The Messages We Send: Stigma Toward Persons Living with

Dementia and How to End It

Shana D. Stites, PsyD, MS, MACynthia Huling Hummel, BS, MDiv, DMin

Part of the National Alzheimer’s and Dementia Resource Center webinar series sponsored by the Administration for Community Living.

The Messages We Send: Stigma Toward Persons Living with

Dementia and How to End It

Shana D. Stites, PsyD, MS, MACynthia Huling Hummel, BS, MDiv, DMin

Shana Stites, PsyD Cynthia Huling Hummel

Learning Objectives• Describe and define types of stigma of dementia• Describe and give examples of the role of

language in stigma of dementia• Define what it means to use a strength-based

approach with persons who have dementia• List 3 examples of person-centered language that

counter stigma of dementia

What is Dementia?Dementia• Chronic, progressive impairment in >1 “domain of

cognition”: Memory, language, executive function, attention, coordination, social cognition

• Can have one or more of a number of different causes

Mild Cognitive Impairment• Impairment in 1 “domain of cognition”• ? “pre-dementia”

DeliriumAn abrupt and short-term change in the brain that causes mental confusion and emotional disruption

Clinical ObservationsPatients with dementia are not all alike

• Age of onset• Family history• Initial symptom• Cluster of symptoms• Most troublesome symptom• Rate of progression• Availability of and response to treatment• Caregiving relationship(s)

Caregivers and Family Members• Dementia is unique in the ways its impact extends beyond the person

directly experiencing the cognitive and functional declines.

• A caregiver is a person who has a formal or informal role providing care to a relative or friend with dementia.

– Helps with a range of activities of daily living – dressing, grooming, household chores, managing finances, arranging services, and social and emotional wellbeing

– Often spouses and adult daughters

– Sometimes do not self-identify as “caregivers”

– Can experience physical injury, financial hardships, stigma and discrimination, guilt, and other poor outcomes

– When were you diagnosed? – How were you diagnosed? – What did it mean to you to be

diagnosed?– Does anyone help you?

Cynthia Huling Hummel

Then

Now

Types of Stigma• Internalized Stigma: Negative associations about a characteristic impact

on one’s feelings, judgements, or expectations about one’s self

• Public Stigma: Public fear, social distance, and negative reactions directed

toward others based on a characteristic understood to be negative

• Spillover Stigma: Stigma related to one particular characteristic generalizes

to others based on association

Alzheimer’s Disease Dementia Stereotypes

• Hallmarks of a disease• A leading cause of disability that has no

medical therapies to slow its progression.• Evoking stereotypical features, usually reflecting

the most severe stages of disease• Severe memory loss• Unable or impaired ability to communicate• Loss of identity• Loss of significant relationships• Poor hygiene

Stigma can have harsh consequences • leads people to patronize, stereotype, isolate, or

discriminate against those with Alzheimer’s disease

• discourages a person from seeking diagnosis, hinder a patient’s quality of life, discourage participation in Alzheimer’s disease research, and inhibit members of the public from adequately educating themselves

Understanding stigma of dementia may help inform how to change it and/or how to help individual’s overcome it.

Impact of Stigma

– How has being diagnosed affected you?

– Has stigma impacted you? ○ “Just talk louder”!

Cynthia Huling Hummel

What do we know about stigma?

Methods • Web-based experiment

• Random sample of adults from the general population (N=1,025)

• Randomized to read 1 of 9 vignettes about a man• with mild Alzheimer’s disease, traumatic brain injury, or

no diagnosis• whose prognosis worsens, improves, or remains

unchanged

7 domains assessed by the modified Family Stigma in Alzheimer’s Disease Scale (FS-ADS; Werner et al. 2011)

– Structural Discrimination - worrying the person encountered institutionalized discrimination, like employers would discriminate against him or he’d be unable to get long-term care insurance

– Negative Severity Attributions - expecting certain symptoms like speaking repetitively or suffering incontinence

– Negative Aesthetic Attributions - expecting poor hygiene, neglected self-care, and other appearances that provoked negative judgments

– Antipathy - endorsing feelings of disgust or repulsion– Support - expecting others would feel concern, compassion, or

willingness to help– Pity - expecting others would feel sympathy, sadness, or pity– Social Distance - expecting the person to be ignored or have

social contacts limited

• Higher scores indicate stronger endorsement

Measures

Prognosis rather than diagnosis drives public stigma

Johnson, R., Harkins, K., Cary, M., Sankar, P., & Karlawish, J. (2015). The relative contributions of disease label and disease prognosis to Alzheimer’s stigma: A vignette-based experiment. Social Science & Medicine, 143, 117–127.

