Stanford PD Community Blog

Stanford Parkinson's Community
  • Home
You are here: Home / Webinars - Announcements & Notes / Isolation, Loneliness & Parkinson’s: Discussing a more connected way forward – Webinar Notes

Isolation, Loneliness & Parkinson’s: Discussing a more connected way forward – Webinar Notes

November 2, 2021 By Parkinson's Community Help

The Parkinson Association of the Rockies held a webinar in July about how Parkinson’s disease (PD) symptoms — including physical limitations and changes in motivation/initiative — impact the ability to stay connected.  PD creates the right conditions for social isolation and we need to prevent this.  The Stanford Parkinson’s Community Outreach Program listened to the webinar and are sharing our notes here.

The speaker was social worker Mary O’Hara.  She discussed some interesting research about PD and loneliness:

  • 55% of PD patients feel socially isolated
  • Loneliness correlates with worsened PD symptom severity
  • Depression correlates with social isolation in PD
  • People with PD who feel lonely rated their disease as more severe, rated quality of life as lower, exercised less, and were less likely to follow healthy diets
  • 45% of PD care partners experience loneliness  

Humans are by nature social creatures, and social connection is as fundamental a human need as food, water, and shelter. Social isolation and loneliness have been shown to have detrimental health effects — for instance, increasing the risk of depression and heart problems especially in individuals with PD. 

Check out these two related blog posts on the Stanford Parkinson’s Community Outreach blog:

Social isolation increases risk of falls 

Social isolation worsens PD

The webinar was recorded, and is accessible on YouTube here

My detailed notes are below.

Regards, 

– Sheela Sakariya


“Isolation, Loneliness & Parkinson’s: Discussing a more connected way forward” – Webinar Notes

Webinar Host: Parkinson Association of the Rockies

Webinar Date:  July 21, 2021

Speaker: Mary O’Hara, LCSW, CO

Summary by: Sheela Sakariya, Stanford Parkinson’s Community Outreach

A brief history of loneliness

Loneliness is sometimes romanticized in today’s music, film, TV, and social media.  However, the term loneliness comes from the term “oneliness” which means solitude.  “Oneliness” refers to time alone, and a time to reflect with your deepest thoughts.  Today, the term loneliness has a negative connotation and is associated with feelings of emptiness or absence of social connection. 

Experience of social isolation in PD

  • An objective state of being: the absence of social contact
  • Cut off from social networks
  • Staying at home for lengthy periods of time
  • Little access to services or community involvement
  • Little or no communication with friends, family, and acquaintances
  • Once reconnected, isolation is reduced
  • One can be isolated and content
  • Isolation can lead to loneliness

People are asked, “what is it that makes your life meaningful?”   Friends, connections, and people in your life are what makes life meaningful. 

Science behind loneliness 

The pain of loneliness is a reminder to rejoin the path or to take the risk of facing the predators on our own.  This theory suggests that it’s dangerous to be alone on the social perimeter, so we must reconnect with others.  For those who are unable to connect with others, these are the symptoms that one should look for in such individuals:

  • Fight or flight response
  • Defensive, lookout for danger, attention to negative
  • Feeling vulnerable, rejected
  • Less likely to engage meaningfully
  • Harmful efforts to connect
  • Increased cortisol levels (stress hormones)

The beginnings of isolation/loneliness in PD

Life events

  • Retirement, job change, wealth
  • Death, widowhood, breakup
  • Moving later in life
  • Loss of meaningful roles
  • History of abuse

Gender/Race/Age

  • Over 65
  • LGBTQ+
  • Immigrant, BIPOC, Bi-Racial 
  • Experiencing discrimnation due to age, gender, race, sexual orientation

Psychosocial factors

  • Military veterans
  • Caregivers
  • Low income
  • Lack of transportation
  • Living alone, being unmarried
  • Few friends, strained relationships

Health factors

  • Spectrum conditions
  • Physical illness, mobility limitations
  • Mental health diagnosis
  • Hearing loss
  • Low self esteem
  • Chronic illness

The costs of loneliness in PD

Psychiatric illness

  • Depression and anxiety
  • Alcohol abuse
  • Suicidal behaviors
  • Cognitive decline

