MUSIC, SPIRITUALITY, AND
MEMORY
CAN MUSIC BE USED AS A SPIRITUAL PRACTICE FOR PEOPLE LIVING
WITH DEMENTIA?
December 8, 2015
Dan Lunney (218701)
Sr. Dr. Mary Frohlich
S5101: Foundations and Methods for the Study of Spirituality
Disclosure statement: I work for a nonprofit residential community which is certified in
the Music and Memory Program. Neither poses a conflict of interest and are in keeping
with the organizations Code of Business Ethics and with the Code of Professional Ethics
for Chaplains through the National Association of Catholic Chaplains. Any use of
resident information is done in accordance with HIPAA. Resident names or identifying
information are not used in this paper.
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Music, Spirituality, and Memory: Can Music Be a Spiritual Practice for People
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Dan Lunney (218701)
INTRODUCTION
The primary question that is addressed in an analysis of method is “how.” The
“how” looks at the tools, techniques, approaches and sources brought to the method of
study. I use a variety of methods as I weave the different aspects of the paper together in
support of my assertion that music can be a spiritual practice for people living with
moderate to advanced dementia.1 The overarching method is an anthropological method
as I attempt to connect the needs of people with dementia with an intervention,
individualized music, which strives to reconnect them with themselves, their loved ones
and God. The primary audience for this paper is caregivers – both professional and
familial. In sections of this paper I will use the first-person not to turn the focus to me
but to be transparent when I am speaking from my experience.
The first section on The Experience of Living with Dementia (Phenomonology)
uses observation and caregiver accounts to develop some of what people with dementia
experience. The next section, The Psycho-Bio-Medical Model of Dementia, focuses on
the traditional description of dementia from a health care model which emphasizes the
individual and the pathologies of dementia. The focus turns to a critique of the traditional
narrative of dementia highlighting the work of Thomas Kitwood in the section, Moving
from the Psycho-Bio-Medical Model to a Person-Centered Model. A more in-depth
discussion of the place of humanity is the focus of the section, An Inclusive Theological
I will use dementia and Alzheimer’s interchangeably in this work. Alzheimer’s is the most prevalent
form of dementia. In addition, I use “people living with dementia” to emphasize that they are people (as
opposed to patient or victim) and they are living (as opposed to suffering) with to retain some agency and
recognize their resiliency. My focus is on people living with moderate to severe dementia.
1
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Anthropology. In this section, I rely heavily on footnotes in order to keep the section
within the scope of the paper while providing links to resources for more in-depth study.
The next section involves a survey of research literature on music and dementia, A
Critical Dialogue with the Research on the Impact of Music for People Living with
Dementia. The next section, Defining Spirituality and Spiritual Practice, provides the
working definitions of spirituality and spiritual practice that I use in this paper. The
section, Music as a Spiritual Practice, begins with some specific resources which
highlight music as a resource and goes on to describe the Music and Memory Program
which is used at my facility. The main method in this section will be the appropriative
method, as I attempt to appropriate the findings from the psycho-bio-medical research to
the realm of spirituality. In the Conclusion, I will weave the threads together to show
how music can be a spiritual practice which addresses some of the needs that people with
dementia have.
THE EXPERIENCE OF LIVING WITH DEMENTIA (PHENOMONOLOGY)
While I will focus on the psycho-bio-medical aspects of dementia in the next
section, I wanted to take more of a phenomenological focus in this section. This is
potentially dangerous territory because people with moderate to severe dementia have
diminished ability to communicate their experience, so observation and interpretation
serves as our source. I attempt to reduce the influence of my bias though using my
assessment skills developed over two decades of spiritual care ministry. I also read
extensively from a variety of different sources to assist with my assessment. I have a bias
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in favor of looking more at the abilities that people living with dementia retain rather than
to focus on the abilities which they have lost.
With people who have moderate to advanced dementia, their lived experience is
very much present-focused. People living with dementia often have a disconnection from
the past and the future. Their reality is what is happening now. Time and reality can be
very fluid for people living with dementia. Because they may experience a disconnection
from their narrative through loss of memory, some will create a narrative reality which
incorporates parts of their autobiography. The narrative reality can be quite elaborate and
creative.2 For example, one resident on some days will identify herself as a Franciscan
Sister, even using the name she had when she was in the convent decades ago before she
left the community. For her, this is an attempt to claim her identity as her connection to
her present narrative becomes more tenuous. As human beings, we have such a strong
need for meaning-making, that we will do all we can to makes sense of our experience.
