Mind the gap: Inequalities in mental health care and lack of social support in Parkinson disease

Highlights

• COVID-19 has unmasked unmet mental health needs in Parkinson's disease (PD).

• Disparities in care exacerbate challenges for PD patients from minority populations.

• Wellness strategies may have a role in proactively improving mental health in PD.

Abstract

Inequalities in mental healthcare and lack of social support during the COVID-19 pandemic have lowered quality of life and increased overall burden of disease in people with Parkinson's (PWP). Although the pandemic has brought attention to these inequalities, they are long standing and will persist unless addressed. Lack of awareness of mental health issues is a major barrier and even when recognized disparities based on race, gender, and socioeconomic factors limit access to already scarce resources. Stigma regarding mental illness is highly prevalent and is a major barrier even when adequate care exists. Limited access to mental healthcare during the pandemic and in general increases the burden on caregivers and families. Historically, initiatives to improve mental healthcare for PWP focused on interventions designed for specialty and academic centers generally located in large metropolitan areas, which has created unintended geographic disparities in access. In order to address these issues this point of view suggests a community-based wellness model to extend the reach of mental healthcare resources for PWP.

Introduction

Mental health (MH) issues in Parkinson's drive quality of life and the COVID-19 pandemic has unmasked unmet MH needs of people living with Parkinson disease (PWP). The detrimental effects of COVID-19 include worsening of PD [1,2], disruption of care [3], social isolation, and an increased prevalence and severity of MH complaints [[4], [5], [6]]. The pandemic has exacerbated the already inadequate preparedness of MH resources in PWP [7]. It has magnified chronic issues of social disconnection, loneliness, economic hardship, and barriers to accessing care, especially in minority ethnic populations. For many PWP and their caregivers, this has spiraled into a MH crisis [3,8]. We endeavor to create a framework for systematically and proactively addressing the MH of this vulnerable population during the pandemic and beyond. Specifically, we provide our point of view that discusses barriers to MH care, the disparities among communities of both high- and low-income nations, and the stigma associated with mental illness. We suggest that wellness interventions directed toward patients, caregivers, and communities can mitigate the relative scarcity of mental health resources in most healthcare systems. Our recommendations were developed through a review of 90 common-sense model [9] interviews of key stakeholders, thought-leaders and people living with PD or PWP.

We discuss barriers to improving MH in PD (Fig. 1).

• Lack of Awareness of PD: PD is a neurodegenerative condition that affects a wide range of age groups, diverse ethnic backgrounds, men and women [10]. However, this diversity is not necessarily reflected in research, including clinical trials. Most studies recruit heavily from white male populations, making it unclear how well data can be extrapolated to other groups. Clinical training that focuses upon the stereotypical picture of PD as a disease of aged white males may constitute a disservice to PWP from other backgrounds, leading to delayed diagnosis due to under-recognition [11]. Accuracy of diagnosis is reduced in communities with poor access to specialist care. In some rural communities, over 80% of persons who meet diagnostic criteria for PD may not be identified as having the disease [12].

• Lack of Awareness of Non-motor issues in PD: Non-motor symptoms often go unrecognized, have fewer clinical trials, and have fewer effective treatments which diminishes quality of life and increases disability [13,14].

• Lack of Awareness of Mental Health Issues in PD: A survey of PWP showed that 59% felt “doctors were not sensitive enough about PD-related issues in MH treatment” [15]. Psychological symptoms can be as disabling as motor symptoms and are a key predictor of quality of life [16,17]. MH issues often go undiagnosed because many patients and their caregivers do not know that apathy, depression, or anxiety can be associated with PD [18,19].

Therefore, it is essential to educate both providers and the public about the full spectrum of PD symptoms, including MH issues. Public service announcements illustrating the diversity of patient types and presentations are critical.

