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doi:10.1111/psyg.

12834 PSYCHOGERIATRICS 2022; 22: 521–529

REVIEW ARTICLE

Spiritual care for the management of Parkinson’s disease:


Where we are and how far can we go
Jia GAO,1 Qunjuan WANG,2 Qin WU,2 Yu WENG,2 Huamei LU3 and Jingzhi XU 2

1
Science and Research Office, 2Neurology Depart- Abstract
ment and 3Nursing Department, Changshu Hospi-
tal Affiliated to Nanjing University of Chinese An increasing number of studies have investigated the neural networks and
Medicine, Changshu, China brain regions activated by different aspects of religious faith or spiritual
C o r r e s p o n d e n ce : J i n g z h i X u , N e u r o lo gy practice. The extent to which religiousness and spirituality are dependent
Department, Changshu Hospital Affiliated to on the integrity of neural circuits is a question unique to neurological ill-
Nanjing University of Chinese Medicine, nesses. Several studies have reported that neural networks and brain areas
Changshu, China. Email: jingzhi_xu@hotmail.com
represent the various components of religious faith or spiritual activity in
Disclosure: The authors declare that they have no recent decades. In addition to research in healthy people, another strategy
conflicts of interest in the research.
is to observe if neurological abnormalities caused by stroke, tumour, brain
Received 24 November 2021; revision received 24 January
damage, or degenerative sickness are accompanied by an alteration in reli-
2022; accepted 24 March 2022.
giosity or spirituality. Similarly, Parkinson’s disease (PD), an ailment charac-
terized by dopaminergic neuron malfunction, has been utilized to explore
the role of dopaminergic networks in the practice, experience, and mainte-
nance of religious or spiritual beliefs. Case–control and priming studies have
demonstrated a decline in spirituality and religion in people with PD due to
dopaminergic degeneration. These studies could not adequately control for
confounding variables and lacked methodological rigour. Using qualitative
and quantitative assessments, a mixed-method approach might shed addi-
tional light on putative religious beliefs alterations in PD. In the current
Key words: neurodegenerative diseases, Parkinson’s review paper, we discussed the recent research on the impact of PD on
disease, spiritual care. spiritual beliefs and spirituality.

particularly spiritual authoritarianism.6 Seizures in the


INTRODUCTION
temporal lobe have also been linked to spiritual con-
In recent decades, several studies have delved at the
neural pathways and brain areas involved in various version and numinous experiences.9 The World
features of spiritual devotion or spiritual practice.1–5 Health Assembly resolution 37.13 made the spiritual
Another technique is to examine if neurological dimension part and parcel of World Health Organiza-
abnormalities induced by stroke, tumour, brain dam- tion (WHO) Member States’ strategies for health in
age, or degenerative disease are followed by a shift 1984.10,11 According to the WHO, ‘The spiritual
in religion or spirituality, in addition to studying dimension [is understood] to imply a phenomenon
healthy persons.6–9 For example, Urgesi et al. discov- that is not material in nature, but belongs to the realm
ered that, following the excision of brain cancers by of ideas, beliefs, values and ethics that have arisen in
neurosurgery, damage to the posterior parietal areas the minds and conscience of human beings, particu-
was linked to a higher level of religious embrace.7 In larly ennobling ideas. … The spiritual dimension plays
traumatic brain injury patients, a connection between a great role in motivating people’s achievement in all
right parietal damage and growing spirituality scores aspects of life’.10(pp. 5 6) Case–control and priming
has been acknowledged,8 and dorsomedial prefrontal studies have demonstrated a decline in spirituality
cortex injuries caused by tumours or strokes were and religion in people with Parkinson’s disease
linked to enhancement of authoritarian tendencies, (PD) due to dopaminergic degeneration. These

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J. Gao et al.

