“Can Caregiving Cause PTSD?” (NextAvenue)

This is an interesting article from NextAvenue (nextavenue.org) on post-traumatic  stress disorder (PTSD) being caused by caregiving.  Advice given to family caregivers includes:
  • Don’t put the brakes on your personal life and feelings.
  • Be aware of your thoughts and your feelings.
  • Take regular breaks, even a short walk or enjoying personal time alone.
  • Get some help, from an aide or respite care.
  • Have a healthy diet, get adequate sleep, get regular exercise, enjoy nature, and engage in pleasurable activities.
The full article is copied below.


Can Caregiving Cause PTSD?
What experts say and what role the pandemic is playing

by Juana Poareo, Freelance Writer
August 21, 2020

Kaci Smith, 36, recalls the gradual emergence of her PTSD symptoms about three years ago when she’d been caring for her mother at home following her mom’s 2012 stroke.

“It would be things like almost feeling like a panic attack,” says Smith, a Rochester, N.Y. teacher. “If she would complain of leg pain, I would think, ‘Oh, no. It’s a blood clot. We’re going to have to go through all this medical stuff again.’”

Smith, who stopped working when COVID-19 forced the U.S. into lockdown, has been a 24/7 caregiver for her mother during the pandemic and is on anti-anxiety medicine.

As the “Caregiving in the U.S. 2020” report from AARP and the National Alliance for Caregiving documented, being a family caregiver can be high stress. It can also, in some cases, bring on PTSD (Post Traumatic Stress Disorder), an anxiety disorder caused by trauma. PTSD symptoms typically range from flashbacks and recurring dreams to insomnia and poor concentration.

Researching the Caregiving PTSD Link

Exactly how often caregiving can lead to PTSD is unknown.

“There remains very little research or attention on PTSD among caregivers,” says Dr. Ranak Trivedi, an assistant professor of psychiatry and behavioral sciences at Stanford University.

But, Trivedi adds, “As clinical psychologists, we are also recognizing that chronic stress that is unrelenting — such as through caregiving — can lead to PTSD.”

Jennifer McAdam, an associate professor in the School of Nursing at Samuel Merritt University who co-authored a study about family caregivers of ICU patients, says more research needs to be conducted to establish the true impact of caregiver PTSD.

“It is difficult and challenging to get money to study families as this area is typically not considered a high priority in research,” McAdam says.

The Pandemic’s Effect on Family Caregivers

The pandemic may well be making PTSD among caregivers more common.

A recent Centers for Disease Control and Prevention (CDC) report said the rates of symptoms of anxiety disorder and depression, as well as serious consideration of suicide, have been much higher for unpaid family caregivers than the public in general lately.

PTSD symptoms can also emerge for caregivers when a person receiving care has a chronic illness or disability, like Smith’s mother.

COVID-19 has put a stop to in-person social interaction for Smith and her mother. Before the coronavirus spread, Smith’s brother would visit regularly. No more.

“It’s just made my world very, very small,” Smith says.

What Can Trigger PTSD for Caregivers

Whether you’re prone to develop PTSD due to caregiving depends largely on your emotional and physical resilience.

For example, if you suffered from anxiety or depression before caregiving, you’re more likely to develop PTSD symptoms than someone who doesn’t have those conditions. And if you struggled with trauma in the past or are suddenly thrown into a caregiver role without preparation, experts say, caregiving can lead to PTSD symptoms.

Life experiences can adversely affect caregivers, too, including their socioeconomic status, divorce or the death of a child or parent. The more unresolved loss or trauma, the more likely a caregiver will carry extra stress. That’s been true for Smith, who lost her father when she was 12.

“Part of my PTSD also is around abandonment. I think that’s why, with my mom, it [PTSD] definitely gets very triggered when it comes to her health,” Smith says. “She’s also been suffering from cardiovascular disease since I was ten, so even though I became a full-time caregiver at twenty-seven, her health has been something that we’ve been struggling with my whole life.”

Another potential factor for PTSD among caregivers: a lack of family and community support. According to a BMC Psychiatry article, reliable support can make the load more bearable for a caregiver under severe stress.

Advice for Family Caregivers

Navigating a whirlwind of emotions as a family caregiver can be draining. It’s all too easy to put the brakes on your personal life and feelings, but that’s unwise and could be unhealthy.

