The number of people living with complex health care needs is growing. Though the treatment for chronic conditions has improved and people’s life expectancy has increased, the health care system is struggling to provide adequate care that meets peoples’ needs (Rosbach& Anderson, 2017; Spencer-Bonilla et al., 2017).

People living with chronic conditions experience many barriers in their journey through the health care system. The cumulative complexity model (CuCM) describes clinical and social factors that impact the care journey of people living with long-term conditions. The following essay discusses the model’s aspects of treatment burden and illness burden for people living with Parkinson’s disease (PlwP) and depression, analyzing the impact on access, use of care, and self-management of the condition (Shippee et al., 2012).

The essay further investigates approaches to clinical practice that could improve health care delivery for the chosen population group providing “true” person-centered collaborative care (PCCC). Minimally disruptive medicine (MDM) and shared decision-making (SDM) are person-centered frameworks included in the discussion, critically examining barriers that impede implementation into clinical practice.

Parkinson’s (PD) is a neurodegenerative disorder that affects one in every hundred people over 60. Close to 10000 New Zealanders live with this slowly progressive condition that has no known cause or cure (Straka et al., 2019; Neurological Foundation, 2019).

It is characterized by debilitating motor and non-motor symptoms caused by the loss of dopamine-producing brain cells of the substantia nigra (Gopalakrishna& Alexander, 2015). Moreover, one-third of people living with PD have depression (Straka et al., 2019), and symptoms such as fatigue, psychomotor retardation, attention deficit, day-night sleep reversal, weight loss overlap with PD symptoms (EskowJanaurajs et al., 2011).

PD is complex, multifaceted, and unpredictable (Andrews & Dann, 2019), and the CuCM is a valuable tool to analyze how the treatment burden and illness burden of this chronic disease impacts the ability of PlwP to access and use healthcare and enact self-care (Shipee et al., 2012). The model describes complexity as a balance between workload and capacity.

Everyday tasks and life responsibilities define the workload of the patient. The capacity is the ability and resources a person can mobilize to respond to the workload (Rosbach& Anderson, 2017). Over the progression of the disease, social and clinical factors accumulate and increase the workload for the patient. If people cannot respond to the increased workload and balance it with available resources their ability to enact self-care or access and use health care is impacted. As a result, the patient’s health deteriorates, increasing the workload- capacity imbalance (Spencer – Bonilla et al., 2017).

Symptoms of PD and depression are an illness burden that negatively affects the patient’s mental and physical functioning, significantly increasing the patient’s workload and decreasing the capacity to use and access health care and enact self-care.

Motor (e.g., bradykinesia, tremor, rigidity) and non-motor symptoms (e.g., depression, sleep disorders, bradyphrenia, and pain) limit the person’s ability to perform activities of daily living (ADL’s) (SjoerdahlHammerlund et al., 2018). Everyday tasks such as eating, cooking, showering require more work and effort, causing fatigue, frustration, and chronic stress (Andrews & Dann, 2019). For example, the loss of fine motor skills makes it difficult for PlwP to get dressed independently.

In addition, cognitive impairment significantly affects peoples’ life. PlwP find it difficult to multitask, and their ability to plan, organize and problem-solve decreases. As the disease progresses, patients become more dependent on the help of their caregivers.

This increases the workload for the caregiver and has a negative impact on the mental wellbeing of the patients who feel ashamed, humiliated, and worthless (SjoerdahlHammerlund et al., 2018). The inability to cope and manage the impact of the disease compounded by the increased stress and demand of caregiving often leads to strained relationships between the patients and the caregivers, who are mostly family members (Parkinson’s Foundation, 2021).

It is overall challenging for PlwP and their families to make sense of the disease and acknowledge changes in their everyday life and it is essential to counterbalance these changes with resources that boost their capacity to adapt. Some PlwP manage physical and mental challenges by doing things they cannot do anymore in a different way (Smith & Shaw, 2017).

For example, to avoid falls, PlwP uses sound as external guidance or lines on the floor as visual reminders to lift their feet. Replacing buttons on clothing with velcro can enable PlwP to dress independently. Dividing complex work into manageable chunks, doing more mentally challenging tasks in the morning, or placing objects in the same place are helpful strategies that help manage cognitive degeneration (Andrews & Dann, 2019). Further investing in tools, for example, special eating utensils and living environment modifications such as walking rails and accessible showers are ways to assist self-care.

As a result of the physical and mental changes, many PlwP withdraw from society. Studies have shown that PlwP and depression who feel lonely and stressed have an increased risk for severe symptoms, and it decreases their overall ability and motivation to use and access healthcare and enact self-care (Andrews & Dann, 2019; UCLA Health, 2020).

