The pandemic of loneliness in Parkinson's: worrisome expansion during the COVID-19 pandemic
This week’s blog on loneliness comes from our own Indu Subramanian MD who is speaking this week on this topic at the annual International Movement Disorders Congress.
Myth #1: Social isolation and loneliness are the same thing:
Social isolation has been defined as the lack of integration of people into their social environment. Living alone, possessing fewer social network ties, and minimal social contact are all potential warning markers of social isolation. Measuring social isolation has involved an objective quantifiable approach to establish a lack of social contact and smaller social network size. Historically, social isolation has been defined by measures of household content, marital status, and numbers of friends. Loneliness, in contrast, is an undesirable subjective emotional state in which there is a perception of social isolation, or the “felt” experience of being lonely. Loneliness has also been described as the dissatisfaction with the discrepancy between desired and actual social relationships. It is related to “unfulfilled intimate and social needs”.
Myth #2: I am happily married- there is no way I can be lonely:
Researchers have identified three dimensions of loneliness reflecting the particular relationships that are missing. Intimate, or emotional loneliness is the yearning for a close confidante or emotional partner. Relational, or social, loneliness is the longing for close friendships and social companionship. Collective loneliness is the need for a network or community of people who share one’s sense of purpose and interests. Loneliness can be felt if any one of these dimensions is not satisfied and hence it is possible to be happily married and still feel lonely. Health care providers need to be vigilant about these spheres of loneliness so that they can seek and help treat patients who are at risk for getting lonely in any of these unmet arenas of social contact. We all need someone to confide in or a group of people with a like purpose in which to belong. Belonging to a Parkinson support group can be helpful in this regard.
Myth #3: Social isolation does not impact quality of life in people in 2020 since there is so much technology and people really do not really need other people:
In aging populations there have been comparisons in the literature of social isolation being shown to be as detrimental to health as smoking or obesity. One key study reported the increased likelihood of death was 26% for reported loneliness, 29% for social isolation, and 32% for living alone. A review of the literature on social isolation in aging revealed a detrimental impact on depression, cardiovascular risk, and well-being. To put it another way, social isolation is as bad for your health as smoking a half a pack of cigarettes a day or of being obese. These issues can be very important for caregivers as well. We all need social connection. Veterans are particularly at risk for social isolation and loneliness as it can increase the risk of depression, anxiety, substance abuse and risk of suicide.
Being Lonely is as bad for a person with Parkinson’s (PWP). The scale of this could be comparable to the benefit of exercising 7 days a week for 30 min per day.
Myth #4: Health care providers are good at identifying social isolation and loneliness. PWP are good at disclosing that they are lonely:
There are a multitude of reasons for social isolation in PWP and their caregivers. In some parts of the world, PD itself is thought to be an “old age illness,” in the Swahili language for example and a dishonor to the PWP’s entire family. There can be a stigma associated with PD in general. Some patients may find it difficult to communicate due to a soft voice and slurred speech. Masking of faces ( lack of animation of facial muscles) may lead to misunderstanding during non-verbal communication. PWP may be embarrassed to be seen in public due to tremor or dyskinesia. Some people may have further embarrassment to go to restaurants because of drooling and difficulty handling utensils. Due to unpredictable bladder and bowel issues including incontinence, PWP may need to plan outings around their restroom breaks and consequently want to stay in the confines of their own homes. PWP also may find outings disrupted by the need to use a walker or cane, or the need to pause and take pills multiple times per day. Difficulty commuting due to an inability to drive or ambulating for long distances is another limiting factor. PWP may feel immobile due to issues of poor balance, freezing of gait, or a perceived risk of falling. This is especially troubling in climates with snow and rain. Apathy and depression can also contribute to further decreased motivation to frequent social functions or to engage actively while in attendance. There has been little study of social isolation in Parkinson’s disease. A study by the University of Victoria/Parkinson's Victoria found that 55% of PD patients felt socially isolated. There was a study on loneliness in 70 caregivers of PD patients and 45 % of the sample scored in the “lonely” range. Depression correlates with social isolation in PD. Health care providers should become more proactive with screening. Since there is a stigma associated with being lonely and patients may be averse to asking for help in this arena specific screening questions should be developed. It has been noted that men have a harder time acknowledging that they are lonely and hence asking for help.
