“Oleh Hornykiewicz, Who Discovered Parkinson’s Treatment, Dies at 93” (NYT)

Austrian pharmacologist Oleh Hornykiewicz died in late May 2020. He believed in the power of research on brains of people who had died with Parkinson’s Disease (PD). He and a colleague discovered that these brains were deficient in the important neurotransmitter called dopamine. And he was among several scientists who perfected the treatment of PD with L-dopa. Today, the mainstay treatment for PD is still L-dopa. This recent New York Times article is about his breakthrough research:


Brain Support Network agrees in the power of examining brains of people who have died with PD and other neurological disorders as a means of finding cures for these disorders. If you’d like assistance in making brain donation arrangements for you or a loved one, check out our webpage.

“Ambiguous loss and anticipatory grief” – Webinar notes

Recently, the Parkinson Society of British Columbia (PSBC) offered a webinar for caregivers on coping with ambiguous loss and anticipatory grief, featuring Trevor Josephson, a counselor with Peace Arch Hospice Society. Mr. Josephson defined ambiguous loss as a type of loss that is unclear or without closure, and anticipatory grief as the feeling that one may experience when expecting a loss or change. He said:

Ambiguous loss can be a response to psychological absence – i.e., a loved one who is physically present but may not be emotionally or mentally available, whether due to dementia, mental illness, drug or alcohol use, or other factors – or physical absence – i.e., a loved one who is physically unavailable or living away from home.

Anticipatory grief may occur before a loss that is impending or imminent, often due to the loss of an ability or relationship due to progressive illness.

Mr. Josephson offered recommendations to caregivers for coping with and managing these feelings. He encouraged caregivers to “re-define hope” in order to “discover new landscapes of hope in a world of ambiguity.” He said:

Do your best to recognize and accept the changing aspects of the relationship. Adjust how you spend time with others, and focus on strengthening bonds with your family and friends. Be open to new connections as well. Increase your comfort with ambiguity and let go of the need to have answers or certainty. Adjust your expectations and see things as “good enough.

The speaker cited multiple books by the author Pauline Boss, MD, including the 2006 book, “Loss, Trauma, and Resilience.” To learn more about Dr. Boss, visit her website, www.ambiguousloss.com.

This webinar was recorded and can be found here:


Though this webinar was offered by an organization focused on Parkinson’s Disease (PD) and the two examples shared were about couples coping with PD, nothing in the webinar is PD-specific. …which is why we are posting the notes here.

Lauren Stroshane from Stanford Parkinson’s Community Outreach website attended the webinar and shared notes.


. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Ambiguous loss and anticipatory grief
Webinar presented by the Parkinson Society British Columbia
March 25, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

The speaker, Trevor Josephson, is a clinical counselor and clinical manager at Peace Arch Hospice Society. He defined ambiguous loss as a type of loss that is unclear or without closure, and anticipatory grief as the feeling that one may experience when expecting a loss or change.

Ambiguous loss can be a response to psychological absence – i.e. a loved one who is physically present but may not be emotionally or mentally available, whether due to dementia, mental illness, drug or alcohol use, or other factors – or physical absence – i.e. a loved one who is physically unavailable or living away from home. Anticipatory grief may occur before a loss that is impending or imminent, often due to the loss of an ability or relationship due to progressive illness.

As Parkinson’s diseases progresses over time, many caregivers find themselves experiencing these kinds of loss and grief, which can lead to feeling isolated. Although discussing these issues is difficult, it is also important for anyone in a caring role.

True for BOTH ambiguous loss and anticipatory grief:

  • A normal reaction to an uncommon loss experience
  • Can compromise relationships
  • Can result in complicated grief
  • May threaten the ability to cope

Many aspects of personhood may be lost: lost aspects of former personality, loss of identity and sense of control over one’s life, loss of meaning in life, and loss of the expected or planned future. Family members may feel frozen, missing the person their loved one used to be, and yet the loved one is still there – just different. Families cope with grief in different ways, according to their cultural, spiritual background, past experiences, and resources available to them. 

Possible outcomes of these feelings can include a sense of sense of hopelessness or helplessness, uncertainty about one’s own identity, depression, anxiety, social isolation, and impeded grief. Complicated grief stretches on for a long time, sometimes years or even decades, and may make it difficult for someone to function.