Human beings have a need for connection because we are inherently social
beings. This need for connection is not lost just because a person is living with dementia.
It can be more difficulty for us to connect with people living with dementia and for them
to connect with us because of the diminishment of language ability. This just means that
we have to be more creative in our modes of communication. A profound loneliness can
“Psychologist Donald Spence defines the concept of ‘narrative reality’ as the ways in which stories and
places help link the ‘true’ world to one that a person is better able to understand, using storytelling as a
vehicle to understand the truth—you’re in a place that’s holistically normal, you’re not lost, etc.” from
Josh Planos, "The Dutch Village Where Everyone Has Dementia," The Atlantic, November 14,
2014, accessed November 21, 2015, http://www.theatlantic.com/health/archive/2014/11/the-dutch-villagewhere-everyone-has-dementia/382195/. Due to the limited focus of this paper, I will not develop the
concept of narrative reality and narrative truth further at this time.
2
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be a common experience for people living with dementia because many of their friends
and/or spouse have died or may not be part of their lives at this time. In addition, many
places of social interaction, including church communities, are not structured to welcome
the person living with dementia.3
The experience of dementia is also influenced by our culture, especially the
pervasive youth-focus in the United States society. There is also a strong emphasis on
the importance of independence and autonomy. In addition, our culture buys into the
overemphasis on rationality. Each of these cultural streams can alienate people living
with dementia. The person living with dementia can feel exiled from their community
which can reinforce the feelings of disconnection and loneliness.
The need to feel safe and secure is more acute in people living with dementia. A
person living with dementia can feel like a stranger living in a strange land. Through
creating a safe and welcoming environment, we can help the person from becoming
overwhelmed by the unfamiliarity of their environment.4 Routine can also help people
living with dementia from feeling overwhelmed.
Glenn Weaver has a very interesting essay which seeks to get at the spiritual
experience of people living with dementia. He describes why the usual spiritual practices
get more difficult as the neurological deterioration progresses,
Upsets in memory, agency, and perspectivity combined to frustrate
patients' abilities to plan and execute strategies for reading, constructing, listening
3
John Swinton, Dementia: Living in the Memories of God (Grand Rapids, Mich.: William B. Eerdmans
Pub., 2012), Chapter 4, Kindle edition.
4
In future writing I will tap into the rich tradition of hospitality.
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to, or visually following most textually based presentations. This included reading
Scripture, listening to sermons, or following the order of a worship service. 5
Table 1: Obstacles to meeting spiritual needs for people living with dementia,
Weaver's findings from interviews with caregivers6
Loss of one's spiritual life narrative (for example, memories of formative
spiritual experiences, baptism, communities of faith)
Fear of spiritually sinister forces; sense of spiritual emptiness
Diminished participation in spiritual practices, such as corporate worship,
reading Scripture, and prayer
Difficulty experiencing God's presence, comfort, and security
Experience guilt about the loss of close relationships in a community of faith
Inability to initiate acts of service to others
THE PSYCHO-BIO-MEDICAL MODEL OF DEMENTIA
The psycho-bio-medical model of dementia focuses on the pathologies of
dementia and is the predominant narrative about dementia in our society. Dementia is
not a single disease rather a syndrome which manifests differently in each person.
According to the Alzheimer’s Association, 5.2 million currently are living with
5
Glenn Weaver, "Embodied Spirituality: Experiences of Identity and Spiritual Suffering among Persons
with Alzheimer's Dementia," in From Cells to Souls, and Beyond: Changing Portraits of Human Nature,
ed. Malcolm A. Jeeves (Grand Rapids, MI: W.B. Eerdmans, 2004), Kindle edition.
6
Weaver, "Embodied Spirituality: Experiences of Identity," in From Cells to Souls.
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Alzheimer’s, by 2050, the estimate is 16 million will be living with Alzheimer’s.
Women are disproportionately impacted making up 2/3 of those living with Alzheimer’s
and 3 out of 5 of the unpaid caregivers. From 2000-2010, the prevalence of deaths from
Alzheimer’s increased by 68%. 7
In a person with dementia, the ability of the cells within the brain to communicate
with each other is hindered. The symptoms of dementia depend on the parts of the brain
which are impacted. Some common symptoms include: memory loss, diminishment of
the ability to complete activities of daily life, diminishment of the ability to
communicate, diminishment of the ability to make decisions, diminishment in alertness,
and diminishment in the ability to reason. 8
Table 2: Colling's taxonomy of passive behaviors of people with dementia9
Category
Diminution of cognition
Diminution of psychomotor activity
Diminution of emotions
Diminution of interactions with people
Diminution of interactions with the
environment
Definition
Lessening of mental processes associated
with thinking and knowing.
