Exquisite care:
The role of Buddhist practices in connecting with
people with dementia
Susan MacDonald
Buddhist Chaplaincy Training Program
Upaya Zen Centre
Santa Fe, NM
2011
Dedicated to
Rowena Thirlwall,
Sue Kaul
and
Jean Jackson,
three nurses who introduced me
to exquisite care.
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Table of contents
Chapter 1. Toward exquisite care .......................................................................................... 3
What is the suffering that dementia brings?................................................................................................ 3
Healing can occur........................................................................................................................................ 3
Why connection and what is it? .................................................................................................................. 3
Which Buddhist practices?.......................................................................................................................... 3
Chapter 2. Methodology ......................................................................................................... 3
Introduction ................................................................................................................................................. 3
Participants and site .................................................................................................................................... 3
Autoethnography ......................................................................................................................................... 3
Ethical issues ............................................................................................................................................... 3
Researcher reflexivity ................................................................................................................................. 3
Chapter 3. Literature Review ................................................................................................. 3
Introduction .................................................................................................................................... 3
Philosophy of care .......................................................................................................................... 3
Best practices for healing ............................................................................................................... 3
Connect and validate whenever possible .................................................................................................... 3
Be respectful, understanding and empathetic ............................................................................................. 3
See difficult behaviors as unmet needs ....................................................................................................... 3
Be open ....................................................................................................................................................... 3
Bring your whole person to the relationship ............................................................................................... 3
The nature of the relationship ....................................................................................................... 3
Context of care ................................................................................................................................ 3
Buddhist practices and how they can help ................................................................................... 3
What is mindfulness? .................................................................................................................................. 3
Generating three fold transparency ............................................................................................................. 3
The foundation: creating a spacious mind .................................................................................................. 3
Establishing a relationship with self ........................................................................................................... 3
Opening the mind to life ............................................................................................................................. 3
Opening our hearts ...................................................................................................................................... 3
Summary ..................................................................................................................................................... 3
Chapter 4. Discussion ............................................................................................................. 3
Introduction .................................................................................................................................... 3
My experience of dementia care .................................................................................................... 3
Bearing witness to myself ........................................................................................................................... 3
Working within an institution ..................................................................................................................... 3
Learning about empathy .............................................................................................................................. 3
Not knowing and not fixing ........................................................................................................................ 3
Learning about love .................................................................................................................................... 3
Teaching exquisite care .................................................................................................................. 3
Conclusion ....................................................................................................................................... 3
References ............................................................................................................................... 3
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Chapter 1. Toward exquisite care
Exquisite care is a term I first heard from a palliative care nurse in a hospice. It was
something I witnessed in her treatment of the residents there. From my initial reading I think
this term aptly describes the kind of care that is being called for by authors working in the
field of care for those with dementia.
Exquisite has been defined as ‘sensitive or discriminating’ (Collins English Dictionary
Online, 2010). Sensitivity indicates a responsiveness to stimuli, while discrimination
recognises or understands difference. Exquisite care implies being extremely focused,
attuned to self and other, as well as receptive and responsive to what occurs within the
healing relationship. A caregiver needs to operate from a relaxed and calm place to generate
receptiveness and sensitivity. They must use all of the senses, to sense what the other person
is feeling while also remaining connected to their own self. This allows for both a clear
discriminating mind and intuition to arise. Love and compassion are the final ingredients
that open the heart of the caregiver and allow for exquisite care to occur.
From my experience volunteering in a Care Facility and from my research, I can see that
this level of care is very hard to achieve, both personally because the situation is very
challenging and institutionally because of the restrictions within the environment. In this
research I want to investigate the notion of ‘exquisite care’ in this setting and see what
Buddhist practices can teach us about how to achieve this.
As a student of chaplaincy I am aware that chaplaincy is primarily about building
relationships and making connection. I want to focus closely on this process. What actually
happens on the ground when I apply Buddhist teachings moment by moment? I want to try
to show, through reflections on my own experience, how moment by moment presence
might be carried out by Buddhist Chaplains, who are in a unique position to be able to
support and encourage exquisite care in themselves and other caregivers, volunteers and/or
family members.
Buddhists can learn much about suffering in this environment: our own, that of residents
and that of staff. Socially Engaged Buddhism involves transforming ourselves while
working in the world (Senauke, 2010). So, finally, I want to test my belief that a secure unit
in a Care Facility is an excellent place for a Buddhist to engage and transform through
service.
What is the suffering that dementia brings?
Dementia is an increasing cause of suffering in our society today. As our population ages
the number of people who have the illness is growing. We are beginning to see dementia
replace cancer as the most feared illness in our communities (McBee, 2008). The suffering
affects the person with dementia, their family and friends and those who either care for them
at home or work in the institutions where those with dementia are often placed.
The suffering of family and friends when a loved one has dementia can be great. To watch
as the behaviour of their loved one changes to the point that they seem not to be the person
they once were is very difficult. Family and friends have to deal with the grief of watching
as their loved one loses the capabilities they once had; for example, to care for, support and
affirm their family.
The behaviours of a person with dementia can be very challenging. As their memory and
cognitive abilities fail, the family members can no longer rely on their usual ways to interact
and connect. In addition, a person with dementia may do things that are incomprehensible as
they lose inhibitions, take to wandering, swearing or talking to someone who is not there.
All of these behaviours can be frightening. Friends and family often react by withdrawing
and the person with dementia becomes increasingly isolated. It is evident in the literature
and observable in the Care Facility that those who have dementia suffer from abandonment.
Too often they are abandoned intellectually, emotionally and spiritually. Often this is
because caregivers may not be able to make the connection, or may not believe that it is
possible to do so.
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“[I]t was not only the pain at seeing loved ones in this situation but the
very real discomfort at not knowing what to do or what to say that kept
people from visiting frequently, at length or at all” (Strauss, 2001, p. 2).
It is easy to assume from the confused words or phrases and unfinished sentences, the
repetitions, mumblings and surprising outbursts that there is no meaning to what is being
expressed. It is easy to believe that the person no longer has the mental capacity to hold
thoughts, concerns or emotions. These perceptions effect our ability to make connection
with people who have dementia.
In addition, staff in institutions are busy, often over-stretched and perhaps unskilled and
unmotivated to take the time to connect with their wards. Dealing with the frustrations of
‘difficult’ behaviors without the time and skills to find a way to ease the person’s distress
makes this work very challenging. The sense of not doing enough may be ever present. This
too is a form of suffering. As chaplains we need to recognise and work to alleviate the
suffering of staff as much as the suffering of residents in these settings.
Healing can occur
The terms healing and healer come from the root word “hale”, which means “to facilitate
movement towards wholeness or to make whole on all levels - physical, mental, emotional,
social and spiritual” (Roshi Halifax, 2007, p.25). Abandonment is not necessary in the
situation of those who have dementia and in fact healing can occur (Zeisel, 2010). Healing
is always possible even in situations like this where a cure does not exist. Although healing
emerges from within a person’s own unique body-mind-spirit it can be facilitated by a
caregiver and in fact as the caregiver recognizes her/his own suffering this allows for more
compassion towards the other.
Healing is a life-long movement towards wholeness and is about finding harmony and
balance in all aspects of life including immediate family, the broader community and even
out to the global arena. Healing is about rediscovering the ability to connect and recognising
the interdependence that exists among all things, living and nonliving.
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For those who are dying the outcomes of healing can include decreased pain, increased
comfort, increased acceptance, and an “enhanced ability to feel, name, express and
positively integrate feelings” (Roshi Halifax, 2007, p. 26). In the context of a Long Term
Care facility for those with advanced dementia, healing may include increased alertness and
interactivity with others, a deeper sense of connectedness with self and others, improved
relationships with self and others, and a greater sense of wellbeing (Feil, 2002).
Why connection and what is it?
I believe it is useful to focus on the issue of connection with those who have dementia
because this is at the heart of facilitating healing. If more people understand the issues and
have the skills to make a connection then they (friends, family, volunteers and caregivers)
will maintain a relationship with the person who has dementia and the person with dementia
will have a better quality of life. Suffering will be diminished. Chaplains are in a position to
be able to model and teach behaviours that encourage connection and to help caregivers,
family and friends cope and learn through the many challenges as the illness progresses.
When I pose the question about connecting with those who have dementia I am concerned
with connection in its broadest sense. This includes physical, emotional and spiritual
connection.
“Connecting with each other is a way we share ourselves, one human being with
another [...]. Our hearts open, and we are filled with elation knowing that someone
else understands that special moment as we do. Making a connection creates a bridge
so that we are no longer alone. This is a basic human need that continues to exist, even
as Alzheimer’s progresses” (London, 2009, p. 9).
Buddhist practices are about putting aside our distractions and dropping our armour in order
to connect with ourselves and others. These practices are now used in many areas of
healthcare, both for practitioners and patients. There are covert and overt references to
Buddhist practices in the literature on being with those who have dementia.
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Which Buddhist practices?
I have chosen the Buddhist practices of mindfulness of breathing meditation, Loving
Kindness (Metta Bhavana) meditation, and the three tenets of the Zen Peacemaker
Fellowship: Not Knowing, Bearing Witness and Compassionate Action. I have chosen the
first two practices because they are commonly used and understood in Buddhist circles.
They are the practices that I do daily and I am focusing here on my experience of these
practices and their application to my work in the Care Facility as raw material for this study.
I have chosen the tenets because together they define Engaged Buddhism, and this is what
Chaplains are actively doing. We do not just meditate for our own benefit but enter the
world and engage with our own suffering and the suffering of others as our practice.
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Chapter 2. Methodology
Introduction
My intention is to undertake a literature review, bringing together what we know from the
field about working with those who have dementia, and from Buddhist literature on how the
selected Buddhist practices may help in this situation. I will add short reflections based on
my observation notes as I attempted to apply these principles in a Care Facility with those
who have dementia. The intention is to make a link between the literature review and real
life experience. I see this as a type of autoethnography (Wall, 2008).