What can help someone living with ambiguous loss?

The speaker cited works by Pauline Boss, MD, including her 2006 book, “Loss, Trauma, and Resilience.” The goal is to build resiliency to live with ambiguous loss or anticipatory grief long-term, as there may be no solution to make these feelings go away. Sometimes it is necessary to adjust our natural need for control and certainty in life, to accommodate change and factors over which we have little or no say.

What helps?

1. Finding or making meaning: making sense of your losses.
* Name your problem.
* Making meaning is a responsibility – no one else can do it for us.
* Reaching out for and accepting support from others.

2. Understanding the role of control: adjusting the need for control and accepting uncertainty.
* Accept lack of control.
* Decrease self-blame.
* Don’t focus on uncertainty.
* Focus on what you know and can control.

3. Who am I now? Weathering the change of identities: 
* Be honest about the changes in yourself and others.
* Discuss roles and expectations. You can include younger family members in this discussion as well; often, they want to be included.  
* Be open to change. 

Try to avoid negative thinking, such as thinking that you caused the situation, or that you should just “get over” your feelings. It is okay to normalize anger and guilt, but try to express your feelings in a healthy, non-harmful way. Accept ambiguity; practice both/and thinking: rather than feeling one specific way to the exclusion of other feelings, you can feel both love for the person you are caring for AND grief that they are no longer who they used to be.

Case study: Barb and Ed

Barb was diagnosed with PD in 2017. Her early stage symptoms included difficulty walking and tremor. Later, she developed more advanced symptoms such as difficulty eating certain foods and significant fatigue. She started having good and bad days. Her husband Ed is her care partner.

“Being part of a community helps. Staying connected with family and friends.” – Ed

Case study: Sharon and Don

Sharon was diagnosed in 2005 and lived at home with her husband Don, her primary caregiver. She started to have many falls leading to trips to the emergency department, with increasingly serious injuries from stitches, contusions, and cracked ribs, eventually to a broken neck. Don made the difficult decision to move her to a care facility in 2019.

“I really do miss my wife… who and what she was before the Parkinson’s but there’s nothing I can do to change that other than to recall and cherish good memories.” – Don

Redefining hope: discovering new landscapes of hope in a world of ambiguity

Do your best to recognize and accept the changing aspects of the relationship. Adjust how you spend time with others, and focus on strengthening bonds with your family and friends. Be open to new connections as well. Increase your comfort with ambiguity and let go of the need to have answers or certainty. Adjust your expectations and see things as “good enough.”

Advice from members of the audience who have personal experience with these feelings:

It can be hard to get yourself to a new support group due to the fear of the unknown. But think of it as doing something just for you, something necessary, and try to get there. It really helps.

Regular exercise, such as going out for walks, can really improve your mood as well.

Connect with neighbors and friends to prevent yourself from becoming isolated.


  • Naming these feelings makes coping easier.
  • Ambiguous loss is more than just an individual experience; it is imbedded in the community.
  • Ambiguous loss can change relationships with family and friends. Being flexible in one’s thinking style and perspective can help create meaning and hope.


“How to avoid burnout in the middle of a pandemic” – Lifehacker.com

The article describes the symptoms of burnout:  “People who are burned out are often detached from others, feel drained and unable to cope, and lack their usual energy. They also often experience physical symptoms such as headaches or stomachaches.”

Some useful suggestions for avoiding burnout are shared, including:

  •     stay connected with others
  •     shift your standards
  •     set boundaries for yourself
  •     schedule time for yourself
  •     change your environment
  •     move your body
  •     list your fears

I liked all the suggestions except for getting a side hustle (which is why I didn’t list it above).

Certainly this article applies to avoiding “caregiver burnout” as well. The full article is copied below.




How to Avoid Burnout in the Middle of a Pandemic
May 7, 2020, 4:30pm
by Rachel Fairbank

Burnout is defined as a state of emotional, mental and physical exhaustion brought on by prolonged stress. Given the nonstop barrage of stressors these past few months, many of us are probably well on our way to developing burnout, if we aren’t there already.

