The Peace with Dementia Rosary...The Peace with Dementia Rosary will guide you through the...

Preview of The Peace with Dementia Rosary

You are reading a preview of the book The Peace with Dementia Rosary due out in late Fall 2018. For alerts on when the book is available, please either leave a dementia prayer request on the prayer wall

at www.DementiaRosary.com or email [email protected].

This preview is copyrighted, but I encourage you to share via print, email, social media, and other

ways.

By sharing this, you are a Champion for persons living with dementia and their care partners.

Welcome to our Community!

All rights reserved 2018

Matthew W. Estrade

Care Partner Mentoring, LLC

www.PeaceWithDementia.com

www.DementiaRosary.com

All images in this book are used with paid permission

from Restored Traditions, a company that restores

royalty-free Catholic artwork.

This book should not be considered medical, financial,

legal, spiritual, or any other professional advice.

Please meet personally with a professional who can

assess your unique situation and partner with you and

your family.


CONTENTS Dedication i

Foreword ii

How to Use This Book v

Structure of the Rosary 1

Chapter 1: Introduction 2

Chapter 2: Joyful Mysteries 5

Chapter 3: Luminous Mysteries 16

Chapter 4: Sorrowful Mysteries 27

Chapter 5: Glorious Mysteries 38

Appendix A: References and Notes 49

Appendix B: Recommended Books and Websites 61

Appendix C: Blog Articles 66

U A Worthy Resolution: Visiting a Loved One with Dementia and Their Care Partner

U Maintaining Dignity in Dementia U Meaningful Activities for Persons Living with

Dementia: Why and How U Individualized Music in Preventing and Soothing

Agitation in Dementia

Appendix D: Guide Sheets (Fillable worksheets) 76

U Care Partner Guide to Maintaining Dignity U Assessment of Personal Music Preference

(Two versions) U Positive Aspects of Care Partnering U When Friends Dry Up

Acknowledgements 88

About the Author 89


i

A.M.D.G.

Dedication

This book is dedicated to families who are on the

difficult journey of experiencing dementia. May this

book offer them peace, help them take action, and find

meaning in this challenging time.



ii

Foreword

Growing up Catholic, the Rosary was an ever-

present fixture in my life. As early as 1st Grade, we

were learning about the Rosary and how to

correctly pray the Rosary. I still have the first Rosary I

ever received on the day of my First Communion and I

also have a Rosary blessed by Pope John-Paul II.

As a child, I remember my Mother, the most devout

Catholic (in my opinion) I've ever known, going to daily

Mass at St. Agnes Church, praying the Rosary before

Mass started. My Grandparents would sit in their

bedroom each night at 8pm and listen to the radio

broadcast of the Rosary. I'd hear my Grandmother's

sweet voice reciting the Hail Mary's, Our Father's and Glory Be's in English and my Grandfather reciting

those same prayers in Cajun French. Although he

spoke English (with a strong Cajun accent) he learned

how to pray the Rosary from his parents who spoke

Cajun French. In hindsight, I wish I would've paid more

attention and learned the Cajun French version of the

Rosary.

So, when I first met Matt Estrade at a conference in

Lake Lanier, Georgia in April 2018 and learned he was

from my hometown of New Orleans, LA, was working

at Ochsner Hospital (a place I knew very well), and

was writing a book, not just about the Rosary but a

"Dementia Rosary," I was very intrigued.

You see, in 2014 at the age of 54, I was diagnosed

with Alzheimer's Disease. My Great-Grandmother,

Grandfather, and Mother, whom I referenced earlier,

all died with Alzheimer's Disease and my Father died

with Vascular Dementia. The Peace with Dementia Rosary that Matt created is so relevant, so present, so

relatable. So, when he asked me to write the foreword

for his book, I felt both honored and proud, knowing I


iii

would have the strength and knowledge of my Mother

and Grandparents guiding me.

As I write this, I glance up and notice on one of the

shelves of my bookcase, a Rosary I draped over a

statue of the Blessed Mother, a statue my Mother kept

in a curio cabinet. The Rosary is purple (the color used

to represent Alzheimer's Disease) and the decades of

the Rosary, instead of having the normal beads, are

hearts. This was gifted to me during my marriage to

Shannon. She knew of my deep Catholic roots

and Catholic faith. I don't remember the occasion for

which she gave it to me, but what I do remember is the

comfort it gave to me then and still does today.

