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:
- Get up, wash your face, and get dressed
- Prepare breakfast
- Eat breakfast and take morning medications
- Discuss the news over coffee
- Brush teeth
- Work on a project or reminisce over old photos
- Take a break with quiet time
- Take a walk, dance, or toss a ball
- 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:
- “Do you need to go to the bathroom?
- “Walk to the toilet.”
- “Turn to face me”
- “Back up.”
- “Pull down your pants.”
- “Pull down your underwear.”
- “Sit down now.”
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.
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.