There is a large body of material on dementia in general and creating connection with those
who have dementia in particular. I will use this as the core of my literature review to
identify common issues that exist and best practices that are recommended from those
working in the field. I intend to use the body of work on Buddhist practices around being
with dying as sources on the use of Buddhist practices as I think this holds much value and
transfers well to the area of working with dementia. I will also draw on the large body of
literature on Buddhist practices in general.
Participants and site
This paper looks at the situation in institutions such as a Long Term Care Facilities in
Canada and Skilled Nursing Facilities in the United States. Within these facilities my focus
is on those residents who have advanced dementia and are required to be in the secure unit
where they are safe from wandering away. Once placed in this setting residents often get
very few visits from family or friends and have little chance to interact with staff who are
busy with routine care issues.
Some literature focuses specifically on family members who act as informal caregivers to
relatives with dementia in the family home. Although the practices I will be exploring may
well be useful in the home setting, home caregiving is not the focus for this paper.
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In this paper I will be referring to ‘people with dementia’. This includes people with
Alzheimer’s disease which accounts for 50-70% of all dementia cases (Alzheimer’s
Association Online). I will also be referring to ‘caregivers’ who may be formal caregivers,
family and friends of the person with dementia, or volunteers or chaplains who are visiting.
The staff at the institution where I visit are predominantly of Caribbean or Filipino descent.
Staff include mostly Care Workers, and nurses, kitchen assistants and an Activity
Coordinator. The residents represent many ethnicities including Portuguese, Italian,
Spanish, Croatian, Hungarian, Korean, Chinese, English and North American Caucasian.
Typically the residents are very old, in their 80s and 90s.
Autoethnography
I have undertaken an autoethnography of my experiences (representing Chaplains) in the
secure unit in a Care Facility based on journal entries of my experiences there.
Autoethnography has been described as a means to link aspects of academic literature to an
area of personal importance via a narrated personal experience (Holt, 2001; Sparkes, 1996),
the narrative holding central place with references to academic literature throughout. Here I
am giving the literature central place but referencing personal accounts of my experiences
onsite in the unit and my later reflections on those experiences.
Working in a Care Facility with people who have dementia has proved to be a very powerful
experience for me. It has allowed me to make learning connections between the literature
and the experience of my Buddhist practice, my inner life, the interactions with residents
and staff, and how these elements intersect. If I had only had a literature review it would
not show my internal processes and the learning these processes afforded me; the personal
experiences illustate my internal processes.
A larger pool of data from a range of Buddhist chaplains or caregivers in an analogous
situation would provide a richer source of information than the current study. But the
challenges of establishing a broader research design are impossible at this time; it would be
very difficult to find suitable subjects for such a study and gaining appropriate clearance is
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beyond the resources available to the author. Bringing the experiences of the researcher
front and centre through vignettes throughout the literature review allows us to consider
how the Buddhist practices work on the ground and provides insight into a situation which
is underresearched.
Autoethnography has been acknowledged as very challenging in that it makes the author
vulnerable (Wall, 2008). I feel this myself; including the autobiographical vignettes is an
exposing act. But if we are going to explore the intimate experience of ‘being with’ rather
than ‘doing to’, then we need to be able to reflect on these intimate aspects within this
discussion.
Autoethnography has previously been used in the field of dementia care research. Kelly
used autoethnography to capture the experiences of significant others when their loved one
is diagnosed with AIDS dementia (Kelly, 2010). She used the inclusion of her own
experience as an entry point into the experiences of the others. Salmon (2006) used
autoethnography to represent her experience as a full time caregiver awaiting her mother’s
placement in a nursing home. Her personal account brings a richness and depth to our
understanding of what it was like for her to be a caregiver in this situation. In both cases, the
autoethnography gives immediacy, and brings understanding and empathy to the situations
described. My intention is to bring the same richness to this study.
Ethical issues
I have ensured anonymity by changing names and have made no reference to the institution
or city, beyond saying that it is a large Care Facility in a large North American city. I have
avoided reference to any aspects of the life history or circumstance which may reveal the
identity of any persons included.
I have thought long and hard about the ethics of including my accounts of interactions with
residents and staff without their approval. I see it as justified in two ways. Merely offering a
literature review would remain in the world of theory whereas I wanted to show the
experiential learning aspect through describing my own experience, which necessitated the
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inclusion of comments on the acts of others in my accounts. My focus in the vignettes is on
my own experience of being in the unit and interacting with the residents and staff. I
recognise the subjective nature of this but it is the only way to get at the ‘intimate
processes’.
In terms of the institution, my study of the context of care would indicate that this is a
common standard of care. Some of my comments may be seen to reflect badly on staff and
the quality of their care. I have provided context for these statements, describing the nature
of their work and its associated challenges. I have also provided reflections on my own
challenges with self righteousness and with taking a position of ‘us’ versus ‘them’.
As this version is to be made available to the broader public via the internet I have taken out
my accounts of interactions with others but included my reflections of my own internal
processes.
Researcher reflexivity
I am drawn to working with those who have dementia for this project because my
grandmother and aunt had dementia and my mother now lives with it. I may well get
dementia in turn. I do not consider myself an expert in dementia care; I am new to working
in a Care Facility and to working with those who have advanced dementia.
I have been a practicing Buddhist for 6 years and have a daily meditation practice. I am at
the end of a 2 year course in Buddhist Chaplaincy and consider myself an apprentice in this
field. I have been applying the teachings from the course for the last 2 years.
My experience is my own, born of who I am and where I have come from. Someone else
will have a different experience, however, I did find parallels between my experience and
that written about in the literature, both on dementia care and Buddhist practices.
I am aware that I do have an agenda. I do want to fix the situation that I find the residents in,
which I perceive as under stimulated, isolated and alone. I also am frustrated in the
12
knowledge that those who take on the ‘caregiver’ role in our society (formal or informal) do
so at considerable physical and emotional cost to themselves, and with very poor
remuneration for their efforts. I am aware of these personal views that I hold and try to put
them aside in order to be present with the residents.
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Chapter 3. Literature Review
Introduction
The purpose of this literature review is threefold. Firstly I will identify current best practices
in creating connection with those who have advanced dementia. I have characterised these
best practices collectively as ‘exquisite care’. My second purpose is to consider the context
within which this care occurs, as this has implications for the care. Finally, I will look
closely at how Buddhist practices can help caregivers achieve exquisite care in this
situation. Personal experiences in the form of vignettes will be used to highlight points
made in the literature review and to create a bridge between the theoretical work and my
own experience on the ground.
I will begin by looking at current practices both in terms of the broad philosophy of care and
recommended best practices.
Philosophy of care
Many authors share a common approach, derived from many years working in the field, to
the work that they do with people who have dementia. This approach provides an important
philosophical base for communicating with people with dementia.
Person Centred Care represents a shift from seeing dementia as a medical problem to seeing
it also as a social and psychological problem (Verity & Kuhn, 2008). This approach is
strength based in that it focuses on what the person with dementia can still do rather than the
capacities that they have lost. Additionally, difficult behaviours are not seen as a symptom,
but as an expression of unmet need. Finally the approach is holistic in that it treats the whole
person, focusing on mind, body and spirit.
The Complementary and Alternative Medicine (CAM) approach to dementia care also
contrasts dramatically with that of conventional medicine (McBee, 2008). The CAM
approach recognises dementia as a chronic condition currently without cure. The focus of
CAM is on symptom management and palliative care. A shift has been made away from
conventional medicine’s focus on extending the quantity of life to improving the person’s
remaining quality of life.
Like Person Centred Care, this approach is also resident centred rather than institution
centred whereby the resident and their immediately family contribute to decisions about
daily schedule, lifestyle and health care. This includes recognising the patient’s awareness
of their own body and its symptoms and allowing them and their family to have input into
decisions with medical practitioners about their care. This represents a change in the doctorpatient relationship where the usual distance is removed and all partners are treated as equal
in the healing process.
Central to this approach is the belief that while a cure is not possible, healing can occur in
terms of a movement towards wellbeing for people with dementia. Effective treatment then
becomes the attitude we take to people with dementia, the ways we interact with them, the
way we prepare ourselves for interactions and learn to adapt to what we find, and the ways
we change our expectations and ourselves to meet them where they are.
Best practices for healing
The primary way to create healing with people who have dementia is through connection
and validation (Feil, 2002; London, 2009; Pearce, 2007; Strauss, 2001; Zeisel, 2010).
Connection and validation require that we treat people with dementia with respect,
understanding and empathy; that we remain open to whatever happens; and that we bring
our whole being to the relationship. I will outline the ideas behind connection and
validation, and each of the best practices to help achieve these in detail below.
Connect and validate whenever possible
Connection is described as a basic human need and essential to a decent quality of life
(London, 2009). The challenge to making a positive connection with someone who has
dementia is that at times we do not understand what they are saying or wish to say, or what
their behaviour means. Despite these difficulties, research suggests that a person with
15
dementia can retain their sense of personhood and even develop this sense if another person
is sensitive to how the they feel (London, 2009).
A therapeutic model has been developed around validation for those with dementia (Feil,
2002). Validation addresses the psychological and social needs of the person, which include
the need to express their feelings. Validation techniques can be used even without words or
an understanding of words. Direct appropriate eye contact, gentle touch and a clear, low and
loving tone of voice can be used to stimulate a response, which may be as simple as a look
or a smile. In this way we connect, build trust and enter into the world of the person with
dementia which is a validating experience for them. Matching body language, emotions and
preferred sense (e.g. sound, touch or sight) in speech are also offered as validation
techniques (Feil, 2002).
When capacities diminish caregivers can help people with dementia access memories
through alternative means like the senses (smell, touch, music), the body (throwing a ball,
dancing), learnt skills (cooking, knitting, bowling), and emotional memories (times of joy,
sad memories, excitement) (Zeisel, 2010). These are all validation techniques.
The results of validation are that people with dementia continue to communicate, their
speech reappears, their eyes lighten, their gait improves, their social roles return and their
negative behaviours decrease. Most importantly they do not regress to the vegetation stage
(Feil, 2002).