The Rosary is not just prayers said over and over

again. It is a combined form of prayer and meditation

that has been around for over 1,000 years. Before the

beads were placed on a small chain or rope, pebbles

were carried around in small pouches so whoever was

praying could keep track of the number of prayers

being said. Later, small pieces of wood were placed on

a string to easily keep track.

Matt has taken the Rosary to a different level. He has

combined the twenty decades of the four Holy

Mysteries with specific prayers for individuals living

with Dementia, for their Care Partners, for their

families, and more. It's not changing the meaning of

the Rosary, but rather directing the prayers towards

the world of Dementia. Trust me, we can all use a

prayer or two to help us through each day.

I know I spoke of my Catholic Faith at the beginning of

this piece, however, you don't need to be Catholic to

pray the Rosary. That's the beauty of this book. Matt

guides you through the process of how to pray the

Rosary. It's a blueprint for you to utilize.


iv

My hope is that one day, there will be an Alzheimer's

Survivor, a Parkinson's Survivor, an FTD Survivor, a

Vascular Dementia Survivor or a Survivor of any type

of Dementia. Until then, your prayers are welcome. We

would ALL be appreciative and on a personal note, I

WHOLEHEARTEDLY THANK YOU!

Brian LeBlanc International Alzheimer’s Advocate

"I Have Alzheimer's BUT . . . it DOESN'T have ME!"

https://abitofbriansbrilliance.com/

June 28, 2018

Pensacola, Florida


v

Thank you for joining our community

praying The Peace with Dementia Rosary.

Education Intentions Community

By purchasing this book, you are supporting more

educational resources like The Peace with Dementia Podcast, The Peace with Dementia Blog, underwriting

my research projects like the impact of education on

ambiguous loss of dementia care partners, and

expanding the reach of the information through

conference presentations. Most importantly, you are creating a community of families praying for families during a very challenging time. For all of

this, I am very grateful and wish you God’s blessings.

How to Use This Book

Just like the decades of the Holy Rosary of the

Blessed Virgin Mary, which takes us on the journey of

joy, sorrow, and glory, so too does the journey of

dementia. Although the experience of dementia and

dementia care partnering is not exactly the same for all

families, there are common themes on each journey

that consist of many ups and downs. The ups may be

far less common than the downs for you, and one

purpose of this Rosary is to recognize the current ups

and increase the positive moments on the journey.

The Peace with Dementia Rosary will guide you

through the traditional Rosary, while offering dementia

education and a special prayer request for each

decade of Hail Mary’s.

This book is written for persons living with dementia

and their care partners. I encourage you to include the

person living with dementia in this Rosary whenever

possible, even if you are simply sitting with them or

holding their hand as you recite the prayers. Persons


vi

living with dementia tend to retain long-term memories,

such as prayers said during their lifetimes. If the

prayers, education, or intentions are troublesome for

the person living with dementia, say a traditional

Rosary with them. Experiment to find the best time of

day for them to pray. If they are not interested or grow

frustrated in praying at any time, consider praying

alone or with a group.

Education

Each decade offers education on a specific aspect of

dementia. The content was created through my

experience as a gerontologist and as a care partner

support group facilitator of over 170 sessions (and

counting). The appendix of the book contains

references to scientific journals, websites, and books.

The education is brief enough to read (or omit) while

reciting the Rosary. It is important to remember that

each person and family’s situation is unique and may

not be applicable to everyone. Common sense should

be considered and this book is just the beginning of

your education, not a substitute for professional

advice.

Intentions

The intentions found for each decade are based on the

aforementioned education and guide our petitions to

Mary. If a specific intention does not apply to you, pray

for others who need them. You are encouraged to add

to the intentions in your recitation of the Rosary.

Community

As you may already know, there is extreme power in

prayer. When we say The Peace with Dementia Rosary at home, in a care community, at a dementia

friendly church, or together on-line, we are creating a

community of prayer towards a common cause. Just


vii

like the benefits of a support group, we are stronger

when we know that we are not alone on this journey

with dementia.

I encourage you to visit www.DementiaRosary.com for

opportunities to:

• Write a specific request on the Dementia Prayer

Wall so others can pray for you and your family

• Pray for other families’ requests on the

Dementia Prayer Wall

• Participate in online recitations of the Rosary

• Find or start a Peace with Dementia Rosary

group in your community

• Continue learning about dementia

While Catholics pray the Rosary, we welcome all faiths - or even those who are spiritual without a formal religion - to write a prayer request and to pray for other requests. Also feel free to listen or recite the Rosary with us.