studies could not adequately control for confounding spiritual and worldwide managing in PD, highlighting
variables and lacked methodological rigour. A mixed- the role of religious coping.26–30
method approach using qualitative and quantitative Spirituality and religious beliefs are a significant
assessments might shed additional light on putative resource for patients with a chronic sickness, offering
religious beliefs alterations in PD.11 Spiritual care is emotional consolation, helping to sustain self-esteem
not synonymous with chaplaincy in healthcare. It is and greater tolerance of discomfort and further indi-
an obtrusive addition to routine care; spiritual care cations, even in more secularized European coun-
is an awareness of the spiritual dimension and an tries.31–36 The procedure of adaptation following a
acceptance of patients’ and caregivers’ needs, change in one’s lifestyle, objectives, and prospects
options, resources, civil rights, and possible spiritual can lead to a period of contemplation, generating
observational uncertainties about life’s meaning and
or religious limitations. Spiritual care is accepting a
determination. This could indicate a rising interest in
patient’s or caregiver’s desire to avoid discussing
spirituality and religion, as well as a dependency
spiritual needs and concerns with healthcare practi- on it.37
tioners.12 In palliative care, spiritual care emphasizes A specific study of religious faith in PD patients
spirituality via presence, empowerment, and provid- should differentiate between an intrinsic loss of reli-
ing calm.13 giousness due to neurological degeneration, a predi-
Correspondingly, PD, a disease characterized by a cated loss of spirituality due to the disease’s
dysfunction of dopaminergic neurons, has been used practical, social, and cognitive challenges, and any
to investigate the role of dopaminergic networks in sensitive response to an ailment that may strengthen
religious or spiritual belief, practice, experience, and or weaken spiritual belief.
maintenance. A few case–control studies have been
conducted with non-demented PD patients, disease
Describing and Evaluating Religion and
control, and healthy people of the same age, using
Spirituality
standardized questionnaires14–17 or further objective
It is difficult to describe religious faith and spirituality
implicit methods18–21 to assess religiousness and
because there is no consensus on a concept or mea-
spirituality. The interpretation of such studies, on the
surement method. Religiousness encompasses many
other hand, is not simple. The physical, cognitive,
psychological, social, cultural, cognitive, and behav-
and emotional impacts of PD are typically exacer-
ioural traits. The alignment of domains is not always
bated by the unpredictability of therapeutic
consistent—for example, a person can have religious
approaches and symptoms.22,23 Such confounds
views but not practice religion. Spirituality has also
must be carefully controlled to claim a disease’s
been described as a ‘nebulous notion’ encom-
selective effect on spirituality. In this review, we
passing a wide range of individual meanings.38 Disil-
examine this research and argue that the findings
lusionment with institutional religion has led to a
have been misinterpreted to show that religious faith
growing emphasis on personal meaning and auton-
is less important for patients with PD.
omy in spirituality, with many people now identifying
We bring this up because these few studies which
as ‘spiritual but not religious’.38 Certain standardized
have been done pose the risk of producing a stereo-
procedures have been established to designate how
typical perspective of PD as causing a loss of reli-
important religious belief and spirituality components
gious faith. Indeed, in the United States, if not yet in
are to individuals. Table 1 shows a brief description
Europe, this viewpoint is circulating in patient infor-
of those used in the studies reviewed.
mation publications.24 These studies, on the other
hand, may contribute to a broader discussion of the
plausible ways in which PD neuropathology and ther-
apy can influence spiritual belief differences, even HEALTH-RELATED SPIRITUALITY
after controlling for physical and psychosocial factors BENCHMARKS
and addressing the importance of religious coping in The hospice movement in the United Kingdom in the
adjusting to life with a chronic condition.25 We also 1960s improved medicine by emphasizing spirituality
make annotations about observational research on as an important component of the overall pain

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Spiritual care for Parkinson’s disease