• Race: The COVID vaccination campaign has highlighted that issues of mistrust and inequality are deep-seated and pervasive even amongst healthcare providers of color [21]. Black and Latinx patients often distrust providers or avoid care altogether [22]. Minorities may not have equal access to interventions such as deep brain stimulation (DBS) surgery, which is offered less often to black women than other populations. Less than 1% of all DBS in the USA was performed in African Americans [20,23]. There is a lack of inclusion and diversity in research, such that the majority of PD clinical trials do not report race or ethnicity statistics. Among those that do, Black and Hispanic participants each constitute less than 1% of study populations [24].

• Gender: Women with PD are another underserved population with specific MH needs that must be addressed with customized strategies [25]. The burdens of caring for ailing parents, homeschooling children, being separated from grandchildren, and balancing work stresses have all impacted women disproportionately during the pandemic [26].

• Age: Young-onset PD is another unique group with additional MH stressors including the impact of PD on romantic relationships, family dynamics, and employment in this age group [27]. Anxiety and impulse control disorder are more prevalent in young onset PD [28]. Intersectional aspects of identity may compound the impact of a PD diagnosis. A young, black, woman facing economic hardship or migrant farm worker who does not speak English are a few examples of persons who face unique challenges that must be proactively addressed.

• Sexual Orientation: A recent review highlighted the higher burden of social isolation, discrimination and stigma in gay, bisexual, transgender, queer and intersex (sexual and gender minority groups) PWP that could lead to higher MH issues and barriers to care [29].

• Geography: In the current model of care, multidisciplinary teams that include MH support are in urban settings [30]. In the USA, most Centers of Excellence in the Veterans Administration (PADRECCs) and Parkinson Foundations are located in large cities [30]. Broadly similar issues and structures are in place in most developed countries with movement disorders specialists [7]. Lack of transportation (including parking, inability to drive, afford transportation) was identified by 30–40% of PWP as a barrier to MH care [15]. The inequalities of the COVID vaccination distribution between developed and developing countries also affect PWP.

• Disability: As patients become more disabled, they have increasing difficulty accessing care in the urban office setting related to travel. Motor issues have been identified as significant barriers to MH care in 40% of patients surveyed [15]. Indeed, patients with MH conditions can be helped in the community setting where they are living, but such support is often lacking [30].

There is a shortage of PD-focused neurologists worldwide, including in some Western countries. The deficit of MH specialty care for PWP is even greater [30]. A 2018 report by the All Party Parliamentary Group (APPG) in the UK emphasized a paucity of specialist MH services for PWP compared to other neurological conditions, and that people can wait months or years for appointments. Wait time has been further compromised due to the pandemic producing even longer for in-person visits, compounded by limitations on virtual visits. The prevalence of PD is increasing with life expectancy, with numbers expected to double by 2040. This impact will be felt in developing as well as MENASA (Middle Eastern, North African, South Asian countries) [31]. Resultant demands on MH resources related to this projected increase in PD will be considerable [32]. This shortage will only worsen as we are not training enough specialists to meet these needs [30,33]. Haiti and some African nations have a single general neurologist for the whole country and hence lack even one movement disorders specialist [33]. These shortages are associated with potentially serious consequences. For example, many of the medications for MH issues (such as dopamine-blocking agents like antipsychotics) can dramatically worsen PD symptoms and may be inadvertently prescribed to PWP in environments without experience in handling PD.

Many at-risk PWP cannot afford a computer, smart-phone, or internet access [34]. This lack of access to technology is an obstacle for virtual visits, which have been essential during the pandemic and are often proposed as a way of reaching geographically underserved populations. Some may not be literate with this technology. This barrier excludes the most vulnerable populations from the remote care models and inhibits social prescription strategies that have been relied upon during the pandemic [35].

The diagnosis of PD carries its own stigma which is further complicated by MH issues. Social stigma represents a major barrier to MH care that affects populations across the globe, especially for people of color [36]. Mistrust in the medical profession is a barrier to MH care in 20% of a survey of predominantly Caucasian PWP [15], but discrimination can further exacerbate this barrier in Black, South Asian, and Latinx communities [37]. PWP are often embarrassed by MH issues and do not disclose these unless specifically queried [38]. Most PWP will not come forward with impulse control issues, sexual issues, loneliness, or apathy. Importantly, PWP may be more accepting of seeking care for MH issues if they can be identified as related to PD [39]. However, stigma can still affect seeking care from a MH professional even when linked to PD. Ironically, MH providers can provide help in managing the burden of PD and coping with the changes that come with the diagnosis [40,41].Most patients (and many clinicians) see the mind and the body as two separate entities and feel less embarrassment when seeing a neurologist than a psychiatrist or a psychologist [42].