Further Learning The appendix is structured to offer resources to

continue exploring your interests. The resources

include scholarly references, articles, audio podcasts,

guide sheets for taking action, book recommendations,

and websites for further learning.

The Rosary is not a substitute for professional medical

advice or treatment of medical symptoms (pain,

infection, fever, etc.) or psychological symptoms such

as depression, with which many care partners wrestle.


1

The Structure of The Rosary

Make the Sign of the Cross

Apostles Creed Our Father 3 Hail Mary’s Glory Be

Announce the specific decade of the Mystery

Our Father 10 Hail Mary’s Glory Be Fatima Prayer Continue with all five decades for the day

Hail, Holy Queen O God, who only begotten Son…

St. Dymphna, Patron Saint of brain disorders, please

pray for us!

St. Joseph, Patron Saint of care partners, please pray

for us!

Make the Sign of the Cross

Amen.

Chapter 1

Introduction

What is Dementia?

Dementia is a broad term used to describe a group of

chronic symptoms that may include memory

impairment disrupting life, diminished judgment,

inability to plan, challenges with words and

communicating, disorientation of time and place, loss

of depth-perception, personality changes/mood

swings, and other symptoms. While dementia includes

a group of common symptoms, irreversible conditions

such as Alzheimer’s disease, Dementia with Lewy

Bodies (DLB), vascular dementia (strokes), mixed

dementia, or other diseases are the causes. Sadly,

there is no solution to reverse or stop the progression

of these dementia types. If the primary cause of a

person’s dementia is an infection, vitamin deficiency,

depression, thyroid issue, or poor sleep, for example,

these potentially can be addressed for improvement.

Care Partners and Persons Living with Dementia While I did not coin the term, I am very fond of using

“care partner” over caregiver or caretaker. It describes

a two-way relationship – a true partnership – between

a care recipient and someone caring for them. In any

partnership, both people (or groups) contribute to the

relationship, offer feedback, listen, and give respect.

The same can be said for the experience of dementia.

If the person living with dementia is not contributing to

form a partnership, we need to ask ourselves if we are

encouraging their contributions and being open to their

input. As I will touch upon in this book, to allow our

loved one to contribute and offer feedback on their

care is to give them a chance to improve their self-

2


dignity. The more that we can take our cues from the

person living with dementia, the better we can provide

an individualized care for improved quality of life. After

all, we are unique individuals and you may agree that

we enjoy our lives more when our own preferences are

satisfied.

For example, if your loved one exhibits behavioral

expressions that frustrate you, perhaps there is an

individual need that you would like to address or

maybe there is a stressor bothering them that you do

not understand. There is a good chance that if you

discover and address it – and these are not always

obvious – their stress will decrease and therefore, your

stress will decrease. Persons living with dementia are our teachers, if we will listen.

“Person(s) living with dementia” is another term that I

use throughout this book. Just as with term “care

partner,” there is an important reason for using it.

Many in our society believe that the occurrence of

dementia is a death sentence. While there may be

bleak moments in the road ahead, one does not need

to give up on life or have others give up on the person

living with dementia. To paraphrase Dr. Christopher J.

Johnson, one of my mentors who teaches and

researches at Texas State University, dementia is a

disability that can be lived with just like other

disabilities such as diabetes, cancer, and Parkinson’s.

The “living with” part of the phrase communicates that

one is adjusting and making accommodations to have

the best life possible under these challenging

conditions. I do not ever correct others into using these

two terms; however, I use them as much as possible in

my speaking, podcasting, and written communication

to set an example.

3


On Research While The Peace with Dementia Rosary is not

intended to be a technical book on dementia, this book

contains information from experience and supported

by research found in peer-reviewed academic journals.

References are provided so that the reader can further

examine topics and the specific research studies.

