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
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