Table 1 Various standardized procedures for assessing the importance of religious belief and spirituality, of relevance to the management
of Parkinson’s disease
Scale Description
Brief Multidimensional The BMMRS is a confirmed self-report questionnaire that contains approximately 35 items about the
Measure of participant’s beliefs, religion’s public and private aspects, practices, and commitments. It comes in a
Religiousness and variety of formats. In a recent factor analysis, the most closely associated variables to differences in
Spirituality (BMMRS)39,40 personal belief were positive spiritual experiences, negative spiritual experiences, religious practices,
forgiveness, religious support, and two basic questions about general religious and spiritual belief. Due to
mobility limitations and a lack of energy, lesser scores for religious activities and spiritual support may be
the outcome. In private religious beliefs, concentration concerns may interfere with prayer or analyse
religious literature difficult.
Gorsuch Intrinsic/Extrinsic In this short quiz, individuals assess their agreement with 14 statements identifying features of religious
Religious Orientation activity. These declarations may imply an ‘intrinsic’ religious commitment based on intense private
Scale41 devotion (e.g. ‘My entire approach to life is founded on my religion’, or ‘It is crucial for me to spend time in
private thinking and prayer’). On the other hand, extrinsic commitment refers to actions taken to benefit
others or improve one’s mood. (e.g. ‘I attend church largely to spend time with my friends’).
Religious and Spiritual This was created as a comprehensive measure to avoid Judaeo-Christian bias, and it comprises public and
Beliefs: A Royal Free private religious, spiritual, and philosophical components of belief. The participant is asked the following
Interview (RFI)42,43 questions on ‘religious practice’: ‘How important is the actual practice of your faith to you?’ ‘What form
does it take?’ and ‘How often do you practice?’ The term ‘spiritual practice’ represents the belief in an
exterior spiritual power and how it affects daily life, managing and analysing world events and natural
calamities. A section on philosophical belief poses similar questions about philosophical stances like
existential, atheist, etc.
The Freiburg A 35-item coping measure with five subscales: depressive response; dynamic, problem-solving coping;
Questionnaire of Coping diversion; religiosity and the search for meaning; understatement and ambitious thinking.
with sickness44

paradigm. Dame Cecily Saunders, a nurse, social consequence, they often fail to address the religious
worker, and physician, campaigned for the integrity beliefs of patients and caregivers.51,52 Gijsberts et al.
of cancer patients by combining the best nursing and discovered that spiritual care in palliative care was
medical practices and devising an ars moriendi para- defined as ‘attention for spirituality, presence,
digm that maintained pain alleviation with adequate empowerment, and bringing peace’ in a study of
morphine doses.45 European literature.13,53 Religiousness is infrequently
According to the WHO definition, spiritual require- encouraged as an important part of health and well-
ments are felt by healthcare professionals, patients, being in public health and/or patient education, leav-
and caregivers worldwide, especially during pivotal ing patients and caregivers bewildered when
and significant life circumstances. As a result, all healthcare practitioners (unexpectedly) discuss spiri-
healthcare personnel, patients, and caregivers are tual subjects in the secularized context of technical
concerned about spiritual requirements. International medicine.54–56
efforts have been made since 1991 to promote spiri-
tual care in all aspects of healthcare, not just pallia-
tive care.46,47 In 1996, the NANDA nursing diagnosis Potential mechanisms for a relationship
standards were expanded to include spiritual anguish between Parkinson’s disease (PD) and religion
and suffering.48 In 2006, the WHO recognized reli- Some broad assumptions can be made regarding
giousness as part of its health-related quality of life how neuropathological alterations and therapy
scale.49 effects in PD might contribute to changes in religios-
In 2012, the International Council of Nurses (ICN) ity. Recent research in healthy persons suggests that
stated that ‘in providing care, the nurse promotes an the basal ganglia play a role in religious belief mainte-
environment in which the human rights, values, cus- nance and motivation and rituals like prayer and
toms and spiritual beliefs of the individual, family and meditation.2,57 Given the cortico-striatal-thalamic’s
community are respected’.50(p. 2) Despite their best significance this is predictable in the management of
efforts, healthcare professionals struggle to cope cognitive and emotional functions as well as motor
with defining spirituality and spiritual care, and as a control.58–60

© 2022 Japanese Psychogeriatric Society. 523


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J. Gao et al.

