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Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick, MSN Texas Woman’s University September 25, 2013 1

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Page 1: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Who is that Stranger in the Mirror? A

Discussion of Mirrors for those with Dementia

Wyona M. Freysteinson, PhD, MN

June Kelsick, MSN

Texas Woman’s University

September 25, 2013

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Page 2: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Objectives

Examine one case study of a woman with

Alzheimer’s who saw “a stranger in the

mirror”.

Assess the “evidence”.

Review Lawton’s theory of environmental

gerontology and a phenomenology of the

mirror experience.

Discuss implications for research.

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Page 3: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

What are your chances?

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Page 4: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Dementia/Alzheimer’s Statistics Adults 65 and older + Baby boomers will reach 115

million by 2050.

Accounts for 20% of U. S. population.

Projected increase to 71% by 2050.

Sixth leading cause of death

Caregivers accounts 15.2 million (friends/families).

Every 68 seconds someone develops AD

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Page 5: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Alzheimer’s statistics

Page 6: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Problem?

Societal impact

Increase healthcare cost

From 200 Billion to 1.1

trillion (2050)

500 percent increase

Medicaid/Medicare

combined

Personal final strain

400 percent out of

pocket cost

Caregiver’s burden

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Page 7: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Inspiration for this Project

Personal

Diagnosis dementia / Alzheimer’s

Mom

Aunt

Trial and error/management of mirror

experience.

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Page 8: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Rose

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Page 9: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Rose’s Experience

Diagnosed with Parkinson at 76 y/o

Diagnosed with Alzheimer’s disease (AD) at 80

y/o.

Delightful

Active life style

Independent

Meticulous homemaker

Gardner

Farmer

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Page 10: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Rose

Raised several grandchildren, great

grandchildren.

Active member of her church.

Performed community services.

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Page 11: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Rose

Memory loss

Insidious forgetfulness

Frustration

Agitation

Depression

Hallucination

Delusion

Paranoia

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Page 12: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Rose

Morning routing care was challenging.

Mirror experience

Who’s that stranger

Rose gentle moved away from mirror.

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Page 13: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Rose

Observation

No agitation during oral care – looking

into half-length mirror in bathroom.

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Page 14: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Google

Google appears provide the most

information (antidotal accounts) of

mirrors and dementia.

In addition, advice (often confusing and

vague) is offered regarding what to do

with the mirrors for those with dementia.

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Page 15: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Google Stories

I suddenly heard a shriek coming from

mom's room. Then a crash! "Mom, what's

wrong?" I cried as I entered, seeing her

jewelry box laying on the floor, fallen

open, with her staring at the mirror

looking terrified. She shrieked again and

pointed at the mirror. Looking at the

reflection, she put her hands on her face

and then threw a hairbrush at the mirror. http://ezinearticles.com/?Why-Mirrors-Can-Be-Stressful-for-Patients-With-Alzheimers&id=6193754

Article Source: http://EzineArticles.com/6193754

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Page 16: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Google Stories

A couple of months ago, I noticed dad

talking to himself in the mirror.

Sometimes he slips into his happy little

world of talking to himself and he goes on

and on with conversations.

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Page 17: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Google Advice

“Most of us are familiar with the

phenomenon whereby the Alzheimer

patients do not recognize their own

reflection any more, either in a mirror or

in a car window”.

Question: How do we become familiar with

this phenomenon?

http://www.caregiver.com/channels/alz/articles/altered_perceptions.htm

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Page 18: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Google Advice

I read recently that some Alzheimer’s

patients get confused when they look in

the mirror and see themselves. Well,

obviously they don’t see themselves, they

see a stranger. If that happens, it would be

a good idea to cover all the mirrors.

http://www.parentgiving.com/elder-care/home-safety-checklist-loved-ones-with-dementia/

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Page 19: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Google Advice

Mayo Clinic:

◦ Reduce the number of mirrors. People with

Alzheimer's may find images in mirrors

confusing or frightening.

Question: Which mirrors should one reduce?

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Page 20: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Observational “Study”

In 1996, nurses placed several mirrors of all

sizes on a dementia unit.

71% positive responses of laughter, enjoyment

and an apparent increase in self-awareness.