The already precarious access to MH care has been worsened by the pandemic and complicated by the inability of some patients to engage with telehealth visits. Loss of employment (and insurance) further compound issues of cost-prohibitive MH care. Financial barriers have historically been immense. Out of pocket cost of MH care was identified as a barrier in 64% of PWP in a pre-pandemic survey [15].

COVID has unmasked the MH crisis and is compounding the effects of earlier traumas, including Adverse Childhood Experiences (ACES) and their consequences, such as post-traumatic stress disorder (PTSD) [43]. Little attention has been paid to the effects of trauma on PD [44] and the ongoing societal burden of the lingering mental and physical health consequences of COVID. Many PWP have had loved ones pass due to the virus and have not had the chance to grieve due to social distancing. Some PWP have had COVID and are dealing with the physical and psychological after-effects of Long-COVID syndrome [6].

Caregiver MH and burnout is a major issue as well. Social isolation has increased the burden on caregivers both directly in that they have reduced opportunities for respite, and indirectly as increased MH issues in the PWP is associated with greater strain and depression in caregivers [45]. Surveys of caregivers in neurological disease have revealed the tremendous hardship this responsibility creates [46].Specifically, caregiver worries included the risk of contagion and death, hyperarousal symptoms (e.g., irritability, hypervigilance) and avoidance behavior (e.g., denial of the meanings and consequences of the pandemic) [47]. Addressing the needs of caregivers is fundamental to any MH support plan and a gap in research including caregivers in constructing models of care has been identified [[48], [49], [50]].

The current model of health care delivery has led to a lack of focus and time to address MH issues in PD [30]. In many countries with an insurance-driven healthcare system, a fee-for-service model leads to little or no incentive to pursue patient-centered care. MH care in particular tends to be reactionary rather than emphasizing prevention. Most physicians see patients every 6 months for 15–30 min [51]. which is insufficient to address all of the issues in the motor and non-motor domains [51]. Even when identified, MH complaints are often inadequately addressed, with 38.5% failing to receive a referral for MH care [15].During the pandemic, reduced in-person contact and mask use (which obscures expressions) further complicate the identification of disordered mental states.

Neurologists spend most of the visit adjusting medications for motor impairment, while MH issues are often unrecognized until they become a crisis. Erratic time points for accessing MH resources leads to a relationship with MH providers that lacks continuity. Hence, PWP may not have long-term treatment relationships to develop coping strategies to reenforce emotional well-being [52].

We have outlined key gaps and barriers to achieving better MH for PWP and propose wellness as a solution. Wellness has been defined as “The active pursuit of activities, choices and lifestyles that lead to a state of holistic health”, in contrast to the mis-conceptions propagated by the commercialization of the “wellness industry” to the public as including expensive massages or spa memberships [53]. While several solutions for holistic health delivery in PWP have been implemented throughout the world emphasizing multidisciplinary team approaches, most focus on motor issues. Examples such as Parkinson Allied Team Training (Parkinson's Foundation, Global), ParkinsonNet (Netherlands), Hamburg Parkinson Day Clinic (Germany), have been reviewed recently [50]. Other exemplary models including the Davis Phinney Foundation, PD Self, European Parkinson Disease Association and a number of clinics in Germany and the Netherlands have included psychological services. Our model of a wellness solution is illustrated in Fig. 2 and starts with education and empowerment with the long-term goal of wellness, which is related to improved self-efficacy for PWP and their caregivers. Self-efficacy has been shown to improve quality of life [49,54,55]. The ultimate goal is to support PWP in their ability to participate in activities that are meaningful and to support them in self-management [56].There has been a new focus on the role of patient participation in their own health including adopting a healthy lifestyle that involves regular exercise, an appropriate diet, and involving PWP in medical decisions [57]. PWP want greater focus on clinical care and more research around lifestyle choices [57].

