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ORIGINAL ARTICLE
Year : 2023 | Volume
: 67
| Issue : 1 | Page : 117-122
Is disease a threat to identity? A systematic review of parkinson's disease and personal identity
Ashima Nehra1, Rhythm Makkar2, Rajesh Kumar Singh3, Roopa Rajan3, Maroof Ahmad Khan4, Achal Kumar Srivastava4
1 Professor, Clinical Neuropsychology, Neurosciences Centre, All India Institute of Medical Sciences, New Delhi, India
2 Research Fellow, Clinical Neuropsychology, Neurosciences Centre, All India Institute of Medical Sciences, New Delhi, India
3 Associate Professor, Department of Neurology, All India Institute of Medical Sciences, New Delhi, India
4 Professor, Department of Biostatistics, All India Institute of Medical Sciences, New Delhi, India
Correspondence Address:
Ashima Nehra
Room 718, 7th Floor, Clinical Neuropsychology, Neurosciences Centre, All India Institute of Medical Sciences, Ansari Nagar, Delhi - 801 507
India
Source of Support: None, Conflict of Interest: None
CheckDOI: 10.4103/ijph.ijph_1283_22
Abstract
Introduction: Parkinson's disease (PD) is a neurological condition that impacts the physical and psychological functioning of the patients. The physical and cognitive changes come with social stigma and threats to roles previously associated with their identities. Objectives: The current paper attempts to study the influence of the disease on the personal identity of the patients. Methods: A systematic review was done on PD and personal identity following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 guidelines. The Consolidated Criteria for Reporting Qualitative Research checklist was used to assess the quality of the papers. The selected papers were synthesized to understand the relationship between PD and personal identity. Results: The emerging themes were: (1) dissociation of old personal identity: (1.1) Influence of physical symptoms, (1.2) influence of society and stigma, and (1.3) threats to roles associated with identity and (2) changing family dynamics. A Model of Personal, Family, and Disease Dynamics was also developed based on clinical first-hand experience with the patients and the review. Conclusion: The personal identity of the PD patients shifts drastically as a result of their physical and psychosocial experiences. This also results in changed family dynamics, with the patient feeling sidelined due to loss of control and responsibilities in the family.
Keywords: Behavioral neuroscience, family, neuropsychology, Parkinson's disease, personal identity, psychosocial impact
Introduction 
Parkinson's disease (PD) is a progressive neurodegenerative disease that caused 3.2 million disability-adjusted life years (DALYs) and 211,296 deaths globally in 2016.[1] From 1990 to 2019, India's crude estimate prevalence of PD increased by 105.9% and the crude DALY estimate increased by 85.2% with around 45,300 deaths and 7,71,000 people suffering from the disease.[2] The disease count as well as the burden of the disease has increased significantly making it a matter of concern.
The symptomology of PD can be understood as an intersection of 4 major areas: motor, cognitive, behavioral or neuropsychiatric, and autonomic nervous system failures.[3] The patients experience rigidity, tremors, motor disturbances – akinesia, bradykinesia, and hypokinesia, postural instability; imbalance, and gait difficulties.[4] Deficits in behavior, cognition, and daily function are also seen.[3] Patients complain of memory, time, and spatial perception deficits; depression, and anxiety.[4] Research also shows deficits in executive functioning skills such as problem-solving, attention, decision-making, and effective use of working memory. Moreover, some psychological consequences include fear and anxiety of further deterioration of the condition and trauma from anticipating future mishaps such as falling, hurting oneself, and the resulting social embarrassment.
Personal identity or identity refers to “an individual's sense of self-defined by (a) a set of physical, psychological, and interpersonal characteristics that is not wholly shared with any other person and (b) a range of affiliations (e. g., ethnicity) and social roles.”[5]
Long-term illnesses have an impact on the family as a unit. These often go unrecognized or are underestimated.[6] Key factors affected include psychological and emotional functioning, interpersonal relationships, disruption of leisure activities, and imbalance of financial resources. The family members of the patients' family have expressed feelings of guilt, worry, frustration, embarrassment, anger, and despair. The focus on the presenting illness also leads to a lack of time, energy, and effort into relationship building. This leads to deteriorating quality of relationships within the family.[6]
Neuropsychological assessment is one of the most important aspects of diagnosing disability,[7] with psychoeducation and counseling playing a major role in maintaining and alleviating the neurological conditions.[8] The “neuropsychological continuum of care model for neurological conditions”[8] is a framework that focuses on achieving long-term care and includes preventive, promotive, conservative, curative-medical, neuropsychological rehabilitative, and palliative aspects to treatment. Keeping the importance of neuropsychology in mind, the current review focused on studying the personal identity and family dynamics of PD patients in an attempt to understand possible rehabilitative strategies.