One man displayed anger and despair, followed

by calmness.

Limitations: No IRB, no control, etc.

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Page 21: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

1960’s Grandma Fannie

1970’s Miss Peace

1974 Bed bath Lab

1990 Dean says No

Dr. Freysteinson’s Inspiration for

this project

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Page 22: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Inspiration for a Survey Study of Mirrors in

Long-Term Care (LTC)

In a study of women viewing

self in the mirror, one woman

living in a nursing home had

not seen her body from the

waist down in eight years.

Her greatest concern was she

could not see if her catheter

bag was showing (Freysteinson, 1994).

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Page 23: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Survey Study of Mirrors

in Long-term care (LTC)

Mirrors in an empty, single resident room in

ten LTCs were measured.

Mirrors for the bedbound, wheelchair bound

and full body view were examined.

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Page 24: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Results

One LTC had a

mirror for the

bedbound resident.

Mirrors appropriate

for a resident in a

wheelchair were

available in only 7/10

LTCs.

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Page 25: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

View of the Whole Body

10% of LTCs had one

full length mirror in

which one could

view the full body.

This mirror was in a

public front foyer.

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Page 26: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

What I could not publish…

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Page 27: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

The Mirror Dilemma

At first, simply getting rid of the mirrors

for someone with dementia/Alzheimer’s

sounds like a relatively simple solution.

However, using Lawton’s theory of

environmental gerontology…let’s focus

on the value of mirrors.

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Page 28: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Lawton’s Theory of

Environmental Gerontology

Support

Therapeutic Environment

Maintain

Stimulate

Three Functions of the

Residential Environment

Lawton, 1989

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Page 29: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Maintain

The maintaining function of the environment is

to create an environment which feels like home.

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Page 30: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Maintain One’s Appearance

Mirrors within a

home like

environment allows

one to continue to

maintain one’s

physical appearance.

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Page 31: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Support

A supportive environment works to support

reduced or lost cognitive abilities.

Belgium researchers suggested 11/51 patients in

a post-comatose state tracked self in a mirror

but did not track anything else (Vanhaudenhuyse et al, 2008) .

Nurses in Israel found 100 elders with dementia

had increased self-recognition and a desire to

care for their own appearance when mirrors

were added to the nursing unit (Tabak et al, 1996).

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Page 32: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Stimulate

Stimulating

environments

enhance well-being

and social

interaction.

Mirrors provide a

novel array of stimuli.

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Page 33: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Questions

Are mirrors which

simply help to make

an environment feel

like home are

appropriate in homes

(including LTC

homes) where a

person with

dementia may live?

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Page 34: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Phenomenology of Mirror-ing

Two studies (Freysteinson 1994 and 2011)

uncovered the phenomenology of the

experience of mirror-ing for individuals

who do not have dementia.

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Page 35: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Phenomenological Interpretation

Four key meaning moments emerged in the

interpretation of viewing self in the mirror:

I am

I decide

I see

I consent

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Page 36: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

I Am

Genetics, life experiences and environment help to

create a unique way of being-in-the-world.

I am self-conscious.

I am wise.

I am very blessed.

I am Scandinavian.

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Page 37: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

I Decide

Curiosity

I think it is just a natural curiosity to look and see what’s happening to you.

Medical Care

I thought that (bathroom) was the most logical place (to change the dressing).

Keeping up Appearances

You make your self look better (with the mirror) by

using prosthesis or whatever means there are for beauty.

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Page 38: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

I See: With my Mind’s Eye

Apprehension

I was going to have a mastectomy so I used to see myself in the mirror, and try to imagine how I would look.

Expectation

This scar is uglier than I thought it would be. I thought it would be a little bit prettier.

Hope

I used to imagine before I went to the mirror that my breast would still be there, that this has all been a dream.

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Page 39: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

I See: With my Eyes

It depends on how your eyes are I guess because my eyes

aren’t good either.

Also I’ve got macular degeneration and I’ve already had

glaucoma …One side (of the mirror) is magnified and the

other one isn’t. So I really can get a good look.

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Page 40: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

I See the Meaning: Understanding

All women understood part of their body to be

unattractive, unsightly or repulsive.