Decrease in the spontaneous and
purposeful performance of voluntary
motor movements.
Decrease or absence of the ability to
experience or respond to human emotions.
Lessening of behaviors indicative of or
necessary to acting upon or with another
or others.
Lessening of behaviors indicative of or
necessary to acting upon or with the
physical surroundings.
Alzheimer's Association, ed., 2014 Alzheimer’s Disease Facts and Figures (2014), accessed August 9,
2014, http://www.alz.org/documents_custom/2014_facts_figures_fact_sheet.pdf.
8
"What Is Dementia?," Alzheimer's Association, last modified 2015, accessed November 21, 2015,
http://www.alz.org/what-is-dementia.asp.
9
Kathleen Byrne Colling, "A Taxonomy of Passive Behaviors in People with Alzheimer's
Disease," Journal of Nursing Scholarship 32, no. 3 (September 2000): accessed October 17, 2015,
DOI:10.1111/j.1547-5069.2000.00239.x.
7
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In addition to the symptoms listed above, there are some common secondary
challenges which people with dementia faces which may include: depression (clinical),
agitation, acting out, and repetitive compulsive behaviors.
Because agitation can be a characteristic secondary symptom of dementia and
much of the research focuses on agitation, I will turn attention to agitation. Agitation
occurs in 48-82% of nursing home residents living with dementia.10 While this is quite a
range, it is safe to assert that a majority of people living with dementia in nursing homes
experience agitation. The most common treatments for agitation are analgesics (pain),
antidepressants (clinical depression), and antipsychotics (psychosis). Van der Ploeg, et
al. highlight three paradigms which have emerged to explain behavioral and
psychological symptoms (BPSD) in people living with dementia:
1. Learning theory asserts that BPSD are reinforced by receiving
attention from a caregiver
2. In the “unmet needs” paradigm, the agitation is an attempt to
communicate a need
3. In the “threshold stress model, the agitation is a result of the
reduction in the ability of a person with dementia to deal with
stress resulting in acting out.11
My assessment is that there are elements of all three displayed in the agitation
displayed by people living with dementia. One of the paradigms may be more prominent
10
Eva S. van der Ploeg and Daniel W. O'Connor, "Evaluation of personalised, one-to-one interaction using
Montessori-type activities as a treatment of challenging behaviours in people with dementia: the study
protocol of a crossover trial," BMC Geriatics 10, no. 3 (2010): Page 1 of 6, accessed October 17, 2015,
doi:10.1186/1471-2318-10-3.
11
van der Ploeg and O'Connor, "Evaluation of personalised, one-to-one,"Page 2 of 6.
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in a given episode or in a given person, but all three play a role. Because of the dynamic
interaction between the three, interventions must be targeted and individualized.
Agitation can be the only means of communicating for a person living with dementia or it
can be an expression of frustration at not being able to do. There is an effort reduce the
amount of psychotropic medications to address agitation because of the potential of
adverse side effects and research showing the limited effectiveness in addressing
agitation in many cases. 12
MOVING FROM THE PSYCHO-BIO-MEDICAL MODEL TO A PERSONCENTERED MODEL
Although there may be some general patterns in the course of dementia, dementia
is different in each person. The psycho-bio-medical model tends to rely on formulas
rather developing a plan of care which focus on the individual. Most definitions of
personhood exclude people living with dementia. Thomas Kitwood developed a theory
of personhood which does not exclude those living with dementia. Best practices, quality
improvement, regulations, and quality measure ratings in the care of people with
dementia are all person-centered – it has become the standard of care. Culture change
does not happen quickly but it must happen.
Person-centered care, especially as defined by Kitwood, recognizes that people
are relational and social by nature. Rather than defining personhood based on a static set
12
van der Ploeg and O'Connor, "Evaluation of personalised, one-to-one," Page 1 of 6. I want to be cautious
not to throw out the use of the medication all together because they can be very effective when used
properly. The focus is to tailor the response to the individual person and use a variety of interventions
including individualized music.
