Parkinson's disease is a chronic and progressive neurological condition with a higher prevalence of neuropsychiatric symptoms than in the general population. These symptoms include anxiety, depression, impulse control disorders, cognitive impairment, reduced sleep quality and apathy.
Despite the prevalence of these symptoms, treatment is primarily aimed at improving motor functions. However, it is the non-motor problems which have been shown to have the greatest impact on patient's quality of life. This includes falls, anxiety (a contributory factor in falls), depression and cognitive impairment, with depression being the most frequently identified factor in reduced quality of life (Schrag et al, 2000; 2001; Soh et al, 2011; Pontone et al, 2019; Weintraub and Mamikonyan, 2019). The coexistence of anxiety and chronic illness have been shown to lead to a substantially lower reported quality of life and an overall reduced health status, as well as an increased access to and reliance on healthcare services (DiMatteo et al, 2000).
Factors impacting quality of life
Research has shown that reduced emotional wellbeing and social functioning are at greater levels during the later stages of Parkinson's; however, a direct relationship between duration of disease and impact on quality of life has not been found (Schrag, 2006). It is important that promotion of self-efficacy is encouraged early on in the treatment process, and maintaining an individual's sense of choice and control is vital for continued engagement (Turner et al, 2002). Occupational therapy treatment interventions are needs based on and led by an individual's presenting problem, regardless of stage of disease (Morris et al, 1996).
Mental health
Both anxiety and depression can appear before the motor symptoms of Parkinson's disease are recognised and diagnosed, with anxiety affecting 12–57% of patients with Parkinson's disease (Shrag, 2006). Up to 40% of these individuals report that their levels of anxiety interfere with their ability to maintain daily functioning to a satisfactory level, and around one-third of patients with Parkinson's disease experience clinically-significant anxiety compared to 15% in the general population. Despite this, anxiety remains an under recognised, under diagnosed and under treated element of the disease, even though it is associated with adverse outcomes, such as diminished overall health status and increased healthcare service use (Schrag, 2006; Lutz et al, 2016; Rocha and Teixeira, 2018; Yang et al, 2019; Weintraub and Mamikonyan, 2019.)
‘Nigrostriatal dysfunction alone is not sufficient to explain depressive symptoms in Parkinson's disease’ (Schrag, 2006: p152) but as previously mentioned, reduced social functioning leading to a decline in societal participation and an increase in withdrawal and isolation are likely to result in additional reactive depression symptoms (Schrag et al, 2001). The key focus of occupational therapy is improving a person's ability to engage in meaningful activity, and therefore therapists are ideally placed to address issues of functional decline or reduced engagement and the associated effects on mood (Dixon et al, 2007; Foster et al, 2014).
Despite the prevalence of mental health symptoms, treatment for Parkinson's disease is primarily aimed at improving motor functions
There is a negative interplay between non-motor and motor symptoms, whereby feelings of apathy, low mood and anxiety can have a detrimental effect on motor symptoms. This in turn can then lead to an increase in reactive depression symptoms, social isolation, withdrawal and feelings of reduced worth (Schrag et al, 2000). Although pharmacological approaches can be used to treat the emotional and psychological symptoms, medications such as benzodiazepines need careful consideration, particularly in an older population.
Treatment outcomes
Patients with Parkinson's disease are at an increased risk of falls (Gray and Hildebrand, 2000; Balash et al, 2005) and the adverse side effects of benzodiazepines can exacerbate this as well as increase cognitive impairment. Cognitive behaviour therapy (CBT) is an effective treatment for mood disorders and anxiety management, and has been shown to have lasting benefits for people with Parkinson's disease (Rocha and Teixeria, 2018). Given that studies have found benefits from therapeutic approaches, and the possible detrimental side effects which may be caused by standard pharmacological treatment, there should be a greater importance placed on therapeutic treatment strategies. There is evidence to suggest that CBT treatment approaches may be helpful in targeting a multitude of non-motor symptoms including poor sleep, negative attitude towards self and impairment in function—which, as previously mentioned, has the greatest impact for patients on reduced quality of life. Furthermore, the greatest treatment outcomes are produced when mental health provision is embedded in the treatment approach and not seen as an optional or additional line of treatment (Dobkin et al, 2019; Pontone et al, 2019).
