Trauma at the End of Life…
RUNNING HEADER: Trauma at the End of Life…
Trauma at the End of Life: Somatic Experiencing and Other Touch Based
Treatments for Neurocognitive Disorders
By: Mike Changaris, Psy.D.
ABSTRACT
The experience of being given a diagnosis of Altzhiemer’s Disease or another
neurodegenerative disorder can be shocking for both family members and the individual
facing the cognitive changes. As neurodegenerative disorders progress, behavioral
difficulties often arise that strain even the most resilient family system (Zarit, Orr, &
Zarit, 1985). Many studies have shown touch therapies reduce cortisol levels, increase
dopamine, serotonin, and oxytocin, while also bringing the emotion regulation centers of
the medial prefrontal cortex online. High levels of cortisol, the stress hormone, are related
to symptoms of depression, increased risk of apoptosis (programmed cell death) and
anxiety (Kloet, Joëls, & Holsboer, 2005; Weaver, Grant, & Meaney, 2002; Weaver,
2007). This paper explores the symptoms of five major neurodegenerative disorders, the
psychological, emotional and interpersonal impacts of a diagnosis of a neurodegenerative
disorder addressing means by which therapists can develop touch-based interventions to
de-escalate aggression, reduce anxiety, increase social support, and support their client to
find meaning in the present moment.
2
Trauma at the End of Life: Somatic Experiencing and Other Touch-Based
Treatments for Neurocognitive Disorders
3
She grabbed the therapist’s hand and said, “I am angry. Someone hurt me. I can’t
remember who. I am scared. What if they do it again and I can’t remember who it is and I
get really hurt? Has this ever happened to you? It is not fair. I worked hard all my life and
now I am angry and can’t remember who I am mad at!” She had forgotten the event and
yet her body remembered. The neurons in the hippocampus had not allowed for the
formation of long-term memory but she knew she was angry; she could feel it. This is
often what it is like living with forgetfulness, or what is more commonly known as
Alzheimer’s disorder. The events from the recent past are lost yet the body still holds the
feelings.
A stress response requires nearly 100 minutes to be metabolized by the body.
During that time the physical sensations of the emotions are still present. Individuals with
forgetfulness try to make sense of decontextualized emotion and in the process can
become afraid, feel lost and angry, and act out the feelings. Through contact presence
therapists, families and care providers can help offer tools to soothe feelings, create
safety and contextualize their experience. High levels of stress reaction could exacerbate
the pathophysiology of neurodegenerative disorders (Sapolsky, R., Personal
communication, November 10th, 2009)
The experience of being given a diagnosis of AD or another neurodegenerative
disorder can be shocking for both family members and the individual facing the cognitive
changes. Common reactions include, “Why is this happening to me?” “I am going to lose
my mind,” “I am worthless, just a burden to my family.” As neurodegenerative disorders
progress, behavioral difficulties often arise that strain even the most resilient family
system (Zarit, Orr, & Zarit, 1985). This paper examines the psychological, emotional and
4
interpersonal impacts of a diagnosis of a neurodegenerative disorder and address means
by which therapists can develop touch-based interventions to de-escalate aggression,
reduce anxiety, increase social support, and find meaning in the present moment.
The Experiencing Self and the Narrative Self
Recent research into happiness has shown that humans have at least two major
categories of happiness. These two categories sometimes overlap but often are quite
divergent (D. Kahneman. Personal Communication, March 2010). These two broad
classes are happiness for the experiential self and happiness for the narrative self. The
experiential self is in the moment. It is a direct evocation of interacting with the flow of
current events. The narrative self is the story of one’s life. The narrative self typically
comprises a few key moments of major life change and the rest of the memories are
relegated to the great blackness. The narrative self seeks happiness through the ideas of
success, conforming to social expectation and the imagination of how an event will play
out in the larger plot of one’s life. The experiential self seeks moments that are enjoyable
as they are lived. The neurocognitive changes in several neurodegenerative disorders
push the individual away from the ability to seek narrative happiness into the raw ability
to have experiential happiness.
In a case reported in the book Geriatric Neuropsychiatry by Attix, and Welsh-
Bohmer (2006) an individual who normally had a sunny disposition even in his cognitive
changes became agitated, began pacing and displayed symptoms of anxiety. The staff
were worried. They began considering the use of medication to help him manage anxiety.