“Even if you feel like you don’t have time to do anything, be aware of your thoughts and your feelings,” Trivedi says. “Honor those and know that those are real and true.”

Taking regular breaks can help, too. Even a short walk or enjoying some personal time alone can be enough to recharge your batteries.

You may also want to look into getting some help, either from a home health aide or respite care. State and local programs may pay for this kind of assistance. And if the loved one you’re caring for is on Medicare, that federal program might cover this kind of support, too.

Trivedi says these services “often go unused because people don’t realize they can use” them.

A healthy diet, adequate sleep, regular exercise, enjoying nature and engaging in pleasurable activities can be useful, too.


Juana Poareo is a freelance writer and blogger in New Mexico who specializes in writing about health. She has worked with HuffPost, Saatchi&Saatchi, OncoLink, MBLM and Ambrosia Treatment Center. Her website is JuanaWrites.com.

“7 Ways Family Caregivers Can Combat Compassion Fatigue”

Compassion fatigue is the physical, mental, and emotional exhaustion that can come from caregiving.  It can reduce our effectiveness caring for our loved ones and ourselves.

This is a good article on how family caregivers can combat compassion fatigue:


7 Ways Family Caregivers Can Combat Compassion Fatigue
Guidelines from an expert who’s also had personal experience
By Stephen Chee
August 18, 2020

The author says:

The most effective mantra to surmount compassion fatigue? Don’t be your own worst enemy. Instead, be your own best friend. Speak kindly to yourself and give yourself grace. When we befriend ourselves, we can love and serve others more abundantly.

The seven guidelines described include:

  1. Take Care to Give Care.  Many family caregivers have trouble asking for help. … Yet if we fail to care for ourselves first, we will be ineffective in caring for others.  Remember these three principles: We must receive before we can give; we must learn not to put ourselves last and we must be kind to ourselves by taking time to rest, recharge and recover.
  2. Plan Each Day.  In caregiving, it’s a four-step process:  
    * Choose your planning medium.
    * Schedule a one-hour weekly planning session.
    * Block off time for each daily activity beyond caregiving, such as maintaining your work schedule, shopping, exercising, sleeping, having quiet time, nurturing your spiritual practices, keeping doctors’ appointments and spending time with family and friends.
    * Be flexible and realistic, leaving room in your life for unexpected events.
  3. Cultivate Emotional Intelligence.  [This includes] self-awareness, positive outlook, self-control, adaptability and empathy.  Empathy is needed not only in caring for others, but in loving and forgiving ourselves.
  4. Follow the Caregiver’s Bill of Rights
  5. Build Your Support Network
  6. Seek Physical, Mental and Emotional Recovery
  7. Celebrate and Have Fun

Check out the full article for more details.


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.

“Managing daily activities and fall prevention” in Lewy body dementia – UCSF webinar

In early April 2020, the UCSF Memory and Aging Center (MAC) hosted a webinar on managing daily activities and fall prevention — the third in its ongoing series on Lewy body dementia (LBD).  The two wonderful speakers were Sarah Dulaney, RN, clinical nurse specialist with UCSF, and Helen Medsger, long-time Brain Support Network LBD support group member.  Helen cared for her sister with LBD.  They discussed the importance of establishing a daily routine and preventing falls, plus provided activity suggestions and tips for communication.

While the webinar was geared towards LBD caregivers, caregivers to those with all dementia types may benefit from these webinar notes.

Thanks to Helen Medsger for alerting us to the MAC’s LBD webinar series.  You can find the list of the full series here:

UCSF Lewy Body Dementia Caregiver Webinar Series

The April 7th webinar featuring Sarah Dulaney and Helen Medsger was recorded and is available on YouTube:


The MAC is asking that everyone who views the recorded webinar provide feedback through a brief survey here:


This webinar is worth listening to and/or reading the notes (see below)!

If you missed the first two webinars in this series, check out some notes here:

What is Lewy body dementia?

Behavior and mood symptoms in Lewy body dementia

For further information on Lewy body dementia, look through Brain Support Network’s list of resources:

Brain Support Network’s Top Resources on LBD

Lauren Stroshane, with Stanford Parkinson’s Community Outreach, listened to the webinar and shared her notes.  See below.