Physical illness

  • Diabetes
  • Autoimmune disorders
  • Cardiovascular diseases
  • Obesity
  • Poor hearing
  • Poor sleep
  • Impaired immune system

Benefits of high social connection in PD

Social connection is every individual’s core psychological need.  To define social connection, it is the subjective experience of feeling close to others, and having a sense of belonging that is unrelated to the number of friends/groups.  It’s about having a few meaningful relationships that are reliable and trustworthy. Benefits of social connection include:

  • 50% increased change of longevity
  • Higher self esteem and empathy
  • Stronger gene expression for immunity 
  • Better emotion and regulation skills
  • Lower rates of anxiety and depression

Social connection creates a positive feedback loop of social, emotional, and physical well being where the individual is reinforced to keep socially connected.   

Science of connection in PD

Just like exercise, sleep, and nutrition are important for our body, so is connection! Connection helps us regulate stress and anxiety and can also protect us from cognitive decline. Additionally, when you feel connected to others, it helps your body boost endorphins, ease pain, and enhance overall well being.  The benefits of small talk whether it is with your neighbors or friends are huge!   Another tip is to make your hugs longer – at least a 7-30 second hug which will help release oxytocin (feel-good hormone). 

Interventions for loneliness in PD

Environmental/Community/Policy interventions

  • Co-housing models: individual has an own apartment but there is a shared living space (for ex, the kitchen, the garden, etc.) so you have the opportunity to interact with others in the co-living space
  • The Village movement:  volunteer movement where people help individuals stay connected to community and lets them age in their own home with PD 
  • Making hearing aids affordable

Group interventions

  • PD group programs do exist so please look at your neighborhood PD community. Examples of socially connected PD groups are PD speech therapy groups, PD exercise groups, and PD support groups. These group interactions are really significant in reducing isolation and loneliness.

Individual interventions

  • Force someone who is experiencing chronic loneliness to join therapy – cognitive/behavioral therapy which aims at targeting a person’s negative thoughts and beliefs and reframing them to allow for more positive emotions.

Behavioral interventions

According to recent research, these behavioral interventions below can reduce loneliness:

  • Group exercise
  • Robotic/real pets
  • Mindfulness practice
  • Volunteering
  • Technology platforms
  • Friendly calling/peer companion
  • Home delivered meals
  • Psychotherapy

Social prescribing

In this intervention, the physician will write a script for the individual with PD and this script will keep you socially connected in certain ways and from becoming isolated and lonely. We know that certain parts of the brain are activated due to social connections and we want to preserve those parts of the brain and keep them as strong as possible with PD. 

Social isolation and PD

PD symptoms impact ability to stay connected which not only include physical limitations, but changes in motivation/initiative are also expected.  Fears of falling and fears of tremors in social situations can make the individual more isolated.  Apathy is another common symptom that is associated with PD which means the individual does not have any feelings – they do not have a positive or negative feeling to be social or not.

Additionally, there are various cognitive changes that occur in PD that include memory/speech and the speed of processing information.  These types of changes present yet another barrier for social interaction and pushes the individual towards loneliness and isolation.  

Oftentimes, the individual chooses to stay home as they do not want to explain their situation as it may cause humiliation.  In other words, PD creates the right conditions for social isolation, and that’s what we need to prevent as individuals with PD and caregivers. 

According to research:

  • 55% of PD patients feel socially isolated
  • Loneliness correlates with worsened PD symptom severity
  • Depression correlates with social isolation in PD
  • People with PD who feel lonely rated disease as more severe, rated quality of life as lower, exercised less, and were less likely to follow healthy diets
  • 45% of care partners experience loneliness.