Eventually, a staff member talked to the individual. At that time the client was able to
5
convey that his feet hurt. Reducing the pain this individual felt on a moment-by-moment
basis reduced his agitation, pacing and anxiety (Attix, & Welsh-Bohmer, 2006). This is a
classic example of the disruption that can happen when the experiencing self and its
happiness are not attended to.
Procedural memory and the experiencing self are intact in a wide array of
neurodegenerative disorders. Mice who have their hippocampus genetically impaired
when dropped into a water maze will not remember the solution to the maze the first 10
times exposed (S. Tonegawa, personal communication, June 12th 2003). Normal controls
will remember the maze quickly. Mice with hippocampal damage will remember the
solution to the maze like normal controls if given enough trials. Researchers found that
emotions lingered in individuals with dense amnesia long after the ability to remember
the event that caused the emotions (Feinsteina, Duffa, & Tranela, 2010). When showed
an emotionally rich movie clip, hours later reported emotions that matched those in the
movie. However, they could not remember a single scene of the movie. People with
forgetfulness will remember felt experiences of interactions with people, combined with
the expectancies they built over a lifetime of relationship.
The Autonomic Nervous System and Touch Treatments
In many animals, including humans, touch plays a major role in affect regulation.
In early childhood and infancy touch is the main mode of communication and is the
central tool care providers have to soothe and comfort the infant. Through these
interactions the brain areas responsible for affect regulation grow and develop. Even in
adulthood, touch remains an excellent means to soothe stress. Many studies have shown
6
touch therapies reduce cortisol levels. These same studies have found that touch increases
dopamine, serotonin, oxytocin and norepinephren, while also bringing the emotion
regulation centers of the medial prefrontal cortex online. High levels of cortisol, the stress
hormone, are related to symptoms of depression, increased risk of apoptosis
(programmed cell death and a key factor in the pathogenesis of neurodegenerative
disorders) and anxiety (Kloet, Joëls, & Holsboer, 2005; Weaver, 2007; Weaver, Grant, &
Meaney, 2002). In Cushing’s syndrome a disorder in-which damage to the hippocampus
is seen due to high levels of cortisol secretion, the hippocampal tissue loss can be reduced
by a re-regulation of cortisol production (Starkmana, Giordanib, Gebarskic, Berentb,
Schorke, & Schteingartd, 1999). Understanding the stress response could help the
clinician create touch-based interventions that effectively reduce agitation and anxiety
and increase the felt experience of being in relationship with others.
In the traditional model of the autonomic nervous system there are two branches,
the sympathetic and the parasympathetic (Blumenfeld, 2002). The stress response is how
the body mobilizes to protect itself when under threat. The sympathetic branch
(fight/flight) stimulates the gut to stop digestion, the pupils to dilate, the breath rate to
increase, and blood flow to increase to the limbs. The body is maintained by balance
between the activation of the sympathetic nervous system and the parasympathetic
nervous system. The parasympathetic branch allows the body to rest, rebuild structures,
and digest food. When the parasympathetic system is engaged, pupils constrict, breath
slows, muscle tone relaxes, and gut motility begins again.
According to Porges, (1995) an examination of the parasympathetic nervous
system from an evolutionary perspective reveals that it breaks into two branches: A
7
myelinated fast acting newer system mediates social engagement (Venteral Vagal
Complex-VVC) and an evolutionarily older unmyeolinated slower acted parasympathetic
system meditates the evolutionarily older freezing defensive response (Dorsal Motor
Nucleus of cranial nerve ten-DMNX). According to this model when the individual
experiences a low level threat the newer parasympathetic branch mediating social
engagement disengages and the sympathetic branch activates. After the threat is reduced
the sympathetic tone is reduced and the social engagement system re-engages. When
there is significant threat the social engagement system disengages, the sympathetic
branch engages and as the individual exceeds their ability to tolerate the stress level, the
older unmyeolinated freeze response engages, shutting down the system. Being able to
read where in these phases of autonomic functioning the individual is can help the
clinician choose interventions to meet the needs of the situation more effectively
(Foundation for Human Enrichment, 2007).
The SE Model of Touch Treatment
According to the SE model the process of threat--orienting, arousal, defensive
response--follows a reliable pattern that if interrupted can lead to the creation of
symptoms of trauma (Foundation for Human Enrichment, 2007). In this model anxiety,
anger, aggression and freezing are all natural attempts at re-establishing health in the
nervous system. The clinician providing therapeutic interventions works with these
defensive responses to help them complete their natural patterns (Levine, & Frederick,
1997). The full enumeration of these techniques is beyond the scope of this paper.