Dopamine’s significance in motivation and goal- circumstances and dopamine deficiency in PD, lead-
directed conduct has long been known,61–63 and ing to a decline in religious devotion.
reward circuit blunting in the ventromedial prefrontal Treatment with dopamine agonists, and to a
cortex, amygdala, striatum, and midbrain has been slighter degree, with levodopa, has been associated
associated to PD-related lethargy.64 As a result, apa- with impulsive, compulsive disorders (ICDs), irrational
thy in PD may involve a loss of interest in religious gambling, excessive purchasing, eating disorders,
practices. In a functional magnetic resonance imag- and hypersexuality are few examples.73,74
ing (fMRI) study with healthy volunteers, activation Dopamine neurotransmission in the mesocor-
patterns were analysed when individuals rated ticolimbic pathway is affected by dopamine agonist
whether religious affirmations, ethical attitudes, and a actions acting through D3 receptors in the ventral
fundamental, propositional statement such as ‘Most striatum. Excessive praying or other religious prac-
people have ten toes’, were true or untrue.65,66 When tices were not mentioned in the ICD, whether or not
compared to uncertainty, both belief and scepticism they were related to PD.75
showed stronger activation, showing a corticostriatal Religious alterations could result from degenera-
network regulating anticipatory, reward-related deci- tive changes in Parkinson’s illness that reach beyond
sion making, involving the ventromedial prefrontal the nigrostriatal circuit. In individuals with PD, there
cortex, limbic regions, and caudate. have been findings of abnormalities in the theory of
Despite its shortcomings, the study shows that mind, particularly cognitive elements, linked to frontal
sacred belief is controlled via brain links similar to executive deficiencies.76,77 Personal extemporary
those that drive general beliefs. In a group of devoted praying has been observed to recruit areas involved
Christians, an fMRI study of prayer revealed an in social cognition, including a traditional theory of
extremely substantial district rise in the blood oxygen mind, in devout Christians but not in atheist controls.
level-dependent response in the head of the caudate Talking to God appears to be similar to talking to a
nucleus while they were praying quietly.67 The impor- friend. Indeed, anthropologists have hypothesized
tance of the connections between the dorsal caudate that religion evolved due to a well-developed con-
and the dorsolateral prefrontal cortex in habitual ception of mind that permitted the supernatural
reward processing has been well demonstrated.68 agentic intent to be attached to natural
Similar brain pathways were activated in investiga- happenings.78
tions of economic exchange games, including trust, Other cognitive deficits associated with PD, such
collaboration, and expectation of forthcoming benefit as difficulties with focus, concentration, and memory,
in exchange for commitment, and parallels were dis- are likely to block religious practice in some ways.
covered in this prayer study.69 In the spiritual econ- However, we only identified one short qualitative
omy, prayer appears to be the medium of exchange study that mentioned concentration impacting
for commitment. prayer.79 Some believe that frontal lobe executive
Certain neurobiological interpretations of religious function and working memory are required for ‘tran-
practices have emphasized the significance of dopa- scendence’, or the ability to ascend above the cur-
mine and serotonergic disturbances in delusional rent moment in contemplation of an alternate
beliefs and obsessions in psychiatric illnesses, indicat- world.29 Though there is no evidence that this occurs
ing that dopamine provides a unique function in modi- in a religious context, frontal lobe impairments in a
fying religious experience within a ‘religious circuit’.70 nondemented PD group have been linked to difficul-
This has seemed to be misrepresentative, in part since ties conceptualizing hypothetical future
routine spiritual behaviour and attitude and belief have occurrences.80
less in common with the severe anxiety, grandiosity, Personality changes might also have a role:
or fearfulness based on religious psychoses; further- Increased impulsivity, for example, could make it
more, the neural connections engaged in these abnor- more difficult to stick to past religious convictions.81
malities and those associated in PD seem to have A more stoic, cautious, and inflexible attitude has
little correlation.71,72 On this premise, no firm link can also been seen in people with PD. However, this is
be drawn between dopaminergic superfluous in these no longer considered a risk factor but rather a