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of abilities, Kitwood’s theory of personhood allows for range of abilities and
development which can change throughout one’s life.13
Kitwood critiques the psycho-bio-medical model as a cause of worsening
symptoms of dementia through the pathologizing of dementia and neglecting the
detrimental effects of this pathologizing. The psycho-bio-medical model draws
“malignant social psychology” upon the elderly person, “whose psychological buffers are
already fragile, actual creates neurological impairment.”14 The practical theologian John
Swinton highlights two causal factors for neurological impairment described by Kitwood:
First, he wants to loosen the hold that the standard paradigm has on our
understanding of dementia and create a space for a different approach that takes
care and relationships as seriously as neurological decline, deficit, and damage.
He wants to initiate a new story which will present us with a new worldview.
Second (and this is a connected goal), he wants people to realize that they may be
implicit in the creation of the symptoms of dementia. No longer can we avoid
responsibility for dementia by blaming it all on neurology. If Kitwood is correct,
then society may well have a profound responsibility for causing the symptoms of
dementia rather than simply responding to them.15
Kitwood forms two conclusions about people living with dementia. The first is
that they are far more resourceful than we once assumed. I see this in the residents that I
have the honor of getting to know. The second is “the course of a primary degenerative
dementia is far less fixed than was previously believed; it is open to change as a result of
purely human intervention.”16
13
T. M. Kitwood, Clive Baldwin, and Andrea Capstick, Tom Kitwood on Dementia: A Reader and Critical
Commentary (Maidenhead, Berkshire: McGraw-Hill/Open University Press, 2007), Pages 230-231.
14
Kitwood, Baldwin, and Capstick, Tom Kitwood on Dementia, Page 37.
15
Swinton, Dementia: Living in the Memories, Chapter 4.
16
Kitwood, Baldwin, and Capstick, Tom Kitwood on Dementia, Page 235.
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Kayleen Justus makes an important distinction which helps in reframing our
understanding of dementia. For her the idea self is a construct based on an ideal.
Dementia is not a process of the loss of self, rather it is a process of dis-integration of the
self.17 The self is still there, it is just harder to reach by the person living with dementia
and others.
This has profound implications for caregivers, community and churches. If we
continue to use only the psycho-bio-medical lens, we are actually contributing to the
disease process. We have to move from viewing disease as a something which happens
to an individual to take seriously that dementia is also a social disease characterized by
alienation, stigmatization, and exclusion of the elderly.
AN INCLUSIVE THEOLOGICAL ANTHROPOLOGY
In the previous section, I began the discussion of the importance of a new
definition of personhood. In addition to the challenge of dementia, suffering in general
and the ecological crisis have led many theologians and religious thinkers to re-evaluate
traditional theological anthropologies. Given the scope of this paper, I can only provide a
brief survey of the robust discussion which is taking place. Central to the reassessment of
theological anthropology is the reaffirmation of Trinitarian theology which recognizes
that a central characteristic of God is relationality18. Like the assertion of Kitwood, any
17
Kayleen Marie Justus, "Music, Dementia, and the Reality of Being Yourself" (PhD diss., Florida State
University, 2014), Page 32.
18
See Swinton, Dementia: Living in the Memories, Chapter 7. “Within such an understanding the
inherently relational nature of human beings emerges from the nature and relational shape of the God in
whose image they are created, a God who is a Trinity of persons. God is a perichoretic community of love
constituted by the relationships of the three persons of the Trinity: God the Father, God the Son, and God
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theological anthropology or definition of personhood must be relational – not only with
our fellow human beings but with all of creation.19 While not ignoring the uniqueness of
human beings, much more attention needs to focus on our kinship with all creation
resulting from being created by the Creator. To affirm that we are made in the image and
likeness of God should not be used to separate us from the rest of creation rather to unite
us with creation. Swinton stresses that our capabilities are not what makes us human
persons (thinking, communicating, etc.) rather they emerge from human persons. In
other words, “These things might be considered aspects of persons, but they emerge from
persons rather than being definitive of persons.”20
I would go a step further to assert that the lived experience of people living with
dementia not only expands our definition of personhood, it also expands our
understanding of God. While being very careful not to romanticize the lived experience
the Holy Spirit; each person is inextricably interlinked in an eternal community of loving relationship.”