Encouragement is another form of validation. As their abilities decrease a person with
dementia has more and more negative experiences, which add up to a severe attack on self
esteem. Low self esteem can lead to depression and social isolation. Caregivers can prevent
this decline by encouraging the person with dementia to use their remaining abilities no
matter how modest they are. These may include smiling, laughing, singing and clapping to
music, drinking, or saying hello.
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“You give them confidence and ensure that they can keep doing what they can
for as long as possible. You can do this by becoming aware of the little things
that the person with dementia can still do for oneself [sic].” (Verity & Kuhn,
2008, p. 30).
Be respectful, understanding and empathetic
In order to be able to validate, we must be able to offer respect, understanding and empathy.
Authors in the field often point out that people with dementia have a basic humanity and
require respect (Feil, 2002; London, 2009; Verity & Kuhn, 2008; Zeisel, 2010). This may
seem obvious, but the nature of the illness often results in family, friends, caregivers and the
broader community seeing the illness and not seeing the person who has the illness. When
they see the illness they often give up on the person.
“The way the world sees Alzheimer’s today is that a person is almost totally lost
once he or she receives an Alzheimer’s diagnosis - lost both to themselves and
to those who love them” (Zeisel, 2010, p. 7).
Our society values thinking, memory and productivity which leads to people with
disabilities often being disregarded and treated as second class citizens (Verity & Kuhn,
2008, p. 8). At the same time, people with dementia are aware of their declining ability to
remember and understand what is happening. They are also aware of changes in the ways
that other people treat them: being patronised, ignored, ordered around and talked about as if
they are not there (Strauss, 2001).
Respect is an attitude and a skill. It includes remembering people’s names, listening without
judgement, asking questions that they can answer, giving them the time they need to answer
questions and listening attentively with genuine interest.
“As the disease progresses, other people increasingly are the keepers of that
person’s personhood. Those who overlook this contribute directly to that
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person’s anxiety, agitation, aggression, and apathy. Acknowledging the person
by words and actions reduces these symptoms” (Zeisel, 2009, page 159).
Closely tied to respect are understanding and empathy because they are also essential to
creating a connection. A person with dementia’s behaviours can be very challenging; he can
make rude or obscene comments or gestures; she may ask repetitive questions, make
accusations, express strong emotions seemingly without cause or withdraw into anxiety and
depression. It may be that his communication is incomprehensible or non existent. It takes
enormous patience and persistence to find a connection with a person exhibiting these
behaviours or to even keep trying to find a connection. Empathy helps to motivate us to
keep trying.
Understanding and empathy also help us enter into the world of someone with dementia.
They allow us to look and listen closely in order to find a key to connection. Empathy
enables us to put ourselves in their shoes and from this position we can use intuition about
what they may be thinking or feeling, or what they might be saying. If we are able to make a
guess and connect their fragments of speech we can check the meaning with them (London,
2009).
“To truly understand people with dementia, you need to know that there is
always a personal, meaningful explanation for what they do or say, no matter
how strange it may seem at first” (Verity & Kuhn, 2008, p. 21).
See difficult behaviors as unmet needs
Difficult behaviors in a person with dementia can indicate unmet needs. It is important to
have a clear understanding of the symptoms, behaviours and side effects of dementia and
what are non-symptoms. Primary symptoms include difficulty accessing memories, dealing
with complex situations, and keeping reality and unreality separated. Secondary behaviours
that result from untreated primary symptoms can include delusions and depression. Tertiary
side effects which may not be symptoms at all include withdrawal from meaningful
activities, uninvoked anxiety and dependence on others for activities of daily living (Zeisel,
2010, p. 37-38).
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Non-symptoms are natural reactions to the social and physical environment. The behaviours
are often blamed on the person with dementia while ignoring the social or physical
environment to which any of us would have similar reactions. Reactions include refusing to
eat, bathe or get dressed; apathy; restlessness and agitation; repeated shouting; insomnia;
escaping and aimless wandering; and resistiveness leading to combativeness during
caregiving. Understanding this can help caregivers be more compassionate and patient with
their charges.
The unmet needs of people with dementia may be physical (pain, fatigue, hunger or thirst),
emotional (the need to feel needed and be useful, to care for someone or something, to have
their self esteem boosted, to feel love and give love), and environmental (adjusting to new
surroundings, sounds, temperature, orientation to space). Difficult behaviours can also be set
off by triggering tasks (dressing, washing and eating) (Verity & Kuhn, 2008). Our
challenge as caregivers is to look beyond the behaviour to see what might be causing it.
“With an accepting attitude, you do your best to understand their thoughts,
feelings and actions. This attitude enables you to look for the causes or triggers
of their challenging behaviours and to develop creative solutions.” (Verity &
Kuhn, 2008, p. 52).
Difficult behaviours remain challenging for caregivers. It is easy to take the behaviour
personally. In these instances it is suggested that caregivers notice their reactions to difficult
behaviour and see how their interpretation of the behaviour is the problem and not the
behaviour itself (Verity & Kuhn, 2008, p. 54).
“Self awareness is critical [...] Challenging behaviors are opportunities to
hold up a mirror and learn something about yourself. These situations
often reveal how you feel about yourself, your relationships, your beliefs,
your sense of humo r, your sensitivity and your self confidence. These
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personal thoughts and feelings influence how you interpret challenging
situations and shape your responses” (Verity & Kuhn, 2008, p. 54).
Be open
A person with dementia experiences mood changes and shifts between various stages of
orientation and disorientation throughout the day. What worked yesterday may not work
today. Having expectations of how an interaction may go will get in the way of seeing how
they really are, and set you up for failure.
“Expect your loved one’s mood to change without any warning, and don’t be
dismayed when it happens. Assume that he understands, have no expectation
that he will respond and you may be pleasantly surprised” (London, 2009, p.
29).
Some authors provide ideas on how to centre before entering into an encounter (Feil, 2002;
Strauss, 2001). These practices are intended to help the caregiver put aside other concerns,
to become focused on this moment and to be receptive and open to what they find.
Another aspect of openness is being able to accept the reality of a person with dementia and
to follow them to where they are, entering their world. Many authors explain why memories
become reality for those with advanced dementia. Damage to the brain hinders their ability
to think logically and keep track of chronological time. As these abilities recede, memories
come to the forefront of their world.
“Instead of keeping track of time, they keep track of memories. A 90 year old
Time Confused woman forgets that she just ate. She remembers only that she
must feed her children.” (Feil, 2002, p. 78).
A common approach in the past to people with dementia was to try to explain why their
perception was wrong or reorient them to this reality. It is now realised that this is
unproductive, (their view doesn’t change) and unkind, (they either must be frequently
20
reoriented at great distress to them or their denial turns into hostility or apathy). It is now
commonly accepted that it is better to accept the reality of the person with dementia.
Methods to deal with an alternative reality include the use of non-threatening, factual words
to build trust, rephrasing what they are saying using their own key words, using ambiguity
to respond to a person who fails to make sense, and observing and matching their emotions
(Feil, 2002, p. 81-84). It is only by accepting their reality and entering their world that we
can find ways to validate and connect with people who have advanced dementia.
Validation offers disoriented people “an empathetic listener, someone who does not judge
them, but accepts their view of reality. As the trust between the [...] person and the
validating caregiver grows, anxiety is reduced, the need for restraints lessens, and the sense
of self worth is restored.” (Feil, 2002, p. 28).
Bring your whole person to the relationship
The point at which respectful caregiving tips over into exquisite care is where caregivers
bring their full personhood to the relationship. Stepping beyond the professional distance of
the medical model is a significant shift. Professional distance is recognised as a barrier to
developing understanding and empathy because it is an “outsider’s perspective”(Verity &
Kuhn, 2008, p. 18).
Person Centred Care is not just about the person with dementia. In the past the problem was
seen to be with the individual with dementia and their neurological decline (Kitwood &
Bredin, 1992). By defining personhood as a inherently social and interactional state and
putting this at the centre of his Person Centred Care model, Kitwood draws us as caregivers
into the picture as well. This includes all that we are, both the positive and negative aspects
including limiting thoughts and behaviours. We must bring it all to the situation. We are not
just there to look after the other or even to be good to them as caregivers, but to join them
with all that we are in the encounter (Kitwood, 1997).
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A way to understand the distinction is to look at the framework on healing presence, which
was developed based on observations of caregivers in an acute care setting (McDonoughMeans, Kreitzer, & Bell, 2004). Four ways of being present were captured: presence, partial
presence, full presence and transcendent presence. Each of these is described by three
characteristics of presence: quality of being there, focus of energy and nature of the
interaction. These are useful to give a background to this discussion.
Within this framework ‘presence’ means being physically present in context with another
but the focus is on personal subjective reality (self absorbed) and there is no interaction with
the other. ‘Partial presence’ means being physically present with a focus on objects or tasks
in the environment relevant to care but none of the energy is directed at the other and the
nature of the interaction is that it is with part of the other but not the whole person.
‘Full presence’ is where the caregiver is physically present and attending, with eye contact
and leaning toward the other. The caregiver is also psychologically present with attendant
listening behaviour. The focus of the energy is on the self and other; the focus on the other
influences responses and creates a reciprocal relationship. The focus is on the here and now
and anchored in present reality. The nature of the interaction is interactive with essential
communication but professional boundaries and role restraints exist.
Finally, ‘transcendent presence’ is where the caregiver is physically and psychologically
present. The focus of energy is centered and subject-to-subject, moving beyond
transactional to transpersonal interaction. It is transformational and spiritual in quality and
leads to a feeling of ‘oneness’ between the caregiver and patient. The interaction is a
relationship with a high degree of skilled communication. It is role free without boundaries
and involves human intimacy and love.
The notion of transcendent presence maps on to exquisite care as described in the literature
on caring for those who have dementia. The relationship must be a two way street; we must
be open to love from the person with dementia as well as giving love. We are aiming to
create an “authentic, mutually enhancing relationship” (Pearce, 2007, p. 97). It is within the
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context of this relationship that our understanding and empathy, our presence and love,
become treatment against the symptoms of dementia. The caregiver is in a very real sense
the treatment.