On several encounters of the author's clinical experience, PD patients seemed to be so preoccupied with complaints of the disease that a shift in their personal identity was hypothesized. There was a lacuna in the literature that discussed the experiences of PD in context of personal identity. The objective of this systematic review was (a) to understand the impact of PD on patients' personal identity and (b) present a model to demonstrate findings.
Materials and Methods This study was done as part of an ongoing randomized controlled trial at the institute. The latest Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guidelines[9] were followed for implementing the systematic review. A systematic literature search was done using the electronic databases PubMed and EMBASE. All results from January 2012 to January 2022 were screened. The terms included in the search were “Parkinson Disease” AND “Personal Identity.” Papers were also searched from reference lists of relevant articles. Screening of all articles was done and only those that fulfilled the eligibility criteria were selected. Quality assessment of the articles was done using the Consolidated Criteria for Reporting Qualitative Research (COREQ). Others were excluded with reasons shown in [Figure 1].
Inclusion criteria
The eligibility criterion was as follows:
Qualitative papers in English languagePapers that included interviews or case paradigms on experiences of PD patients and factors influencing their identity. Papers with interviews of both patients and their caregivers were also included if they had insights related to influences on patients' identityPapers with sample having a formal diagnosis of PDPapers that passed the cutoff score ((≥12/32) on the COREQ checklist of quality assessment.Exclusion criteria
The exclusion criterion was as follows:
Quantitative papersPapers on interventions such as deep brain stimulation, repetitive transcranial magnetic stimulation, cognitive behavioral therapy, or measured other psychological constructs unrelated to personal identityPapers that lacked the perspective of PD patients or caregivers and did not include personal experiences with the disease were also excludedStudies that included comorbidities were also excluded so as to keep the data purely restricted to experiences with PD.Data extraction
[Figure 1] presents the selection process of included studies using PRISMA 2020 guidelines. A total of 150 studies were screened against eligibility criteria out of which 138 were excluded because of the reasons listed [Figure 1]. The remaining 12 studies that fulfilled the eligibility criterion were assessed for quality using the COREQ checklist. All of the studies were retained for qualitative analysis.[10]
[Table 1] depicts the scores of all included studies on the COREQ domains. All studies (n = 12) scored in the range of 12–22 out of 32 and none of the studies were flawed (scoring <12/32). This suggests that all selected qualitative studies used techniques that were scientific, resulting in original data and objective findings [Table 2].
Table 1: Included studies' scores on the three domains of the Consolidated Criteria for Reporting Qualitative Research checklist Results and Discussion Dissociation of old personal identity
Influence of physical symptoms
Neurodegenerative disease presents physical symptoms such as rigidity, involuntary movements, tremors, imbalance, and freezing of gait. Patients find themselves gradually becoming slower and less skilled than before. This restricts the patients from performing routine tasks that were once second nature and strongly linked to their identities. Because of physical limitations due to the disease, women grieved their ability to manage kitchen duties and make food for their families, tasks they had done throughout their married lives.[11],[19] Male patients felt emasculated because of their “unreliable bodies” that were now uncooperative and weak. They showed great apprehension about having to use physical aids such as canes and wheelchairs.[12] According to their study, Hammarlund et al.[13] considered the ability to walk to be strongly associated with one's social identity, emotional well-being and integrity, and the ability to walk independently to be a precondition for leading an autonomous life in the society.
Patients complain of changes in speech and voice[14] which makes it difficult to communicate coherently and participate in social interactions, leading to reduced confidence and avoidance of social gatherings altogether. A patient expressed that he felt very self-conscious about his inability to find the right words and express himself, and that is why he now did not like himself.[3] Dyskinesia and freezing of gait limit the patients from going to crowded places and using public transportation easily, restricting their involvement in prior occupational roles like going to work. Activities such as driving, shopping, and even taking the stairs are not as convenient as before.[10],[13] The unpredictable nature of the disease requires a great deal of planning ahead of time,[16] thereby taking away from the patient and their family the privilege of taking spontaneous decisions.