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Managing Daily Activities and Fall Prevention – Webinar notes
Presented by the UCSF Memory and Aging Center
April 7, 2020
Summary by Lauren Stroshane, Stanford Parkinson’s Community Outreach

In the third webinar of the UCSF Memory and Aging Center (MAC)’s webinar series on Lewy body dementia (LBD), speakers Sarah Dulaney, a Clinical Nurse Specialist with UCSF, and Helen Medsger, who has personal experience caring for family members with LBD, discussed practical strategies for daily activities and maintaining safety in those with LBD.

Why establish a daily routine?

Creating and sustaining a daily routine can help your loved one to maintain autonomy and function for as long as possible. A routine also helps accommodate for the loss of executive function, apathy, daytime sleepiness, and anxiety that often go along with LBD.

When establishing a daily schedule, it is important to adjust expectations and adapt your approach for your loved one’s current abilities and needs — which may gradually change over time.

Our role as care partners is to support the individual, to help them maintain as much of themselves as possible, and to adjust with them as the disease progresses.

How to establish a daily routine?

“Knowing what to do for an ill person and what to cease doing begins with understanding what life is like from that person’s perspective.” 
– Wendy Lustbader, “Counting on Kindness”

Put yourself in your loved one’s shoes:

  • What may they feel like? How has their daily life changed? How do their thought processes work differently now?
  • Can they still do their daily hobbies? Have they had to stop working? Have they lost friends?

Spend some time observing their existing habits and preferences, as well as safety needs. If he or she is able to converse with you, have an open discussion about the following topics as well. Try to learn what in the environment triggers positive or negative responses from them. Note any safety concerns to be addressed. Determine what activities or items they seem to enjoy. It can be helpful to use tools – such as a list, calendar, whiteboard, or other technology to help stay on track throughout the day. It’s important to start simple and be flexible.

Micro-managing is exhausting for you and for them, but making a list of general tasks and activities can be helpful. A sample morning routine could include:

  1. Get up, wash your face, and get dressed
  2. Prepare breakfast
  3. Eat breakfast and take morning medications
  4. Discuss the news over coffee
  5. Brush teeth
  6. Work on a project or reminisce over old photos
  7. Take a break with quiet time
  8. Take a walk, dance, or toss a ball
  9. Do simple chores together

Certain environmental strategies can go a long way to supporting independence, by making the environment more conducive to their safety and independence:

  • Ensure good lighting to minimize shadow and glare.
  • Reduce clutter – visuospatial deficits make it harder for them to see different objects clearly. For example, rather than keeping all your loved one’s clothes hanging together in a full closet, consider boxing some of the closet contents and gradually cycling through them, to keep the closet emptier and easier for the patient to use.
  • Avoid overstimulation; when possible, reduce visual and auditory noise.
  • Use color contrast to help them navigate the home despite visuospatial challenges. One example is using red for essential items in the bathroom like grab bars, doorknob, towels, toilet lid – each of these essential items was bright red. For meals, you could use cutlery and dishes that are all the same bright color to help them function.
  • Set up items needed for a task in the order the patient will use them.
  • Consider adaptive devices and home modifications – see if you’re covered under Medicare or your other insurance to undergo an OT eval at home & see what you can do to make the home safer.

The Alzheimer’s Association has a helpful home safety checklist, available for download as a PDF here:

Keep track of “security items”

Those with LBD often have “security items,” personal belongings to which they are particularly attached, often a purse, wallet, keys, eyeglasses, or a book. Without their security item, they may become agitated and suspicious, believing it has been stolen. Helen recommended keeping those items readily available for your loved one so they don’t become anxious.

She also offered the suggestion that you keep a “backup” for each of their security items in case the items do get lost, which can trigger anxiety and agitation. For instance, if the patient always needs to her purse handy, with her wallet, credit cards, and eyeglasses, you could keep an older purse (or a duplicate of her current purse) with old, expired credit cards, and older prescription glasses as a ready substitute. Make sure you keep photocopies of any active credit cards, in case they do go missing.

Use verbal, visual, and tactile cues

Individuals with LBD gradually lose the ability to sequence actions and complete multiple tasks or steps in order. Helen gave an example of her sister, who had LBD, who would rush to the bathroom sometimes, but then forget what to do next once she was in the room. By giving simple verbal instructions, one small step at a time, Helen was able to coach her through using the bathroom:

  1. “Do you need to go to the bathroom?
  2. “Walk to the toilet.”
  3. “Turn to face me”
  4. “Back up.”
  5. “Pull down your pants.”
  6. “Pull down your underwear.”
  7. “Sit down now.”
  8. “Relax.”