See also Leonardo Boff, Cry of the Earth, Cry of the Poor (Maryknoll, N.Y.: Orbis Books, 1997), loc. 675678, Kindle edition. “Christian trinitarian language, perichoresis captures the relationship of mutual
presence and interpenetration between God and the universe or between the three Divine Persons among
themselves and with all creation.” See also Denis Edwards, Ecology at the Heart of Faith (Maryknoll,
N.Y.: Orbis Books, 2006), loc. 1969-1971, Kindle edition. “The diversity of creation, and the diversity of
life on Earth, can be seen as sacramental, as expressing and representing the abundance and dynamism of
the divine communion.”
19
See Warren S. Brown, "Cognitive Contributions to Soul," in Whatever Happened to the Soul?: Scientific
and Theological Portraits of Human Nature, ed. Warren S. Brown, Nancey C. Murphy, and H. Newton
Malony (Minneapolis: Fortress Press, 1998), Kindle edition. “it is experiences of relatedness to others, to
the self, and most particularly to God that endow a person with the attributes that have been attached to the
concept of ‘soul’”. See also Sallie McFague, The Body of God: An Ecological Theology (Minneapolis:
Fortress Press, 1993), Kindle edition. “We are united to one another through complex networks of
interrelationship and interdependence, so that when one species overreaches its habitat, encroaching on that
of others, sucking the available resources out of others' space, diminishment and death must occur at some
point.” See also Elizabeth A. Johnson, Ask the Beasts: Darwin and the God of Love (New York:
Bloomsbury Continuum, 2014), Kindle edition. “Hellenistic dualism, patriarchal androcentrism, Cartesian
dualism: in themselves these are philosophical systems. But when their patterns of thought were brought to
bear on theology, they led to religious reflection that by and large devalued the earth as a decaying present
reality over against heaven, an eternal spiritual reality.”
20
Swinton, Dementia: Living in the Memories, Chapter 7.
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of people living with dementia, they are also made in the image and likeness of God.
Swinton illustrates this in this powerful quote:
The experience of dementia brings to the fore a broader amnesia that has
befallen the world which has caused it to forget where and what it is: creation.
When the world forgets its Creator, we begin to think we are the creators; we
begin to believe that we are self-creating beings whose task is to shape the world
into our own image. In such a worldview, our capacity to do things becomes
primary. Unlike God, we demand that people have gifts instead of recognizing
that in fact they are gifts. 21
This reframing of personhood has implications for us to welcome and recognize
people living with dementia into the human family. Roman 8:38-39 reminds us that
nothing can separate us from the love of God. If we believe that, we need to live it
inclusively.
A CRITICAL DIALOGUE WITH THE RESEARCH ON THE IMPACT OF
MUSIC FOR PEOPLE LIVING WITH DEMENTIA
There is much research in the literature about the impact of music on people in
general and on people living with dementia in particular. While I read through all the
studies included in the bibliography, I have focused on the studies which are most aligned
with the music intervention we propose, namely personalized playlists of recorded music
which is contained on an iPod shuffle and listened through headphones. 22
21
Swinton, Dementia: Living in the Memories, Chapter 7.
In choosing what to include and exclude, the criteria was not whether the study supports my thesis or not,
rather the way they used the musical intervention. Studies which focused on the intervention of a music
therapist were not as helpful because they utilized a professional to implement the musical intervention.
Music and Memory is not a musical intervention administered by a music therapist.
22
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In a general study of the characteristics of music-evoked autobiographically
memories (MEAMs), Janata et al found that music had the ability to connect people to
their memories of events and places.23 While the study did not include people with
neurological impairment, the frequency of the MEAMs among those in the study is
promising, especially when connected with the research showing that the musical
processing portion of the brain is intact even in someone with advanced dementia.24 The
study on MEAMs showed some correlation between the familiarity of the song and
MEAMs.
Spiro helps to provide a framework for understanding the literature on the
research of music and dementia. Spiro describes three main sets of behaviors which are
positively influenced by music: “memory (particularly autobiographic memory) and
language retention; mood and depression; and aggression and agitation.” Spiro goes on
to poses two important methodological question, “(1) Which musical characteristics
enable the observed in dementia? and (2) What aspects of dementia that these are acting
on?”25 She brings to light another finding of the studies, that music personalized for the
person has better results than generic music offerings. 26 Some studies cited suggest that a
23
Petra Janata, Stefan T. Tomic, and Sonja K. Rakowski, "Characterisation of Music-evoked
Autobiographical Memories," Memory 15, no. 8 (2007): accessed October 17, 2015,
doi:10.1080/096582.10701734539.
