The End-of-Life Namaste Care Program For People With Dementia, Second Edition (Simard 2e Excerpt)

Contents
About the Author

Foreword, by Ladislav Volicer, M.D., Ph.D.
Preface
Acknowledgments
1
2
3
4
5
6
7
8
9
The Beginning
What Is Namaste Care?
The Namaste Care Team
The Namaste Care Setting
The Namaste Care Day
Implementing Namaste Care
Assisted Living
Quality of Life at the End of Life
Dying and Death
ix
xi
xii
xix
1
23
39
59
77
121
143
161
205
Appendixes
A Namaste Care Nursing Supplies
238
242
B Namaste Care Activity Supplies
C Namaste Care Resources
243
D Namaste Care Activities of Daily Living Checklist
245
E Dementia Bill of Rights
247
F Pain Assessment in Advanced Dementia (PAINAD) Scale 248
References
252
Index 257

vii
Copyright 2013 by Health Professions Press, Inc. All rights reserved.

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Foreword
Publication of the first edition of The End-of-Life Namaste Care
Program for People with Dementia encouraged many health care
providers to reassess how to care for individuals with advanced
dementia. Although Namaste Care was originally intended for
implementation in long-term care facilities, the program has since
been adapted in other settings where individuals with advanced
dementia live, specifically assisted living communities and hospices.
This second edition is a result of the expansion of Namaste Care
and the popularity of the first edition.
Since the publication of the first edition, Namaste Care programs have been successfully implemented throughout the United
States as well as in Australia, England, Scotland, and Greece. One
large assisted living organization in the U.S., Arden Courts, chose
to incorporate Namaste Care into all of its facilities. A hospice organization, Seasons Hospice, is using the Namaste Care approach
in all of its facilities as well, under its own customized name (Touch
for All Seasons). The success of Namaste Care was also reflected
in the selection of Joyce Simard, M.S.W., as one of Provider magazines 20 to Watch in 2013 for her compassion and commitment
to providing quality of life at the end of life for individuals with
advanced dementia.
Namaste Care is an enlightened program that strives to maintain the highest quality of life possible for individuals with severe
and terminal dementia. This care involves the creation of a special
room that provides a quiet, peaceful environment for residents in
the last stage of the disease. Meaningful activities are individualized for each resident and a continuous presence of staff members
provides both physical and sensory stimulation. Namaste Care does

xi

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xii
The End-Of-Life Namaste Care Program
not require additional staff, just some rethinking of staff assignments, and can be implemented with minimal programming cost.
This high-touch care can be taught to all staff as well as to family
members. The family members in particular appreciate the attention given to their loved ones.
I am sure that publication of this second edition of The End-ofLife Namaste Care Program for People with Dementia will encourage
many more long-term care facilities, assisted living communities,
and hospices to pay greater attention to individuals with advanced
dementia as well as other terminal diseases and conditions. The
book will hopefully serve as an important road map in this effort
because it describes in detail how the program can be implemented,
how the Namaste Care team is established, how an appropriate
Namaste Care environment is created, and what the days activities
could look like. In addition, the book discusses decision making
at the end of life and what is meant by comfort care. An understanding of death and dying and the need for care after death are
also provided. Finally, the appendices include useful resources for
establishing a Namaste Care program.
Namaste Care provides residents and their families with quality care that addresses not only physical but also emotional and
spiritual needs. It reminds us that individuals with advanced dementia should not be isolated in their rooms, but instead need to live
their last days in a pleasant environment receiving loving care from
all staff and families.
Ladislav Volicer, M.D., Ph.D., F.A.A.N., F.G.S.A.
Courtesy Full Professor, University of Southern Florida, School of Aging
Studies, Tampa, Florida
Retired Clinical Director, Geriatric Research Education and Clinical
Center (GRECC), Veterans Administration Hospital (Bedford,
Massachusetts)

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Preface
I have lost myself.

Auguste D.
On November 4, 1906, Dr. Alois Alzheimer gave a lecture in which

he described Auguste D., a 51-year-old woman with symptoms of
a progressive, cognitive impairment. He had been puzzled that a
woman so young exhibited symptoms usually seen in those much
older. After Augustes death in April of 1906, Dr. Alzheimer performed an autopsy on her brain to try to determine the reason for
her unusual behavior. When the brain samples were placed under
a microscope, he discovered the plaques and neurofibrillary tangles
that are now recognized as the markers of the disease that ultimately was named after this researcher: Alzheimers disease. At the
time, however, his lecture was virtually ignored by his colleagues
and the material was deemed not appropriate for a publication
(Maurer, Volk, & Gerbaldo, 1997).
More than a hundred years after this lecture, Dr. Alzheimer
is internationally recognized as the physician who discovered
Alzheimers disease, a condition that at the beginning of the 21st
century affects 5.4 million Americans and costs the U.S. health
care system $200 billion per year (Alzheimers Association, 2012).
Alzheimers is the sixth-leading cause of death and is second only to
cancer as the most greatly feared disease among adults older than 55
(MetLife Foundation, 2011).