However, in short three things can be very helpful.
8
First, if an elder has a stressful encounter, helping them soothe by evoking a
relaxation response can be quite helpful. The care providers and family can be taught to
use multiple soothing techniques. Having one positive emotion following a stressful
event speeds the reduction of the stress response significantly (Fredrickson, Mancuso,
Branigan, & Tugade, 2000; Lai, et al., 2005). Positive emotions can be evoked in the
experiencing self through vision, smell, touch, sound, taste and social engagement
(Linehan, 1993; Foundation for Human Enrichment, 2007). Social engagement can
include positive safe social contact, mirroring of emotions, decoding of feelings,
validation, soothing touch, and eye contact. The second supporting defensive responses
can facilitate return to rest. The clinician can support the impulses behind these feelings
(i.e., running away or fighting back) by providing a containing presence while the
emotion is present, asking the individual to notice the somatic marker of the impulse and
to imagine the completion of the defensive response (e.g., running away or fighting back)
(Foundation for Human Enrichment, 2007). Fight-flight activation could also be triggered
by a moment of disorientation from fluctuation in awareness, memory or impulsiveness.
Third, helping the elder orient to the felt experience or the somatic markers of the feeling
and then move their attention to safety in the current environment can support decoupling
or desensitizing the fight/flight or freeze response from the environmental triggers.
Touch Treatment with Elders
Touch can be used in many aspects of therapy with elders. The three key ways
identified in this paper are: to create the felt experience of connection, meaning and
closeness; to support reduction of behaviors that interfere with maintaining the elder in
9
their current level of care; and to reduce emotional discomfort, agitation, depression and
anxiety. Touch can be a central way that people express intimacy. While different
cultures have widely variable norms for the use of physical contact, it is often a way to
communicate emotions. Love, anger, sadness, fear and jealousy are all emotions that are
readily communicated and decoded through physical touch (Hertenstein, Holmes,
McCullough, & Keltner, 2009). When words fail an individual with frontal-temporal
dementia semantic type or in the later stages of AD, the simple holding of a hand can
create the sense of closeness without the need for verbal exchange. Regular supportive
touch has been shown to increase how well spouses view each other, oxytocin secretion
and reduce stress hormone production. Teaching family members to connect to their
loved one through touch could reduce agitation, increase the feelings of connection and
reduce the experience of feeling alone.
High levels of stress hormone secretion are associated with behavioral difficulties.
Touch reduces stress hormone secretion and increases dopamine, norepinephrine, and
serotonin. Several studies have shown that touch therapy reduces agitation, wandering,
and aggression. Staff, family members, friends and other loved ones can use touch as a
tool to help their loved one to reduce agitation (Woods, Craven, & Whitney, 2005;
Woods & Dimond, 2002; Kima, & Buschmann. 1999). The therapist can teach family,
primary care providers, and friends a touch-based tool and then teach these individuals to
be able to teach others the tool. Teaching the tool includes recognizing the “signs of
agitation” in elders. It is important to teach the care providers to recognize if the
individual they are supporting is in a low, medium or high level of agitation as well as if
their main tendency is fight or flight (anger or fear). Different tools will be more effective
10
at different levels of agitation and different tools will be more effective with fight
responses than with flight responses.
It is important to note that the individuals providing the interventions should
regulate themselves, using an affect regulation tool such as mindfulness, imagery,
progressive muscle relaxation, etc., prior to providing the intervention. Touch is an
excellent communicator of emotions, and the care providers will be more effective if they
regulate their emotional state prior to providing contact (Hertenstein, Holmes,
McCullough, & Keltner, 2009).
To provide effective touch-based interventions, it is important to have a good
assessment of current functioning. The first step in this process is to obtain
neuropsychological evaluation. In later stages of the disease process this may not be
relevant, as it could not offer any new information for treatment. The second step is to
identify patient/caregiver goals and current coping strategies. It is important to note that
some challenges simply need to be accepted, some need be adapted to, and some
corrected. Third, assess motivation and beliefs about healing/health. This can give the
clinician insight into how to create and teach effective touch-based interventions. The
fourth is to assess the level of insight the client displays about the cognitive changes.