Many emotions accompanied this understanding:

shock, surprise, disgust, unworthiness,

anger/frustration, fear, sadness, relief & happiness.

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Page 41: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

I See the Meaning: Understanding

(I was) looking in the mirror constantly. …It was gross, it was

so disgusting. I couldn’t hardly face myself or look at it

because it was so disgusting.

But I was so ecstatic that it (mastectomy incision) was

closed! See the attitude change? I’m like look at this, it’s

stitched closed!

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Page 42: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

I See the Meaning: Understanding

Distanciation

You’re seeing that every time you stand in front of the mirror.

It looks real ugly.

Appropriation

My scar is beginning to fade.

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Page 43: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

I See the Meaning: Explanation

Medical

I don’t know how to explain what I am talking about. It is like they (doctors) took a lot of flesh off of me.

Theological

You know that’s the devil in there.

Societal You’d be surprised what men say about this, this surgery. They can’t cope with it.

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Page 44: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

I Consent

Suffer

You have your days where you could sit there and have a pity party.

Acceptance/Acquiesce I still do look in the mirror and wish I had more you know up there but may have to learn to accept it, the way it is.

Thrust Forward into the Future

I sure hope they can fix the bruises on my face so that I do not look bad in the coffin.

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Page 45: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Questions

In offering or having mirrors available in LTCs

do nurses provide an enhanced opportunity for

residents to recognize self, enhance well-being,

and social interaction?

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Page 46: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Questions

One can find antidotal information in

Google that the “strangers” an individual

with Alzheimer's sees in the mirror may:

◦ Be a sign of early Alzheimer's

◦ Occur in Mid-stage Alzheimer's

◦ Occur Late-stage Alzheimer's

How do we best determine at what stage

“mirror confusion” may occur in this

population? 46

Page 47: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Questions

How do we explore the experience of the

mirror for those with dementia/Alzheimer’s?

Is mirror distress a sudden symptom or is there

a mirror distress trajectory pathway from

better to worse?

How do we develop a tool to measure mirror

distress?

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Page 48: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Questions

Do persons with

dementia see

“strangers” in some

mirrors more than

other mirrors?

Large mirrors? Mid-

size mirrors? Small

handheld mirrors?

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Page 49: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Questions

Does lighting effect the mirror

experience?

Are mirrors commonly used for ADL’s

less likely to cause mirror distress as

compared to mirrors that a person with

dementia does not commonly look in?

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Page 50: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Questions

If a person sees a “friend” or a delusion of

an earlier self in the mirror, should we

remove the mirrors? How do we best

assess this for this experience?

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Page 51: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Questions

Does the addition of accessible mirrors

enhance the ability of a person with dementia

to perform activities of daily living?

Does the person with dementia who has access

to mirrors have a greater chance of self-

recognition?

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Page 52: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Questions

How do we objectively determine the

number and kinds of mirrors for this

population?

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Page 53: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Questions

How can loved ones and other caregivers

in the home determine how to balance

the potentially positive value of mirrors

with the potential mirror distress?

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Page 54: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Discussion

What and how do we begin to research

this phenomenon in this fragile

population?

What should this research trajectory look

like?

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Page 55: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Rose Wife

Mother

Grandmother

Sister

Aunt

…was my beloved mother.

Rose died on May 13, 2001 a the age of 86.

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Page 56: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Rose’s Family

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Page 57: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Discussion

Need for research in this area.

Research regarding the use of mirrors in the dementia/ Alzheimer’s population group will uncover a broad spectrum of knowledge.

Nursing and caregiver implications must be addressed.

Rose may have benefited from such knowledge.

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Page 58: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

In Conclusion

Evidence in this field appears to be an

essentially unexplored field.

Currently we do not know how many questions

there are and what those questions may be.

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Page 59: Who is that Stranger in the Mirror? A Discussion of ...Who is that Stranger in the Mirror? A Discussion of Mirrors for those with Dementia Wyona M. Freysteinson, PhD, MN June Kelsick,

Contact Information

Wyona M. Freysteinson, PhD, MN

[email protected]

June Kelsick, MSN

[email protected]

References available on request.

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