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Spiritual care for Parkinson’s disease

probable preclinical development.82 This type of shift In therapeutic practice, spiritual care is wholly con-
might contribute to a preference for a certain type of structed on connection. ‘The activity of “spiritual
religious devotion, such as a more traditional rather care” or responding to “spiritual need” becomes a
than a more modern form of worship. matter of recognizing what people fail to receive in
Finally, degenerative alterations in PD may impact healthcare contexts and trying to ensure that they
a variety of brain networks and cognitive circuits that are, as far as possible, assisted on their multiple que-
underpin religious beliefs and practices. They must, sts to make that which may be absent present’, write
however, be evaluated in light of observational stud- Swinton and Pattison.86(p. 233)
ies (described below), which suggest that religion
plays an important coping role in PD.24

Conceptualization attempts CONNECTIVITY IS NOT A REMEDIAL


The phrase ‘otherworldliness’ is rarely used by MEASURE
patients and guardians to describe their interests Since the whole of human existence is more than
and demands. When the most established of elderly the sum of its parts, human perception cannot be
(85+) from Sweden received some information divided into physical, social, psychological, or spiri-
regarding otherworldliness, he described it as ‘some- tual domains. It is vital to comprehend the interre-
thing magnificent and unimaginable.’83,84 The chal- lated nature of spirituality in all parts of healthcare
lenge in appreciating what otherworldliness implies is regarding disease-induced deficits in the perception
accepting and respecting its multiplicity and individu- of ourselves, others, and the world. Individuals will
ality. According to the United States’ agreement- try to pursue meaning, negotiate life events, and
based definition, ‘the part of humankind that refers to build social lives even though their general percep-
the manner in which people look for and express sig- tion and sense-making are challenged.87 Atul
nificance and reason, and the manner in which they Gawande criticizes the one-dimensionality in medi-
experience their connectedness to the occasion, to cine as follows: ‘of people’s minute-by-minute levels
self, to other people, to nature, and to the huge or of pleasure and pain miss this fundamental aspect
sacrosanct’.47,85 The working definition of European of human existence. A seemingly happy life may be
palliative consideration is as follows: empty. A seemingly difficult life may be devoted to a
Spirituality is the dynamic dimension of human life great cause. We have purposes larger than our-
that relates to the way people (individual and com- selves. Unlike your experiencing self—which is
munity) experience, express and/or seek meaning, absorbed in the moment—your remembering self is
purpose and transcendence, and the way they con- attempting to recognize not only the peaks of joy
nect to the moment, to self, to others, to nature, to and valleys of misery but also how the story works
the significant and/or the sacred. Spirituality is multi- out as a whole.’ As a result, it is critical to establish
dimensional, consisting of and sustain relationships to address and support
1 Existential challenges (e.g. questions concerning people in acquiring what they lack.
personality, which means enduring and demise, Spiritual care is defined as a non-discipline-
blame and disgrace, compromise and absolution, specific healthcare function analogous to emo-
opportunity and obligation, expectation and mis- tional or physical care.88 As a result, it is the obli-
ery, love and delight). gation of all healthcare providers to give spiritual
2 Attitudes and values are founded on values (what is care and maintain connectivity. Even though medi-
most important for each person, such as relations cal professionals recognize the need for spiritual
to oneself, family, friends, work, things nature, art care, how it is administered is uncertain.89 As
and culture, ethics and morals, and life itself). sources of help, the creation of evaluation instru-
3 Religious grounds and concerns (faith, beliefs and ments90 and the instrumentalization of spiritual
practices, the relationship with God or the ulti- care are also pursued. Instead of emphasizing the
mate). It is important to remember, though, that in need for specific spiritual therapies, patients
care circumstances, the patient is the one who express gratitude for being acknowledged as a
tells us what form their spirituality takes. ‘whole person’.91

© 2022 Japanese Psychogeriatric Society. 525


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J. Gao et al.