To address health needs of PWP worldwide, core educational resources in MH and wellness such as patient- and provider-facing resources should be created. Educational videos for patients and providers to increase awareness of MH issues in PD should be made available and translated widely.

Wellness strategies to support holistic health include resilience training, enhancing a positive attitude, perseverance, and empowering patients by giving them a sense of agency. These tools should be available to all, but there has been a lack of research in this area [58]. A number of self-management strategies are promising but need to include the caregiver and peer support in their adoption [49]. There has been a disproportionate focus on pharmacological interventions when treating MH issues in PWP. Many patients would like an alternative, one that empowers them to be an active participant in their own care [59]. Counselling and education on modifiable lifestyle choices including sleep, diet, multi modal exercise-based strategies, mind-body approaches and social connection should be available to all PWP from diagnosis [60]. There should be an emphasis on early assessment to allow for effective psychosocial management from the point of diagnosis longitudinally through to palliative care [18,52].

Novel strategies to address barriers such as limited access to MH professionals, social isolation, and loneliness, have been proposed by PWP and should be considered:

• A social support system such as “mental health check-in buddy” who could be a friend or paired PWP that is assigned to check in through a weekly phone call.

• Peer-to-peer mentoring where a more seasoned PWP may guide a recently diagnosed patient through their disease trajectory.

• Health coaches that may have expertise to guide certain wellness strategies or exercise classes (e.g. Bounce Back program in Canada uses online coaching and a workbook to help guide patients, Rock Steady Boxing in the USA is similar).

• Community health/“link” workers who form vital connections to connect patients with social support that emulates models from other parts of the world as a form of social prescribing described below (e.g. National Health Service in the UK) [61] need to be explored.

• Matching MH providers and allied therapists to serve more numbers of less severe patients and to decrease wait times (e.g., Improving Access to Psychological Therapy- IAPT by the National Health Service) [62].

Anticipating the growing MH needs of PWP emerging from the pandemic and beyond, there needs to be proactive outreach to all individuals willing to collaborate on this endeavor. Geriatricians, primary care doctors, nurses, social workers, caregivers and all who can be engaged should be trained in MH screening, appropriate referrals, and in some cases first tier MH interventions e.g., starting an appropriate antidepressant [63]. Wellness strategies can be taught and reinforced in group and virtual settings in the PD community.

Social isolation and loneliness exacerbate MH issues and are associated with poor quality of life [64]. “Social Prescribing” is an intervention in which a health professional refers a patient to social support in their community in order to improve their health and wellbeing. Social prescribing strategies in which vulnerable patients can be identified proactively need to be explored in PWP [61]. These strategies utilize novel community outreach liaisons such as “link-workers”, mentors, coaches or support group leaders. It has gained traction in the National Health Service [61]in the UK and has been slowly adopted in other countries eg. The Veteran Administration's Compassionate Contact Corps initiative [64].

The ultimate goal of any wellness strategy is to help the patient feel in control of their own health, by making lifestyle choices to achieve a better quality of life and a higher level of functioning, through self-agency. Indeed, empowering patients to become the central active agent (self-agent) in the pursuit of optimal disease management and health, is the pinnacle of the proposed model of the current wellness strategy-illustrated in Fig. 2 as the top of the pyramid.

The COVID-19 pandemic has inflicted a historic crisis on nearly all communities around the globe, severely disrupting the lives of PWP and their care partners. While inadequate preparedness of health systems existed and has been recognized as a gap in the MH needs and wellness of PWP before, the disastrous impact of the pandemic has wrought the MH gaps dramatically wider. Though reeling from the tragedies in the wake of this crisis, we have an obligation to seize the opportunity to create major reform in approaching disparities in care. As we rebuild and move forward, we can use this opportunity to truly realign the health care model to include a more holistic and patient-centered approach to MH and wellness for PWP.