SPARK! Panel Featuring Dr. Bruce Miller and Brain Support Network

Brain Support Network was proud to co-host with Family Caregiver Alliance (caregiver.org) a panel discussion following the movie “SPARK!” about Robin Williams and Lewy body dementia (LBD).  Featured panelists were Bruce Miller, MD, neurologist and director of the Memory & Aging Center, UCSF; Dianne, caregiver to her late husband Gary; and Denise, caregiver to her late father Harry.  Both Gary’s and Harry’s diagnosis of LBD were confirmed through brain donation, arranged by Brain Support Network.

The recording of the LBD panel is now available. 

“Uncertainty fuels anxiety” (Washington Post)

The uncertainty many of us feel about the pandemic reminds me of the uncertainty many of us face in caregiving situations.  We don’t know what’s going to happen next.  According to this recent Washington Post article, uncertainty fuels anxiety and can leave us exhausted.
Here’s an interesting excerpt about being flexible in how you cope:
“[The] people who cope best with uncertainty are the ones who have a more flexible coping style.  … ‘Sometimes fixing the problem is good, sometimes being proactive is good, sometimes managing your emotions with self-care is good, and in some cases even avoidance can be fine.  But doing the same thing regardless of the situation is not going to work.  In uncontrollable situations, focusing on what you can control, like your reactions, will be best.'”
A few strategies are shared, including:
  • taking a day at a time
  • breaking down the problem into its component parts and try to find ways to deal with those specific parts
  • cognitive behavioral therapy
  • viewing uncertainty as a challenge, rather than as a threat

Health
Uncertainty fuels anxiety, causing your mind to conjure up scary scenarios. The pandemic can magnify the angst.
By Christie Aschwanden
Washington Post
September 12, 2020 at 7:00 a.m. PDT

“The Unsung Longevity Factor of Social Connection” – webinar notes

I first heard about the negative affects on health of social isolation at an atypical parkinsonism caregiver conference we organized several years ago. People who are socially isolated have mortality rates similar to smokers and twice the mortality rates of obesity. The advice given by the conference speaker was that we should do all that we can to address isolation — whether we be caregivers or those with a neurological disorder. This is especially important because caregivers tend to become isolated and those with atypical parkinsonism disorders tend to become isolated.

Recently, I came across an early 2019 talk on a similar topic — “The Unsung Longevity Factor of Social Connection.” The speaker was Amy Yotopoulos, who was then with the Stanford Center on Longevity. The focus was on the physical and mental health affects of loneliness and social isolation. On the flip side, people who are socially connected are happier, healthier and live longer.

Ms. Yotopoulos addresses how we can make more health-enhancing social connections. Here’s an excerpt from her talk about what three “action steps” can create more connection in our lives:

#1 Prioritize social engagements in your own life and make it a healthy daily habit. (As important as physical exercise. Examples – text a friend; take in neighbor’s garbage.)

#2 Be intentional and make it personal for you. Don’t put it on autopilot or wait for it to happen “naturally.”

#3 EASE back in to these 4 steps to end loneliness: (from “Loneliness” book by John Cacioppo and William Patrick)

— Extend yourself: do it safely, a little at a time

— Action plan: recognize that this is hard; ask people about themselves; get others talking about their interests. You don’t need to hit it off with everyone.
Commit to having 6-8 conversations with someone. See past your differences. Don’t worry about rejection.

— Seek (or select) collectives: find groups with similar interests, activities, and values. That makes it easier to connect.

— Expect the best: having a positive outlook about the outcome will make it easier to act.

Granted these suggestions were pre-covid but I think nearly all of the suggestions are applicable to our lives during the pandemic. So much can be accomplished over the web, over the phone, or in a physically-distanced setting.

The recording of the talk is available here.

My notes from the talk follow.

Be sure to check out the questions and answers at the bottom. The speaker answered this question — “How to help older, retired men who have few friends, not interested in volunteering, and not interested in making new friends?”