Many neurodegenerative disorders impact an individual’s ability to self-reflect
(Blumenfeld, 2002; Attix & Welsh-Bohmer). One’s description of treatments and types
of treatments can be affected significantly by the client’s level of insight about their
functioning. Finally, it is important to assess both the strengths and challenges an elder
has personally, in their social context and environment.
11
Touch can be used as a tool for multiple aspects of treatment, including: a) as an
adjunct treatment for mood disorders, b) to reduce cortisol secretion and behavioral
disruptions (Field, Hernandez-Reif, Diego, Schanberg, & Kuhn, 2005; Woods, Craven, &
Whitney,2005; Woods, & Dimond,2002), c) to reduce anxiety, d) to reduce aggression, e)
to support de-escalation if the individual becomes agitated, f) for pain reduction
(Hernandez-Reif, Field, Krasnegor, & Theakston, 2001), g) to increase social support, h)
to increase meaning and emotional communication (Hertenstein, Holmes, McCullough,
& Keltner, 2009), and i) increase sleep (Ferber, Laudon, Kuint, Weller, & Zisapel, 2002).
Massage therapy has been shown to reduce symptoms of depression as well as lower
cortisol and increase serotonin and dopamine (Field, Hernandez-Reif, Diego, Schanberg,
& Kuhn, 2005; Field et. al., 1997). Touch-based treatments have been shown to reduce
pain and re-regulate the sleep cycle. Although, this liturature often has multiple
methodological concerns and not all studies have found positive results, in elders
multiple studies have shown that touch therapy reduces agitation, aggression, wandering
behavior, and pacing (Kima, & Buschmann. 1999; Hawranik, Johnston, & Deatrich,
2008; Woods, Craven, & Whitney, 2005; Woods & Dimond, 2002). Touch in family
systems has been shown to increase self-reported quality of relationships and positive
interactions (Matthiesen, Ransjo-Arvidson, Nissen, & Uvnas-Moberg, 2001). These
studies have not been duplicated in elders but the increase in positive relationships likely
would affect this population as well. Touch therapies enhance oxytocin levels, which
mediate attachment and emotional bonding (Matthiesen, Ransjo-Arvidson, Nissen, &
Uvnas-Moberg, 2001).
12
Touch Techniques
Touch techniques can fall into several categories: self-regulation techniques, co-
regulation techniques, and de-escalation techniques. Self-regulation techniques teach an
individual to use touch to sooth anxiety or agitation. These techniques can include self-
touch (e.g., self-massage, tapping, pushing feet into ground, and self-squeezing), contact
with an animal (e.g., house pet, health advocate animal, therapy animal), or seeking
contact with care provider (e.g., hand holding, asking for contact on an area that would
feel reassuring, pressure on outside of shoulders to create containment). Co-regulation
techniques are techniques that a therapist, family members or care providers can use to
provide containment, desensitization to triggers and containment for dysregulated affect
(e.g., providing listening, containing, or supportive touch; using touch to evoke the
relaxation response; supporting the prefrontal emotional regulation areas to come online
through orienting the individual to the internal sensations and the outer world, with touch
used as a stabilizing anchor). Schore (2003) postulates that co-regulation requires that the
clinician can in a contained manor, mirror on a physiological level the clients affective
state. He describes this as being with a self-regulating other. De-escalation techniques
can be used to reduce agitation and anxiety and increase positive mood (e.g., supportive
touch on back, hand holding, asking to squeeze the care provider’s hand, mirroring
movements, allowing the person to take your arm and lead you).
Cultural Impacts: Ableism and Neurocognitive Changes
The disability rights movement has categorized several core belief structures
people hold about disability. These belief models have implications for help-seeking
13
behavior, prognosis and ability to maintain social support systems. The first of these
models and the oldest is the religious/moral model of disability. This model views
disability as a moral failing. People who have this belief will often explain disability as
the effects of poor choices/moral failing. The second is the medical model, which views
disability as an illness or deformity to be fixed (Marks, 1997; Orto, & Power, 2007).
Much current theory of neurodegenerative disorders uses this model. Third is the social
construct or disability rights model. This model views the differences in function as a
reality but also recognizes that many difficulties an individual faces are due to the
inflexibility of social systems and biases held by those who are currently
able-bodied/minded.
