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

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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

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.

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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

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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.

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

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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 doctor-

patient 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

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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

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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 (McDonough-

Means, 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

25

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

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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

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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 self-

attachment.

“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 re-

perceive (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.

33

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

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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

39

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).

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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.

41

“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.

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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

43

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

44

(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

45

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 non-

judgmental 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. 123-

124). 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).

46

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

47

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.

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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

49

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.

50

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).

51

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]).

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