“Because of an increase in emotional sensitivity of a person living with
Alzheimer’s through the illness, every thing you do when in their presence
affects them. When you smile or frown, when you pay attention to what is being
said or have your attention diverted, when you talk about something important
or unimportant - all these actions directly affect the relationship” (Verity &
Kuhn, 2008, p. 166).
Bringing our whole self to the picture also means bringing awareness of how we are
impacted by being in this setting. Self awareness is very important for caregivers as attempts
to connect with people who have dementia “can ignite our most hidden fears, insecurities
and our deepest grief” (Pearce, 2007, p. 12). Thoughts of pity, fear, grief, impatience and
inadequacy act to distract from a simple and open presence. Exactly because we are frail
humans with failings of our own - just like those we are caring for - we need to bring
therapeutic self awareness to our work. This means being able to notice what is going on
inside, and to not hide this behind a professional persona (Pearce, 2007).
Visit 5 The secure unit is a hard place for me to go. My biggest fear is
being on that unit as a resident, being fed perfunctorily by a staff person
while she is engrossed in conversation with another staff person. I want to
kill myself before that happens. Imagine it - having brown goo shoveled
into your mouth until you are full.
Visit 7 Working with those who have dementia brings up a lot for me. I
feel I am being sucked inexorably towards dementia and death.
The nature of the relationship
The relationship we aim to achieve is like Buber’s I-Thou relationship. I-Thou operates in
the world of relation, rather than in the field of experience or pragmatic utilitarianism. Here
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also is the need to not hold back any part of the self, to bring our whole being to the
relationship. The reciprocity of the relationship is underlined “It acts on me as I act on it”
(Buber, 1970, p. 61). I-Thou relationships are marked by a lack of preconceived notions or
expectations.
“Nothing conceptual intervenes between I and You, no prior knowledge and no
imagination [...]. No purpose intervenes between I and You, no greed and no
anticipation” (Buber, 1970, p. 62).
The literature on dementia care makes it clear that an attitude of respect and
understanding, as well as empathy and openness are essential to create a trusting
relationship within which caregivers can validate the experiences, past and present, of
the person with dementia. Creating that connection requires caregivers to move
beyond the professional distance of the medical model. Rather than being there to
‘help’ this poor unfortunate person, caregivers aim to create a mutually enhancing
relationship.
The literature further indicates that caregivers must bring their full selves and be open
to the situation, opening both their minds and hearts. By so doing caregivers make
themselves vulnerable and must accept, acknowledge and work with what comes up
for them. Through presence to all that caregivers are and all that the person with
dementia is, caregivers can create healing both for themselves and those that they are
with.
Context of care
Our work with those who have dementia does not occur within a vacuum. We need to be
cognizant of the context within which the care takes place in order to maximise our chances
of having a positive impact. This paper’s focus is on care in institutions such as a Long
Term Care Facilities in Canada and Skilled Nursing Facilities in the United States. The
nature of the environment, the rules and norms that operate and the people who inhabit the
24
space will all impact our access to and work with those who have dementia. We need to
focus on the system as a whole if we wish to make a lasting impact.
A major factor affecting the quality of care in a Care Facility is the staff who deliver it.
Nursing Assistants are relatively disadvantaged economically, often have low levels of
educational attainment, have physically and emotionally demanding work, and are among
the lowest paid in the service industry (Stone, 2001).
Annual turnover rates have been recorded as high as 85.8% for Nurse Aides and Licensed
Practical Nurses and 55.4% for Registered Nurses (Castle & Engberg, 2005). The
recruitment and retention of staff was seen by many to be in a state of ‘crisis’ at the turn of
the millennium (Stone, 2001: McBee, 2008). High turnover would seem to indicate a lack of
job satisfaction. This is reflected in comments in the literature about staff being busy with
tasks and unable to focus on one-to-one communication with residents.
“[T]hey have to serve so many meals, do so many laundries, handle so many
hygiene and personal care issues, dispense so many medications, organize so
many group activities, that it is difficult to find time for the one-to-one
interactions that drew them to their job in the first place” (Strauss, 2001, p. 51).
Just over two decades ago, Kitwood described practices of infantilization, intimidation,
stigmatization, and objectification in treatment contexts and caregiving relationships that
create a “malignant social psychology” (Kitwood, 1997). This damages the self esteem of
the person with dementia and leads to loss of selfhood. The development of the Person
Centered Approach was intended to address these negative practices which can be seen to
speed the deterioration of those with dementia. So what is the situation today?
The most comprehensive recent data on quality of care in Long Term Care Facilities in the
United States comes from the American Health Care Association (AHCA) and Alliance for
Quality Nursing Home Care (Alliance) America Quality Report (2010). This report draws
on data tracked by the Centers for Medicare and Medicaid Services (CMS). While this data
25
includes post-acute patient care which is outside the brief of this paper, it gives a view on
the care for long term care residents with dementia.
The report indicates that though staffing turnover has been high in the past it is improving.
The turnover rate for certified nurse aides decreased from 71.1 percent in 2002 to 65.6
percent in 2007, and the turnover rate for staff registered nurses decreased from 48.9 percent
to 41.0 percent over the same period. Workforce satisfaction has increased in every job
category across nursing homes between 2007 and 2009, although satisfaction among nurses
and nursing assistants remains lower than the satisfaction of employees in other job
categories in the field (ACHA Alliance, 2010, p 24).
A number of models representing the paradigm shift from the medical model to Person
Centred Care have arisen in recent years including Wellspring, Green Houses, and the Eden
Alternative (ACHA Alliance, 2010, p. 39). No comprehensive analysis of all facilities in
America has been done but studies of a subset of facilities show that many facilities in the
States are now adopting Person Centred Care in some form. However, few organisations are
implementing Person Centred Care in a comprehensive manner and as many as 30-40% of
organisations have made little or no change at all. Of those who have made a change to
Person Centred Care, 27% had only provided alternate dining (to buffet or restaurant style
for example) and 11% had created a more homely environment (moving to smaller group
homes). Only 25% have implemented staff empowerment or resident directed care (ACHA
Alliance, 2010, p. 38). Finally, even having a designation as a Wellspring, Eden Alternative
or other culture change model nursing home does not mean that a consistent approach to
Person Centred Care is provided there (ACHA Alliance, 2010, p. 40).
We can conclude from this data that improvements in caregiving for those with dementia in
these facilities are slow and patchy. Many residents remain in a situation where they are not
getting the one-to-one attention that they need. Other measures in the report highlight areas
for concern. For example, the prevalence of little or no activity is down from 16.2% in 2000
to 14.9% in 2009 (ACHA Alliance, 2010, p. 30).This figure still seems very high when
you consider that it means a person is doing nothing each and every day. Also, there are
26
signs that drugs are being used to pacify residents instead of caregiving time and attention.
While residents who are physically restrained are down from 9.3% in 2000 to 3.1% in 2009
the use of antipsychotic and anti-anxiety/hypnotic drugs is up 16.1% to 18.6% and 17.0% to
23.1% respectively over the same period (ACHA Alliance, 2010, p. 30).
Referring back to the Healing Presence framework (Osterman & Schwartz-Barcott,
1996)discussed in (McDonough-Means, et al., 2004) it seems likely that caregivers are
mostly in ‘Presence’ or ‘Partial presence’ modes. This means that although they are
physically present with the person with dementia their focus is likely to be either on their
own subjective reality (self absorbed) or on the objects or tasks in the environment relevant
to care. In many cases, no energy is directed at the person in their care. Either there is no
interaction or there is only the interaction that is necessary to complete a task.
The situation of staff being over extended is explicitly acknowledged in the literature on
dementia care. Strauss (2001) suggests treating staff with respect and understanding and
trying to develop a partnership with them in order to achieve the best outcome you can for
the residents.
Buddhist practices and how they can help
The literature on dementia care is clearly aiming for exquisite care. I have shown previously
in this paper that exquisite care is equivalent to transcendent presence. The indicators of
transcendent presence are a caregiver who is physically and psychologically present. It is a
transpersonal interaction which is transformational and spiritual in quality and leads to a
feeling of ‘oneness’ between the caregiver and patient. The interaction is role free without
boundaries and involves human intimacy and love. This level of care is difficult to achieve
given the constraints on care facilities still grounded in the medical model and given the
pressures on staff.
Nevertheless, in my opinion, Buddhist practices can bring important change to this situation.
I have focused my attention on the Buddhist practices of Mindfulness of Breathing
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meditation, Loving Kindness meditation and the three tenets of the Zen Peacemaker
Fellowship: not knowing, bearing witness and compassionate action.
What is mindfulness?
Mindfulness has been usefully described as having three core elements: intention, attention
and attitude (Sharpiro, et al, 2006). In many healing disciplines intention is a crucial
component of the healing process (McDonough-Means, et al., 2004). It is a frame of mind
rather than an orientation toward an action.
“...thinking related to intentionality connects with the concepts of consciousness,
energy [...] if our conscious intentionality is to hold thoughts that are caring,
loving, open, kind and receptive, in contrast to an intentionality to control,
manipulate, and have power over, the consequences will be significant”
(Watson, 2002, p. 12).
Attention is observing our present moment internal and external experience. The practice is
to suspend ways of interpreting experience and instead just attending to the experience
itself. In this way, practitioners learn to attend to the contents of consciousness moment by
moment.
Attitude is about how we pay attention; i.e. in a non judgemental way. The attitude in
mindfulness practice is accepting, open, curious, patient, non-striving, kind and non-reactive
(Sharpiro, et al., 2006).
Generating three fold transparency
The term ‘threefold transparency’ was coined to refer to the ability of a caregiver to be
transparent to themselves, for the world to become transparent to the caregiver, and for the
caregiver to become transparent to the world (Roshi Halifax, 2010).
“To meet suffering and bear witness to it without collapsing into withdrawal or
alienation, first we must stabilize the mind and make friends with it. Next we
open the mind to life - the whole of life, within and around us, seeing it clearly
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and unconditionally from a stable inner base. And then we fearlessly open our
hearts to the world” (Roshi Halifax, 2010, p. 20).
This is a useful map to use in describing how Buddhist practices help caregivers achieve
exquisite care.
The foundation: creating a spacious mind
It is important to acknowledge that the state of mind of the meditation practitioner is
important to the results of their practice. This state of mind is created by their intention.