24
Sanders, Laura. "Alzheimer's Spares Music Memories: Disease May Not Harm Brain Areas Linked to
Song Familiarity." Science News, July 11, 2015, 11. Adobe PDF
25
N. Spiro, "Music and Dementia: Observing Effects and Searching for Underlying Theories," Aging &
Mental Health 14, no. 8 (November 2010): Page 891, accessed October 18, 2015,
doi:10.1080/13607863.2010.519328.
26
Spiro, "Music and Dementia: Observing," Page 895.
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person listening to music has the same physiological reaction as someone engaged in
social interaction.27
Baird et al do a survey of studies and point out that studies look for two different
types of memories – explicit and implicit. Explicit memory has two further types –
episodic and semantic. The explicit episodic memory involves memories of the context
of the music (MEAMs are an example of explicit episodic memory). Explicit semantic
memory has to do with the recall of the name or artist of the music without any emotional
memory attached to it. Implicit music memory has to do with the memory of the
mechanics of playing a musical instrument. 28 For the purposes of this paper, explicit
episodic music memory bears the most fruit.
While the research on the best means of delivering the music (live vs recorded) is
mixed, the research favors personalized, individual delivery of the music. Two
limitations of the studies were highlighted: most had very limited numbers of participants
and many relied on observation which can lack objectivity. 29
In Table 3, I connect the passive characteristics of dementia described by Collings
to the findings of the influence of music from the research. While music is not an
effective for all people living with dementia and in all circumstances, the fact that it is
helpful for some people in some circumstances favors its use as one possible intervention.
27
Spiro, "Music and Dementia: Observing," Page 895
Amee Baird and Severine Samson, "Memory for Music in Alzheimer’s Disease:
Unforgettable?," Neuropsychological Review 19 (February 13, 2009):Page 86, accessed October 17, 2015,
doi:10.1007/s11065-009-9085-2.
29
Baird and Samson, "Memory for Music in Alzheimer’s," Page 98.
28
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Since the focus of the research was on the psycho-social effects of music on
people living with dementia, it essential to reappropriate the findings in terms of
spirituality. Before the reappropriation, I will provide the definitions for spirituality and
spiritual practice which I will use for this paper.
Table 3: Mapping Colling’s taxonomy to musical interventions
Category (Colling)
Intervention (from the research above)
Diminution of cognition
Music has been shown to increase
cognitive abilities in people living with
dementia.
People with dementia will often make
bodily movements when listening to
music.
Music is able to elicit emotions in people
living with dementia.
Music has been shown to prompt
autobiographical memories which can
lead to a sense of connection.
Music awakens the senses and fosters
connection with one’s environment.
Diminution of psychomotor activity
Diminution of emotions
Diminution of interactions with people
Diminution of interactions with the
environment
DEFINING SPIRITUALITY AND SPIRITUAL PRACTICE
As members of the human family, people living with dementia have spiritual
needs. For this paper, I will use a definition of spirituality put forward by Carla Mae
Streeter, “I suggest that the core of spirituality is the ache of human longing. We long for
intimacy. We long to be connected with what matters…spirituality is real presence. It is
being real, or fully human, and being really present—to myself, others, nature, the
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cosmos, the Divine.”30 This parallels the needs of people living with dementia addressed
by Kitwood – the five great needs which grow out of need for love – attachment,
inclusion, occupation, identity, and comfort.31 As highlighted by Weaver above (Table
1), these needs do not go away when a person is living with dementia, they just demand
more creativity and assistance from others to meet. To the extent that we (collectively
and individually) fail to assist a person in meeting these needs, we contribute to their
alienation and potentially to their neurological decline. This reality gives new urgency to
Matthew 25. The communal nature of spirituality is not a nicety for people living with
dementia, it is essential as their abilities diminish.
Figure 1: An illustration of Kitwood's five great needs centered on the need for love.
Spiritual practices are as important to a person who is facing diminishment
because of dementia as they are to anyone else. The difference is that the person living
with dementia may need more assistance in engaging in a spiritual practice. This is not
30
Carla Mae Streeter, Foundations of Spirituality: The Human and the Holy: a Systematic
Approach (Collegeville, Minn.: Liturgical Press, 2012), Introduction, Kindle edition.