While research articles published in journals can be

trusted, there are no perfect studies. Articles in

journals usually describe “limitations” that explain why

the study is not perfect. For example, one limitation

may be a small sample (number of participants

studied); generally, the more participants in a study,

the more we can apply the results to a larger

population. Other limitations of a study may include

only using a specific population, such as only female

spousal care partners; therefore, we cannot assume

that the study results also apply to male spousal care

partners. I mention all of this to say that while research

is reputable, you are not weird if some of this research

does not seem to apply to your situation. If you are

reading the e-book, there may be a clickable link to a

research study’s summary, known as an abstract. If

you are reading the paperback version of this book,

you can look up abstracts with the Google Scholar

search engine.

4


Chapter 2

The Joyful Mysteries

1. The Annunciation (Humility)

And coming to her, he said, “Hail, favored one! The

Lord is with you.” But she was greatly troubled at what

was said and pondered what sort of greeting this might

be. Then the angel said to her, “Do not be afraid,

Mary, for you have found favor with God. Behold, you

will conceive in your womb and bear a son, and you

shall name him Jesus.”

Luke 1:28-31

5


The Probable Diagnosis

It can be frightening to take the first step of seeing

your primary care physician when you suspect that

you or a loved one may be having memory or other

cognitive (brain) changes. After all, what if the doctor

finds something wrong? Will my car keys be taken

away? Will I have to stop working or doing other

activities? These are valid concerns, but all activities

do not cease with a probable diagnosis. Laboratory

and cognitive tests can rule out probable dementia if

the symptoms are attributed to an infection, vitamin

deficiency, depression, thyroid, poor sleep, or other

conditions. If Alzheimer’s disease or another type of

dementia is suspected, this probable diagnosis, while

troubling, could allow the whole family to plan ahead

for future services and transitions.1 Medical

professionals may also be impacted with regard to

probable diagnoses. Sometimes doctors, as

experienced as they may be, face challenges and

discomfort in giving a probable diagnosis. However,

avoiding a probable diagnosis can present hazards if

not addressed.2

O Blessed Virgin Mary, we pray that we have the

courage to seek medical advice even when we do not

want to think about the possibility of dementia. We

pray that care partners can persuade our loved one to

attend the medical appointment and that we have

strength if there is news we do not wish to hear. We

also keep doctors and other medical professionals in

our intentions that they communicate a diagnosis with

courage, clarity, and sensitivity.

Our Father 10 Hail Mary’s Glory Be Fatima Prayer

6


The Joyful Mysteries

2. The Visitation (Love of neighbor)

When Elizabeth heard Mary’s greeting, the infant

leaped in her womb, and Elizabeth, filled with the Holy

Spirit, cried out in a loud voice and said, “Most blessed

are you among women, and blessed is the fruit of your

womb.” Luke 1:41-42

7


Visiting Loved Ones with Dementia

Often after a probable diagnosis of dementia, and

sometimes before, family and friends dry up; they visit

less often (or not at all) because they are

uncomfortable. Perhaps they do not know what to say

or are concerned they may say the wrong thing.

Perhaps they are denying the changes and want to

remember their loved one or friend as they were.

Whatever the reason, the absence of family and

friends isolates both the person living with dementia

and their care partner to a lonely world. Research

indicates that having a higher number of visitors helps

the care partner feel more emotionally supported,

which may be more helpful than physical support. 3,4

Lord, Let us appreciate the family and friends that stay

present in our lives. Please give others the strength

and courage to visit when they are uncomfortable.

Help them to make this sacrifice and understand that

simply being present shows love and compassion. We

pray that persons living with dementia and their care

partners also have the fortitude to invite family and

friends closer and not isolate themselves due to

embarrassment.

Our Father 10 Hail Mary’s Glory Be Fatima Prayer

8


Excerpt of Appendix A: References and Notes

Chapter 2 Joyful Mysteries

1. Maslow, K., & Fortinsky, R. H. (2018).

Nonphysician Care Providers Can Help to

Increase Detection of Cognitive Impairment and

Encourage Diagnostic Evaluation for Dementia

in Community and Residential Care

Settings. The Gerontologist, 58(suppl_1), S20-

S31. Abstract

Amjad, H., Roth, D. L., Samus, Q. M., Yasar,

S., & Wolff, J. L. (2016). Potentially unsafe

activities and living conditions of older adults

with dementia. Journal of the American Geriatrics Society, 64(6), 1223-1232. Abstract

Note:

Of 1,038 persons with probable dementia

(diagnosed by the research team) in this 2016

study, less than half (44%) had been diagnosed

by a doctor as having a probable dementia. The

study found that of those 44% not diagnosed by

their physician, over a quarter had more than

one fall at home in the last year (25.3%), were

still driving (27.9%), still handling finances

(29.4%), and were living alone (33.4%). This

group was also cooking hot meals at home

(42.2%) and managing their medications

(49.5%). These findings highlight the urgency

for families to seek a cognitive evaluation and

for physicians to deliver and record a probable

diagnosis as appropriate. This does not suggest

that someone with probable dementia cannot

drive, cook, etc., but these are all potential risks

that should be evaluated for each person’s

abilities.