From the Mahayana perspective this is an “aspiration to help others” (Roshi Halifax, 2010,
p. 10) which gives the meditation practice energy and breaks the practitioner from selfattachment.
“Our intention to practice in order to help others and the commitment, whole
heartedness, and energy we bring to our practice make a big difference in the
quality and outcome of our meditation” (Roshi Halifax, 2010, p. 10).
This echoes comments in the dementia literature about the importance of intention when
working in a Care Facility (McBee, 2008, p. 77). Our ability to create a strong intention is
an important element of mindfulness practice just as it is an important element of exquisite
care. By beginning each meditation session with strong intention we practice and strengthen
our intentionality which is then available to us for our work in dementia care.
The Theravada perspective sees generosity to others and a commitment to the moral code of
the Buddhist precepts as an important basis for meditation practice. Our actions create not
only the world in which we live but the state of our own mind. Generous actions create a
“confident wide open world” (Thanissaro Bhikkhu, 2003) where we have the ability to give
to others, and it also creates a spaciousness of mind within ourselves.
“When you sit down and focus on the breath, what kind of mind do you have?
The mind you’ve been creating through your generous and virtuous actions. A
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spacious mind, not the narrow mind of a person who doesn’t have enough”
(Thanissaro Bhikkhu, 2003, p. 3).
The state of mind that we create through our intention and actions readies us to connect
more fully when we enter the Care Facility. This point is echoed in the literature on
dementia care.
“The feelings, thoughts, and words you use in your inner dialogue or when
speaking to others have a profound effect on your actions and the results you are
able to achieve” (Verity & Kuhn, 2008, p. 37).
Visit 2 I did a half hour meditation before going to the Care Facility. I began with
tuning into my body and reminding myself to stay connected with my self in this way
during the visit. I then focused on my intention for the visit which was to connect with
the residents.
Establishing a relationship with self
A key aspect of transcendent presence is the degree to which the caregiver brings their full
self to the encounter. This is not an unusual proposition. It has been argued elsewhere that
every healing effort and healing intention starts within the health care professional
(Schmidt, 2004). A symmetry is said to exist between our relationship with the inner world
and with the outer world. The quality of the relationship that we have with our inner self
will be reflected in our outer relationships. Mindfulness practice is a way for healers to
develop a positive relationship with their inner self.
Two qualities are required of the healer for a healing encounter (Schmidt, 2004). The first
quality is unconditional acceptance and positive regard for self, which is built on self
acceptance and respect for who we are, not what we have achieved. This quality has been
shown to develop through mindfulness practice.
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“Buddhist psychology begins with deliberately cultivating respect starting with
the self. When we learn to rest in our own goodness, we can see the goodness
more clearly in others” (Kornfield, 2009, p. 18).
The second quality required of a healer is a healing attitude towards self. This comes from a
connection to our inner self and the ability to have a ‘centre’ observing all of the thoughts
and feelings without being attached to any one thought in particular.
By watching our thoughts and emotions during mindfulness practice we are able to reperceive (Sharpiro, et al., 2006). Rather than being totally subjectively immersed in our
thoughts we can rotate our perception from the subjective to the objective. By watching
thoughts and letting them go we realise that we are more than this thought; we can see that
the content of our mind is different from the consciousness contemplating it. This can be
applied to any situation including the experience of pain by realizing I am more than this
pain. A similar condition can arise while working with those who have dementia when we
feel their anxiety and frustration but recognize it is not our pain.
Mindfulness helps a caregiver establish a solid place from which to work with others. It
enables the practitioner to create a relationship with self which is based on acceptance and
respect. This establishes a basic confidence for engaging with others.
“Buddhist psychology offers meditations, cognitive strategies, ethical teachings,
which form a powerful set of practices that foster inner transformation. But it
starts with a most radical vision, one that transforms everyone it touches; a
recognition of the innate nobility and freedom of heart that are available where
ever we are” (Kornfield, 2008, p. 20).
Opening the mind to life
Being able to see the world more clearly comes from attentional balance, emotional
balance, a strong mind-body connection and the ability to shift our orientation from a ‘self’
to ‘other’ focus.
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The deep concentration that is developed in mindfulness practice brings tranquility and
attentional balance. Over time and with commitment and effort, meditation fosters a calm
and quiet mind. From this place the practitioner is less reactive, more responsive and can
see things more clearly (Roshi Halifax, 2007).
“As our mental and physical practice develops, we become internally quieter
when our capacity for self-observation, and concentration deepen. In this way,
mental stability is nourished” (Roshi Halifax, 2007, p. 18).
As self awareness increases and the ability to perceive the world stabilizes the practitioner is
more able to choose how to respond to situations and people rather than being reactive.
They get better at recognizing objects of the mind that create suffering (unhelpful ways of
thinking) and to choose not to engage in them. This constitutes emotional balance (Roshi
Halifax, 2007, p. 16).
Visit 9 I have noticed a recurring fantasy that I am yelling at the staff or
management that I’m the only one who actually talks to the residents and treats
them with respect. I have redoubled my efforts to be understanding of staff. I
walk a thin edge, being true to myself while accepting how the nurses need to
be. I am holding my tongue.
Visit 10 I noticed more care by the nursing staff this time. I felt less ‘me’ versus
‘them’. I think they do care and try their best for the residents, but they get very task
oriented and are not aware of how their actions diminish the residents.
Mindfulness practice is a general preparation so that the basic mental state is like a healthy
immune system. With practice we gain strength and experience so that when strong
emotions like anger are about to arise it is much easier to deal with them. Even if we cannot
resist strong emotions, we can learn to become more mindful in the way we express them.
32
Alternatively, we may feel regret at having expressed the emotion and so gain a new
determination to change (Goleman, 2004).
This level of self awareness is mentioned throughout the literature on dementia care as
essential for caregivers. As our own emotional reactions come up - to the environment, to
the issue of dementia and to the people who we are trying to serve - we need to
acknowledge and work with these reactions (McBee, 2008; Pearce, 2007). We also need to
be able to respond rather than react to the challenging behaviors of people with dementia
(Strauss, 2001; Verity & Kuhn, 2008).
Visit 7 Reflecting on my interaction with Owen - I felt very sad listening to him and
inadequate in my response. During this entire visit I felt physically outside of myself
and awkward. I heard myself and it seemed not to be me. I realise now that I was
‘trying’. This is my ‘Do Gooder’ role. On top of this, Owen really pushed my buttons. I
felt drawn into his state of befuddlement and fear. What is his stuff and what is mine?
Buddhist practices also focus on creating a strong connection between mind and body.
There are many Buddhist practices that strengthen the ability to be present by bringing
body, heart and mind together (Kornfield, 2008). With this connection we have more
information to work with; we can feel our emotions and attitudes in the body, acknowledge
them as part of ‘this moment’ and through this connection we can come to understand
ourselves better. Being connected to our body allows us to be more genuine in our
interactions and increases our ability to develop intimacy (Roshi Halifax, 2007).
Through connection of the mind and body we can also understand the world better. By
placing our attention on our breath we synchronize our mind and body and can then tune our
mind and body to reality. This process opens us up to our intuition.
“When our body and mind are synchronized with the world, the non-conceptual
intuitive mind can awaken. Thoughts and reactivity are not standing between us
and the world within or the outside world. Because we may no longer be caught
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in a web of concepts, it is possible to perceive directly, beyond language and
ideas, and beyond our conditioning” (Roshi Halifax, 2007, p. 18).
It is suggested in the literature on dementia care that intuition is an important tool for the
caregiver, especially when words and understanding fail (Verity & Kuhn, 2008, p. 19).
Reference is also often made to the value of tuning into the body language of the person
with dementia to assist with communication. Pacing and matching movement and emotions
all help a caregiver make a connection (Feil, 2002). Being in touch with your own body
helps this process.
Finally, being able to give attention fully to the person with dementia helps us to empathize
and remain open rather than closing down. Studies in neuroscience point to changes in
attention created by mindfulness practice. It has been shown that we tip between a focus on
self and external attention all of the time but mostly we are not aware of this or that a
balance between the two is important. The parietal lobe cortical networks are more
orientated toward self while our temporal lobe networks or Allocentric stream is more
oriented to other. Research shows that meditation can activate our Allocentric stream and
diminish our self centred stream (Austin, 2009). This helps us be consciously present with
another which is essential in being with those with dementia as reflected in the literature on
dementia.
“The most important intervention is our authentic presence in each interaction”
(McBee, 2008, p. 71).
Empathic distress has been shown to arise from a self centred perspective while working
with others, which induces more intense physiological responses to another’s suffering. A
way to reduce empathic distress is to move from a sense of self. Recent brain imaging
research has shown that meditation practice reduces the time needed to disengage from self
focused brain activity (Kaszniak, 2010). So meditation practice may help caregivers
experience their care giving as a positive experience. In addition, expert meditators have
shown greater activity in empathy related brain regions when distressed voices were heard.
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Meditation practice may help us move to a positive empathic response by shifting our focus
to the other from our self (Kaszniak, 2010).
By developing attentional and emotional balance and by having a strong mind-body
connection the mindfulness practitioner is free to be open and authentic in interactions and
is able to develop real intimacy in relationships with others. These are all prerequisites of
transcendent presence. In addition, neuroscience shows that mindfulness practice may
increase caregiver resiliency in the face of another’s suffering.
Opening our hearts
As well as making us more aware of and more able to deal with our unhelpful states of
mind, mindfulness practice can be used to create prosocial states of mind. For example,
Loving Kindness (metta) meditation promotes acceptance, kindness and love for others.
Many authors on dementia care point to the need for universal love as part of the healing
relationship between caregivers and those with dementia (London, 2009; Pearce, 2007;
Strauss, 2001; Verity & Kuhn, 2008; Zeisel, 2010).
“The capacity to love and be loving survives despite Alzheimer’s. Love is not
forgotten” (London, 2009, p. 56).