xiii

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xiv
According to a quote taken from her medical records, Auguste

D. cried out to Dr. Alzheimer, I have lost myself. This lament
is as relevant today to the millions of people struggling with Alz
heimers as it was to this woman a century ago. Another entry in
Augustes files quotes her husband as being upset with his wifes
accusations of infidelity. Upsetting behavior such as this continues
to distress present-day spouses, who are often bewildered by similar
accusations. Unfortunately, the despair and confusion surrounding
Alzheimers continue.
Auguste D. was placed in a mental asylum. Today, thankfully,
there are many more options to help family members care for people with Alzheimers, including adult day services, home health care
aides, housekeeping services, hospice, and respite care. This array
of services provides support for the exhausting caregiving responsibilities that accompany Alzheimers. The Alzheimers Association
reports that more than 60% of caregivers rate their emotional stress
as very high and one-third report symptoms of distress (Alzheimers
Association, 2012).
If she lived today, perhaps Augustes family would have been
able to keep her at home for longer or maybe she would have resided in an assisted living community that specializes in the care
of people with early and moderate dementia. When her dementia
progressed to the point where she needed more care or her family
could not afford for her to reside in an assisted living community,
Auguste could have spent the last years of her life in a skilled nursing facility that offers a memory care neighborhood. Hospice services might have been available in the last days or months of her
life, and bereavement services may have been offered to Augustes
husband after her death.
From diagnosis to death, family and professional care partners
now have access to a variety of services and information on the psychosocial and medical needs and treatments to help make life easier
for people with Alzheimers. Books written by professionals, family
members, and people with Alzheimers are published on a regular
basis. We know so much more about how people with Alzheimers
feel, how to help them live with the disease, and how to support
their families.

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PREFACE
xv
Despite this increased attention, the experience of advanced

dementia remains misunderstood and underserved, regardless if the
person lives at home or in a long-term care setting or is receiving
hospice services. The Alzheimers Association has recommended that
end-of-life care needs to be given more attention from researchers
as well as health care practitioners (Alzheimers Association, 2007).
Nursing facilities tend to focus on medical care for residents with advanced dementia (i.e., monitoring vital signs and dispensing medication). Residents with advanced dementia are well groomed, changed,
and fed. But what is their quality of life? The same can be said about
residents in assisted living communities, as aging in place has increased the need for programming appropriate for people at each
stage of dementia. Families are ill-informed of how to help their
loved one in the final stages of the disease. A physician addressing
hundreds of fellow physicians at an American Medical Directors
conference said without quality of life, quality of care doesnt matter
that much. Namaste Care is all about quality of life.
In some nursing facilities, residents with advanced dementia
are grouped around the nurses station so that they can be observed.
Other residents with advanced dementia are isolated in their rooms.
Some nurses believe that the kindest way to care for residents with
advanced dementia who are no longer ambulatory is to leave them
in bed. These residents spend the rest of their lives in one room,
alone for the majority of the day, their voices stilled by the disease.
Because they can no longer cry out Im here or Help me, they
are easy to forget in the busy life of a nursing facility. In some respects, they become invisible.
Since the first edition of this book was published, the number
of residents in assisted living communities with advanced dementia has increased dramatically. Assisted living regulations are state
specific and each state determines how physically and cognitively
impaired a resident can be until he or she is moved to a nursing
facility or the family is required to provide a private care assistant.
In this second edition, I address the differences between nursing
facilities and assisted living communities who are implementing
Namaste Care. One chapter is devoted to the differences in these
two long-term care settings.

Namaste.indb 15
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xvi
People with advanced dementia living in any care setting deserve the right to be acknowledged, enjoy meaningful activities, be
in the presence of others, and receive the loving touch approach
that is the foundation of Namaste Care. Richard Taylor eloquently
reminds us in his insightful book Alzheimers From The Inside Out: I
want and need to give and receive love. Even when I cant remember your name, will you please love me? Namaste Care is all about
giving and receiving love.
I developed the Namaste Care program to bring an improved
quality of life to nursing facility residents in the last stages of
Alzheimers. Namaste (pronounced nah-ma-sta-) is a Hindu term
meaning to honor the spirit within, a perfect name, I thought,
for a program designed to acknowledge the person first, not the
disease, and to honor the person in all aspects of his or her life.
The Namaste Care program also removes the isolation surrounding many residents in health care settings and invites them to be in
the presence of others in a place that is peaceful and filled with soft
music, with the feeling of love surrounding them.
This book was written in the hope that you, the reader, will be
inspired to enhance the care that is provided to residents, patients,
family members, or clients with advanced dementia in whatever
setting they call home. It also reflects a personal journey of mine of
over 35 years in health care. My goal for writing this book was to
provide easy-to-read, step-by-step advice on how to start a Namaste
Care program in your organization or how to use Namaste Care
approaches in a home setting. Vignettes of actual experiences are
woven into each of the chapters as examples of how Namaste Care
works. If you work in health care, you have no doubt experienced
the humorous side of our work that makes a sometimes-difficult job
less stressful. I hope that you will smile as you read about some of
my less-than-stellar ideas and resident encounters.
When this book was first published, I never dreamed that Namaste Care would be used internationally. Programs now can be
found in Australia, England, Scotland, and Greece. And those are
just the ones I actually know exist.
I have changed some vocabulary in this second edition to reflect the ongoing shift in the United States from a medical model