31
Kitwood, "The Experience of Dementia," Page 19 (Figure 1)
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the case just for those with dementia, a majority of our residents share with me that they
have not been able to attend mass for years before coming to our facility because they do
not have the ability get to the church. According to Craig Dykstra:
Christian practices are not activities we do to make something spiritual
happen in our lives. Nor are they duties we undertake to be obedient to God.
Rather, they are patterns of communal action that create openings in our lives
where the grace, mercy, and presence of God may be made known to us. They are
places where the power of God is experienced. In the end, these are not ultimately
our practices but forms of participation in the practice of God.32
Based on my experience, I have developed seven characteristics of spiritual
practices:
1. Leads to/reflects integration of the person (identity, memory,
narrative)
2. Leads to/reflects connection with others (relational, communal,
common narrative)
3. Leads to/reflects connection with one’s environment (heighten
sensual/intuitive awareness)
4. Leads to/reflects one’s connection to God, the divine, the sacred
5. Often uses ordinary materials, stimuli (bread, water, music,
images)
6. Is repeated on a regular basis (habit of the heart)
7. Has a transcendent quality through symbols, sounds, visuals,
smells, taste which are accessible through time.
Spiritual practices have a dynamic quality and that is why I included “leads to”
which includes agency and “reflects” which recognized that there is an element of being
32
Craig Dykstra, "What Are Christian Practices?," Practicing Our Faith, last modified 2011, accessed
October 29, 2015, http://www.practicingourfaith.org/what-are-christian-practices.
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led. Echoing the quote from Dykstra, “to participate” has both an active and passive
quality to it.
MUSIC AS A SPIRITUAL PRACTICE
Music is central to many spiritual practices. Don and Emily Saliers describe the
spiritual nature of music whether it is spiritual or sacred music:
Coming alive to music is coming alive to deep memory, as music recreates
our sense of the world and who we are in it, right in the midst of the terrors and
beauties, the pain and deep pleasures of human existence. Coming alive to music,
we are led on a double journey: into the mystery of God and into the depths of our
humanity.”33
To answer the question posed in this paper: can music be a spiritual practice for
people living with dementia? The answer is yes, it has the potential to be. The needs
highlighted by Kitwood in Figure 1 and Weaver in Table 1 are spiritual needs. We have
a need to be loved. Attachment, inclusion, identity, occupation, and comfort are all
components of feeling loved. We need to feel connected to others, ourselves, God and
have a sense of purpose. Music will not magically address all the challenges facing
people living with dementia but can be part of the healing and integration. Music can
bring one back to one’s self which can fulfill, at least in part, the five needs. According
to Oliver Sacks:
Music is part of being human, and there is no human culture in which it is
not highly developed and esteemed. Its very ubiquity may cause it to be trivialized
in daily life: we switch on a radio, switch it off, hum a tune, tap our feet, find the
33
Don E. Saliers and Emily Saliers, A Song to Sing, a Life to Live: Reflections on Music as Spiritual
Practice (San Francisco: Jossey-Bass, 2005),Page 1.
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words of an old song going through our minds, and think nothing of it. But to
those who are lost in dementia, the situation is different. Music is no luxury to
them, but a necessity, and can have a power beyond anything else to restore them
to themselves, and to others, at least for a while.34
Music is also more accessible to people living with dementia because they do not
have the stress of having to make sense of it. Reducing agitation can lead the person with
dementia in experiencing comfort. No spiritual practice will lead to a profound spiritual
experience every time – music as a spiritual practice is no different.
Music and Memory is the program that we are initiating at our facility. 35 More
than 900 nursing facilities in the United States are Music and Memory certified. There is
much research on the benefits of music for improving memory, lessening agitation, and
reducing the use of psychotropic medications as described above in the section A Critical
Dialogue with the Research on the Impact of Music for People Living with Dementia.
The survey of the research literature included above highlights the research affirming the
psychological and biological benefits of music. Because the music list for the iPod is
developed in conjunction with the resident to the level that they are able and the family, it
is personalized to the person. Before I put the headphones on the resident, I let them
know that the music is chosen specifically for them. The residents will often respond
with a smile or a “thank you”. I also ask them if they would like to listen to music to
provide them with some agency. Sometime residents will say they do not want to listen
34
Oliver Sacks, Musicophilia: Tales of Music and the Brain (New York: Alfred A. Knopf, 2007), Page
348, Kindle edition.