“Burnout is chronic stress gone awry,” says Sheryl Ziegler, a psychologist and author of the book “Mommy Burnout: How to Reclaim Your Life and Raise Healthier Children in the Process.”

Stages of burnout

The stages of burnout include a honeymoon phase, in which a person devotes extra time and energy to dealing with their stress; followed by mitigation strategies, when a person is crankier than usual but is still trying to juggle everything; followed by chronic stress, a point when people have an even harder time coping and often find ways to detach themselves from others; and finally, by full-blown burnout.

If these stages sound familiar, well, at least you’re not alone. As a society, we seem to be on a path to burnout together. We started in those ambitious first few weeks with big plans: We were going to learn how to bake and knit! After a few weeks of trying to juggle quarantine and work from home and homeschooling and job loss. Now we all seem to be stuck in a phase of chronic stress, either lashing out at the people around us or detaching from the world at large.

“A lot of people are in the second and third stages right now,” Ziegler says. “We are all here.”

That said, there are strategies that we can employ, even in an era of physical distancing and omnipresent fears about our health and safety. These are some of Ziegler’s recommendations for avoiding burnout during a pandemic.

Know the signs of burnout

“Knowing the signs of burnout are really important,” Ziegler says. What stage you might be in will vary, and it’ll look a little bit different for everyone. People who are burned out are often detached from others, feel drained and unable to cope, and lack their usual energy. They also often experience physical symptoms such as headaches or stomachaches.

As Ziegler points out, it’s normal to be stressed and anxious, given everything that is going on. But just because this stress is understandable doesn’t mean we can’t find ways to cope.

Stay connected with others

We may have to practice physical distancing, but that doesn’t mean we can’t be creative about staying connected with others. When it comes to preventing burnout, strong social connections are key.

As Ziegler suggests, in addition to friends and families, lean on online communities that might share some of your concerns. Whatever your situation is, whatever your struggles are, there are people out there who can relate. Make sure to prioritize these connections, as they will help buffer you from burnout.

Shift your standards

It is okay to cut down on the number of hours of school each day or to say no to extra job duties at work. As Ziegler points out, as much as we want to do everything, there just aren’t enough hours in the day. It’s important to be selective about what we take on as well as practical about what we can accomplish, given our constraints.

Set boundaries for yourself

Boundaries are really important, especially in these times. Boundaries can help make your workload and home life a little bit more manageable. It’s okay to say no to things, it’s okay to adjust your expectations, and it’s okay to prioritize what’s most important.

Schedule time for yourself

If we put a meeting on our calendars, we do everything we can to make sure we show up to it. Caring for yourself, in whatever form that takes, is just as important.

“Every day, schedule time for yourself,” Ziegler says. “When we are under stress, we don’t tend to squeeze in healthy things for ourselves.”

So carve out a time for yourself. Put it on your calendar and give that time as much priority as a work responsibility. Your mental health and wellbeing is important.

Have a change of environment

Even small changes of environment can help keep us from feeling overwhelmed. This could be as simple as moving from the living room to kitchen or going for a short walk around the block. Given that we are all at home all the time now, a small change of environment will go a long way toward helping us feel mentally refreshed.

Move your body

As Ziegler points out, there’s a big connection between staying active and maintaining good mental health.

“People have to remember working out is good for your mental thoughts,” Ziegler says. As we are a lot more sedentary than usual, moving can help us stave off some of the effects of abrupt changes in our routines.

Even if you only have ten minutes, it’s worth fitting in a few calisthenics or a quick walk.

Practice mindfulness with your diet

Being at home all day while stressed means a lot more snacking and a lot more unhealthy foods. Unfortunately, although in the short term, reaching for a bag of chips or a carton of ice cream feels good, when it comes to balancing stress, these snacks hurt more than they help. Being mindful about what you are eating will help in the long run.

Power naps are rejuvenating

If you have twenty minutes, consider taking a power nap to boost your energy and productivity. Find a quiet spot, set the alarm and do your best to relax. If it’s hard, Ziegler points out that power napping is something that gets easier with practice.

Early afternoon, when your concentration and ability to focus is suffering, is a good time for a power nap. Twenty minutes is the sweet spot, as 30-60 minutes can leave you feeling more tired than when you fell asleep. Of course, if you’ve got 90 minutes for a full nap, that also works, but that’s harder to carve out of your schedule.