With this type of support, the individual can sometimes still do some things for themselves. The key is to stick to one or two step instructions, often “yes or no” questions, and providing no more than two options (i.e. this one or that one, now or later). For some people, demonstrating visually what you are encouraging them to do is more helpful than verbal cues. For others, tactile guidance – such as guiding their dominant hand to do the task – is most useful.

Other communication tips

Focus on connecting with the person. Set a positive mood with your tone and body language – stress is palpable even across the room. Take your time and don’t rush. Use gentle humor – but respectfully, not making fun of them. Rather than asking if they “want to” do an activity, say “it’s time” to do it. Ask the person to help or “give it a try” to encourage them to do things they can still do independently.

If it’s not working, move on, and try again later. Consider using rewards if nothing else works. Some people use food treats, though it doesn’t have to be that. Helen prefers activity rewards or positive feedback instead. Simple incentives are best.

Ideas for in-home activities

Try to keep the person physically and socially engaged. Once we get past the current COVID-19 isolation, outdoor activities will be possible again.

  • Grooming: manicure, hairstyling, “dress up” or “spa day”
  • Exercise: bicycling, boxing, aerobics classes or videos, seated exercises
  • Chores: gardening, sweeping, wiping, sorting, folding, cooking
  • Entertainment: magazines, books, television, audiobooks, music, podcasts
  • Recreation: simple games, puzzles, coloring, painting, clay, ball toss, singing, trivia
  • Relaxation: prayer or meditation, reading or audiobooks, nature walk, scenic drive, music, massage, nap, stuffed animal or soft blanket
  • Animal therapy: pets can be great companions for those who like animals

Take a pragmatic approach to activities

Pace yourself! It’s not a race. You’ll be dealing with apathy, decreased attention, and daytime sleepiness which are common barriers to engagement. If daytime sleepiness is a major barrier, consider contacting the healthcare provider to see if there are medications that might help, though this is not a first line option.

Shorter, more frequent episodes of activity (5-15 min) may be a more realistic goal. Say “please join me” rather than “do you want to.” Find ways to connect through activities of daily living, such as laughing, singing, conversation, and touch.

An example of how to simplify an activity – how to retain the pleasure of an activity as the disease progresses – is knitting, if the person was an active knitter previously:

  • Knit a simple potholder with bigger needles
  • Try using a square weaving frame for children
  • Roll loose yarn into a ball
  • Choose colors and “direct” others
  • Glue bits of yarn and fabric onto cardboard
  • Look at knitting photos in a book or magazine
  • Watch knitting videos
  • Hold soft pillow or lap blanket with tactile yarn, ribbon, or beads sew onto it

Connect remotely through technology

For those with LBD, having to “pick up” when someone calls can be stressful and confusing. Drop-in video visits that don’t require the person to “pick up” may be best, such as the Amazon Echo Show, a smart speaker that can be programmed with friends and family who can drop in, or other technology like GrandPad, Nest, or video baby monitors. Other options that do require someone to be able to accept the call include FaceTime, Skype, Zoom, or Google Duo. The Amazon Fire Stick with smartphone app provides a remote that can control programming remotely through existing subscriptions or YouTube.

Preventing falls

People with dementia are at higher risk for serious fall-related injuries. Mortality from falls has been increasing in the last few decades; we’re not entirely sure why. Falls were the cause of injury in 90 percent of injury-related hospitalizations among older adults with dementia, and can cause life-changing injuries such as hip fracture, often precipitating a cycle of increased dependence on others for their care.

Injuries can set off a downward cycle in which the person is unable to exercise due to injury, thus becoming very deconditioned and losing a lot of muscle strength. This leads to greater dependence on help from others, which in turn increases the risk of future falls due to a lack of strength and independence. Not only does this decrease the quality of life for the patient, it also increases the burden on the caregiver.

Why are people with LBD more prone to falls?

  • Mobility changes: they can’t move as well as previously due to stiffness, slowness, and sometimes tremor or freezing of gait.
  • Problems with blood pressure regulation can cause fainting and falls.
  • Urinary urgency means sometimes needing to get to the bathroom urgently.
  • Visual processing changes make it harder to navigate the environment safety.
  • Slowed thinking, deceased safety awareness, inattention, and impulsivity are common.