Best,
Robin
————————————–

“The Unsung Longevity Factor of Social Connection”
Webinar sponsored by Stanford Health Improvement Program
Speaker: Amy Yotopoulos, Stanford Center on Longevity
January(?) 2019

Notes by Robin Riddle, Brain Support Network

We can keep people happier, emotionally-engaged, and mentally sharp through purposeful activities and meaningful interactions with others.

We are inherently social beings. We need each other to survive. We all want to be connected and to feel connected.

This talk will address:
* Risks of social isolation
* Benefits of social connection
* How to improve your relationships with social connection

Social isolation is deadly. Feeling socially isolated is associated with:
* 29% increased risk of coronary artery disease
* 32% increased risk of stroke
* 64% increased risk of developing dementia
* 26% increased risk of death
* and increased risk for high blood pressure and addiction

Terms:
* Social isolation – objective
* Loneliness – subjective; self-reported; can be around others and still feel lonely

People who are isolated or disconnected have a mortality rate that is three times as high as those with more and deeper social ties. Twice the mortality rate as those who are obese. Mortality rate is the same as those who are smokers (smoking 15 cigarettes or more a day).

Look at all the things our society (public health work) has done for smokers and the obese but how little we’ve done for those who are isolated.

Like obesity, this is stigmatized. People feel ashamed to admit feeling lonely or being isolated.

This is an issue for all ages, not just older adults. The prevalence of loneliness is highest among adult freshmen.

“During my years caring for patients, the most common pathology I saw was not heart disease or diabetes; it was loneliness.” — Dr. Vivek Murthy (surgeon general, 2014-2017)

In the UK, there is a minister of loneliness. They recognize long-term health effects.

Why are we becoming more disconnected? Decrease in meaningful relationships and purposeful activities.

Research showing we are more alone in middle age. More of us are living alone, especially at younger ages.

50% of US adults are single. Marriage rates (and divorce rates) are declining.

Up to 40% of Americans feel lonely, feel isolated from others, lack companionship, and feel their relationships aren’t meaningful. In this group, 54% feels that no one knows them well.

“Sightlines Project:” Only half of Americans are doing all they can to stay socially engaged.

Baby boomers are least socially-engaged of all the adults in the US.

Social networks are getting smaller. When asked how many confidantes they have, “zero” is the most common answer. This is one in four Americans.

Story of Lyft driver who is a caregiver to his father. The driver has no one to care for him. The driver has diabetes.

One consequence of our increased longevity and decrease in social connection is that an estimated 22% of hospitalized older adults are “unbefriended.” aka, kinless older adults or elder orphans. No family or friends to help with medical decisions or visit them.

8 million people in the US age 50+ have no close kin. Women are more likely to be kin-less than men.

Americans increasingly need to rely on friends. We need to cultivate these relationships. Even if we are married or have children, they may not be able to assist us later on. Friends are important.

We are finally becoming aware of the problem. Naming the problem is a first step. Stigma (of admitting loneliness) plays a big role in not getting help.

Stanford-Harvard-AARP study: the lack of social connection among older adults is costing Medicare $6.7 billion/year.

What is social engagement? Quantity – Number of social relationships we have and the frequency of interaction. Quality – Number of people on whom we can depend and can depend on us. Depth of relationships.

Social engagement leads to better health, higher income, employment, and purpose/meaning in life.

10 Domains of Well-being: (Stanford research)
* Social connectedness – most important domain.
* Then, lifestyle behaviors.
* Then, physical health.
* Next is stress and resilience.
* Next is emotional/mental health.
* Others: purpose/meaning, sense of self, finance, spirituality/religiosity, creativity.

Quantity vs. quality of relationships.

Books: “Bowling Alone” and “Alone Together” (affect of technology)

Depth of relationships:
* meaningful conversation
* sense of support
* can you call someone at 4am?
* can you borrow $400?

Socio-emotional selectivity theory (from Laura Carstensen, Stanford): as a person ages, their social goals shift from being knowledge-related to being emotion-related.

Emotional well-being increases with age. We focus more on the positive aspects of our lives, as we age. A large body of research shows that emotional experience improves with age. People are slower to show anger and more prone to see silver linings. They solve emotionally charged conflicts more effectively and are more likely to forgive and forget.