Notice your words

Words have a way of becoming reality. “We have to notice our words,” Ziegler says. Allow yourself to vent, allow yourself to release all your fears and worries, but then find a way to pivot and channel your fears and worries into something productive.

A side hustle can help you feel in control

If you are worried about your job security—or if you have been laid off—developing a side hustle can be a productive way to pick up new skills while also giving you a way to regain control over your situation.

Now is the time to think about what other skills you have you can use to your advantage. If nothing else, this will help you regain a sense of purpose, which is key to weathering periods of potential burnout.

List your fears

There are so many fears and anxieties in the world right now, and for good reason. Instead of bottling up them all up, Ziegler suggests listing them all out and then—and this is the key part—coming up with strategies for how you would cope if the worst happened.

“Give yourself your moment,” Ziegler says. “Then, stop, and make a plan around it.”

Are you afraid of losing your job? Not being able to pay rent? Getting sick and needing someone to care for your children? Name these fears, then start making plans. Just the act of thinking through them will help your regain a sense of perspective and control.

Right now, the world is a scary and stressful place. There is no avoiding it. However, even in the middle of all these worries and anxieties, there are still actions we can take to help mitigate the worst effects. Adjust your expectations, carve out time for yourself and do whatever is in your power to preserve your sanity for the long run. Because it’s going to be a long run.

Rachel Fairbank is a freelance science writer based in Texas. When she is not writing, she can be found spending time with her family, or at her local boxing gym.

In-home Activities While Sheltering in Place – UCSF Caregiving Webinar Notes

In response to the covid-19 outbreak and shelter-in-place orders, the UCSF Memory and Aging Center (MAC) hosted a weekly caregiving webinar series in April 2020.  These webinars are focused on providing information and resources to caregivers spending more time at home with their loved one and less caregiving support than usual.

The second webinar presented on April 8th was on the topic of “In-Home Activities While Sheltering in Place.”  A terrific RN at the MAC was the main speaker — Sarah Dulaney, RN, CNS. She spoke for the first 24 minutes. There was also a family caregiver speaker. As we didn’t find the family caregiver’s remarks so interesting for the atypical parkinsonism audience, they aren’t included in this blog post.

Ms. Dulaney’s main advice is to: Choose activities that can help reduce stress in your home because stress is contagious from caregiver to care receiver. In this webinar, she offers lists of activities that might be rewarding, relaxing, distracting, refreshing, or providing a social connection.

If you are home with your family member with no respite, pace yourself! Ms. Dulaney offers some advice in this situation:

  • Apathy, decreased attention, irritability, and daytime sleepiness are common barriers to engagement
  • Try shorter, more frequent episodes of activity (5-15 mins)
  • Find ways to connect through activities of daily living (i.e., laughing, singing, conversation, touch)

Here are Ms. Dulaney’s resources related to activities:

Here’s a link to recording of the April 8th webinar:


At this link, you’ll find the recordings of all five caregiving webinars along with PDFs of the slides presented:


Thanks to Brain Support Network staff member Denise Dagan for attending the webinar, and sharing her notes.  See Denise’s notes below.



In-Home Activities While Sheltering in Place
Webinar hosted by UCSF Memory and Aging Center
April 8, 2020
Presenters:  Sarah Dulaney, RN, CNS and Pam Roberts, caregiver
Notes by Denise Dagan

What to do when stuck at home ALL DAY EVERY DAY?

Choose activities that can help reduce stress in your home because stress is contagious from caregiver to care receiver.  Stress can make caregiving more difficult as it will manifest in difficult and uncooperative behaviors, especially in those who suffer from dementia.  To reduce stress in your home:

  • Stick to a routine
  • Take one day at a time
  • Do your best
  • Be gentle with yourself
  • Prioritize connecting with others

How do activities affect your mood and energy level? Do things that regulate the neurotransmitters in your brain, or activities that are:

  • Rewarding
  • Relaxing
  • Distracting from negative thoughts and stress
  • Refreshing to your energy level
  • Connecting with others, socially

Rewarding activities reinforce a sense of purpose and accomplishment. Try to get the person you care for to help with these activities:

  • Work
  • Helping others
    • Caring for others can feel rewarding
    • Find tasks to make a care recipient feel they are helping
      • Help around the house
      • Give caregiver a back rub
  • Cleaning and household chores
    • sweep, rake, dishes, laundry
    • care recipients may need cuing or assistance.  They may not do tasks perfectly, but it makes them feel helpful/useful.
  • Home improvement projects
    • cleaning out closets
    • sorting clothes, photos, books, magazines
  • Cooking or baking
    • peeling, chopping, stirring, set the table, take things to the table
  • Gardening
    • even houseplants
  • Caring for a pet, or fostering animals
  • Creative arts or craft project
    • taking photos, baking together, arranging flowers, coloring mandalas
    • use found objects or recycled items (twigs, rocks, toilet paper rolls) if you have few or no craft supplies
    • take a photo of your project and share with friends and family
  • Puzzles and games
    • Springbuck brand 36 piece jigsaw puzzles with adult images
  • Learning a new skill
    • new language, song, exercise or hobby – doesn’t have to be ambitious to be rewarding

Relaxing activities ease tension and emotional arousal in the mind and body:

  • Mindful awareness or deep breathing
  • Meditation, mantra or prayer
    • Metta Meditation:  “May I be happy, may I be well, may I be safe, may I be at peace, may I be at ease.”
    • Repeat mantra wishing others the same
  • Nature walk, scenic drive, window watching or nature videos (TV, youtube)
  • Drink tea or other beverage in a mindful way (notice flavor, how it warms you, etc.)
  • Imagine a different reality
    • somewhere more pleasant, like a place where you vacationed.  Get out photos.
    • somewhere more distressing and be grateful that we are in a place that is relatively safe.
  • Warm shower or bath
  • Massage, hugs, holding hands, or cuddling with a pet
  • Wrapping up in a blanket, stuffed animal or soft stretchy or weighted blanked
  • Listening to music
    • choose a genre from the care recipient’s past
  • Eating chocolate

Distracting activities redirect our attention to something entertaining or amusing and away from the stress of news, worries and fears:

  • Manicure, hairstyling and dress-up with hats or jewelry
    • Take pictures or do a video call to share the experience
  • Magazines, books (read to them), coloring books, trivia, telling jokes, sharing memes
  • Video call with family or friends
  • Singing karaoke
  • Playing simple games like Jenga, blackjack, dominos or bingo
  • Digital games like solitaire, sudoku, crossword or Microsoft Flight Simulator
  • Classic movies or sitcoms, sports, cooking or home improvement shows, animal cameras, nature videos
  • Virtual museum tours, live-stream (opera, symphony, zoo, safari, Winchester Mystery House) online classes or lectures

Refreshing activities renew our strength and energy:

  • Exercise
    • Online videos
      • Silver Sneakers
      • NIH Go4Life Workout Videos
    • Put on music and dance
    • Walking
    • Chair sits, wall push-ups, etc.
  • Creative projects
  • Spiritual practices or rituals (walk in nature, honor religious traditions)
  • Reflect on and reaffirm your goals & values

Connecting activities build and deepen relationships

  • Reminisce, listen and tell stories
  • Find meaning in the mundane
    • Family recipes or food preferences
    • Quirky sayings of habits of friends and/or family members
  • Record meaningful moments on video
    • It will be nice to have these when the person you care for passes
  • Apologize
  • Forgive or let things go – over the phone, by video, write letters or email, journal to forgive those who have died
  • Use “love language”
    • Encouraging words (like compliments or appreciation), gifts, acts of service, physical touch
    • Find ways to be kind to each other and spend quality time together

(Resources for the above list: Gary Chapman, “The Five Love Languages,” 2015 and Ira Byock, “The Four Things that Matter Most,” 2014.)

Connect remotely:

  • Phone calls and texts
  • Covia’s Well Connected (senior center without walls, armchair travel, etc.)
  • Virtual/Zoom support group (through Alzheimer’s Association)
  • Letters or postcards
  • Social media (Facebook, Instagram, NextDoor, WhatsApp)
  • Video call technology (FaceTime, Skype, Zoom Google Duo, Amazon Alexa Show)
    • Consider how to get the most out of the connection.  
    • If the person you contact is unable to speak, share music with them or keep it short and tell them you love them
    • For those more cognitively aware be creative, get grandchildren involved (put on a play, read to each other, etc.)

