time as symptoms 1441
1382 decline, but it would also bring challenges. It will fundamen- may begin and to understand how social aspects of iden- 1442
1383 1443
tally change the patient experience of the disease and tity—such as age, race, and gender—interact with these ef-
1384 1444
1385 thereby also the experiences of family and caregivers. fects, perhaps in ways that could exacerbate the burden of
1445
1386 Knowledge of AD biomarker status can affect how indi- caregiving for women or, alternatively, could offer opportu- 1446
1387 viduals feel about themselves (internalized stigma) and nities to reduce disparities in the participation of African- 1447
1388 how others judge them (public stigma). Emerging evidence Americans in research trials. 1448
1389 suggests this, in part, reflects the spillover of stigma expe- The advances emerging in AD are offering novel oppor- 1449
1390 rienced by persons with AD dementia. However, individ- tunities to improve the prognosis and clinical management

1450 of patients diagnosed with AD. It is critical to understand 1511

1451 and intentionally shape the language used when ushering RESEARCH IN CONTEXT 1512
1452 in these new clinical technologies. The decisions made 1513
1453 around choices in language may directly affect stigma 1514
1454 1. Systematic review: The authors reviewed the litera- 1515
that related to both an internalized sense of self and how
1455 ture using traditional (e.g., PubMed) sources and 1516
the general public judges individuals associated with the
1456 1517
disease. Decisions around language will also impact how meeting abstracts and presentations. Neuroimaging
1457 1518
individuals make meaning of learning they may have an is advancing a new definition of Alzheimer’s disease
1458 1519
1459 early diagnosis. It will be essential to engage clinicians, re- (AD). Using imaging biomarkers, clinicians will di- 1520
1460 searchers, and individual stakeholders in finding consensus agnose the disease based on the identification of pa- 1521
1461 on terminology that conveys accuracy, dignity, and person- thology and neurodegeneration in either cognitively 1522
1462 hood. impaired or unimpaired adults. Changing the defini- 1523
1463 Engagement of state and national regulatory and advo- tion of AD from a clinical to a biomarker construct 1524
1464 cacy agencies as well as patients’ organizations is needed will change the experience of living with the disease. 1525
1465 to help support individuals diagnosed early through both Relevant literature of AD stigma and AD early diag- 1526
1466 nosis is reviewed. 1527
individual-level resources and broad messaging about what
1467 1528
it means and does not mean to be diagnosed early with
1468 2. Interpretation: Advances in diagnosis may enable or 1529
1469 AD in terms of individuals’ social capital and wellbeing. interrupt the transfer of stigma from clinical to pre- 1530
1470 These efforts will also be essential for developing public pol- clinical stages of disease. These advances may also 1531
1471 icies that protect the rights and privileges of those who un- shift ways stigma of AD presents. 1532
1472 dergo testing to learn their biomarker risk of AD. 1533
1473 Advances in diagnostics may allow stigma related to clin- 3. Future directions: The article discusses conceptual 1534
1474 ical forms of the disease to spillover to affect individuals in and pragmatic challenges to addressing stigma as ad- 1535
1475 preclinical disease stages. Alternatively, neuroimaging and vances in early AD diagnosis move into routine care. 1536
1476 other advances in diagnostics are presenting new opportu- Areas for further investigation are described. 1537
1477 nities to interrupt AD stigma by changing the scientific 1538
1478 1539
and medical understanding of the disease. Strategic use of
1479 1540
these changes may aid to reduce stigma by altering the pub-
1480 1541
1481 lic image of the disease and improving clinical care for per- 1542
1482 sons who are diagnosed. References Q5
1543
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Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring - (2018) 1-16

REV 5.5.0 DTD DADM238_proof 19 March 2018 11:26 am ce

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476 Table 2 537

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1450 of patients diagnosed with AD. It is critical to understand 1511

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REV 5.5.0 DTD DADM238_proof 19 March 2018 11:26 am ce

REV 5.5.0 DTD DADM238_proof 19 March 2018 11:26 am ce

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