35
http://www.musicandmemory.org
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to music, which I respect. The practice is communal because it involves a person
providing the iPod and headphones to the resident and the act of listening to music is a
communal event in itself because the music was written by a person and performed by a
person or group. Because many people with moderate to advanced dementia have trouble
differentiating sounds for their environment, the headphones can help to block out
distracting sounds. The residents usually engage in some type of bodily movement when
listening to the music – from tapping their foot – to conducting the orchestra. For many
residents, the music elicits a range of emotions from smiles to tears. Some residents sing
along with familiar songs. By providing the music at a particular time, it can become part
of their daily routine and become a helpful habit to which they can look forward. The
residents often become more engaged, animated, and interactive when listening to their
music and after. Listening to music can be less stressful than other activities because it
does not have to be understood (a cognitive process) just experienced.
One resident started crying soon after I placed the headphones on. The nurse
came to me to let me know what was happening. I returned to the resident and asked her
if she was okay, she said, “the music sounds like home.” She was having a music-evoked
autobiographical memory (MEAM).
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Table 4: Overview mapping of needs to practice36
Colling
Diminution of
cognition
Diminution of
interaction with
environment
Diminution of
cognition
Diminution of
emotions
Weaver Spiritual
Needs
Loss of one's spiritual
life narrative (for
example, memories of
formative spiritual
experiences, baptism,
communities of faith)
Fear of spiritually
sinister forces; sense
of spiritual
emptiness 37
Diminished
participation in
spiritual practices,
such as corporate
worship, reading
Scripture, and prayer
Kitwood
Needs
Identity,
Attachment,
Inclusion
Music and
Memory
Connects to
autobiographical
memories
Comfort,
Attachment
Lessens feelings Leads to connection
of dis-integration to one’s
environment
(sensual/intuitive)
Does not require Uses ordinary
stressful
material/stimili
cognitive effort
Difficulty
experiencing God's
presence, comfort, and
security
Experienced guilt
about the loss of close
relationships in a
community of faith
Attachment,
Inclusion,
Comfort
Inability to initiate
acts of service to
others
Occupation,
Identity
Attachment,
Inclusion
Spiritual Practice
Leads to/reflects
integration of person
Diminution of
psychomotor
skills
Diminution of
interaction with
people
Diminution of
psychomotor
skills
36
Attachment,
Inclusion
Re-connects to
self so
spirituality can
be a resource
Fosters sense of
community
through the
practice and
through
autobiographical
memories
Engaged in
activity
Leads to/reflections
connection to God
Leads to/reflections
connection to
community
Habit of the heart
Although there is not an exact fit between the various models of needs and practices, there are enough
parallels to justify the mapping. The only one that did not fit in Colling’s taxonomy was the difficult y in
experiencing God. Agitation is a set of behaviors which result from a need not being met.
37
Weaver discusses this in part as a disconnection from the tangible environment which results in distrust
and attributing things that happen to sinister forces. For example, either loved ones or unknown forces are
blamed for lost items.
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CONCLUSION
Individualized music has the potential of being an important spiritual practice for
people living with dementia which is mapped out in Table 4: Overview mapping of needs
to practice. This is an especially important intervention because of the disconnection and
dis-integration which result from the neurological diminishment and social malignancy
which people living with dementia face. The impact of dementia is increased through
isolation and expecting those who experience neurological diminishment to function in a
society that is structured in ways that exacerbate the challenges that people living with
dementia face. Music can help to lead to integration and connection by evoking
autobiographical memories. Music is more accessible than other modes of intervention
because it does not tax the diminished emotional and cognitive abilities which are
characteristic of people living with dementia. Our theological anthropology and
definition of personhood need to be more inclusive so as not exclude those who are living
with dementia. We are reminded that relationality is essential to personhood. Our
definition of dementia needs to move beyond the psycho-bio-medical model which views
dementia only as neurological impairment effecting individuals to see that it is also a
communal disease in which we forget, exclude, and isolate those who are living with
dementia. In our youth-focused culture we pathologize the ageing process and are part of
the exacerbation of neurological diminishment that many elderly live with. Music has so
much potential for improving the lives of people living with dementia without major
expenses and with very little downside. Music will not work a spiritual practice for all
people, but that should not be a deterrent for using it as a resources. Much of the focus
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has been on the psychological and physical benefits of music as a resource for people
living with dementia but it also has spiritual benefits which parallel and overlap with the
psychological benefits. My studies have renewed and redoubled my commitment to
nurture the residents I have the pleasure of serving in part through the use of music
knowing that I am nurtured through my interaction with the residents.
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