Loving Kindness meditation, or ‘metta’, offers health, happiness and peace first to
ourselves and then to others. In this practice we open our hearts to ourselves and others, just
the way we are, without wishing for things to be any different. By focusing on ourselves and
others in an open, non-judging and loving way we create a mind state that can see we are
part of a greater whole.
“When we practice metta, we open continuously to the truth of our actual
experience, changing our relationship to life. Metta - the sense of love that is not
bound to desire, that does not have to pretend that things are other than the way
they are - overcomes the illusion of separateness, of not being part of a whole”
(Salzberg, 2002, p. 21).
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Visit 11 Before I go to the facility I meditate on Loving Kindness for the
residents and generate an intention to connect with them. During that day I
thought to myself that I could include staff in a Loving Kindness meditation. I
realize how much harder this would be for me as I have some antipathy for
them. It is that feeling of aversion which made it clear just how much I need to
do Loving Kindness practice for them.
Visit 12 This morning I did Loving Kindness meditation for myself and for the
residents, picturing each one of them. I then did Loving Kindness for the staff. I
finished by focusing on my intention - to connect with the residents and staff.
Exquisite caregiving is not just a matter of being loving to those with dementia. We are
aiming to create that sense of intimacy and oneness, to develop a mutually enhancing
relationship characterised by authenticity and a lack of anticipation and purpose. The three
tenets of the Zen Peacemaker Fellowship: Not Knowing, Bearing Witness and
Compassionate Action guide the way to the very heart of transcendent presence by directly
encouraging transparency in the practitioner. These tenets do not follow in a linear fashion
but inform each other (Senauke, 2010, p. 39). I will investigate each in turn.
Not Knowing is being free of expectation or desire for a particular outcome so that we can
see what is actually in front of us (Roshi Halifax, 2010, p. 1). This state of openness allows
us to respond spontaneously from the heart. It requires that we give up our usual
understanding and ways of seeing the world.
“When we live out of unknowing we’re shredding our suit of armor. Each time
we let go of our fixed ideas about ourselves and others, we are letting go of our
individual system of survival. For these systems may have once helped us
survive, but now they are destroying us. They are destroying our ability to act
spontaneously, to respond directly, to take care of any situation as it arises”
(Roshi Glassman, 1998, p. 176).
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References have been made in the literature on dementia care to the need to not have
expectations (Strauss, 2001, p. 13) and suggestions have been offered on how to generate
the warm heart that does not have an agenda, prejudice or anticipation (Pearce, 2007, p. 75).
The six instructions of Insight Dialogue reflect this need to create openness in what has been
called “liberated intimacy” (Kramer, 2007). The intimacy developed by the Insight Dialogue
instructions is not build up out of ideas or experiences but comes about through the absence
of these. It is a meeting that occurs in sharing ‘just this awareness’.
The fourth Insight Dialogue instruction, ‘Trust emergence’ mirrors Not Knowing. It asks us
to let go of needing to know or needing what happens next to have a comfortable and known
pattern. This instruction acknowledges that all things are in flux and asks us to ‘make the
leap of faith’ into impermanence without needing to control (Kramer, 2007).
“Trust Emergence is rooted in the wisdom aspect of Insight Dialogue. That is, it
supports our seeing things as they are - unstable and far more complex and fluid than
the mundane glance can know. The dynamic quality of experience demands a robust
practice and provides the object of that practice: change itself” (Kramer, 2007, p. 139).
Related to Not Knowing is the idea of not fixing and not doing. Caregivers are often people
who feel the need to be active when suffering occurs but the activity itself can get in the way
of healing (Roshi Halifax, 2010, p. 10). Not doing allows space for things to emerge in the
same way that Not Knowing does and teaches us again to accept this moment just as it is.
“When we practice non-dong and openness we nurture patience and learn to accept
each thing, each moment. These are keys in reflective practice that open the doors to
non judgement, trust and surrender” (Roshi Halifax, 2007, p. 18).
Working with people who have dementia also teaches us how to be in the moment without
expectations. The person with dementia moves from one moment to the next creating a new
37
beginning each time. As caregivers, we do not know what will be presented or where the
interaction may lead. The tenet of Not Knowing maps on to the element of exquisite care
from the dementia literature which requires no prior knowledge, no purpose and no
anticipation of an interaction, but which leads to healing for both the person with dementia
and the caregiver.
“In letting go, you might experience moments of feeling lost, but you also create new
open space that allows the entry and evolution of moments so much more precious
than you could have imagined. These moments help clarify and unite the heart and
mind of both you and the person with dementia.” (Pearce, 2007, p. 65).
Visit 16 I took lots of people for walks around the unit today and as I did I felt into my
body and relaxed. I told myself that I didn’t have to do anything, didn’t have to know
anything.
Bearing witness is a practice of mindfulness in the moment, to ourselves and others
involving both mental stability and focused presence (Roshi Halifax, 2007, p. 50). It is free
of prejudice or judgement. Authenticity makes being present in this way an act of great
intimacy. Necessarily this means being present to both the joy and suffering that might
occur in any moment. By being present to our own suffering and learning to remain open to
it, we are better placed to have empathy for others.
“Through experiencing our own suffering and developing an atmosphere of
openness toward it, we can be with the suffering of others in a more
accommodating, kind and understanding way” (Roshi Halifax, 2007, p. 103).
This practice requires both compassion and equanimity. Compassion opens our heart to
suffering, both our own and that of others. Developing compassion, the “profound
realization that we are not separate from one another” (Roshi Halifax, 2007, p. 81), builds
resiliency in the caregiver for the work at hand. Equanimity is the recognition that the world
38
we live in is constantly changing. It is the strength of mind to be able to remain open and let
go as life’s changes hit us wave after wave.
“What kind of mind and heart can stay strong and open and not fall prey to
conditioned reactions? Can we grieve fully and not cling to our grief? Can we feel the
post-operative pain and not cling to it? Can we be with the unknowable and open to
trust at the same time?” (Roshi Halifax, 2007, p. 82).
Bearing witness as also a social act. The three tenets of the Peacemaker Fellowship arise
from the Bodhisattva Vow to save all beings (Senauke, 2010, p.21). On a social level this
means to seek out places where suffering arises, to stand beside those who are suffering and
lend support. This intention, embodied in the statement “I will not abandon you” is at the
heart of being with those who have dementia as described in the literature on dementia care
(London, 2009; Pearce, 2007; Strauss, 2001; Verity & Kuhn, 2008; Zeisel, 2010). To be
mindful requires that we step out and engage with the world and the suffering that we see.
Through this process healing arises.
“In my view, we can’t heal ourselves or other people unless we bear witness. In the
Zen Peacemaker Order we stress bearing witness to the wholeness of life, to every
aspect of the situation that arises” (Roshi Glassman, 1998, p. 76).
The third tenet of compassionate action is healing ourselves and others (Senauke, 2010).
Not Knowing and Bearing Witness have freed us from fixed ideas and opened our hearts
and minds to what is, teaching us to include everything that arises in our healing action
(Roshi Halifax, 2007). We face each moment with compassion and equanimity. Our
compassionate action arises naturally from our presence to this moment.
“When we bear witness, when we become the situation ... the right action
arises by itself. We don’t have to worry about what to do. We don’t have
to figure out solutions ahead of time...Once we listen with our entire body
and mind, loving action arises” (Roshi Glassman, 1998, p. 84).
39
As with transcendent presence, mindful actions of this type are transformational and
spiritual in nature. We can connect with the other from “a place deeper than our personality
and our conceptual mind” (Roshi Halifax, 2010, p. 19). Through authentic interaction we
can also connect to our oneness with the other person.
“This is where spirit appears - not in an individual but between individuals.
When this happens, the distinction between self and other simply vanishes, as
the spines of fear disappear from around the heart.” (Roshi Halifax, 2010, p. 19).
Summary
A strong parallel exists between communication principles espoused in the literature on
dementia care and the literature on mindfulness. Most importantly this review of
mindfulness shows the mechanics of how mindfulness practices can create in a caregiver the
ability to attend with transcendent presence and ultimately exquisite care.
“Many of these communication principles reflect a mindful interaction: paying
attention to the moment, non-judgementally; engaging the whole self; tuning
into the environment; becoming acutely aware of our impact on others” (McBee,
2008, p. 73).
Mindfulness helps the healer establish a solid place from which to work with others. Having
a strong and healthy relationship with self though mindfulness will help to create strong and
healthy relationships with others. It provides the self awareness called for in the literature on
dementia care to deal with difficult emotions and behaviours in the person with dementia. It
also gives us as caregivers a way to deal with the emotions that may arise within ourselves.
We do not turn away from our own distress, nor do we turn away from theirs. We are
transparent to ourselves and the world is transparent to us.
The three tenets of the Zen Peacemaker Fellowship, Not Knowing, Bearing Witness and
Compassionate Action, show the way for a practitioner to be transparent in the world.
40
“Using the three tenets as an orientation transforms service into spiritual
practice. Specifically, these practices “suspend separation and hierarchy, and
open direct encounter between equals” (Zen Peacemaker Order).
In these ways mindfulness practice can teach the skills of transcendent presence and
exquisite care in the context of dementia care.
41
Chapter 4. Discussion
Introduction
This chapter has two sections. In the first section I will map the areas of intersect between
my experience volunteering at a Care Facility and the literature on dementia care and
Buddhist practices. My themes - bearing witness to myself, working in an institution,
learning about empathy, learning about love, and not knowing and not fixing - reflect the
issues that arose for me and I present them chronologically to reflect that this was and is an
ongoing learning process.
In the second section I will discuss how training in exquisite care based on the literature on
dementia care and Buddhist practices can be used to support more connection for people
with dementia in Care Facilities.
My experience of dementia care
Bearing witness to myself
As soon as I stepped foot in the door of the Care Facility I had the opportunity to bear
witness to my own suffering and that of the residents and staff. I had very strong emotional
reactions to the environment. I was plagued by thoughts of getting dementia myself as it
runs in my family and by sad and depressed feelings about the fate that awaited me, i.e.
being put in an institution similar to the one I visit and being treated like the residents I see
each time I go there. These feelings stayed with me for the first seven weeks of visiting and
then ceased. The literature on dementia warns that working in the field of dementia care can
arouse strong emotional reactions (McBee, 2008; Pearce, 2007).
