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.
Preview of The Peace with Dementia Rosary
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
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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.
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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
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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.
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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
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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
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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
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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.
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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-
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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.
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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.
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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
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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
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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
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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
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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.
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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
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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
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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
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Non-Dementia (abbreviated list)
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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.
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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
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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
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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.
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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
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