Namaste.indb 16
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PREFACE
xvii
ofcare to a more compassionate, social, and person-centered model

of care. I use care partner rather than nursing assistant. This new
term shows how we need to help people with dementia continue
to participate in their care for as long as possible. I also refer to
the staff who work in a health care organization as team members to
heighten the awareness that indeed it takes a village to provide
quality care.
The people and organizations in this book are committed to
providing a high quality of care. They are often the unsung heroes
who go more than the extra mile for the residents they care for and
care about. This book sings their praises and acknowledges their
excellent work.
One such unsung hero is Lorna Reid, the education liaison
nurse for ACCORD Hospice in Scotland. She has become a strong
supporter of Namaste Care. Lorna once asked me to do a workshop
for care homes and hospice staff. As the program ended, she read
the following:
Do for one what you wish you could do for everyone. [quote
from Andy Stanley, pastor, author, and founder of North Point
Ministries, Inc.] I cant change the world on my own, but I can
do for one what I wish I could do for everyone. In fact, that is
the story of the hospice movement, which started with one nurse,
turned social worker, turned physician, who encountered one patient. As the result of that encounter, she (Dame Cicely Saunders)
set out on a journey to create a place where she could give to one
group of people what she wished she could do for every group.
One led to two which led to hundreds which led to thousands.
And now hospice influences the care of people all over the world.
So, Im not going to let myself get overwhelmed. As long as I am
able, I will keep on doing for one group what I wish I could do
for every group. Maybe you will be encouraged to do the same.
And so, for as long as I am able, I too will not let myself get overwhelmed. I will offer to teach Namaste Care to one person or one
group what I wish I could teach everyone. I will teach Namaste
Care to people in one country what I wish I could teach people all
over the world. And gradually I hope and I pray that the standards
for quality of life for people with advanced dementia will improve.
Maybe you will be encouraged to do the same.

Namaste.indb 17
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Alzheimers Disease / Terminal Care
Skilled nursing facilities, assisted living memory

care communities, and hospice organizations
see many positive outcomes from implementing
Namaste Care, including improved resident
quality of life, increased family involvement, and
strengthened staff morale.
Joyce Simard, m.s.w., is a

private geriatric consultant to
skilled nursing centers, assisted
living communities, and hospice
organizations worldwide. As a
social worker and dementia care
specialist, she has more than
35 years of experience in health care settings. She
provides training on a variety of subjects, including
hospice care, bereavement, comfort care, and activity
programs for people with all stages of dementia.
Greatly expanded coverage of

programming and adaptations for
assisted living and hospice care
More stories and vignettes to
illustrate creative uses of Namaste
Care and improvements in quality
of life
Revised and expanded discussion
of dying and death to encourage
greater sensitivity and understanding
of this important passage for
residents, their families, and staff
International examples of Namaste
Care programs and perspectives
from Australia, the United Kingdom,
and Europe
Everyone wins with the

positive, enveloping Namaste
Care approach to advanced
dementia. . . . Simard makes real
and achievable all the abstract
ideals of dignified, compassionate
quality care.
Lisa P. Gwyther, MSW, LCSW,
Co-author, The Alzheimers Action Plan,
and Director, Duke Family
Support Program, Duke University
The Namaste Care program

revolutionizes how to lovingly
provide care for those facing
advanced dementia.
TM
Russell Hilliard, Vice President,

Seasons Hospice & Palliative Care
ISBN-13: 978-1-938870-02-6
ISBN-10: 1-938870-02-6
90000
www.healthpropress.com
9 781938 870026
The End-of-Life Namaste Care

Program for People with Dementia
Evocative scents, soothing music, and gentle

massage are just part of this innovative program,
which can be implemented with minimal resources
and training and meets regulatory guidelines for
person-centered activity programming. Step-bystep advice for staffing, budgeting, operating, and
marketing the program is included along with
detailed information for creating a Namaste Care
room, wing, or alternative setting.
New to this SECOND edition:
Simard
resenting the first program created

specifically to serve the unique needs of
a very special population, The End-of-Life
Namaste Care Program for People with Dementia
offers simple and practical ways for direct care staff
to provide holistic end-of-life care for people with
advanced dementia. With compassion, sensitivity,
and creativity, the Namaste Care program
affirms the individuality and enduring spirit of
each person through comforting and meaningful
sensory-based experiences.
>
SECOND
EDITION

The End-of-Life Namaste Care Program For People With Dementia, Second Edition (Simard 2e Excerpt)

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Contents

About the Author

Copyright 2013 by Health Professions Press, Inc. All rights reserved.

Copyright 2013 by Health Professions Press, Inc. All rights reserved.