Major Neurodegenerative Disorders
There are many types of neurodegenerative disorders; this paper will explore four
major classes of disorders (Attix, & Welsh-Bohmer, 2006). These are memory-based
disorders classified as Alzheimer’s dementia, movement-based disorders including
Parkinsonian dementia and Lewy body dementia, the frontal-temporal disorders including
Picks disease, primary progressive semantic dementia, and vascular dementias.
Understanding the unique presentations of each of these could help the clinician better
support their clients.
Alzheimer’s Dementia (AD)
Diagnostic factors and neurocognitive changes. The primary presenting
problem for individuals who meet the diagnostic criteria for AD is poor memory and
14
forgetfulness (Blumenfeld, 2002). The middle stages are characterized by loss of ability
to conceptualize, reduction of coherent expressive speech, reduction of language
comprehension and praxis (motor planning) (Attix, & Welsh-Bohmer, 2006). In late
stages individuals with AD often display behavioral difficulties, agitation, delusions, and
hallucinations.
Although the gold standard for diagnosis is post-mortem autopsy of brain tissue,
in studies neuropsychological assessment has identified AD correctly in 85% of cases
(Attix, & Welsh-Bohmer, 2006). Other factors that are highly associated with AD are loss
of executive functioning and fluid reasoning capabilities. Loss of executive functioning is
correlates highly with behavioral disruptions and loss of Activities of Daily Living
(ADLs). Reduction in fluid reasoning ability (the ability to solve problems) is most
correlated with reduction in more complex life skills. The loss of fluid reasoning was
most predictive of the decline in levels of functioning. Changes in cognitive functioning
were predicted best by changes in verbal skills. Functional deterioration mirrors physical
loss of nerve paths between the hippocampus and the entorrinal cortex. By late stages the
hippocampus is isolated from the rest of the brain.
Often depression may precede the onset of AD (Attix, & Welsh-Bohmer, 2006).
Depression can, however, occur throughout the disease. High levels of cortisol has been
associated with depression (McEwen, 2003; McEwen, & Lasley, 2002). Depression is an
important differential diagnosis because in older adults depression can mimic dementia
(e.g., cognitive slowing, lack of initiation and poor memory). Depression has been noted
to lead to loss of hippocampal tissue (also affected by AD). Diagnosing and treating
15
depression is important because it can also exacerbate symptoms of dementia (Attix, &
Welsh-Bohmer, 2006).
Psychological reaction to the diagnosis and cognitive changes. Individuals who
experience these cognitive changes may have a difficult time admitting to themselves that
changes have occurred. They tend to attempt many ways to hide their cognitive changes.
The diagnosis of AD can feel like a life sentence. To the individual it can feel like a
deadly disease that has no cure and will inevitably rob them of everything they have.
People with AD can feel disoriented as their cognitive abilities change. Once familiar
streets look strange. At moments memories wash over them out of the blue. Trying to
find memories can feel difficult, overwhelming and embarrassing. It can often feel like
one is waking up again and again without the narrative of recent moments or even the
past week to help put this moment in context. People can often feel angry at having to go
through the cognitive changes; they may have traumatic guilt and blame themselves; they
may feel betrayed, and questions of existential value can surface.
Parkinson’s Disease (PD), Parkinsonian Disease Dementia (PD-D), and Lewy Body
Dementia (LBD)
Diagnostic factors and neurocognitive changes. These disorders are likely a
spectrum of disorders that affect the sub-cortical movement, motivational and affective
centers of the brain (Blumenfeld, 2000). All of these disorders present with tremors,
slowing of movement, difficulty initiating movement, difficulty with balance and
cognitive slowing. Individuals with PD will have difficulty accessing memories but
cognitive strategies will suffice to manage symptoms. PD has no clear dementing process
16
and is a slow-progressing neurodegenerative disorder (Attix, & Welsh-Bohmer, 2006).
PD-D has the symptoms of PD but includes changes in cognitive and executive
functioning; it occurs in about 33% of all people diagnosed with PD. LBD is
characterized by fluctuating levels of arousal and attention, motoric disruptions, cognitive
losses similar to AD, and visual and auditory hallucinations (Attix, & Welsh-Bohmer,
2006). All three of these disorders are characterized by flat affect and in the case of LBD
and PDD, there are heightened activations of the Dorsal Motor Nucleus of the Vagus
nerve, which in the poly-vagal theory of the autonomic nervous system mediates
freezing/dissociation and autonomic shutdown in traumatic stress.