Strategies for improving gait and mobility

There are a lot of little tricks that can help the brain get out of episodes of freezing of gait (FOG), if they occur. Working with an experienced physical therapist can be very beneficial for practicing some of these strategies:

  • Counting, marching, or singing a marching song while walking
  • “Skating” movements to shift weight rather than stepping
  • Walking sideways
  • Using a scooter! Not necessarily recommended due to safety concerns.
  • “Dribble” a tennis ball so the brain focuses on the dribbling motion and forgets to freeze
  • Leaning forward and picking up a large ball to combat the risk of falling backward, for those who tend to lean backward as is common in LBD

Again, a physical therapist is best equipped to each you some of these techniques. They can also provide instruction in how to fall safely and how to get up from a fall; make recommendations for home modifications and assistive devices; develop tailored exercises to optimize function and minimize risks; and provide referrals to community-based fall prevention and/or exercise programs.

Some programs may be available to you locally, once shelter-in-place orders have lifted. Check the program website to see what they may be offering remotely during the COVID-19 crisis:

Parkinson Wellness Recovery (PWR!)
Dance for PD
Rock Steady Boxing

Problems with blood pressure regulation are a major fall risk in LBD

As discussed in the previous webinars in the series, autonomic dysfunction is common in LBD, causing dangerous fluctuations in blood pressure that can lead to dizziness, weakness, and falls. This is called orthostatic hypotension (OH). Common triggers for these fluctuations:

  • Sudden changes in position, such as bending over, getting out of bed, or standing up
  • Overheating, due to hot weather, exercise, or a hot shower
  • Standing for too long
  • Eating a large meal
  • Using the bathroom

What should you do if episodes of dizziness, lightheadedness, and falls are occurring?  

Most importantly, report any falls or new symptoms to their doctor. When you go in for a visit, ask if they can check orthostatic blood pressures, which means checking and rechecking the patient’s blood pressure when they are lying down, sitting, and standing, to assess if they are having episodes of OH. It may be wise to purchase an automatic blood pressure machine so that you can monitor their blood pressures at home, particularly when episodes of dizziness or lightheadedness occur.

Ask the doctor if any of your loved one’s current medications might be exacerbating these issues. For instance, levodopa is a medication commonly used to treat the motor symptoms of LBD, such as tremor, stiffness, and rigidity, but it also tends to lower blood pressure and might need to be decreased if episodes of OH are happening.

Also check with the doctor if it is safe to try “conservative measures” to support the blood pressure, such as increasing fluid intake, wearing pressurized stockings or an abdominal binder, or increasing salt intake. It is important to ask because, for some individuals who have a history of heart disease or high blood pressure, these conservative strategies may not be safe.

Other things that might help:

  • Have the person sit at the edge of the bed for a few minutes before standing up in the morning.
  • Offer smaller, more frequent meals and snacks rather than fewer large, heavy meals.
  • If blood pressure is low or the person feels dizzy, help them sit or lie down.
  • If these symptoms keep happening and are causing falls, ask the healthcare provider about medications to increase the blood pressure, which are sometimes necessary.

Visuospatial deficits can contribute to falls

People with LBD no longer process visual information the same way as the rest of us. They typically experience difficulties with depth perception and spatial awareness, and may have trouble distinguishing shapes, colors, shadow, and glare. These changes can lead to freezing at doorways and rugs, being unable to see stairs, missing the chair or bed, or reaching for objects that may not help with balance, such as a tall plant. It may be more difficult for them to recognize things, people, and places; these perception problems can trigger visual hallucinations as well.

Fortunately, there are ways you can help accommodate for these changes in their visual processing:

  • Decrease clutter
  • Increase color contrast
    • Apply brightly colored tape to edge of stairs
    • Choose a colored toilet seat, grab bar, shower bench, etc.
  • Avoid high contrast patterns on the carpet, walls, or flooring
  • Remove or secure rugs
  • Improve lighting to prevent shadow or glare
  • Consider covering windows & mirrors
  • Choose chairs with armrests and appropriate seat height/depth to make it easier for them to get up and down

Supervision and other strategies to prevent falls

Cognitive changes in LBD lead to decreased safety awareness, difficulty with attention and multi-tasking, and impulsivity. Strategies to prevent falls due to cognitive decline include:

  • Hands-on guidance and vigilant supervision
  • Reduce distractions

Some families do use forms of restraints, such as bed rails, but Sarah expressed reservations about these types of interventions, which can lead to other injuries such as if the person attempts to climb over the bed rails. She recommends harm reduction rather than restraints: put the mattress on the floor, or get a low bed frame, maybe put a mat on the floor beside the bed. Consider a bed alarm (not one that would be startling to the person) if you’re sleeping separately.