Visit 4 I looked around. Most people were sleeping in front of the blaring TV. I
thought - I am going to be here before very long once the dementia gets me why am I spending time here now? Run, flee for your life!
Mindfulness practice gave me the ability to see and feel these emotions arise and to just sit
with them. I was able to resist being totally immersed in my thoughts and emotional
42
responses, being able to ‘just watch’. This was very hard to do and I had to rely on my
intention in order to turn up for each visit. I don’t know why after seven weeks my fears
subsided but they did. What I am learning through my meditation practice is to be able to
watch with acceptance the mental constructs in my mind arise and diminish.
“When a sentient being arises in my mind, I have to take care of it for its whole
life. Sometimes that life may be just a few minutes. Sometimes it is a span of
hours or days. If the wound is deep, a traumatized being may stay around for
years, lurking in the corners of one’s mind, leaping painfully to life when
conditions are in place” (Senauke, 2010, p. 50).
I also experienced my tiredness and learnt how to look after myself. This process began with
my routine meditation before going to the Care Facility. I would check in with myself and
form an intention for the day. I noticed the tiredness in my mind and body and consciously
used this knowledge in my practice at the Care Facility. I arrived later so that I was more
rested, began to take breaks, actively relaxed during my visit and told the residents I was
going to ‘take it slow’ today.
Visit 9 I was standing in the dining room not knowing what to do - I had no
lunch and didn’t feel particularly welcome by the staff as they served lunch so I
went to buy my lunch. I realised that giving myself a break, as well as sleeping
well is looking after myself. That’s what looking after myself means! It was a
‘Eureka’! moment. I think this is the first time I have found an alternative to
my usual ‘Work Hard!’ approach.
Mindfulness gave me the ability to see what was happening within myself, to accept this and
to make choices about how to proceed. Looking after myself in this way is new to me, a big
shift, and an important lesson, especially in the role of caregiver. The dementia care
literature discusses the importance of authenticity (London, 2009; McBee, 2008; Verity &
Kuhn, 2008) and care for the caregiver (London, 2009; McDonough-Means et al 2004). In
Buddhist tracks this practice of including all in the moment is part of bearing witness to self
43
(Roshi Glassman, 1998) and bringing more authenticity to each encounter (Roshi Halifax,
2010). Because of our interdependence a healing for self is healing for the whole world.
“There is no separation between inner and outer, self and other. Tending
ourselves, we tend the world. Tending the world, we tend ourselves” (Kornfield,
2009, p. 356).
Working within an institution
Although there is some mention in the literature on dementia care about the challenges of
being within a Care Facility and dealing with the unskillful behaviour of some staff (Strauss,
2001), it is not mentioned by many authors. This has turned out to be a very big issue for me
during my visits. I was initially quite shocked at how residents are left for long periods of
time sitting in front of a TV. I also witnessed poor care on a number of occasions. This was
upsetting to me. I was given very little support or guidance myself and was made to feel that
I was in the way on more than one occasion. This set up a bad feeling within myself towards
the institution, the staff in general and a couple of staff in particular. I found my mind drawn
to angry fantasies where I berated the staff and management for their poor care.
Visit 1 It was quite a shock going into the Unit for the first time. I had to use a
security code to get in the door and I noticed immediately how uncomfortably
warm the unit is kept. I went to the TV lounge. I have never seen people like this
before - lolling in chairs or sprawled on sofas asleep, walking around mumbling
and holding lengthy conversations with themselves. What I witnessed was in stark
contrast to what I had read about in the dementia care literature.
My aversion has remained. I have been aware of it and taken steps to try to reduce it, though
I have only had moderate success. I initiated Loving Kindness practice for staff to open my
heart to them and I made an effort to interact with the staff each time I visited. Since doing
this I have noticed more care by staff towards residents. I don’t know if this is because I am
noticing it more or because the staff are being more caring. A Buddhist approach suggests
44
that one should bring the same intention to connect and attitude of openness and compassion
to staff as to the residents (Roshi Glassman, 1998).
I recognize that my self righteousness and expectations of how things ‘should’ be are getting
in the way. I struggle with ‘Not Knowing’ and ‘Bearing Witness’. I think I ‘know’ a lot,
although I only know the truth as I see it (Roshi Glassman, 1998). Bearing Witness is nonjudgmental and yet I have a lot of judgments about how care should be and about the people
giving care, novice though I am (Roshi Halifax, 2007, p. 50). Clearly more practice is
needed to achieve both attentional and emotional stability in my case.
My challenge is to find a way to talk to staff about my experience. Buddhist literature points
me towards generosity and the ability to speak the truth without fear (Senauke, 2010, p. 123124). This is also where my learning lies.
“Our ability to accept ourselves hinges on our having healing relationships with
those we want to shut out of our lives” (Roshi Glassman, 1998, p. 163).
I have heard that few people choose to volunteer in the secure unit. Apparently one man was
keen to do so but only lasted a couple of weeks. I am not surprised given the challenges of
learning to connect with the residents, the lack of support offered to volunteers, plus the
challenge of working within a Care Facility oriented to the medical model of care. If I had
listened only to my outrage at the care I witnessed I would not have been able to stay. If I
had denied my anger I would not have the resilience to keep returning week after week. By
Buddhist practice keeps me in there, looking squarely at my own suffering.
Learning about empathy
Sitting with the agitation, frustration, anxiety and fear of people with dementia is difficult. I
am developing my ability to sit with equanimity. Buddhist teachings explain equanimity as
the ability to accept that life is in constant change and that we need to recognize this so that
we can be in touch with but not be overwhelmed by suffering (Roshi Halifax, 2007, p. 83).
45
I also learnt the difference between being empathetic and trying to make the residents feel
better. To distract or placate a resident who is feeling strong emotions robs them of these
emotions. Whose interests does this serve? I realize that it is important for residents to be
able to express their feelings.
“Experts often advise us to redirect the flow of our words to change the topic or to
distract the individual. But this only breaks the connection, and diverts your loved
one from what she is trying to say, and relieves us, the listeners, of our
discomfort” (London, 2009, p. 31-32).
Not knowing and not fixing
In early visits I would sit in the lounge and find myself drawn to the TV, feeling leaden with
the weight of having to generate conversation. My overwhelm in the Unit was tied to my
sense of needing to achieve something. There were so many people all alone and I was the
only one trying to connect with them - it was too much. Who gave me this burden? I did.
What role have I given myself? To help, to rescue, to make the residents feel better.
“The reason we get overwhelmed is that we’re attached to a certain result or that
we want to achieve a certain goal. If we weren’t attached we wouldn’t be
overwhelmed. It’s endless. And we just take one step after the next” (Roshi
Glassman, 1998, p. 43).
Visit 5 Feeling that I need to generate a topic, but feeling the soap opera on TV
draining my very soul. I looked around. There were so many more people to see
and it is so hard to connect. I felt overwhelmed.
Visit 17 Today I didn’t even notice the TV (it was on quieter so didn’t get in the
way of talking). I was so engaged with always another person to say “Hello” to,
even for just a few minutes. I felt eager to see everyone, to catch up with them and
spend time. I love the contact, the touch. I love walking holding hands and
46
chatting about nothing much. They are breaking my heart open these daft old
people.
I realised that my attitude was a barrier to connection. I began to meditate on ‘Not
Knowing’ and ‘Not Fixing’ which helped me ‘just be’ in the Unit without the need to
achieve anything. I tried to have no expectations of the interactions and to respond afresh to
each one. This approach is encouraged in both the Buddhist literature in the practice of ‘Not
Knowing’ (Roshi Glassman, 1998) and in the literature on dementia care.
“My function is not to fix but to be in the flow of human connection rather than
out of it” (Pearce, 2007, p. 10).
In this way I believe I have been able to shift my tendency to want to rescue and instead just
relax and be myself. I have fewer expectations of outcome and fewer emotional reactions to
the residents’ emotions. I believe ‘Not knowing’ and ‘Not fixing’ have helped me gain some
equanimity. The need for this approach of not fixing is clearly expressed in both the
Buddhist literature (Roshi Halifax, 2007, p. 51) and that of dementia care.
“Group members quite powerfully expressed the anger and frustration of
institutional life, having lost not only much of their independence but also
control over many aspects of their lives. My automatic response was to try to
fix the pain, to offer a solution or advice. Sitting with my own discomfort is
intense, but allows me to share in the experience of the residents. Following the
discomfort, I often experience a deep sense of understanding and honor for this
encounter” (McBee, 2008, p. 56).
I have been able to achieve some degree of authenticity, to make offerings of connection, to
sometimes succeed and sometimes fail but to continue to try no matter the outcome. My
mindfulness practice has helped me to follow the dementia care literature on joining each
resident where they are, accepting their view of reality and being with what he or she is in
this moment.
47
Learning about love
Entering into the Care Facility was an act of faith. I didn’t know what I would find there or
how I would cope. I have read both in the Buddhist and dementia care literature about
interdependence but did not expect such a direct lesson on this topic. Each week I went to
visit with each of the residents, say “Hello”, introduce myself, initiate conversation and if
this was not possible attempt a non-verbal connection, or simply sit with them. What
happened was extraordinary.
I realize now that I am going through a process of tenderizing. By opening my heart to the
residents in the Care Facility and allowing them to change me, they have taught me to slow
down, to relax and to ‘be’ rather than to ‘do’. The love and attention I give is reflected back
manyfold. They shower me with love and tenderness; warm smiles, touches, caring attention
and kind words. I had read about the need to be open to being loved by people who have
dementia (Pearce, 2007, p. 96) but I hadn’t realized what a profound effect it would have on
me.
I know it is possible that the residents do not remember me but I can see that they recognize
me. Harriet’s face lights up when see sees me and she reaches for me. Most people give me
a smile and I have more and more people who want to join me for walks.