Psychological reaction. Depression is common in all forms of basilar dementia
disorders (Attix, & Welsh-Bohmer, 2006). Many individuals will express flat affect, lack
of interest in life, lethargy, depressed mood and other signs of depression. Individuals
who experience these disorders often face very real social stigmas that impact the quality
of their relationships. Individuals with LBD particularly experience paranoia and have
difficulty distinguishing dreams from reality. Individuals with PD-D and LBD often can
also feel isolated and excessively sleepy. Depression and PTSD are highly comorbid
(O’Donnell, Creamer, & Pattison, 2004). Traumatic loss has a high correlation with
comorbid of depression and symptoms of Post-Traumatic Stress Disorder (PTSD)
(Momartin, Silove, Manicavasagar, & Steel, 2004). Assessing individuals with these
disorders for grief at the changes and providing treatment can be very beneficial. In all
neurodegenerative disorders there are fluctuations in functioning, but these fluctuations
are more pronounced for people with LBD and make it quite challenging for both the
individual with LBD and their family. Levels insight may vary across the disease process,
17
on a day-by-day basis and fluctuate with attention and arousal levels. For individuals with
LBD, hallucinatory content can contain the full range of experiences, from quite difficult
to a moderately pleasant dream. Individuals with LBD may feel that they cannot trust
reality. For all the movement-based disorders falls occur regularly (Blumenfeld, 2002).
Falls can be traumatic, damaging and embarrassing.
Frontal Temporal Dementias (FTD): Picks, Primary Progressive Aphasia
Diagnostic factors and neurocognitive changes. This group of disorders is not
likely a unitary disorder but a family of related disorders (Attix, & Welsh-Bohmer, 2006).
For the frontal disorders there are two distinct developmental pathways. First symptoms
are often loss of nouns or verbal or semantic recall. In early stages symptoms are lack of
spontaneous speech, then economy of speech, stereotyped speech, later repeating the
phrases of others, preservative content and mutism. Second is the behavioral
disinhabition pathway. The individual with these symptoms can look antisocial; they can
lack social awareness and neglect their hygiene, engage in unrestrained sexual
expression, and are impulsive (Attix, & Welsh-Bohmer, 2006).
Psychological reactions. The lack of verbal abilities can be embarrassing and
lead to isolation. People can limit the scope of their social life due to fear that they cannot
communicate effectively with others. As the capability for verbal expression decreases, it
can be difficult for these individuals to find and create connections. Most individuals in
Western cultures communicate primarily through verbal expression. Non-verbal
expressions and interactions are not a part of normal exchanges. The skills for creating
relationships non-verbally can be taught and can improve the quality of life for
18
individuals with the primary progressive aphasia presentation of these disorders. As these
disorders progress, the loss of ability to express their needs, emotions and motivations
verbally can amplify their aggression.
For individuals who initially display behavioral impulsivity, this behavior can
impact their loved ones, their professional standing and their economic viability. They
can ruin their reputation with impulsive, unethical actions. Many individuals, due to the
loss of prefrontal functioning, do not have insight into their behaviors. They can appear
cold, rigid and impersonal. This can isolate them from their loved ones.
Vascular Dementias
Diagnostic factors and neurocognitive changes. These disorders are highly
heterogeneous (Attix, & Welsh-Bohmer, 2006). They reflect damage to the brain from
multiple classes of ischemic attacks, including burst blood vessels, occlusions and
aneurisms. The initial presentation reflects either the area of the brain damaged in the
ischemic attack or a reduction in global functioning due larger scale damage. This
disorder is a slowly progressing disorder and some have hypothesized that it cannot be
classified as a neurodegenerative disorder due to tissue loss not being caused by a
dementing process. However, this disorder is second only to AD in the number of
Americans affected.
Psychological reactions. This disorder often has a sudden onset. The suddenness
and the severe consequences of the cognitive changes can impact the family and
individual as a traumatic loss. The family needs to adjust to the changes in their loved
one’s functioning, ability to work and emotional sustenance for the family system. The
19
individual’s level of awareness of the changes is highly variable. If a cognitive system
that relates to self-monitoring and self-awareness is intact, then the individual may have
perfect awareness of the cognitive changes. If those systems are affected or there are
more global changes, they may have limited awareness of the changes. If an emotional
regulatory center is damaged, this can lead to behavioral changes that can impact the
family strongly. Integrating the experience of shock due to the suddenness of the changes
could help both the individual and the family adjust.