U-shaped curve of happiness. International phenomenon. Also inter-species! We are least happy in mid-life (40s and early 50s).

Book – “The Happiness Curve: why life gets better after 50,” by Jonathan Rauch

“Baby boomers are isolating themselves as they age,” Laura Carstensen, May 12, 2016.

Older adults may downplay the affect of retirement on their social lives and well-being. Retirement can also be a hit to one’s identity.

Boomers might be empty-nesters, they may have millenials living at home, or they may be caring for older parents.

Stanford survey of those who are primary caregivers of elderly relatives —

Percent ages 55-65 who interact with family:
General US population: 64%
Family Caregivers: 82%

Percent ages 55-64 who have family support:
General US population: 69%
Family caregivers: 54%

So family caregivers have more interaction with family but feel less supported by family. Caregivers may have one-directional relationship with the elderly person they are caring for.

Caregivers are more likely to feel lonely and need support from family and friends.

“Dunbar’s Circles”:
3-5 – very close friends and kin; needed for optimal well-being
20 – friends and broader family
50 – acquaintances
150 – familiars (might be neighbors, barista who knows your order, someone you see and chat with at dog park daily)

When inner circle dips below 2 or 3, we feel lonely. This is your body’s way of telling you that you are lacking something. Like hunger or thirst.

You can diversify by:
* type of connection (like the circles)
* age

We miss out by not having friends of all ages (20 years older, 20 years younger).

How do we get inter-generational contact?

Meaningful relationships:
* Friend social support
* Meaningful interactions with spouse/partner
* Family social support
* Frequent friend interactions
* Frequent family interactions

Group involvement:
* Workforce participation
* Participation in community or religious activities
* Volunteer
* Converse with neighbor

Sightlines Project researched these 9 actions (above). Americans are not as socially connected as they were 20 years ago.

We can become more connected by focusing on friendships. This takes time:
* 50 hours before we consider someone a casual friend.
* 90 hours before we consider someone a real friend.
* 200 hours before we consider someone a close friend.

We need to develop supportive friends, which means being willing to be vulnerable as this creates connection and intimacy.

We need to be better at being a good listener, asking good questions, and sharing.

Maybe have a goal of one friend from each decade.

7 in 10 say they can rely on family members when facing a serious problem.

Family more likely to help in time of need, while friends are more likely to help you enjoy life. We need both. “Family” can mean “family we choose.”

7 in 10 married Americans say they share meaningful conversations with their partner at least once per week. Husbands report more meaningful conversations than wives.

There’s an important role for purposeful activities to better health.

Relationships with neighbors are considered an important aspect of social integration. Feeling like you belong. Creates a sense of community.

Only 1 in 3 say they interact with their neighbors on a weekly basis. This has decreased over time.

NextDoor – trying to address this.

Only 1 in 4 Americans volunteers. Similar percentage over the last two decades. This is not a social norm in our culture. Most who don’t volunteer say that no one has asked them to, and they don’t know of opportunities for this.

VolunteerMatch – trying to address this.

Who volunteers?
* Women more than men.
* 40% of college graduates volunteer vs. 9% of those with no high school degree.
* 35-44 year olds – most likely to volunteer, probably at kids’ schools and with kids’ sports. This is a cultural norm for this age group.

Maybe MDs should give a prescription “to volunteer.” Like a flu shot.

Employees think they will miss their paycheck most when they retire. But what do actual retirees miss the most? Their social connections.

Telecommuting and open office plans contribute to feelings of social isolation.

Standing desks (in an open office plan), which allows for more eye contact, reduces feelings of social isolation.

All age groups have declined participating in community and religious activities. Highest drop among those age 55 and older.

Loneliness is contagious and so is kindness (pro-social behavior). One person can infect many others.

“Social fitness training” – doing five acts of social kindness a day. Even smiling at someone. Both givers and receivers were happier. Benefits lasted for months. People began to “pay it forward.”

Meaningful relationships between old and young create a “secret sauce” that can benefit both generations.

Older adults are the only natural resource that is growing.

Our society is age-segregated.