How people react differs by gender and beliefs about Alzheimer’s disease

Stites, S.D., Johnson, R., Harkins, K., Sankar, P., Xie, D., & Karlawish, J. (2016). Identifiable Characteristics and Potentially Malleable Beliefs Predict Stigmatizing Attributions toward Persons with Alzheimer’s Disease Dementia: Results of a Survey of the U.S. General Public. Health Communication, 1–10.

259 older adults (mild cognitive impairment,

Alzheimer’s disease, normal cognition)

Patients were asked 3 diagnosis-related items

Do you have a diagnosis of [“Alzheimer’s disease” / “Mild Cognitive Impairment”]?

“What about a little bit of Alzheimer’s disease?”

“What about dementia?”

For patients, awareness of diagnosis correlates to impairments in quality of life (QOL)

Stites,S.D., Karlawish, J., Harkins, K., Rubright J, & Wolk, D. (2017). Awareness of Mild Cognitive Impairment and Mild Alzheimer’s Disease Dementia Diagnoses Associated with Lower Self-Ratings of Quality of Life in Older Adults. The Journals of Gerontology: Series B, 72(6), 974–985. https://doi.org/10.1093/geronb/gbx100

Awareness of diagnosis correlates to impairments in mood and stress

Stites, S. D., Karlawish, J., Harkins, K., Rubright, J. D., & Wolk, D. (2017). Awareness of Mild Cognitive Impairment and Mild Alzheimer’s Disease Dementia Diagnoses Associated With Lower Self-Ratings of Quality of Life in Older Adults. The Journals of Gerontology: Series B. https://doi.org/10.1093/geronb/gbx100

Poin

ts o

n Sc

ale

What do we do about stigma?

Art of the Mind Gallery

Most recent exhibit, featuring Carl Duzen, Penn Memory Center patient, with wife and artist Susan Jewett

Public Messaging

Public messages tailored to the

audience to educate and mitigate

public stigma.

The messages are available, free of

charge, to organizations serving older

adults.

Social Media

@Penn_Memory491 followers

PennMemoryCenter583 likes

@MakingSofAlz299 followers

MakingSenseofAlz786 likes

Clinician Publications

Guidelines for clinicians caring for patients with cognitive impairments and their families

What do they all share in common?

Words we use either drive or disrupt stigma.

Words Matter

• How language drives stigma– Perpetuates stereotypes– Objectifies – Marginalizes– Invalidates– Dismisses

• How language disrupts stigma– Respects the individual– Personalizes and validates

experiences– Fosters dignity– Helps individuals access self-

care

Models that Inform Our LanguageTwo relevant to persons with dementia are the religious model and medical model.

Religious Model:

Promotes phrases like “afflicted with” or “stricken by” or “suffers from.” Reflects a belief that the condition somehow resulted from divine judgment or that the person was a victim or somehow morally deviant. The terms assume that a person is suffering or does not have a meaningful quality of life.

The Medical Model:

Promotes language that sees individuals as “patients” with a “sickness” or “disease” that needs to be “cured.”

Person Centered Language (PCL)

Purpose:

To recognize the impact of language on thoughts and actions,

to ensure language does not diminish the uniqueness and

intrinsic value of each person and to allow a full range of

thoughts, feeling and experiences.

Sometimes also called “Person-first language”, which stands in

contrast to “identity-first language (IFL)”

Six Principles of Person Centered LanguageI. Personhood A standing or status that is bestowed upon one human being by others in the context of relationship and social being. It implies recognition, respect and trust.

“She’s a zombie.” “She’s a person.”

II. Dignity and Respect Create positive conditions where the person can live without fear of shame or ridicule; where people are treated with warmth and authenticity, listened to without judgment and are given opportunities for independence and self-expression.

“He’s lost his mind.” “I’m having a hard time understanding what he needs.”

III. Acceptance and Understanding Accept each person with unconditional positive regard. Accept behavior as a form of communication that expresses unmet needs or emotions and helps the person continue to enjoy basic personal freedoms.