Conclusions
Touch therapy has a role to play in elder care. It has been shown to enhance the
quality of interpersonal relationships. Although not all touch studies have had solid
methodology, a 2006 study used solid methodology and found that touch treatments
reduced agitation, aggression and pacing behaviors in elders. Touch is only one aspect of
treatment and is far from a panacea. A full model of treatment planning would include
other non-touch-based interventions, movement interventions, family therapy, building a
treatment team, assessing the needs for pharmacotherapy, cognitive training, and respite
care.
Although touch treatment has some good studies supporting it, very few studies
have been conducted with elders, and the literature still abounds with poorly controlled
studies. More studies that focus on the use of touch with elders for multiple emotional,
behavioral, movement oriented and cognitive outcomes could help these interventions
become a larger part of mainstream treatment with elders who suffer from
neurodegenerative disorders.
20
References
Attix, D. K., & Welsh-Bohmer, K. A. (2006). Geriatric Neuropsychology: Assessment
and Intervention. New York: Guilford Press.
Blumenfeld, H. (2002). Neuroanatomy through clinical cases. Sinauer Associates Inc.,
Sunderland: MA.
D. Kahneman. (Personal Communication, March 2010)
Ferber, S.G., Laudon, M., Kuint, J., Weller, A., & Zisapel, N. (2002). Massage therapy
by mothers enhances the adjustment of circadian rhythms to the nocturnal period in
full-term infants. Journal of Developmental and Behavioral Pediatrics, 23, 410-
415.
Field, T. (2002). Infants' need for touch. Human Development, 157, 1-4.\
Field, T., Schanberg, S., Kuhn, C., Field, T., Fierro, K., Henteleff, T., Mueller, C.,
Yando, R., Shaw, S. & Burman, I. (1998). Bulimic adolescents benefit from
massage therapy. Adolescence, 33, 555-563.
Field, T., Seligman, S., Scafidi, F., & Schanberg, S. (1996). Alleviating posttraumatic
stress in children following Hurricane Andrew. Journal of Applied Developmental
Psychology, 17, 37-50.
Field, T, Sunshine, W., Hernandez-Reif, M., Quintino, O., Schanberg, S., Kuhn, C., &
Burman, I. (1997). Chronic fatigue syndrome: massage therapy effects on
depression and somatic symptoms in chronic fatigue syndrome. Journal of Chronic
Fatigue Syndrome, 3, 43-51.
Fredrickson, B., Mancuso, R., Branigan, C., & Tugade, M. (2000).The undoing effect of
positive emotions. Motivation and Emotion, 24(4), 237-258.
21
Feinsteina, J. S., Duffa, M. C. & Tranela, D. (2010). Sustained experience of emotion
after loss of memory in patients with amnesia. PNAS, 107(17), 7674-7679. doi:
10.1073/pnas.0914054107.
Friedman, D., Murray, E., O'Neill, B., & Mishkin, M. (2004). Cortical connections of the
somatosensory fields of the lateral sulcus of macaques: Evidence for a
corticolimbic pathway for touch. The Journal of Comparative Neurology, 252(3),
323 – 347.
Field, T., Hernandez-Reif, M., Diego, M., Schanberg, S., & Kuhn, C. (2005). Cortisol
decreases and serotonin and dopamine increase follow massage therapy.
International Journal of Neuroscience, 115(10), 1397-1413.
Foundation for Human Enrichment. (2007). Somatic experiencing: Healing trauma
training manual. Boulder, CO: Foundation for Human Enrichment.
Hawranik, P., Johnston, P., & Deatrich, J. (2008) Therapeutic touch and agitation in
individuals with Alzheimer's disease. Western Journal of Nursing Research. 30(4).
417-434. doi: 10.1177/0193945907305126.
Hernandez-Reif, M., Field, T., Krasnegor, J., & Theakston, H. (2001). Lower back pain is
reduced and range of motion increased after massage therapy. International
Journal of Neuroscience, 106, 131-145.
Hertenstein, M. J., Holmes, R., McCullough, M., & Keltner, D. (2009). The
communication of emotion via touch. Emotion, 9, 566-573.