49


2. Drentea, P., Clay, O., Roth, D., Mittelman, M.

(2006). Predictors of improvement in social

support: Five-year effects of a structured

intervention for caregivers of spouses with

Alzheimer's disease. Social Science & Medicine, 63(4), 957-967. Abstract

3. Zarit, S. H., Reever, K. E., & Bach-Peterson, J.

(1980). Relatives of the Impaired Elderly:

Correlates of Feelings of Burden. The Gerontologist, 20(6), 649-655. Abstract

4. Gennip, I. E., Pasman, H. R., Oosterveld-Vlug,

M. G., Willems, D. L., & Onwuteaka-Philipsen,

B. D. (2014). How Dementia Affects Personal

Dignity: A Qualitative Study on the Perspective

of Individuals With Mild to Moderate Dementia:

Table 1. GERONB The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 71(3), 491-501. Abstract

5. Thomas, William. (1996). A Life Worth Living: The Eden Alternative in Action. Acton, MA:

Vander Wyk & Burnham.

6. Kolanowski, A., Fick, D. M., & Buettner, L.

(2009). Recreational Activities to Reduce

Behavioural Symptoms in Dementia. Geriatrics and Aging, 12(1), 37-42. Abstract

7. Power, G. Allen. (2010). Dementia Beyond Drugs: Changing the Culture of Care. Baltimore,

MD: Health Professions Press.

8. Gerdner, Linda. (2018). Evidence-Based Guidelines: Individualized Music for Person with

Dementia (6th Edition). Full Guidelines

9. World Health Organization. (2016). Dementia Fact Sheet. Retrieved

50


from http://www.who.int/mediacentre/factsheets/

fs362/en/

10. Albinsson, L., Strang, P. (2003). Existential

Concerns of Families of Late-Stage Dementia

Patients: Questions of Freedom, Choices,

Isolation, Death, and Meaning. Journal of Palliative Medicine, 6(2), 225-235. Abstract

51


Excerpt of Appendix B: Recommended Books and Websites

Why the Rosary, Why Now By Gretchen R. Crowe

Man’s Search for Meaning By Victor Frankl, MD, PhD

The Obstacle Is the Way: The Timeless Art of Turning Trials into Triumph By Ryan Holiday

Dementia-specific Books (abbreviated list)

Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief By Pauline Boss, PhD

See Me: Sacred Stories from the Other Side of Dementia By Carmen Buck, MSN, NP

Alzheimer’s Disease: Health and Hope By Jo Huey, MA

The 36 Hour Day: A Family Guide to Caring for People Who Have Alzheimer’s, Other Dementias, and Memory Loss By Nancy Mace, MA & Peter Rabins, MD, MPH

Dementia Beyond Disease: Enhancing Well-Being By G. Allen Power, MD & Richard Taylor, PhD

The Myth of Alzheimer’s By Peter Whitehouse, MD, PhD and Daniel George,

PhD

61

Non-Dementia (abbreviated list)


Dementia-specific Websites (abbreviated list)

PeaceWithDementia.org – My main website with the

podcast, articles, and more.

ABitofBriansBrilliance.com - Brian LeBlanc’s Blog.

AlzheimersSpeaks.org – Lori Le Bey, Shifting Our Dementia Care Culture.

DAANOW.org – The Dementia Action Alliance’s

website for education, programs, fundraising, and

more.

Alz.org -The Alzheimer’s Association’s website for

education, programs, fundraising, and more.

TheAFTD.org – The Association for Frontotemporal

Degeneration’s website for education, programs,

fundraising, and more.

LBDA.org – Lewy Body Dementia Association’s

website for education, programs, fundraising, and

more.

WholeCareNetwork.com – Podcasts and blogs for

Care Partners of many diseases.

MemoryCafeDirectory.com -List of Memory Cafés in

the world.

