Wellness: The Path to Improve Mental Health Issues in Parkinson's Disease
Dr. Subramanian and colleagues including Dr. Chaudhuri, Dr. Mari and Dr. Fernandez wrote a paper along with Dr. Pontone on the barriers to mental healthcare for PWP. Since the paper is not open access and contained some very key information to help PWP and their clinicians, this blog serves as the second of the two part series in which we propose a path to innovating novel solutions (last week we covered the barriers in part 1). Dr. Subramanian and Dr. Chaudhuri will be leading a Task Force on Wellness at the Movement Disorders Society to help create solutions. We know that PWP are eager to have guidance in this arena.
If you are having issues with your mental health, it is important to realize that you are not alone and to tell your loved ones and health care providers about what you are experiencing— so that you can get help. The holidays are a time when many people experience more issues with isolation and mental health: we urge you to check in with your loved ones at this stressful time.
Proposed Pathway to Strategize Solutions for Mental Health Barriers
1. Education: Including disease awareness
Core educational resources in Mental Health and wellness such as patient- and provider-facing resources should be created. We propose that educational videos for patients and providers to increase awareness of mental health issues in PD should be made widely available and also translated into many languages.
2. Empowerment through teachable lifestyle choices:
Wellness strategies to support holistic health include resilience training, enhancing a positive attitude, perseverance, and empowering patients by giving them a sense of agency. A number of self-management strategies are promising but need to include the caregiver and peer support in their adoption. PWP would like an alternative to the pure pharmacological approach to treating their mental health issues. PWP want a solution that empowers them to be more active participants in their own care. Counseling and education on modifiable lifestyle choices including sleep, diet, multi-modal exercise-based strategies, mind- body and social connection should be available to all PWP from diagnosis. There should be an emphasis on early psychological and mental health assessment to allow for effective psychosocial management from the point of diagnosis, longitudinally, through all stages of disease.
3. Realigned Health Care Team Model:
New strategies to address barriers such as limited access to mental health professionals, social isolation, and loneliness have been proposed and some have been spearheaded by patients themselves. These include:
a. 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.
b. Peer-to-peer mentoring where a more seasoned PWP may guide a recently diagnosed patient through their disease trajectory.
c. Health coaches 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).
d. Community health “link workers” who form vital connections to connect patients with social support that are similar to models from other parts of the world (e.g. National Health Service in the UK) through social prescribing( see below)
e. Matching Mental Health providers and allied therapist to serve more numbers of less severe patients and to decrease wait times (eg. Improving Access to Psychological Therapy- IAPT by the National Health Service)
4. Proactive Outreach/Global Dissemination:
Proactive outreach to patients and collaborating with all partners willing to collaborate on this endeavor including geriatricians, primary care doctors, nurses, social workers, caregivers. All providers who can be engaged should be trained in mental health screening, appropriate referrals, and in some cases some first tier MH interventions e.g., starting an appropriate antidepressant. Wellness strategies can be taught and reinforced in group and virtual settings and disseminated to the global PD community.
5. Social Prescribing:
Social isolation and loneliness exacerbate Mental Health issues and are associated with poor quality of life in PD. “Social Prescribing” is when health professionals refer patients to 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. 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 in the UK and has been slowly adopted in other countries eg. The Veteran Administration Compassionate Contact Corps initiative.
6. Self-agency:
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 achieve a higher level of functioning, through self-agency. 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.
The COVID-19 pandemic has severely disrupted the lives of PWP and their care partners. The pandemic has widened disparities in care and the gaps in mental health care have become more evident. We hope to work with patients and their loved ones to truly realign the health care model to include a more holistic and patient-centered approach to mental health— and to wellness for PWP.
To read more books and articles by Michael S. Okun MD check on Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #Livingwith Parkinson’s #EndingPD #Parkinsonsecrets #LessonsFromTheBedside
He also serves as the Medical Advisor for the Parkinson’s Foundation.
To see more on Dr. Indu Subramanian she does live interviews of experts in Parkinson’s for the PMD Alliance.
The blog artist is Jonny Acheson.