Pace yourself if you are home with your care recipient without respite:

  • Apathy, decreased attention, irritability, and daytime sleepiness are common barriers to engagement
  • Try shorter, more frequent episodes of activity (5-15 mins)
  • Find ways to connect through activities of daily living (i.e., laughing, singing, conversation, touch)

Share your own tips and ideas!

  • Electronic Wonder Bible or audiobook bible
  • Animated/robot ‘stuffed’ animals (Joy For All Dog)
  • Jigsaw puzzles (high contrast color makes puzzle pieces easier to see)
  • Video calls with family/friends

Let’s Review

  • Do your best, and be gentle with yourself
  • Consider activities that might be rewarding, relaxing, distracting, refreshing and connecting
  • Observe, adapt and simplify
  • Explore behavior as communication



Q. Person with FTD who used to be outdoors-y and now can’t go to gym.

A. Try a recumbent bike or virtual personal training with home gym equipment.  Of course, you can still take them outside with supervision.  Social distancing is more likely to happen on bicycles. Go see if trails he enjoyed are still open and how crowded.  Try to find one you can still take him to.  Even just walking around the block twice a day would be helpful.

Comment: Make face masks with the person you care for.

Q. Is there such a thing as too much TV?

A. Yes, limit how much the person you care for watches the news.  Perhaps you can listen to the news through head phones to limit how much news they hear.  There is too much TV if if results in too much sitting.  You can get very involved conversationally by watching something like live streaming zoo animals or programs you both enjoy and talk about.  Especially older programming like Murder She Wrote, M*A*S*H, etc. that is familiar to you.  Religious services can be very meaningful for some people.  Be sure to take time to get up and move around.

Q. Barriers to engaging in activities, like apathy.  How to motivate?

A. This is a very common challenge.  Adjust your expectations.  Maybe it is a success to get the person you care for to get off the couch and come to the dining room or patio for a meal.  Try asking them to do something gentle at first, like sit on the porch, go for a drive, etc.  Sometimes, if you ask them if they want to do something you will get an automatic NO without them even thinking about what you said.  Try asking them to help you (take out the trash) or join you (for a walk).  Once you get them in the car their interest may be heightened.  Using rewards can get someone moving.  Show them a treat to get them moving.  Move the treat forward to keep them moving.  Promise a treat when a task is completed.

Q. How to remind someone of social distancing rules, proper hand washing, etc.

A. Wash your hands with them.  Provide verbal cues to remind them what you want them to do.   Example: someone with dementia approaching animals or children while out.  Solution: hold their hand to remind them.  Intervene and suggest taking a photo of the animal or child, rather than touching, may be a satisfying substitute for touching.

Q. Day programs running at reduced capacity is still dangerous to the attendees health.  Safety of taking seniors shopping, etc.

A. You can speak with the program’s management about how they are monitoring the health of staff, even if staff is keeping attendees apart.  Be sure to express your family member’s co-morbidities so everyone is aware of the level of protections needed to keep them healthy.  If you have in-home caregivers, be sure personal protective equipment is available to use in your home.  There are guidelines on the CDC’s website.  It is best to have groceries, etc. delivered.  If you can’t manage to arrange for this online, reach out to family, friends, clergy to ask them to deliver necessities to your home.

Q. Bedridden person and activities.

A. Playing music, reading aloud, massage (even just hands and feet), reminiscing with photos, relating family news, engage tactile sensations like a pet or stuffed animal.  Don’t forget their spiritual practices, if that is relevant to the two of you.  Reach out to people who know you to get support with your frustrations and for more ideas.

Social Isolation: Caregiving in the time of covid – lecture notes

In late March and April 2020, Home Instead Senior Living hosted “Caregiving During Covid-19,” a Facebook Live Series every Monday and Thursday for 30 minutes. The fifth chat in the series, on April 13th, was a Question-and-Answer about social isolation.

Social isolation and loneliness is a common problem for seniors.  This period of physical distancing and social isolation due to covid-19 is giving the rest of us a glimpse into the lonely experience of many seniors.  Hopefully, that shared experience will help us:      
– become more aware of seniors around us who may be lonely, and       
– develop creative ways to prevent or relieve their loneliness.