As mentioned previously, check with a healthcare provider if there are any concerns about episodes of OH that might be causing fainting or falls. Also let them know about any urgency or frequency with toileting, and consider asking for a referral for outpatient occupational and physical therapy. Make sure their eyes are healthy and that they are wearing prescription glasses if needed. They should also wear well-fitting shoes with heel support and non-skid soles; avoid loose shoes such as flip-flop sandals that can heighten the risk of falls.

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Question & Answer Session

Q: When establishing a routine, how to work around the fluctuations in cognition that are characteristic in LBD?

A: This is a big challenge. Flexibility and simplicity are key. Get to know where your loved one is at; do they tend to fluctuate day by day or more at certain times of the day? Build flexibility into your routine. Help them be the best they can be, for them, not for our needs and wants or ticking off activities on a list.

Q: If a person has an episode of orthostatic hypotension (OH) in the middle of a PT session or exercise, what should we do?

A: They need to sit down or lie down right away to prevent falling. It’s a good idea to let the class instructor know beforehand and see what modifications are possible, maybe having an assistant or a chair handy. Make sure they are really hydrated beforehand. Increase ventilation to prevent overheating. They may need to decrease the workout intensity to avoid such issues.

Q: How is the COVID-19 pandemic impacting people’s daily routines and any advice for caregivers during this difficult time?

A: Do your best, be gentle with yourself, and take one day at a time. Try to manage your own stress so that it isn’t contagious. TV gets a bad rap but may be helpful during this time. Watch something funny or that helps bring back memories, or documentaries or travel shows that may help you learn things. Reach out! Pick up the phone, FaceTime, or text your friends and family.


Caregiving in the Time of Social Distancing – Chat notes

Sheltering-in-place is particularly challenging for caregivers who relied on day programs and in-home caregivers to provide routine as well as caregiving assistance and respite.  Many day programs are now closed, and some families are choosing not to have in-home care services until the shelter-in-place order is lifted.  In addition, caregivers with family members living in care facilities are not permitted to visit and, in some cases, cannot even send or deliver food or other items.  So, how to keep our loved one busy or connect with them until things get back to normal?

Home Instead Senior Living is hosting a chat series on “Caregiving During Covid-19” on Facebook Live.  The fourth in the series was on April 9, 2020.  Gerontologist Lakelyn Hogan spoke with David Troxel, an expert in dementia care and author of “The Best Friends Approach to Alzheimer’s Care.”  Ms. Hogan and Mr. Troxel discussed this challenging caregiving situation.  They believe that caregivers may find respite in taking a new approach to activities with your loved one.

Though the focus was dementia caregiving, this approach is applicable to all caregiving situations — not necessarily those who are caring for someone with dementia.

Ms. Hogan and Mr. Troxel argue that to provide person-centered care during shelter-in-place means taking the time to gather your thoughts and information about the person you are caring for before you suggest activities to do with them.  Personalize those activities so they have to meaning or interest to your family member, based on the life your family member has led.  Consider:

  •     What sort of personality do they have (shy or outgoing)?
  •     What type of career did they have (and did they love it)?
  •     What hobbies did, or do they enjoy (make a list!)?
  •     Write down 10 things about the person you care for.

Brain Support Network staff member Denise Dagan took notes during the conversation, and shares those notes below.   The question-and-answer portion of the event was focused on dementia caregiving scenarios.


Dementia Care in the Time of Social Distancing, A Live Chat with David Troxel
Facebook Live, hosted by Home Instead Senior Living
April 9, 2020
Notes by Denise Dagan, Brain Support Network

Moderator:  Lakelyn Hogan, gerontologist
Guest:  David Troxel, expert in dementia care and author of “The Best Friends Approach to Alzheimer’s Care”

Lakelyn – Does having dementia increase the risk of contracting covid-19?