Visit 16 When I first arrived today someone said “Oh, you always look so fresh” touching my shirt and cupping my face in her hands. I don’t know if I looked
particularly rumpled today or if people liked the flowers on my shirt but I noticed
people touching my shirt, smoothing it and straightening my collar. Betty
proceeded to unfold my cuffs and do up the buttons. I felt very cared for. Touch is
so important to me and I notice that it is to the residents as well. Their love is
palpable. I can see that these ladies who have loved and cared for their families
still want to provide the love and care. I am more than happy to be the recipient.
This shift is partly due to the considerable time I have spent on the Unit. I also followed the
guidance from the dementia care literature on connection and validation. I used a warm tone
48
of voice, good eye contact and gentle touch in my interactions with the residents. But I think
this approach was strengthened considerably by my Buddhist practices. I generated an
intention to connect with the residents before each visit. Bearing witness to my tiredness and
learning to care for myself made me more accessible to the residents as did my realization
about how my ‘trying’ and ‘desire to fix’ was getting in the way. The shift this created made
me more available to each interaction and made my presence more authentic. For me, it is
not so much developing the capacity to love these beautiful people as freeing myself from
the junk that was getting in the way.
“Love is perhaps the most important human quality you can develop as an artist of
dementia care. This quality needs to be an integral part of your being. Love is an
act of will. It is your choice to love or not to love people with dementia” (Verity
& Kuhn, 2008, p. 13).
Teaching exquisite care
Many Care Institutions across North America are making attempts to introduce a Person
Centred Care approach, but change is slow. Given the challenges for staff in these
environments (busy workloads and time pressures), Chaplains and volunteers can play a role
in supporting the Person Centred Care alternative.
Chaplains and volunteers, particularly those with an established Buddhist practice, have
much to offer, particularly if given training and support. A training program which
integrates the knowledge from the field of dementia care with Buddhist practices would
provide a strong foundation for Buddhist volunteers to enter these institutions and offer the
opportunities for connection with residents. By training Buddhist volunteers and offering
ongoing support while they do their volunteer work we could create a very rich environment
for Buddhist practitioners to deepen their understanding, about themselves, of their Buddhist
practice and of creating connection with others. At the same, it would become possible to
work toward a climate of exquisite care for people with dementia.
49
A similar non religious program could be developed along the lines of Mindfulness Based
Stress Reduction (MBSR) which teaches mindfulness without the dharma (Kabat-Zinn,
2009). By coupling this with ideas from the field of dementia care volunteers from all walks
of life could be introduced to Care Facilities. This training would also be suited to the
family and friends of those in the units.
This approach would create more people in the units to support staff. By offering more
contact for residents and activities like walking (things which staff do not have the time to
do but can feel frustrated about), some of the symptoms and side effects of dementia would
be diminished, making day to day life easier for staff. Volunteers would also be modeling
for staff ways to connect with residents. Volunteers could also act as advocates for both staff
and residents to the institutional management. Finally, these volunteers could offer staff
members support, acceptance and a loving presence. This entry into care facilities would
need to be seen as non threatening and working in partnership with staff to support them in
their work.
Eventually this training could be made available to staff members. Firstly, mindfulness
training could be offered to staff as a way to down regulate and deal with their stresses.
Research has shown the efficacy of mindfulness for healthcare professionals both to
themselves and their patients (Sharpiro et al, 2005) as well as specifically with the frail
elderly and their caregivers(McBee, 2003). This research may help to legitimize such
training in the eyes of the care institution. Elements of exquisite care can be introduced into
the training as the institution allows.
Exquisite care can be taught, just as being with dying can be taught. Buddhist practices are
excellent for developing these skills.
“The capacity to be mindful, to observe without being caught in our
experience, is both remarkable and liberating. “Mindfulness is all helpful”,
taught the Buddha” (Kornfield, 2009, p. 37).
50
Conclusion
In this discussion I have tried to encapsulate my experience of being a volunteer in a Care
Facility, working to create connection with those who have advanced dementia. I have
highlighted the moments where my Buddhist practice and study of the Buddhist and
dementia care literature has helped my ability to connect as well as my need for further
development. This has been a great learning, one that is still in progress. My Buddhist
practice has deepened my understanding considerably of both my own condition and of how
to connect with those who have dementia. From my experiences, I have come to believe that
Buddhism has much to offer anyone who wants to learn about creating connection with
those with dementia.
I also feel that more people could be involved in the care of our elders. The information is
available to teach people to flourish as volunteers in this environment. The people in our
Care Facilities are our mothers and fathers, our grandmothers and grandfathers. They are us.
In healing them we heal ourselves.
“One sees clearly only with the heart. Anything essential is invisible to the
eyes” (de Saint-Exupéry, 2000[1945]).
51
References
ACHA Alliance. (2010). Annual Quality Report: A Comprehensive Report on the Quality of
Care in America’s Nursing and Rehabilitation Facilities: American Health Care
Association and the Alliance for Quality Nursing Home Care.
Alzheimer’s Association Online. from
http://www.alz.org/alzheimers_disease_what_is_alzheimers.asp?type=more_informa
tion
Austin, J. A. (2009). Selfless insight: Zen and the meditative transformations of
consciousness. Massachusetts: Massachusetts Institute of Technology.
Buber, M. (1970). I and thou. New York: Touchstone.
Castle, N. G., & Engberg, J. (2005). Staff turnover and quality of care in nursing homes.
Medical Care, 43(6), 616-626.
Collins English Dictionary Online. (2010). Available from http://www.collinslanguage.com/
de Saint-Exupéry, A. (2000[1945]). The little prince. London: Mammoth.
Feil, N. (2002). The validation breakthrough : Simple techniques for communicating with
people with Alzheimer's-type dementia. Baltimore: Health Professionals Press
Goleman, D. (2004). Destructive emotions. How we can overcome them? A scientific
dialogue with the Dalai Lama narrated by Daniel Goleman. New York: Bantam.
Holt, N. L. (2001). Beyond technical reflection: Demonstrating the modification of teaching
behaviours using three levels of reflection. Avante, 7(2), 66-76.
Kabat-Zinn, J. (2009). Full catastrophe living: Using the wisdom of your body and mind to
face stress, pain and illness. New York: Bantam Dell.
Kaszniak, A. (2010). Empathy and compassion in Buddhism and neuroscience. Unpublished
lecture handout 17 March. Upaya Zen Centre.
Kelly, A. (2010). Lost the feel for the game: Meanings of onset and diagnosis of AIDS
dementia for significant others. Qualitative Health Research, 20(4), 531-540.
Kitwood, T. (1997). Dementia reconsidered : the person comes first. Buckingham
[England] ; Philadelphia: Open University Press.
Kitwood, T., & Bredin, K. (1992). Towards a theory of dementia care: Personhood and
well-being. Aging and Society 12, 269-287.
Kornfield, J. (2009). The wise heart: A guide to the universal teachings of Buddhist
psychology. New York: Bantam Books.
Kramer, G. (2007). Insight dialogue: The interpersonal path to freedom Boston: Shambhala.
London, J. (2009). Connecting the dots. Oakland: New Harbinger Publications.
McBee, L. (2003). Mindfulness practice with the frail elderly and their caregivers: Changing
the practitioner-patient relationship. Topics in Geriatric Rehabilitation, 19(4), 257264.
McBee, L. (2008). Mindfulness based elder care. A CAM model for frail elders and their
caregivers. New York: Springer Publishing Company.
McDonough-Means, S., Kreitzer, M., & Bell, I. (2004). Fostering a healing presence and
investigating its mediators. The Journal of Alternative and Complementary
Medicine, 10(Supplement 1), p S25-S41.
Osterman, P., & Schwartz-Barcott, D. (1996). Presence: Four ways of being there. Nursing
Forum, 31, 23-30.
Pearce, N. (2007). Inside Alzheimer’s: How to hear and honour connections with a person
who has dementia. Taylor: Forrason Press.
Roshi Glassman. (1998). Bearing witness: A Zen master’s lessons in making peace. New
York: Bell Tower.
Roshi Halifax. (2007). Being with dying. Compassionate end-of-life care training guide.
New Mexico: Prajna Mountain Publishers.
Roshi Halifax. (2010). Being with dying : Cultivating compassion and fearlessness in the
presence of death. Boston: Shambhala.
Salmon, N. (2006). The waiting place: A caregiver's narrative. Australian Occupational
Therapy Journal, 53(3), 181-187.
Salzberg, S. (2002). Loving-kindness: The revolutionary art of happiness. Boston:
Shambhala.
Schmidt, S. (2004). Mindfulness and healing intention: Concepts, practice, and research
evaluation. The Journal of Alternative and Complementary Medicine,
10(Supplement 1), S7-S14.
Senauke, A. (2010). The Bodhisattva’s embrace. Berkeley: Clear View Press.
Sharpiro, S., Astin, J., Bishop, S., & Cordova, M. (2005). Mindfulness-based stress
reduction for health care professionals: Results from a randomized trial.
International Journal of Stress Management, 12(2), 164-176.
Sharpiro, S., Carlson, L. E., Astin, J. A., & Freedman, B. (2006). Mechanisms of
mindfulness. Journal of Clinical Psychology, 62(3), 373-386.
Sparkes, A. C. (1996). The fatal flaw: A narrative of the fragile body-self. Qualitative
Inquiry, 2(4), 463-494.
Stone, R. I. W., J. M. . (2001). Who will care for us? Addressing the long-term care
workforce crisis. Retrieved from http://www.urban.org/publications/310304.html
Strauss, C. J. (2001). Talking to Alzheimers. Oakland: New Harbinger Publications.
Thanissaro Bhikkhu. (2003). Meditations: 40 Dhamma talks: Published by the author.
Verity, J., & Kuhn, D. (2008). The art of dementia care. Clifton Park, NY: Thomson
Delmar Learning.
Wall. (2008). Easier said than done: Writing an autoethnography. International Journal of
Qualitative Methods, 7(1), 38-53.
Watson, J. (2002). Intentionality and caring-healing consciousness: A practice of
transpersonal nursing. Holistic Nursing Practice, 16(4), 12-19.
Zeisel, J. (2010). I'm still here : a new philosophy of Alzheimer's care. New York: Penguin.
Zen Peacemaker Order. Retrieved 23 January, 2011, from http://www.zenpeacemakers.org
53