65


Excerpt of Appendix C: Blog Articles Maintaining Dignity in Dementia

By Matthew Estrade 2016

A research team in the Netherlands published an

article in the Journals of Gerontology: Psychological Sciences and Social Sciences that looks at how dignity

is affected in persons living with dementia. This blog

post summarizes the findings and offers a practical

guide for maintaining dignity.

In the study titled “How Dementia Affects Personal

Dignity: A Qualitative Study on the Perspective of

Individuals with Mild to Moderate Dementia,” Dr. Isis E.

van Gennip and team interviewed fourteen (14)

persons living with dementia, covering three aspects of

dignity: 1) Individual/self-dignity, 2) Dignity impacted

by relationships, 3) Dignity impacted by society/outside

world/strangers.

Self-Dignity

Most of the participants felt what van Gennip (2014)

noted as a loss of “identity” and “autonomy” (p.494).

They felt they were not themselves and relied on

others to do many things they used to do

independently. The participants lost autonomy

because they were no longer able to make decisions

or be involved in decisions. These losses impacted

self-dignity, but participants retained some dignity

because they were able to continue some tasks and

participate in what van Gennip (2014) called

“meaningful activities” (p.494). One such activity as

described by one participant is spending time working

on the garden as they have always enjoyed. For these

participants living with dementia, self-dignity is

preserved at the moment, but many feared the future

loss as dementia is progressive. STOP for a moment

and imagine that you are not able to make decisions

66


that you are able to make today. Would you feel the

same about yourself?

Dignity in Relationships

The second aspect that researchers explored was how

dignity is impacted by relationships, particularly

between the person living with dementia and their care

partner. Nine of the fourteen participants with

dementia in Dr. van Ginnep’s study lived with a spouse

or partner. Interviews revealed that while being

assisted in the bathroom or with feeding could lead to

loss of dignity, they were grateful for the

assistance. The courteous attitude and actions of the

care partner helped to maintain dignity. The

participants were very grateful to be living in their

home environment and understood that their partner

made it possible. Of course, remaining at home is also

based on the care partner’s ability to provide care at

the level needed. Interestingly, van Gennip (2014)

found the participants living with dementia were able to

maintain dignity through “delegation” and

“reciprocation” (p. 496). Delegation refers to the

person living with dementia actively making decisions

of what assistance they needed and when, as well as

what supplies were needed. Reciprocity refers to using

remaining abilities to do something for the care partner

to create a sense of equality. You probably feel good

when you can return a favor, even when not

required. The article offers advice and wisdom as a

way for the person living with dementia to give

back. Another idea to consider includes assisting the

care partner with cooking, perhaps mixing ingredients

that have already been measured. Be creative and I

encourage you to ask your loved one for assistance.

Dignity in the Outside World

The third and final aspect studied in the article was

how dignity is impacted by the outside world. While

dignity tended to be maintained at home and with

loved ones, being out in the public with strangers

67


presented an opportunity to be very

uncomfortable. Examples include: feeling

embarrassed when not able to function normally,

others not believing the presence of dementia when

functioning well and being treated like a child. This led

to a feeling of wanting to be home to avoid these

encounters, which is very understandable.

This study, and others like it, are important in that they

contribute to all of us developing empathy for persons

living with dementia. Even if we feel we are excellent

care partners or friends, we should pause and

examine if we are truly helping in improving or

maintaining dignity. In the rush and stress of

caregiving, it can be easy to slip into a routine of just

getting through the tasks. My case for empathy is not

to add another burden to a care partner’s very full

plate. Rather it is in hopes that an improvement in

dignity for your loved one with dementia will contribute

to your well-being and confidence as a care partner.

Based on this study’s findings, here are some ideas

from Care Partner Mentoring LLC to try with your loved

one living with dementia.:

• Allow them to continue things that they can still

do. (Use cueing if needed.)

• Create opportunities for meaningful activities.

• Offer simple choices.

• Take them seriously and respect choices. (They

have dementia, but they are adults.)

• Give them an opportunity to do something for

you.

• Avoid denying the illness (even in your head),

even when they seem to be physically fit and/or

having a “good day”.

• Be patient when trying to communicate (asking

repetitive questions, forgetting names, etc.).

• Treat them like an adult – not like an infant or

child.

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Literature Cited

Gennip, I. E., Pasman, H. R., Oosterveld-Vlug, M. G.,

Willems, D. L., & Onwuteaka-Philipsen, B. D. (2014).