Occupational therapy
So how can occupational therapy (OT) help improve treatment outcomes for people living with Parkinson's disease? Occupational therapists are specialists in promoting health and wellbeing through enabling patients to participate in activities of everyday life. In a Parkinson's population, this can include but is not limited to (Foster et al, 2014; Rao, 2014):
- Mobility issues
- Self-care
- Domestic and leisure tasks
- Social engagement
- Cognitive impairment
- Fatigue management
- Sleep difficulties
- Handwriting
- Mood and motivation changes
- Maintenance of role and function
- Assistance with changing of relationship dynamics.
Approaches to occupational therapy
Given that Parkinson's disease impairments are multifactorial, research has shown that multidisciplinary, patient-specific interventions are the most beneficial in promoting quality of life, with OT being an integral and not supplementary part of the treatment process (Johnston and Chu, 2010; Rao, 2010).
It is of little surprise that patients with a higher level of engagement in therapy usually have a greater response to treatment (Glenn et al, 2013). Research has consistently shown that patient behaviour cannot be successfully reformed unless patients are engaged in treatment and motivated for change. This is best done through a reduction in the hierarchical healthcare relationship and an established and equal patient–therapist partnership, whereby the patient feels empowered and in control of their goals. This is best achieved through recognition of patient motivating factors, promotion of autonomy and therapy delivered through meaningful activity (McCarley, 2009).
Some of the most frequently cited challenges that impact on a patients' reduction in feelings of control are changes in meaningful life roles (within the work, home or social environment), reaction and adjustment to illness (particularly diagnoses of chronic conditions) and adjustment to lifestyle changes which can be brought about through ill-health or age-related problems (Bodenheimer et al, 2002; Curtin et al, 2002; Schatell and Witten, 2005).
Empowering patients
Patient-centred care is becoming increasingly recognised as a crucial factor in the perceived quality of treatment. A study of Parkinson's patients and their caregivers looked at the unmet needs of this patient population. There was a desire for increased provision of emotional and psychological support, as well as an increased patient role in clinical decision-making.
It was also highlighted that there is often a significant lack of interface and collaborative working from the multidisciplinary professionals involved in their care, leading to repetition and duplication of information. There was call for equality of healthcare input by different professions (van der Eijk et al, 2011). When working with a patient population that have higher levels of anxiety and apathy, it is crucial that health professionals use a patient's strengths and personal motivations to engage them with the treatment approach. Patients suffering from affective disorders, with anxiety and depression being the most common, are three times more likely to be ‘noncompliant with medical treatment recommendations’ (DiMatteo et al, 2000: p2101) and therefore associated treatment responses are less efficacious.
Non-compliance
What is ‘non-compliance’ and why do patients not engage in or follow a treatment plan? A lack of compliance with a treatment plan can include such things as failure to take medication as prescribed, frequent cancelling or non-attendance of appointments, continuing to engage in behaviours or lifestyle choices which increase levels of risk or poor-health, forgetting or refusing to follow at-home advice or failing to engage in prescribed activities or exercises (Donovan and Blake, 1992).
The reasons for this are often complex and polygonal. It can be that a patient is unable to engage due to levels of apathy or is suffering from an affective disorder, and improving this is a progressive step towards increasing levels of therapeutic engagement and treatment adherence. A lack of confidence in treatment efficacy can also hinder concordance with treatment and significantly affect a patient's willingness to maintain engagement (DiMatteo et al, 2000; Lenze et al, 2003).