Kima, E. J., & Buschmann. M. T., (1999). The effect of expressive physical touch on
patients with dementia. Nursing Studies, 36(3)Pages 235-243.
22
Kurosawa, M., Lundeberg, T., Agren, G., Lund, I., & Uvnas-Moberg, K. (1995).
Massage-like stroking of the abdomen lowers blood pressure in anesthetized rats:
influence of oxytocin. Journal of the Autonomic Nervous System, 56, 26-30.
Kloet, R., Joëls, M., & Holsboer, F. (2005). Stress and the brain: from adaptation to
disease. Nature Reviews Neuroscience, 6, 463-475.
Levine, P. & Frederick, A. (1997). Waking the Tiger: Healing Trauma The Innate
Capacity to Transform Overwhelming Experiences. Berkeley, CA: North Atlantic
Books.
Lai, J., Evans, P., Sik, H., Chong, A., Siu, O., Chan, C., Ho, S., Rainbow, T., Chan, P., &
Chan, C. (2005). Optimism, positive affectivity, and salivary cortisol. British
Journal of Health Psychology,10(4), 467-484.
Linehan, M., (1993). Skills Training Manual for Treating Borderline Personality
Disorder. New York, NY. Guilford Press.
Marks. D. (1997). Models of disability. Disabilities and Rehabilitation,19(3). 85-91.
Matthiesen, A.S., Ransjo-Arvidson, A.B., Nissen, E. & Uvnas-Moberg, K. (2001).
Postpartum maternal oxytocin release by newborns: effects of infant hand massage
and sucking. Birth, 28, 13-9.
McEwen, B. & Lasley, L. (2002). The end of stress as we know it. Washington, DC:
National Academies Press.
McEwen, B. (2003). Mood disorders and allostatic load. Biological Psychiatry, 54(3),
200-7.
O’Donnell, M., Creamer, M., & Pattison, P., (2004). Posttraumatic Stress Disorder and
Depression Following Trauma: Understanding Comorbidity, Anxiety. American
23
Journal of Psychiatry, 161, 1390-1396.
Momartin, S., Silove, D., Manicavasagar, V., & Steel, Z. (2004). Complicated grief in
Bosnian refugees: Associations with posttraumatic stress disorder and depression.
Comprehensive Psychiatry, 45(6), 475-482
Orto, A. E. D, & Power, P. W. (2007). Psychological and social impact of illness and
disability. Springer Publishing. New York, NY.
Porges, S. (1995). Orienting in a defensive world: Mammalian modifications of our
evolutionary heritage. A Polyvagal Theory. Journal of Psychophysiology, 32(4),
301-318.
“Sapolsky on depression” (Sapolsky, R., Personal communication, November 10th, 2009).
Pulled from the web at: http://www.youtube.com/watch?v=NOAgplgTfxc
Schore, A. N. (2003). Affect regulation and repair of the self. New York: W. W. Norton
& Company.
Starkmana, M., Giordanib, B., Gebarskic, S., Berentb, S., Schorke, M., & Schteingartd,
D. (1999). Decrease in cortisol reverses human hippocampal atrophy following
treatment of Cushing’s disease. Biological Psychiatry, 46(12). pp. 1595-1602.
S. Tonegawa (Personal Communication, June 12th 2003)
Weaver, I. (2007). Epigenetic programming by maternal behavior and pharmacological
intervention. Nature versus nurture: let's call the whole thing off. Epigenetics,
2(1), 22-8.
Weaver, I. C. G., Grant, R., & Meaney, M. J. (2002). Maternal behavior regulates long-
term hippocampal expression of BAX and apoptosis in the offspring. Journal of
Neurochemestry, 82(4):998-1002
24
Woods, D. L. & Dimond, M. (2002). The Effect of Therapeutic Touch on Agitated
Behavior and Cortisol in Persons with Alzheimer’s Disease. Biological Research
for Nursing, 4(2). 104-114. doi: 10.1177/1099800402238331
Woods, D. L., Craven, R. F. & Whitney, J. (2005). The effect of therapeutic touch on
behavioral symptoms of persons with dementia. Alternative Therapeutic Health
Medicine, 11(1): 66-74.
Zarit, S. H. Orr, N. K. & Zarit, J. M. (1985). The hidden victims of Alzheimer's disease:
families under stress. New York University Press. New York, NY.
25