Chronic stress further increases the illness burden, affecting neuropeptide signaling, causing anxiety and depression (Hemmerle et al., 2014). The ability to socialize and build a social network that accepts the patient’s condition is a valuable resource to enhance a person’s capacity (Boehmer et al., 2016).

Therefore, strong social networks that support PlwP with their physical and emotional needs are essential to increase their ability to cope with the illness burden. In addition, connecting and socializing with other people who live with the disease by joining a support group can be therapeutic and enable PlwP to reframe their life and rewrite their life stories (Ortenblad et al., 2018).

It further reduces isolation and creates a place of belonging (Andrews & Dann, 2019). Moreover, exchanging coping strategies can increase the PlwP capacity to manage the illness burden (Anderjack& Mathur, 2020). It is also important to highlight that the health of the caregiver and the PlwP are closely linked, and research has shown that a high caregiver burden score results in negative health outcomes for PlwP (Mosley et al., 2017). Up to 70% of caregivers experience stress, depression, exhaustion and isolation because of their demanding caregiver role (Parkinson’s Foundation, 2021).

Therefore, boosting caregivers’ physical and mental capacity to deal with the stress of caring has a positive effect on the lives of PlwP (Mosley et al., 2017). Daytime-respite care can give carers some “time out” for self-care, and spending time with other caregivers can be uplifting and therapeutic. In summary, the symptoms of PD and depression are a significant illness burden that impacts PlwP ability to access, use and enact self-care.

Besides the burden of illness, PlwP and depression experience the burden of the treatment itself as they have to engage with many different health care services and therapeutic modalities (May et al., 2014). During the early stages of the disease, the treatment does not significantly impact everyday living, but as the disease progresses, the burden increases (Tan et al., 2021).

A significant treatment burden for PlwP and depression is managing a complex medication regime (Andrews & Dann, 2019).  As the symptoms worsen due to the loss of dopamine-producing cells and the loss of the effect of PD medications (wearing off) over time clinicians, prescribe more medication (Normalisation Process Theory) (Jenner, 2015; Rosbach et al., 2017). Managing more medication requires more time and effort. Patients and their caregivers have to learn about the medications, including their effects and side effects.

They have to incorporate them into their daily routine and evaluate effectiveness which might require adjustments of the medication (Rosbach et al., 2017). Adding to the complexity of the medication regime is that antidepressants can interact with medication for Parkinson’s (EskowJanaurajs et al., 2011). For example, monoaminoxidase inhibitors are contraindicative for people on PD medication, leading to hypertensive crises (Gandhi & Saadabadi, 2021). Medication for PD has to be taken on time to be most effective.

Patients living with advanced PD have to take three to four doses per day (Straka et al., 2019). Additionally, cognitive changes decrease the patients’ capacity to adhere to a medication regime as they forget to take the right dose at the right time. Non-concordance to pharmacotherapy regime in PD patients is a widespread phenomenon, especially for patients with concurrent depression.

Studies have shown that anhedonia and excessive daytime sleepiness are low medication concordance risk factors (Straka et al., 2019). As a result, non-intentional non-concordance can lead to over or under-dosing and can cause serious harm and an increase in symptoms, decreasing the quality of life of PlwP (Straka et al., 2019).

Additionally, the medication regime increases the workload for caregivers who monitor the medication schedule and it can strain the relationship with the PlwP, who might perceive constant reminding to take the medication as “nagging” (Andrews& Dann, 2019). Valuable tools to increase patients’ capacity to adhere to their medication regime are electronic reminders such as the smartphone-based Parkinson’s Tracker app (Tensin, 2020).

It increases the patient’s confidence to manage their medication independently, increasing their ability to enact self-care and decreases stress for the carer (Andrews& Dann, 2019). On the whole, the medication regime is a significant treatment burden for the PlwP and caregivers that can result in medication non-concordance and workload-capacity imbalance.

Furthermore, the side effects of PD medication are a significant burden that decreases PlwP ability to access, use health care and self-manage. Most drugs for the treatment of PD are based on L-dopa, artificial dopamine. Dyskinesia, a side-effect of L-dopa, significantly impacts the person’s ability to perform ADLs. Furthermore, studies have shown that L-dopa adversely impacts PlwPs’ emotional wellbeing, cognition, and communication ability (Wu et al., 2019).