Conflicting research about the effect of social technology on well-being (loneliness, anxiety, depression). Social media and the internet can be both a boon and a problem. Perhaps it’s different for different age groups. Perhaps asking question of “doing what” is more important than “how long.”

We believe that social technology can be beneficial when it enables us to connect with loved ones but can be a detriment when it creates more social isolation or derision.

Even one text can create a connection.

Teens say social media helps strength friendships and provide emotional support, but can also lead to drama and feeling pressure to post certain types of content. (Pew Research, 2018) There are trade-offs.

This is a natural human instinct to build social connections.

Action steps to creating more connection in our lives:

#1 Prioritize social engagements in your own life and make it a healthy daily habit. (As important as physical exercise. Examples – text a friend; take in neighbor’s garbage.)

#2 Be intentional and make it personal for you. Don’t put it on autopilot or wait for it to happen “naturally.”

#3 EASE back in to these 4 steps to end loneliness: (from “Loneliness” book by John Cacioppo and William Patrick)

— Extend yourself: do it safely, a little at a time

— Action plan: recognize that this is hard; ask people about themselves; get others talking about their interests. You don’t need to hit it off with everyone.
Commit to having 6-8 conversations with someone. See past your differences. Don’t worry about rejection.

— Seek (or select) collectives: find groups with similar interests, activities, and values. That makes it easier to connect.

— Expect the best: having a positive outlook about the outcome will make it easier to act.

Take-home points:

1- Research shows that staying socially connected is an important way to increase long-term well-being and longevity.

2- Feeling lonely is a normal response to a vital need. It is your body’s way of telling you to connect more with others. Only you know what your personal RDA of connection is!

3- Remember the two main ways people can reduce social isolation and feelings of loneliness — cultivate meaningful relationships and participate in purposeful group activities.

Questions-and-answers:

Q: Does introvert or extrovert make a difference to how much connection is needed?
A: This is very personal. It could be that an introvert prefers meaningful one-on-one relationships over group activities. What brings you a feeling of joy and connection?

Q: How is loneliness contagious?
A: When people are feeling isolated and lonely, they aren’t reaching out to other people. Others avoid people feeling this way (as this is visible). Those others become more self-conscious about their social connections and therefore less likely to engage with others in the presence of those who are feeling isolated. (Based on “subtle” research by Nicholas Cristakis, now at Yale.)

Q: How to help older, retired men who have few friends, not interested in volunteering, and not interested in making new friends?
A: (Common question, especially from women.) Women have historically been the carriers of the social life in a heterosexual marriage. In our culture, men are not as able to be as vulnerable and open. I’m OK calling a friend, asking her to come over and talk if I’ve had a bad day. Whereas my husband would probably want to talk to me. This is why wives who are widows do much better than men who are widowers as they are not able to reach out themselves.

It’s difficult to be the spouse as we aren’t able to change our spouse’s behavior. Encouraging people to come into the house, if the husband is less able to leave the home. Invite people over.

Most people over the age of 70 have hearing loss. Most either don’t know it or do they know it but aren’t wearing their hearing aides. Untreated hearing loss has a substantial relationship with our social connections. On average, people wait 10 years before getting hearing aides. If people wait 10 years before getting hearing aides, they’ve already lost cognitive ability and brain power. Men are more likely to have hearing loss. So she recommends getting hearing checked and wear hearing aides. The aides are so much better.

Q: Is there research on a reduced ability to converse after prolonged social isolation for years and years?
A: Not that I’m aware of.

Our social interactions are learned behavior. If this is a muscle that gets un-used, it can go away. But it can come back. Start small.

Q: Is the Stanford Center on Longevity researching remote work spaces (like those recently opened in SF and SJ)?
A: We should be but I’m not aware that they are.

Q: I just moved and got divorced. How do I make new friends?
A: We assume that our friends are going to stay with us our whole lives (from high school on, or from college on). There are milestones (moving, starting a new job, divorce, widowhood) that happen throughout our lives where we need to be mindful about making new friends. Important to prioritize this. Go back to the EASE acronym. Start small in outer ring. Select one or two people in the middle space who might have potential; put more time into those people.