How Dementia Affects Personal Dignity: A Qualitative

Study on the Perspective of Individuals With Mild to

Moderate Dementia: Table 1. GERONB The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 71(3), 491-501.

69


Excerpt of Appendix D: Guide Sheets

Care Partner Guide Sheet for

Maintaining Dignity in Dementia

• This guide sheet will take you through questions

that will assist you in maintaining dignity for

your loved one or client living with dementia.

• Utilize common sense when completing. This is,

of course, a complex topic and depends on

many factors, two of which being your loved

one’s level of impairment/ability and your level

of patience/burnout as a care partner.

• More common sense...If your loved one is

communicating for help, by all means, help

them. They may not be able to complete a task,

even if you think that they can. Dementia is a

cruel syndrome making one thing possible one

minute and impossible the next.

• This guide sheet is not medical advice and

always seek medical advice from your doctor or

nurse practitioner.

1. Make a list of things that your loved one can still do

safely (as many as you can think of). Some of these

may require cueing or reminding of the next step. Here

are 4 examples to get you started (you can cross-out if

needed):

Brush teeth Cut up food Use microwave safely Shave face

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1a. Next, put a check mark (or other mark) next to the

things that you let them to do with little or no cueing.

1b. After this, write a question mark next to the things

(above) that you have difficulty allowing them to do

themselves. *This is focused on you, in order to

discover tasks that they can do.

2. What are some meaningful activities that your loved

one can do to avoid “boredom, helplessness, and

loneliness” (Thomas, 1996 p.25)? By “meaningful,” I

refer to an activity that engages their previous

interests, hobbies, and occupations. Even if you can’t

create a list, consider reviewing the Farrington Leisure

Interest Inventory to ensure you cover all potential

topics.

3. What are some opportunities for you to offer a

choice, allowing them to make decisions and have a

sense of control?

4. What are some chores or tasks, so your loved one

may feel like they are contributing and giving back

(reciprocating)?

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5. Are there ever times when you think that your loved

one does not have dementia and is just being difficult?

If so, list examples of those situations:

6. What repetitive questions or statements frustrate

you? Make a list and include any patterns of where,

when, circumstances, etc.

6a. What are potential triggers or causes of the

behavior above? (examples: hunger or thirst,

frustration and seeking comfort, bored and seeking a

meaningful activity, restless and seeking exercise, in

pain and seeking relief, missing a special person and

seeking love, etc.)

7. Do you at times find yourself speaking to your loved

one or client like an infant? What are some examples?

Consider this carefully. You may have the best of

intentions and even perform something that a parent

does for an infant (feed, bathe, etc.), but speaking to

them like a parent may impact their dignity. You can

still be encouraging.

If you are not certain what to say or the silence is

awkward, could you play music instead?

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About the Author

Matthew “Matt” Estrade, MA, MBA is a gerontologist in

the Greater New Orleans area, residing in the Mary,

Queen of Peace Church Parish in Mandeville, Louisiana,

USA, where he is a member of the Health Ministry Team.

His grandfather had probable Wernicke Korsakoff type

dementia in the late 1990s. Matt has dedicated his

career to helping families who are experiencing dementia

find peace on this challenging journey through education,

consulting, and conducting research.

Locally, Matt facilitates a weekly care partner support

group for the Council on Aging in St. Tammany Parish

through his training and consulting practice Care Partner

Mentoring, LLC.

Matt is the host of the Whole Care Network’s Peace with Dementia Podcast, which seeks to reduce stigma and

promote relationship-centered education to persons

living with dementia and their care partners. This and

other educational outlets blend practical tips and

evidence-based research, making it accessible so that

families can take action.

He recently completed a Masters in Gerontology from the

University of Louisiana at Monroe (2017), and holds a

graduate degree from the University of New Orleans

(2005), and bachelors from Auburn University (2000).

For college prep, Matt graduated from Jesuit High School

(1995). He has been a certified Dale Carnegie Instructor

since 2005.

Matt lives in Covington, Louisiana with his wife and three

children. He volunteers as a Cub Scout and Boy Scout

leader at Our Lady of the Lake Roman Catholic School,

where he is also in the Knights of Columbus. He earned

his Eagle Scout award in 1992.

You can reach out to him by emailing

[email protected].

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