Though dopamine loss is likely related to the development of depression, L-dopa treatment worsens the symptoms of depression (EskowJanaurajs et al., 2011). The side-effects of L-dopa have a detrimental effect on a person’s confidence not only as it affects their ability to perform their ADLs and access and use healthcare, but also because of the way other people view them.

For example, PlwP are often assumed to be drunk because of their unsteady gait, and falls are painful and embarrassing (Andrews & Dann, 2019). As a result, PlwP avoids going out and becomes more isolated, increasing their feelings of loneliness, hopelessness, and motivation to self-care. Overall the side-effects of L-dopa significantly increases the time and effort required to perform ADLs and negatively impact the mental wellbeing of PlwP and there and to cope.

Treatment for PD does not only involve a complex medication schedule but a multitude of different treatment regimes involving many different health care providers (Parkinson’s Foundation, 2021). The treatment schedules with many different appointment types, times, and locations require a lot of time and effort and are a significant burden on the PlwP and their caregivers.

Speech and language therapists, occupational therapists, physiotherapists, dietitians, neurologists, psychiatrists are some of the people that work with PlwP and depression. Motor symptoms make it difficult and time-consuming for PlwP and their carers to get to appointments.PlwP loses their ability to drive a car, and they become reliant on others to take them to appointments. As a result, PlwP and their caregivers feel overwhelmed and exhausted trying to adhere to the complex treatment schedule and access and use the care they need to self-manage their chronic condition (Andrews & Dann, 2019).

The use of mobility aids such as walkers and wheelchairs are helpful resources to assist PlwP and their carers to get to appointments. It is also helpful to schedule appointments during “on” times of the day when L-dopa is working, and symptoms are under control. Scheduling appointments when PlwP feel most energized increases their capacity to be as highly engaged as possible to benefit from the treatment (Andrews & Dann, 2019). In conclusion, the treatment schedule for PlwP is a notable treatment burden that increases the workload for PlwP and their caregivers significantly.

Treatment regimes for PlwP involve preventative care that is essential to slow down the progression of PD but require a substantial amount of time and effort. Research has shown that exercise improves physical functioning such as balance and mobility, reduces non-motor symptoms such as constipation and sleep problems, and increases a patient’s ability to self-manage the disease (Paul et al., 2021).

Furthermore, physical exercise releases endorphins and supports nerve cell growth in the hippocampus that relieves the symptoms of depression, and can be as effective as antidepressant medication (Harvard Health Publishing, 2021). On the other hand, an exercise regime increases the workload for patients as it demands time and effort, and patients struggle to fit exercise into their life (Andrews & Dann, 2019).

Especially patients living with advanced PD can only exercise during their “on” times after taking PD medication. The time when medication is effective becomes shorter as PD advances, and many PlwP prioritizes performing other life tasks during those periods (Andrews and Dann, 2019).

Furthermore, some PlwP report that exercise confronts them with the progressive decline of their physical abilities, making them feel hopeless and frustrated and decreasing their motivation to adhere to an exercise regime (Andrews & Dann, 2019). Overall though preventative care has an overall positive effect on the physical and mental wellbeing, it increases the workload for PlwP.

A further crucial burden for PlwP and their caregivers that affects the access and use of healthcare and self-care management is the loss of employment. As the disease progresses, PlwP has to reduce their work hours, resign, or enter early retirement. The medium time for loss of employment for PlwP is seven years (Murphy et al., 2013).

The loss of income has a significant adverse effect on the families’ financial situation. Furthermore, reduced financial resources make it more difficult for PlwP to access and use health care. Though medication for PD is funded in New Zealand, the cost of travel to appointments and treatment such as physiotherapy can be a financial burden for families (Andrews & Dann). Additionally, most care provided for PlwP is informal, and over time the increased care demand affects the carer’s ability to work (Gumber et al., 2019). PlwP role in society changes, which impacts their confidence level, increases social isolation, and less financial resources limit their ability to access hobbies (Simpson et al., 2013).

Moreover, loss of purpose and identity increases depression and causes further withdrawal, and decreases motivation to enact self-care. Getting involved in volunteer work can counterbalance the negative impact work loss has on patients’ mental well-being. Doing something for someone gives people a purpose and meaning in life; it connects them with other people and increases their self-worth (Andrews & Dann, 2019). Overall the loss of employment has a socioeconomic and psychological burden that negatively impactsPlwPability to access and use health care and enact self-care.