The conversation between two gerontologists addressed:
– factors that can lead to social isolation for seniors,
– signs we may notice if someone we love is lonely or depressed, and
– proactive things we can do to help prevent or relieve loneliness for seniors.

I liked this suggestion: Ask your loved one what would make them feel more connected? 

The recording from April 13th can be found here:


Denise Dagan from Stanford Parkinson’s Community Outreach listened in on the discussion and shared her notes.

Recordings from the nine discussions or chats can be found here:




Social Isolation Q&A
April 13, 2020
Home Instead Senior Living
Notes by Denise Deagan, Stanford Parkinson’s Community Outreach


Moderator: Lakelyn Hogan, gerontologist
Guest: Molly Carpenter, gerontologist and author of Competence to Care

Lakelyn – In this time of social distancing, staying connected is more important than ever because seniors are prone to social isolation, which can lead to loneliness and depression.  Now, we are all getting a glimpse into what seniors often experience. What are your general thoughts on this topic?

Molly – You make an excellent point in saying the covid-19 period of social distancing is a glimpse of what seniors often experience due to mobility issues or chronic conditions.  Our awareness of their daily experience is the only way we can reach out and do something to help seniors.

Isolation is an objective measure of when someone doesn’t have enough people to interact with.

Loneliness is the emotional distress of not having social interaction.  It looks different from one person to another and it very subjective.  You can have a lot of friends, but still feel lonely.

Sometimes, family will move a senior into a care facility thinking they will have so much social interaction, but that person can still feel lonely.
Lakelyn – What other circumstances can make a senior feel lonely, besides mobility, etc.?

Molly – There are so many:

  • Your living environment – being unmarried, widowed, having no children or no children nearby
  • Social changes – currently cancelled book clubs, church groups, closed senior centers, etc.
  • Distance – rural area residence
  • Location and Transportation – suburbs without public transportation and no driver’s license
  • Mobility – pain while walking, limited handicap access, inability to afford a motorized wheelchair or scooter
  • Hearing and Vision limitations
  • Life changes – being widowed, becoming a caregiver, moving/relocation, retirement, etc.

Lakelyn – Isolation and loneliness can impact your physical health.  Studies found loneliness can be worse than smoking (15 cigarettes/daily), alcoholism and obesity.

Molly – There are health implications.  In the last 10 years research articles talk about loneliness causing an increased risk of heart disease/stroke, dementia, depression, perceived stress, pool sleep, even death!  
Lakelyn – There are visual cues you can look for while interacting with our loved ones to recognize symptoms of loneliness so we can do something to relieve their loneliness.

Molly – These signs look a lot like depression and loneliness can lead to depression.  If you see these signs, be sure to bring the issue up with their doctor and have them tested for depression.

  • aches and pains
  • increased tension
  • anxiety/panic attacks
  • low energy/lack of motivation
  • cognitive impairment
  • sleep issues/too many naps during the day
  • weight gain or loss
  • poor diet
  • appetite changes
  • comments about hopelessness
  • feeling down in the dumps

Lakelyn – What can we do to prevent loneliness or isolation for our loved ones?

Molly – First, think about the word, “relationships.”  We all have to work on our relationships.  With our seniors, we may have to take the lead and reach out more often, pay closer attention, and take action.  Seniors tend not to say anything so you need to just step in.

  • Be proactive and persistent
  • Take an individualized approach
    • Consider their personality – do they need quiet time or more active 
    • What did/do they enjoy doing – consider their life experience
  • Use technology to chat, play games, etc.
  • While on the phone or video chatting.  Eat a meal together or dessert, have a happy hour, watch the sunset – be creative with what you do together, virtually.
  • Pick up the phone
  • Send handwritten notes/cards
  • Quality over quantity – even if you haven’t contacted someone in awhile, they may still appreciate the gesture
    • Especially if you share that something made you think of them, make a quick call/text/card, etc.
  • Don’t get discouraged if your initial contact seems unwelcome – keep trying.
  • Ask them what would make them feel more connected?  They may prefer a phone call to video conference, or vice versa.