Influence of society and stigma
The overt nature of the symptoms might be the cause for the level of stigmatization that PD patients face in the society. They experience a shift from a normal person's identity to getting labeled a patient. This labeling is endured with social isolation, embarrassment, rejection, presumed stereotypes, and differential treatment[12],[13],[15],[18] causing a decline in self-esteem, confidence, and overall mood of the patient. The review of literature highlights that patients emphasize on wishing to regain pre-morbid abilities and looking “normal” in the society.[13],[15],[16] The author's encounter with a 43-year-old female can be worth mentioning here, who reminisced of being a cheerful and social person before her diagnosis. Questions about her tremors made her uncomfortable and she no longer felt like dressing up and socializing with people, something she considered pivotal to her identity before the illness: “I used to be the light of the party, always happy and nicely dressed, now I don't like going anywhere and look shabby”.
Threats to roles associated with identity
An individual's occupation is strongly linked to their personal identity.[16] Managing a new range of physical and emotional experiences that come with the disease alongside accomplishing all professional commitments is difficult for the patients, resulting in threat to their desired social identity and giving up managerial roles at work and home[13],[16] also leading to economic dependence. Patients are forced to give up working on their once-manifested future plans and develop a completely different view of how their life would look like in the future. While some responsibilities seem difficult to conserve, patients try to negotiate and keep certain roles in their lives that are strongly linked to their sense of self. According to Lutz et al.,[16] patients found new ways to continue doing things they love, and while making the decision of continuing engagement in a certain occupational role, participants considered whether the activity was meaningful to how they viewed themselves.
Gender roles are very crucial to one's identity. Patients express losses in their femininity and masculinity.[17] Male patients showed unhappiness with their poor posture, loss of strength and balance, and facing difficulty while getting dressed.[16] Female patients were concerned about their inability to care for their family by taking control of home chores and kitchen duties.[11] In social settings, observable symptoms such as imbalanced gait and uncontrollable tremors were bothersome for both the genders.[11]
Changing family dynamics
Patients need practical assistance with personal hygiene and getting dressed.[17] The disease impacts the autonomy of the patients, making them dependent on their primary caregivers for round-the-clock help.[20] This calls for redistribution and reversal of responsibilities.[13],[21],[22] Individuals, who at one point were the decision-makers of the family, must now resign from such authority positions because of disabling cognitive as well as noncognitive symptoms. This may certainly lead to emotional stress and loss of interest. The patients' deep motivation for remaining the same as before is seen as dynamics of relationships change, where they wish to remain a “partner” as opposed to a “patient” in their personal romantic relationships.[17]
Model of personal, family, and disease dynamics
Health and social changes have a bidirectional and reciprocal relationship.[23] Impact of health on family's well-being and quality of life has been studied, but there is scarce evidence on the gradual change in family dynamics post the disease and effects of the same. The Model of Personal, Family, and Disease Dynamics, as depicted in [Figure 2], attempts to illustrate changes in the patient's personal as well as social identity because of PD in the Indian family context. It also connects the two and depicts changes in the personal identity of patients as well as the transforming interpersonal relationships simultaneously.
The disease leads to a shift in the family dynamics. It impacts the autonomy of the patients, leaving them dependent on their primary caregivers for round-the-clock help. This calls for redistribution and reversal of responsibilities.[13],[21],[22] Caregivers need to make all plans in accordance with the patient and be well equipped for emergencies. Lines of privacy are blurred when patients need practical assistance with personal hygiene and getting dressed.[17] The patients' deep motivation for remaining the same as before is seen as dynamics of relationships change, where they wish to remain a “partner” as opposed to a “patient” in their personal romantic relationships.[17]
Once symptoms of PD have manifested, an individual's identity gets reduced to being a patient. The incurable and progressive nature of the disease fills the patient with hopelessness and a feeling of loss of control. A narrative account of a patient from one of the accepted studies explains how she recognizes herself as Mrs. Parkinson's after her identity being centered on the PD symptoms.[24] Sometimes, well-intentioned family members make remarks out of care that remind the patient of their disability and dependency.[25]
Prior to the diagnosis, the individual is an active and functional member of the society. Fulfilling their roles and responsibilities toward others, they hold a prime position in the family. Traditionally in the Indian context, cooking has been intricately linked to the female gender role and women derive “certain powers of decision-making” when they cook.[26] Men derive a central position in the family by being the bread earners and decision-makers. The locus of control thus lies within them. Along with duties, they engage in recreational activities that bring them satisfaction and joy. These roles give them a sense of purpose and direction in life and contribute to their personal identity.