“He’s just shouting nonsense.” “He sounds upset.”

Six Principles of Person Centered LanguageIV. Relationships Support and preserve relationships. Support the person in the development of new positive relationships.

“No one visits him.” “John has 3 children but they live far away. He misses them. Sally has 3 children too. I’ll introduce them.”

V. Recognition and individuality Recognize the individuality of each person’s unique life experiences, personality, culture, values, beliefs and opinions.

“Last door on the right’s yelling.” “Reginald’s a Vietnam Veteran. He sometimes struggles with those memories.”

VI. Relationships of trust Provide the conditions necessary to satisfy fundamental needs and create a climate for personal growth and understanding by providing a relationship based on trust.

“I don’t care one way or another.” “Mrs. Davis, I hear that you want to go out. How about we walk to the picture window to look outside?”

PCL is a Strength-based Approach

A strength-based approach moves the focus away from

deficits and toward strengths and resources of a person.

• What strengths or assets does the person possess?

• How do these assets support health, wellbeing, and

empowerment?

ExamplesAvoid identity-first language (IFL)

Use Person Centered Language(PCL)

Demented Person living with dementiaScreamer, Sundowner, Wanderer Describe as a specific behavior

“the person”“becomes restless later in the day”“loses his way”

Adult Day Care Adult Day CenterCaregiver Ask directly for preferred termBurden of caregiving Effects of providing careNon-compliant Person who pushes medication away

when offeredSufferer, Victim, Burden Person with dementia

Can you share an experience from when a person said something that was stigmatizing and what you wish they had said instead? And, what you wish they had done if they realized they had said something hurtful?

Cynthia Huling Hummel

Everyday Strategies Take time to eliminate outdated and offensive words from your

vocabulary Avoid using the language of disability to describe potentially

negative traits Avoid words referring to people as inanimate objects,

conditions, or diseases Take time to understand why individuals may prefer person-

centered language over identity-first language Recognize cultural assumptions Re-examine the stereotypes that promote stigma Find out and care about the preferences of people with

dementia Address poor word choice of others with gentle education.

Most people don’t mean to offend

Thank you!

Stites@upenn.edu

@SDStites

References Stites, S., Johnson, R., Harkins, K., Sankar, P., Xie, D., & Karlawish, J. (2016). Identifiable

Characteristics and Potentially Malleable Beliefs Predict Stigmatizing Attributions Toward Persons with Alzheimer’s Disease Dementia: Results of a Survey of the U.S. General Public. Health Communication, 33(3), 264-273. doi: 10.1080/10410236.2016.1255847

Johnson, R., Harkins, K., Cary, M., Sankar, P., & Karlawish, J. (2015). The Relative Contributions of Disease Label and Disease Prognosis to Alzheimer's Stigma: A Vignette-based Experiment. Social Science & Medicine, 143, 117-127. doi: 10.1016/j.socscimed.2015.08.031

Mozersky, J., Sankar, P., Harkins, K., Hachey, S., & Karlawish, J. (2018). Comprehension of an Elevated Amyloid Positron Emission Tomography Biomarker Result by Cognitively Normal Older Adults. JAMA Neurology, 75(1), 44. doi: 10.1001/jamaneurol.2017.2954

Stites, S., Karlawish, J., Harkins, K., Rubright, J., & Wolk, D. (2017). Awareness of Mild Cognitive Impairment and Mild Alzheimer’s Disease Dementia Diagnoses Associated With Lower Self-Ratings of Quality of Life in Older Adults. The Journals Of Gerontology: Series B, 72(6), 974-985. doi: 10.1093/geronb/gbx100

Stites, S., Rubright, J., & Karlawish, J. (2018). What Features of Stigma do the Public Most Commonly Attribute to Alzheimer's Disease Dementia? Results of a Survey of the U.S. General Public. Alzheimer's & Dementia, 14(7), 925-932. doi: 10.1016/j.jalz.2018.01.006

Stites, S., Harkins, K., Rubright, J., & Karlawish, J. (2018). Relationships Between Cognitive Complaints and Quality of Life in Older Adults With Mild Cognitive Impairment, Mild Alzheimer Disease Dementia, and Normal Cognition. Alzheimer Disease & Associated Disorders, 1. doi: 10.1097/wad.0000000000000262