Sociocultural Impact and Quality of Life
Quality of Life (QoL) defined as “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards, and concerns” (WHO) encompasses physical, psychological, cognitive, social, and environmental factors.
As clinical focus on the management of Parkinson’s has shifted to how well individuals are living a specific 39 item Questionnaire (PDQ-39) was developed as a QoL scale for Parkinson’s patients to assess difficulties across 8 dimensions of daily living including depression and social relationships (Parkinson’s UK).
A recent systematic review and meta-analysis of QoL covering 2,707 Parkinson’s patients revealed lower quality of life in most domains especially physical and mental health. Although different QoL measures used, this study highlighted the need for timely treatment (Zhao et al 2021).
Because EOPD affects people at a younger age, in the prime of their productivity, and patients have longer disease progression, it carries its own set of clinical, social, and occupational challenges beyond physical symptoms. A comparative study of 426 Parkinson’s patients using the PDQ-39 scale found that EOPD was significantly associated with worse quality of life scores (Knipe et al 2011).
Recognizing and addressing these challenges requires involvement of the patient, treating physicians, family members, mental health providers, social workers, physical and rehabilitation therapists.
A diagnosis may come at a crucial time in a person’s career. Loss of employment or taking early retirement not only has huge financial implications at a time when individuals are likely to have considerable financial responsibilities but also a negative effect upon social interaction, self-esteem, and sense of identity (Schrag et al 2003). Early dystonia and Levodopa induced dyskinesia, both more prevalent in those with EOPD, can negatively impact the ability to work together with lack of support in the workplace and low mood (Banks and Lawrence 2006).
The burden of Parkinson’s disease extends beyond physical limitations and includes significant psychosocial adjustments as individuals undergo changes to their self-perception and how others perceive them (Salazar et al 2019). A diagnosis of EOPD impacts self-expectations and is associated with greater stigmatisation, sexual and marital dissatisfaction (Schrag et al 2003). In addition to low mood and hypersexuality caused by impulsive disorders linked to medication, sexual dysfunction amongst Parkinson’s patients was described in a 2017 review by Bhattacharya as one of the most neglected non-motor symptoms (Bhattacharya and Rosa-Grilo 2017). Younger people are more likely to experience embarrassment and reluctance to tell others about their diagnosis increasing social withdrawal and mental health problems associated with the diagnosis (Parkinson’s UK; 2016 Younger people with Parkinson’s survey).
Although men are 1.5 times more likely to be diagnosed with PD (Parkinson’s Foundation) it is still a diagnosis affecting many women, often also primary carer for children/elderly.
Menstruation and perimenopause pose challenges for women with EOPD. In a small sample of 19 women data revealed an association between a Parkinson’s diagnosis and worsening of menstrual problems and issues with relationships and sexual problems impacting quality of life (Schartau, Tolson and Fleming 2003). The desire to have children or being pregnant when diagnosed can be a factor in managing fears surrounding the pregnancy, expectations, and future. Half of women experience a worsening of Parkinson’s symptoms whilst pregnant (Seier and Hillier 2017).
Subramarian et al (2022) reviewed the unmet needs of women diagnosed with Parkinson’s and concluded women’s issues especially from a psychosocial standpoint were overlooked. The need for specific self-care strategies considering the unique stages of women’s lives (including menstruation and pregnancy) and guidelines on the use of hormonal treatments with Parkinson’s treatments were raised.
Quality of life for women with EOPD is significantly impacted by psychosocial changes. Although a small sample, groupwork with female EOPD patients in a Tel Aviv Movement Disorders Unit, highlighted concerns with stigma, body and sexual image and personality traits (Posen et al 2000).
The limited research available reveals a need for more investigations into gender differentials and how to support the unique needs of women diagnosed with EOPD.
Once considered a purely motor disorder the range of neuropsychiatric complications associated with EOPD is broad and includes impulse control disorders, and sleep disturbances which are often associated with increased disability, poorer quality of life, worse outcomes, and greater caregiver burden.
In a comparative study of 539 Parkinson’s patients divided into three groups depression was noted as more frequent in the younger group aged 49 or less (Mehanna et al 2014 as cited in Mehanna and Janovic 2019)
Reduced quality of life is a concern for informal caregivers who may give up their jobs, leisure time and social activities (Bhimani 2014) (Smith et al 2019).
Although those with EOPD may not be exhibiting significant physical motor symptoms initially, the strain and worry about the future (Roland, Jenkins and Johnson 2010) whilst caring for young children and/or elderly relatives places a significant burden upon younger age caregivers whether adult partners or indeed late adolescent/young adult children. One study in 2010 revealed that in EOPD young spouses reported more strain from lack of personal resources and lower levels of mutuality and rewards of meaning than spouses over 70. (Carter et al 2010 as cited in Lieknes, Lien and Severinnson 2015).
Midlife can be a period of stress. A 2021 study analysing data over the past four decades on over 28,000 adults noted an increase in psychological distress from early 30’s peaking in midlife (ages 46-53) observing this period as involving a “peak” in career with increased family responsibilities, stress, and reduced leisure time (Gondek, Moltrecht and Ploubidis 2021)
Pathogenesis, Aetiology and Risks
Described more than 200 years ago with clinical characteristics well defined since, two decades of research has yet to determine the precise cause of Parkinsons or the exact biomarkers necessary for preventative treatment.
Parkinson’s occurs when neurons in the brain and nervous system become impaired or die. The hallmark primary motor symptoms of Parkinson’s result largely from the death of neurons in the substantia nigra in the mid brain-critical for motor control. Neurons here produce dopamine, the neurotransmitter responsible for transmitting messages to the striatum to produce smooth purposeful movements, hence loss of dopamine results in abnormal nerve firing patterns and the consequent impaired movements.
The presence of Lewy bodies – deposits of the protein alpha-synuclein at harmful levels in affected brain cells are believed to contribute to cell death (NINDS).
In addition to the degeneration of dopaminergic neurons in the substantia nigra and accumulation of alpha-synuclein proteins, other pathways include mitochondrial dysfunction, neuroinflammation, oxidative stress and further genetic factors (in addition to the SNCA gene making the protein alpha – synuclein) (Wize,Kozubski and Dorszewska et al 2018) (MacMahon et al 2021)
Risk factors for Parkinson’s include age, gender, pesticide exposure which increases oxidative stress and disturbs mitochondrial function (Tanner et al 2011) and brain injury impairing mitochondrial function in addition to disruption of the blood/brain barrier and accumulation of a-syn protein. Also, dairy consumption, nutrition, and weight gain (Chen at al 2007).
Genetics is a risk factor for EOPD, the association between PARK2 gene mutations and EOPD and the tendency for those with PARK2 gene mutations to have slower disease progression (NINDS).
Relevant to Yoga Therapy is the identification of other non-dopaminergic pathways, namely noradrenergic, glutamergic, serotonergic and adenoside pathways and the relevance of BDNF and their role in the non-motor symptoms identified with EOPD.
(more to follow)