As symptoms such as tremors, dyskinesia, and disturbed balance start to escalate, previously healthy persons find it difficult to perform everyday tasks with ease. Apart from physical limitations, there exist other contributors such as societal stigma and a threat to roles they previously identified with. Patients may start avoiding social gatherings or, in extreme cases, resign from workplaces in the fear of being mocked, further leading to frustration and isolation. Becoming dependent on others for basic tasks such as walking down the stairs, the patient's sense of self-efficacy is reduced, and the locus of control shifts outside.
While patients' competencies diminish, the household needs still remain in place. This is when other family members take over the patient's responsibilities to keep the family ecosystem anchored. This is initially received well by the patient as they feel cared for. Oblivious to the consequences, carers' overprotectiveness leads to reduced autonomy and untimely dependence of patient on others. Expressed emotion by relatives that include concern, pity, repeated questioning, and suggestions leads to a realization of shift from their old identity and premorbid functioning to an illness identity, hence experiencing a sense of disability in the society.[25] As responsibilities are taken over, the patient is gradually sidelined in the family, creating a new structure that is dysfunctional for the patient's well-being. Concurrently, this shift in family interactions also affects the patient's personal identity as they are no longer in a position of importance in the family.
The aim of the current review was to understand and synthesize the influence of PD on the personal identity of the patients, as well as how this change affects the family as a whole. The three emerging factors that contributed to dissociation of old identity were influence of physical symptoms, influence of society and stigma, and threats to roles associated with their identity. The disease presents treatment-resistant motor symptoms such as gait, mobility, and postural control and balance that eventually cause severe disability.[27] These symptoms being overt in nature lead to stigmatization and alienation in the society. In a study by Posen (2000), Israeli participants explained how “their body acts as a 'traitor' by revealing the disease to the public “[28] Patients express how the physical as well as nonmotor symptoms make it difficult to comply with speed and time pressures, and stressful situations often leading to a block in their mind as well as movement.[29] Diminishing capabilities, both cognitive and motor, lead to forced abandonment of responsibilities and duties appointed to the patient before the diagnosis. This further changes the way things progress in the family environment, leading to other family members taking over important decisions and roles. A loss of identity, abilities, and designated roles, along with alienation and disregard in the family system, may add to the stress of the patient. The developed Personal, Family, and Disease Dynamics Model (PFDD Model) illustrates this process of changing identity and family dynamics, especially observed in the Indian context. It is important to recognize the after-effects of diagnosis and treatment of a disorder, considering the neuropsychological and psychosocial consequences while suggesting individualized treatment plans that are comprehensive in nature. Due importance should be given to the carers and psychoeducation provided about family and disease dynamics as neuropsychological factors play a major role in determining the quality of life of the patients.[30] Importance of maintaining the competence and autonomy of patients by learning rehabilitation and compensatory strategies to prevent untimely deterioration should be explained to the caregivers. Moreover, intervening in the relationship between patient and carer becomes important if signs of dysfunction are foreseen. Keeping the cares in loop and feeling respected is particularly pivotal as most patients are dependent on them for receiving treatment. This includes financial resources as well as assistance in transportation to the hospital. Especially in the Indian context, a large section of the society belongs to a lower socio-economic strata that is unaware of any infrastructural facilities that are available for their help like medical insurance policies and technological advances like online appointments. Aged patients rely on their children who are technologically sound and educated to navigate the whole treatment process for them.
Conclusion The review contributes to the literature by identifying and discussing the impact of PD on the personal identity or sense of self of the patient. The emerging themes led to the development of the Model of Personal, Family, and Disease Dynamics which illustrates different factors that influence the shift in identities and family dynamics. The current findings provide medical and mental health professionals a fairly new direction to take while considering rehabilitation plans for the patients. Therapeutic interventions and individualized treatment plans should be formalized while taking in account the identity and family trajectory discussed.
Acknowledgment
We would like to thank All India Institute of Medical Sciences, New Delhi, India, for the infrastructural support.
Financial support and sponsorship
We would like to thank Department of Biotechnology for the financial support.
Conflicts of interest
There are no conflicts of interest.
References 
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