PCCC, including minimally disruptive medicine and shared decision making, can reduce the treatment and illness burden of PD and depression and enable PlwP to access and use health care and enact self-care. PCCC is personalized, coordinated, and enabling care that treats patients with dignity, compassion, and respect (The Health Foundation, 2016). In PCCC, the focus is on the client’s life and health goals. It puts the person and their life story in the center and actively involves them in the decision-making process about their care (HakanssonEklundet al., 2019).

An aspect of PCCC for PlwP and depression is the timely and proactive delivery of care. The majority of care for PlwP is reactive, and treatment is provided after a problem has arisen, e.g. a fall. A proactive approach that detects early warning signs, for example, increased near falls, could decrease treatment and illness burden for the PlwP.

Early warning signs enable PlwP and everyone involved in the care to take preventative measures, such as adjusting medication or modifying the home environment to decrease the risk of harm (Bloem et al., 2020). Another intervention that would provide person-centered care is precise medication prescription.

In most instances, medication for PD is still prescribed as “one size fits all”. The right medication tailored to the individual and their personal needs and preferences would reduce the treatment burden of the medication regime (Bloem et al., 2020).

MDM is a person-centered approach that tries to “fit” healthcare into the patient’s life by imposing the smallest possible treatment burden. The delivery of health care services for PlwPclose to home would reduce travel time and the cost of access to health care.

Clinicians make decisions regarding peoples’ care during 15-20 minute clinical appointments that only provide a snapshot, but do not give an insight into the challenges we face in their home environment.PlwPand their families could greatly benefit from consultation and assessments provided in patients’ homes to assess the impact of the disease on their everyday life. It would, in addition, decrease the burden of travel (Bloem et al., 2020).

Further, providing a single point of access to care can reduce the treatment burden of PD. The care for PlwP and depression is fragmented across different health care providers, and a single point of access would improve care delivery (Bloem et al., 2020).

A care manager, for example, a Parkinson’s nurse, could support patients to self-monitor and self-manage, coordinate care, and ensure that patients access the proper care at the right time (Tenison et al., 2020). In addition, research has shown that care provided by Parkinson’s specialists results in better health outcomes (Bloem et al., 2020).

Another person-centered approach that reduces the treatment and illness burden for PlwP is integrated care delivery. For example, ParkinsonsNet in the Netherlands is an easily accessible community-based network of allied health professionals specializing in treating patients (van de Warrenburg et al., 2021).

The specialists work collaboratively to provide personalized care in partnership with the PlwP, who actively engage in their treatment. To conclude integrated care with a single point of access provided close to home and precise medication that is tailored to the individual’s needs are approaches that would be minimally disruptive, but maximally supportive for PlwP (Leppin et al., 2012).

An essential strategy to achieve MDM has shared decision making. In the SDM process, healthcare decisions are made collaboratively, considering the patient’s preferences, values, personal circumstances, goals, and beliefs (Shippers, 2020).

Studies have shown that PlwP and depression do not feel well informed about the consequences of this chronic condition and feel overwhelmed choosing the best treatment option (Parkinson’s Foundation, 2021). It is not enough to provide them with evidence-based information to decide on a course of action. Patients have to receive evidence-based information that matters to them.

Valuable shared decision-making tools for PlwP and depression are Patient-Reported Outcome Measures (PROMS) and decision aids (Bloem et al., 2020; Bientzle et al., 2020). PROMS are standardized questionnaires, for example, quality of life questionnaires that the PlwP complete that measure their health experience (e.g. management of symptoms, ability to perform ADL’s) (Damman et al., 2019).

This tool supports the shared decision process and assists the PlwP and their clinician to find the optimal treatment option (Bloem et al., 2020). Decision aids include lists of frequently asked questions that patients consider before treatment decisions, including a value clarification tool that helps the PlwP identify which option they prefer.

It is important to note that those tools are ineffective if used by burned-out and time-poor clinicians who are pressured to be efficient and try to tick boxes without any empathy (Kunneman et al., 2019).

To conclude, the symptoms of PD and depression are a significant illness burden that affects PlwP and depression’s ability to access and use health care and enact self-care. The complex medication regime, including the side effects of PD medication, is an additional burden that increases with disease advancement.

Moreover, the loss of employment puts a financial and psychological burden on the PlwP and their caregivers, who have to adhere to a complex treatment regime with many different appointment types, times, and locations. The treatment for PD includes preventative care that is essential to slow down the progression of the condition.

Aspects of PCCC that could improve the ability for PlwP to access, use health care and enact self-care are timely and pro-active care delivery with the use of early warning signs and precise medication.

Providing health care services in the home environment is another person-centered intervention, and offering a single point of access to health care and providing integrated care could significantly reduce the treatment and illness burden for PlwP and depression.