The spirituality of patients with Parkinson’s spiritual care should be provided? and (iii) What role
disease (PD) does spirituality play in caregivers’ spiritual care?96
Prizer et al.92 found that PD patients with a caregiver According to Gijsberts et al.,13 There appears to be a
reported significantly advanced spiritual well-being split between North American scholars who advocate
(106.90, SD =316.00) compared to those without hypothesis-driven outcome research based on vali-
caregivers (78.49, SD =316.00). Advanced Functional dated instruments and the assessment of potential
Assessment of Chronic Illness Therapy-Spiritual confounding variables, and those who advocate
Well-being scores were linked with lower quality of hypothesis-driven outcome research based on vali-
life, fewer non-motor symptoms, and less palliative dated instruments and the assessment of potential
care symptoms in these individuals. As a result, the confounding factors.97 Furthermore, European
authors conclude. “spiritual counselling may be a researchers believe that the impacts of spiritual care
crucial emphasis in the management of Parkinson’s offered through creative, storytelling, or ritual prac-
disease and must be examined when a patient and tices may not be reflected entirely in health-related
caregiver visit our department.”92 This is one of the quality of life. As a result, the creation of (instruments
first studies to look into this crucial human fac- to quantify) narrative outcomes are recommended as
tor in PD. a future direction.13 Finally, doctors and researchers
According to the findings of Prizer et al.’s study, struggle to address and attend to spirituality in
spirituality has an important role in PD management.92 patients with persistent neurological illnesses. To be
Due to the extreme connections between meaning, understandable, seek purpose, and feel allied,
peace, faith, mood, palliative symptoms, and quality patients with PD and their caregivers require spiritual
of life, spirituality should be included in the clinical his- care. On the other hand, appropriate spiritual care
tory recorded by the doctor. According to Boersma models have yet to be devised.
et al, patients with PD do not believe palliative care is
enough at the time of diagnosis. Palliative care, they
believe, is associated with hospice, advanced cancer, CONCLUSION
and death. On the other hand, many PD patients In PD, the relationship of religion and spirituality has
believe that faith and spirituality are critical in helping received little attention. The literature is limited to a
them accept their diagnosis and go forward with their few investigators who employed diverse methodolo-
new lives with the disease.93 gies and assumptions, all of whom worked in
For PD patients, spirituality is regularly incorpo- Westernized contexts with predominantly Judaeo-
rated into palliative care plans.90 We discovered PD Christian faith backgrounds among their partici-
patients in a tranquil state near the end of their lives pants. Decreased movement and possibly cognitive
through our own94 research, which addressed the impairment, combined with social and emotional
spirituality of the caretakers as well as ourselves.95 considerations, can have an unspecified impact
(In a nutshell, all physicians who treat individuals with on religious or spiritual life in persons with
’PD should consider spirituality in their practice and PD. Meanwhile, case–control studies have been
deliver access to professional spiritual care. The ben- interpreted to show a selective religiosity deficit in
efits of healthcare teams delivering complete, multi- PD, showing that dopamine is involved in normal
disciplinary treatment to PD patients are supported spirituality, and these findings have been widely
by this study. published in books and papers.28 However, these
claims could only be confirmed by comparing PD
cases to carefully chosen controls with identical
Thinking of future benchmarks mobility, cognitive, emotional regulation, and sociali-
Integrating spiritual care into a religiously diverse set- zation difficulties.
ting like healthcare is challenging, according to On the other hand, small-scale qualitative research
Liefbroer et al.96 There are a variety of viewpoints on has emphasized the potential positive effects of a
how to integrate spirituality with healthcare and medi- disease like PD on the growth of spirituality, as well
cine. Three questions are essential here: (i) Who as the prospective advantages of religious faith in
should provide spiritual support? (ii) What kind of coping with illness. A diverse process approach

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Spiritual care for Parkinson’s disease

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