Ways to Reduce isolation in PD

  • Start small commitments
  • Make it as easy as possible to go out
  • Regularly scheduled PD group programs
  • Invite others to be flexible with plans/come to you
  • Share your limitations and your strengths
  • Remind others of what matters most to you
  • Talk about the dangers for isolation
  • Social prescribing
  • Find help through therapy
  • Stop the loneliness feedback loop by reframing perceptions and negative thoughts
  • Address changes in mood, depression, or anxiety

Filed Under: Webinars - Announcements & Notes

  • Home

Categories

  • Monthly List – PD Webinars
  • Webinars – Announcements & Notes
  • Monthly List – Caregiving Webinars
  • Monthly List – Support Groups
  • Support Groups – Meetings & Notes
  • News
  • Research
  • Events
  • Exercise
  • Comment

Top Pages of the Stanford Parkinson’s Community Outreach Website

  • List of Live, Virtual PD Exercise Classes
  • List of PD Exercise Videos
  • Symptoms of PD
  • For Those Newly Diagnosed
  • Support Resources for PD

Featured Posts

Your top three Parkinson’s questions answered by the APDA

The American Parkinson Disease Association (APDA) recently shared the top three questions they are … [Read More...]

National Day of Action – Thursday, September 22, 2022

From the American Parkinson Disease Association, Northwest Chapter (APDA NW), Tuesday, September … [Read More...]

Archive

  • January 2023 (3)
  • December 2022 (7)
  • November 2022 (4)
  • October 2022 (9)
  • September 2022 (2)
  • August 2022 (3)
  • July 2022 (5)
  • June 2022 (6)
  • May 2022 (9)
  • April 2022 (5)
  • March 2022 (8)
  • February 2022 (5)
  • January 2022 (13)
  • December 2021 (7)
  • November 2021 (19)
  • October 2021 (14)
  • September 2021 (12)
  • August 2021 (9)
  • July 2021 (7)
  • June 2021 (10)
  • May 2021 (10)
  • April 2021 (16)
  • March 2021 (8)
  • February 2021 (27)
  • January 2021 (18)
  • December 2020 (18)
  • November 2020 (19)
  • October 2020 (13)
  • September 2020 (7)
  • August 2020 (12)
  • July 2020 (15)
  • June 2020 (13)
  • May 2020 (17)
  • April 2020 (14)
  • March 2020 (14)
  • February 2020 (5)
  • January 2020 (12)
  • December 2019 (10)
  • November 2019 (6)
  • October 2019 (6)
  • September 2019 (7)
  • August 2019 (5)
  • July 2019 (10)
  • June 2019 (3)
  • May 2019 (8)
  • April 2019 (10)
  • March 2019 (5)
  • February 2019 (9)
  • January 2019 (12)
  • December 2018 (2)
  • November 2018 (8)
  • October 2018 (10)
  • September 2018 (2)
  • August 2018 (7)
  • July 2018 (10)
  • June 2018 (9)
  • May 2018 (3)
  • April 2018 (10)
  • March 2018 (4)
  • February 2018 (8)
  • January 2018 (11)
  • December 2017 (11)
  • November 2017 (5)
  • October 2017 (11)
  • September 2017 (10)
  • August 2017 (7)
  • July 2017 (13)
  • June 2017 (10)
  • May 2017 (14)
  • April 2017 (12)
  • March 2017 (17)
  • February 2017 (11)
  • January 2017 (13)
  • December 2016 (4)
  • November 2016 (6)
  • October 2016 (1)
  • September 2016 (11)
  • August 2016 (5)
  • July 2016 (8)
  • June 2016 (4)
  • May 2016 (2)
  • April 2016 (2)
  • March 2016 (1)
  • February 2016 (1)
  • January 2016 (4)
  • December 2015 (1)
  • November 2015 (2)
  • October 2015 (3)
  • September 2015 (1)
  • August 2015 (3)
  • July 2015 (1)
  • June 2015 (1)
  • May 2015 (1)
  • April 2015 (2)
  • March 2015 (4)
  • February 2015 (2)
  • January 2015 (1)
  • December 2014 (1)
  • November 2014 (2)
  • October 2014 (1)
  • September 2014 (2)
  • August 2014 (2)
  • July 2014 (1)
  • June 2014 (5)
  • May 2014 (1)
  • April 2014 (2)
  • March 2014 (3)
  • February 2014 (1)
  • January 2014 (1)
  • December 2013 (1)
  • November 2013 (1)
  • October 2013 (1)
  • September 2013 (1)
  • August 2013 (1)