 

“Strategies for managing feelings of loss and grief” (Elaine Book, MSW)

This wonderful list of strategies was compiled by Elaine Book, social worker with the Pacific Parkinson’s Research Centre in Vancouver, BC, Canada, in July 2020. This list was shared at a recent WellMed Charitable Foundation teleconference that featured Ms. Book, in conversation with Parkinson’s caregivers. (There is little about this list that is Parkinson’s-specific. Nor is it specific to caregiving.)

Ms. Book’s list includes this quotation:

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” (Vicki Harrison)

There are many good ideas here. The last one resonated with me:

Reframe the loss as a change, not an end to a relationship or ability or role. Notice what has changed and focus on what remains. It can be seen as the closing of one chapter and the opening of another.

Happy reading,
Robin


Strategies for managing feelings of loss and grief
by Elaine Book, MSW, RSW
Pacific Parkinson’s Research Centre, Vancouver, BC, Canada
July 2020


Keep a journal

  • Writing out thoughts and feelings is an effective way to look at what is happening. Writing about your insights and reflecting on them can be empowering, can help you to find fresh opportunities and move in a new direction.  Sometimes writing about your losses can help you gain some emotional distance, make it more manageable and less frightening. Feeling the pain is healthier in the long run than denying the fears, anger, sadness, loneliness or resentment.
  • If you are new to journaling, start with writing down a daily highlight or gratitude. Or use prompts like “What makes me angry or sad or scared” or “What have I learned about myself” or “I found it funny and endearing when the PWP …” or “The unexpected gift I received”. [PWP = person with Parkinson’s]

Establish goals for yourself

  • Facing losses can leave you feeling out of control…try to counteract that feeling by setting goals for yourself like learning a new skill or taking a course or volunteering. Set up a plan that can work, one that is reasonable and rewarding.

Take action to stay healthy

  • Eat well, exercise, laugh every day, take breaks, sleep, maintain spiritual connections, remain intellectually stimulated, socially connected, use stress management and relaxation techniques like breathing.

Mindfulness

  • Grounding practices like yoga, meditation or even walks in nature help to pace yourself.
  • Apps for mindfulness practice – www.headspace.com, 10%happier, Breathe

Surround yourself with those who feed you

  • Be with people whose presence energize you and stay away from those who drain you.  Create a “psychological family “…. the people you turn to in times of crisis and celebration. This circle of support can go beyond family.  The people who are there for you in good times and bad are the ones who will be able to understand the losses of the caregiving experience. They can provide a healing hug. Also recognize the formal resources and support systems that are available to help you if your psychological family needs expanding.

Work together

With your loved one, address and come to terms with the losses and changes in function. A condition can bring you closer for having a shared experience.

Create something new

  • New plans, new connections based on how your life is now. Look for ways to connect with the PWP as he/she is today. Seek out joy in your relationship with the PWP.  [PWP = person with Parkinson’s]

Reflection

  • Think about past challenges in your life and how you navigated through them. Then use those experiences to remind yourself of your courage and strength and possibly use some of the same strategies again. What was helpful and what was not. Trust in yourself that you have the ability to meet the present challenge.

Reframe

  • Reframe the loss as a change, not an end to a relationship or ability or role. Notice what has changed and focus on what remains. It can be seen as the closing of one chapter and the opening of another.

Caring.com’s List of the 8 Best Medical Alert Systems

Caring.com occasionally evaluates the best medical alert systems.  This summer, they took a look at eight systems and said that they were the “best.”  Here’s an excerpt from their blog post:

At a Glance: The 8 Best Medical Alert Systems

Bay Alarm Medical – Best for Customer Service
MobileHelp – Best for Those Without a Landline
Medical Guardian – Best for Premium Features
LifeFone – Best Standalone Mobile App
Life Alert – Best for Industry Experience
Medical Care Alert – Best for EMT/EMD Certified Monitoring
QMedic – Best for Two-Way Communication
RescueTouch – Best for Two-Way Communication

Our family used the Philips Lifeline, which has fallen off the Caring.com list the last couple of years.

You can see the full blog post here:

www.caring.com/best-medical-alert-systems/

Robin