David – No, but dementia doesn’t travel alone.  Most people with dementia are elderly and have co-existing conditions, which can make them more fragile and make covid-19 a more severe illness, if contracted.

Lakelyn – It is difficult to keep someone with dementia safe from covid-19 because they aren’t able to remember about social distancing, washing their hands, etc.

David – People with dementia need cueing.  Caregivers should not just remind someone with dementia to wash hands, etc. but wash hands with them or provide hand sanitizer, etc.  If you are living with someone who has dementia you don’t need to stay 6′ from them.  It is more challenging being a caregiver during the shelter in place order because day programs are closed and you may not be having in-home care come into your home at this time.

Lakelyn – Person-centered care is so important for those with dementia, especially now.  Can we talk a little about what person-centered care means?

David – There is no medicine that improves dementia symptoms much.  It has been more than a decade since a new medication has been approved for Alzheimer’s.  Person-centered care is listening, communicating, doing activities together. reminiscing, etc.

“People don’t remember what you said or did, but they always remember how you made them feel.” – Maya Angelou

If you are challenged by being your loved one’s sole caregiver, now is the time to look online and learn tips and tricks for how to provide person-centered care.

Person-centered care is really tailoring every moment toward creating meaningful engagement with someone who has dementia.

There should also be ritual in your day.  One woman I spoke with recently has added a daily happy hour for herself and her husband.

I want to talk a little about keeping the news on all day.  This is not the time for that.  It increases everyone’s anxiety.  Even if the person with dementia doesn’t understand what’s going on with the quarantine,  they do pick up on your anxiety.  Put positive things on TV.  Consider using headphones when you listen to or watch the news.

Lakelyn – What have you heard people doing to cope with this quarantine period?

David – To incorporate person-centered care, start with the person’s life story.  That will inspire you as to which activities to do with your loved one.  Maybe write a ‘top 10′ card with things about your loved one, sort of a mini-memoir, to help you think of things to do with them.

Go through old boxes (cleaning out) with your loved one, is a great way to reminisce and be productive.

Take pictures of things you won’t keep and put them in an album by category (former residences, vacation souveniers, etc.)

Write letters of appreciation together for community services and businesses.

Share or play music together for an hour every day.

If your family member is in a facility, make sure they have access to a personal music source in their room.

Develop a new daily ritual like afternoon tea or happy hour.

Maybe engage some old memories or former places your loved one used to live into your rituals or reminiscences.

Look up places online where they used to live

Stream museums they have been to – or wish they had visited

Stream opera or other performances that connect with their history.

Get out in nature for some vitamin D, exercise – even if you can’t walk, sit on the patio and soak in some sun.

If your family member is in a facility, ask caregivers to be sure to get your family member outside.

Maybe do Facetime with them, even while they are out for a stroll.

Lakelyn – Caregivers have some fear now about their health and their loved one’s health.  A recent survey showed:

– nearly 3/4 of dementia caregivers were unsure what would happen if they were unable to care, and

– 2/3 didn’t know what to do if their loved one became ill.

David – Statistically, caregivers are more likely to become ill and/or die before the person they are caring for.  Everyone should have a Plan B.  Fortunately, dementia is a slow moving illness, so caregivers do have time to investigate who would step in if you become ill.  Now is the time to put some thought into this, especially if your family member is in a facility and you are unable to visit.  You probably have the time to make a Plan B, now.  Socialization is the best treatment for dementia, depression, etc. and asking others is a good place to start your investigation into what others are doing for a Plan B.  So get out there and talk with people about stepping into your shoes, if you should become ill.

If you are not already, make use of day programs or place your loved one in a facility to relieve your caregiver burden is sometimes the best thing you can do for your loved one.  Caring for your own health means you can look after your loved one longer.

Remember, the Alzheimer’s Association has a Helpline available 24/7.  You can call them to relieve stress as a caregiver and ask them to give you a start on your Plan B.

Lakelyn – How about some more suggestions for engaging with your loved one at home?

David – If you do not live with your loved one who has dementia you can visit 6′ apart.  You will have to explain and remind about the quarantine.  Most care facilities will not permit visiting at this time.  Pretty much everything we do together can be adapted by using technology, particularly Zoom, WhatsApp, Skype, Facetime, Webex, etc.