Dr. Subramanian along with Dr. Laurie Mischley and Josh Farahnik performed a study looking at a large cohort of PWP. The Complementary and Alternative Medicine in PD (CAM Care PD) study was designed to identify modifiable variables associated with the rate of patient-reported PD severity and progression. 1,527 participants with PD were available for this analysis. Individuals who responded “True” to the statement, “I am lonely” reported approximately 55% greater PD symptom severity over time. The higher the quality of life score, the more likely the participant was to say they had a lot of friends or be partnered or married. The lower the QoL score, the more likely they were to report being lonely. Our study was a prospective, observational internet-based study that was designed to identify modifiable lifestyle variables associated with the accumulation of patient-reported symptoms over time. We found that being lonely is as bad for PWP as the beneficial effects of exercising 7 days a week for 30 min per day. Lonely PWP reported greater symptom severity for all 33 symptoms measured. Not unexpectedly, the greatest discrepancies between lonely and non-lonely individuals were found with social withdrawal/loss of interest, motivation/ initiative, depression, and anxiety. This data is being highlighted as a top abstract at the Movement Disorders Society Congress 2020. It is currently in press at NaturePJParkinson journal.
This patient centered study is continuing!! We are trying to learn about COVID-19 and it’s effects on PWP. We urge all PWP to get involved by going to: https://bastyr.edu/research/studies/complementary-alternative-medicine-care-parkinsons-disease-cam-care-pd
Loneliness is a key determinant of quality of life in PWP.
Myth #5: Even if I am lonely, there is nothing that I or my doctor can do to help me:
Social prescribing can break the downward cycle of social isolation and worsening PD.
Social prescribing is a new concept in which clinicians recommend or prescribe resources or activities in the community to help patient develop healthy social connections. For example the Togetherness Program at CareMore includes home visits, weekly phones calls and connecting patients to existing social programs in the community, The Veteran’s Administration has recently created the “Compassionate Contact Corps Program” using volunteers to call veterans who are lonely and check in on them. Volunteering can help loneliness as well and so it has been proposed that veterans can be paired up with volunteers to make such calls. The National Health Service in the United Kingdom have designed a link social worker prescribing programme that was recently highlighted in an article in the New England Journal of Medicine where they list referrals to group exercise classes, art-based therapies, volunteer opportunities, self-help groups for specific conditions and community activities such as gardening, cooking and befriending as examples of social interventions.
It has yet to be determined whether social isolation itself is the culprit or whether social isolation is a surrogate for apathy, fatigue, anxiety, and other associated PD symptoms. Loneliness overlaps with and can be inherited along with anxiety and depression traits. All three of these issues can coexist and have similar manifestations and hence be confounding. All three issues can have negative impacts on mood and can cause social withdrawal which can then lead to a vicious cycle ultimately making it harder to connect socially and further deepen loneliness and isolation. In recent years, group classes and support groups have been increasingly popular in the PD community. It is possible that the social aspects of these programs could be contributing to their perceived benefit by participants. Outside of the COVID-19 era, there are numerous strategies for promoting activities that encourage social engagement such as boxing, dancing, karate, yoga, meditation group classes, group walks, music classes, and art classes. Book clubs, movie clubs, and other discussion groups might be helpful. Certainly, live in-person support groups that are specifically focused on PD can also be instrumental in providing social connection and support.
During the COVID-19 era, social distancing can significantly worsen social isolation. The “shelter in place” interventions may put a population of vulnerable patients at increased risk for poor outcomes due to a diminished ability to socially engage and exercise. Social distancing intended to prevent the spread of this and future pandemics is expected to put a strain on burned out caregivers who also may be socially isolated. New interventions such as virtual support groups using technology where patients can visualize one another on a screen or virtual exercise classes may be a critical source for human connection. A virtual happy hour or tea party may be helpful to keep patients connected. Proactive phone calls to patients from fellow patients, support group leaders, volunteers or health care providers may be a critical link to the outside world for PWP who may lack a computer, smart phone, internet connection (due to cost or remoteness) or who may be technologically-challenged.
The pandemic of social isolation and loneliness is a mounting concern in our society today and there has been a call to action in highlighting this as a major public health concern akin to a pandemic. Compounded with the Parkinson pandemic, this call to action should be intensified. The synergistic COVID-19 pandemic with the need to socially distance, on top of these other two pandemics, may have the dire consequence of diminishing quality of life, social satisfaction, and exacerbating disease severity in individuals living with PWP.
We hope that PWP and their families will be proactive about staying socially connected despite the pandemic and reach out for help if they feel isolated or lonely. We are running a virtual support group through the PMD Alliance that is open to anyone who cares about PWP. All talks to date have been archived to Youtube for viewing later as well. https://www.pmdalliance.org/social-distancing-coronavirus/
Social connection is a universal human need. We urge you to pick up the phone and reach out to someone who may have been forgotten and may be lonely or socially disconnected. It could be the only human contact that the person may have had in a long time and could make a world of difference.
This blog is brought to you by Michael S. Okun and Indu Subramanian.
To read more books and articles by Michael S. Okun MD check Twitter @MichaelOkun and these websites with blogs and information on his books and http://parkinsonsecrets.com/ #EndingPD #ParkinsonPACT #Parkinsonsecrets and https://www.tourettetreatment.com/
He also serves as the Medical Director 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