Treatment delivery which is not done thoroughly, or with meaningful activity in mind, has been shown to have adverse effects on treatment programme adherence and therefore reduced therapeutic outcomes (Ellul et al, 1993). Occupational therapy is beneficial in these cases as it has been shown to yield self-perceived improvement in performance of activities of daily living (ADL) in patients with Parkinson's disease (Sturkenboom et al, 2014). Patients who receive individualised occupational therapy interventions through meaningful activity are likely to experience slower deterioration and maintain a higher level of independence in personal activities of daily living (Leff et al, 2006). In addition, OT has been shown to have a direct improvement on patient-reported quality of life, mood, overall reported health status and feelings of control and these benefits are shown to last past the active treatment time, with benefits still being present at follow up reviews (Graff et al, 2007).
‘Despite evidence which shows that non-motor symptoms have the most detrimental impact on patients' quality of life, a study by the Parkinson's Disease Society in 2008 found that the majority of Parkinson's patients were still not receiving parity of care, with access to occupational therapy being limited’
Providing occupational therapy
So can occupational therapy improve quality of life, treatment experience and outcomes for patients with Parkinson's? And if so, how should occupational therapy be provided?
There is well-documented evidence that OT treatment improves the psychological wellbeing of patients with Parkinson's disease, aids positive behavioural change and increases levels of treatment engagement and adherence (Gauthier et al, 1987; Lenze et al, 2002). Despite evidence which shows that non-motor symptoms have the most detrimental impact on patients' quality of life, a study by the Parkinson's Disease Society in 2008 found that the majority of Parkinson's patients were still not receiving parity of care, with access to occupational therapy being limited (Parkinson's Disease Society, 2008).
Although some research has failed to show definite quantitative benefit from OT input in Parkinson's patient care, anecdotal evidence from both patients and clinicians clearly indicates that the patient-centred approach of occupational therapy, which focuses on promoting participation in everyday life and addresses affective components which are the strongest indicators in reduced quality of life, produces the greatest benefit for patients. People living with Parkinson's may otherwise struggle to engage or could achieve poor treatment outcomes with little residual benefit post-treatment (Morris and Insek, 2007; Playfor and Hindle, 2008).
The provision of occupational therapy should be integrated within the standard approach and be made available from initial appointments to prevent restriction or loss of role, disengagement or reduction in functioning and to promote maintenance of independence (Sturkenboom et al, 2008; Aragon and Kings, 2010). Occupational therapy interventions can take place both individually or in group form. Although often a less-desirable option to patients, group sessions are both financially attractive to organisations and can facilitate knowledge transfer and reduction in feelings of isolation among patients. Although a patient's suitability for group attention needs careful consideration, those struggling with focusing their attention may find a group environment unhelpful (Gauthier et al, 1987; Sturkenboom et al, 2008).
Conclusion
In summary, there is evidence to show that patients living with Parkinson's disease have a decreased quality of life, and this can be exaggerated by feelings of loss of role brought about through reduced engagement in meaningful activity. Occupational therapists are best placed to reduce functional decline and social disengagement and this can not only promote active involvement with treatment but provide improved outcomes with lasting benefit. These positive outcomes are best produced when occupational therapy is integral within the treatment approach and non-motor symptoms are considered with equal importance. Practice nurses are well placed to direct care in Parkinson's disease patients.
KEY POINTS
- Non-motor problems in Parkinson's disease patients are shown to have the greatest impact on reduced quality of life
- 40% of Parkinson's disease patients feel that their levels of anxiety impact on their daily life
- Current treatment is predominantly aimed at addressing and treating motor-symptoms of the disease
- Benzodiazepine treatment for affective disorders in this patient population needs careful consideration due to adverse risks of falls and cognitive impairment
- Patients are caregivers have identified a wish to have increased emotional and psychological support when diagnosed with Parkinson's disease
CPD reflective questions
- Is a referral to occupational therapy considered at early stages of diagnosis to promote engagement and prevent loss of roles and activities?
- How can social disengagement and functional decline be identified by primary care services?
- Are lifestyle adjustments considered and discussed with patients who have a diagnosis of Parkinson's disease?