Read aloud, share family news, have a chat

Ask your loved one’s opinion about whether to keep or toss items in a wardrobe, closet or attic

Share music and/or sing together

Do yoga, tai chi, or other exercise/meditation

Play games (blackjack, Yahtzee, Monopoly, Clue, etc.)

Lakelyn – Technology is huge right now.  I came across an article about using apps with people who have dementia.  It categorized apps for different uses.  I love Grandpad.

[Lakelyn didn’t provide a link to the article she mentioned, but I found an article online which categorizes “25 Useful Apps for Dementia Patients and Carers,” at: uksmobility.co.uk/blog/2016/07/25-useful-apps-for-dementia-patients-and-carers/]

Low-tech socialization, like drive-by visits with cheers and music to greet family members whom you cannot get physically close to.

David – Self care looks different for everyone, but all caregivers need to find out what respite they can do for themselves now.  These are the proven methods for reducing stress:

Get outside


Meditate – Doesn’t have to be formal, just sit in the garden for 5 minutes and breathe

Connect with old friends or family (cards/letters, phone, video chat, email, text, in person 6’ apart)

If you’ve had difficult relationships with family members, or a row with a friend, consider forgiveness

Sometimes, when someone develops dementia, they have forgotten the bad history and you can reconnect without that baggage in the way – at least from their perspective

Laughter (any source: sitcoms, internet memes)

If you have been disconnected from caregiving for someone in your family, consider getting more involved when the shelter-in-place is lifted.  Connect with that person’s primary care partner now to work out the place where what they would find helpful overlaps with what you are able/willing to do to help.

Appreciate those who are still doing hands-on caregiving, whether it be family, in-home carers or facility staff.


Q:  Mom temporarily living with daughter and has sundowning, is swearing and upset.

A:  Google ‘sundowning’ for some tips. When you have dementia, your day is exhausting. Plan for a late afternoon snack, ice cream, tea party, easy activity/craft do distract your Mom.  Turn on lights to prevent shadows.  Declutter your home.  Encourage a short afternoon nap.

Q:  As a caregiver, I want to wear masks and gloves but feel it may cause fear in someone with dementia.

A:  Stand 6′ away and reveal your face while you introduce yourself, put it back on before you move closer. Explain that the doctor wants you to wear PPE because of the quarantine.

Q:  How do I help my loved one to understand what’s going on with the quarantine and why we can’t get physically close?

A:  Everyone with dementia is different. Some will understand, others won’t. Some will remember for awhile, others won’t.  Wear PPE and explain why you aren’t hugging, etc.

If you live with a senior or other person who is at risk for serious illness if infected with covid-19, you can designate a ‘sterile’ zone in your home where visitors must where mask and gloves or wash up before entering.  This can work especially well if you have two bathrooms in your home and a bedroom and/or sitting area for the at-risk person.

Q:  What to do when you have a loved one in a facility and you can’t visit. Some facilities are so strict, you can’t even send in things.

A:  Ask the facility to make Facetime, WhatsApp, Zoom, etc. opportunities available.  This doesn’t always work well.  Consider an old fashioned phone call.  Drop off favorite foods or care packages, if it is permitted.  People with dementia are more resilient than we give them credit for, especially if they have short term memory loss and don’t realize it has been weeks since they’ve seen you.

Q:  How to find online sessions to engage Mom in conversation or music?

A:  YouTube has a bunch to watch. Grandpad is a good tool to use with seniors. There are a bunch of free concerts, plays, museum tours, zoo cams, etc.  Invite your Mom to dress up and attend an ‘evening’ concert, then connect with Facetime and cue up something online.  Take a ‘vacation’ by Googling scenes from Hawaii, or elsewhere.  Create a restaurant in your home (print a menu, dress up, add light music, flower or candle on the table, etc.)

Q:  Dad has no hobbies and can’t get around well. Family struggles to engage with him.

A:  Apathy can be a symptom of dementia. If your father had always been more engaged in life, ask his doctor about depression. Tell him you need exercise so please toss ball with me.  Easter Sunday service online, please join me.  Cat or dog visit or brushing.  Spilled poker chips, please put them back in the tray by color.  “30 Things To Do in 30 Seconds or Less” is a chapter from David’s book.  The list is available online at: bestfriendsapproach.com/wp-content/uploads/2017/02/30-Activities.pdf.   Hand massage, opinion about clothes, wrapping gifts, going through catalogs to shop for a birthday.