Category Archives: Caregiving – Dementia

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

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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:

www.youtube.com/watch?v=S1nQVYQdsVg&feature=youtu.be

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

memory.ucsf.edu/covid#caregiver-webinar

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

Robin

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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

Resources

Questions-and-Answers

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

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“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:

www.youtube.com/watch?v=BsKMUCcfehk

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

https://ucsf.co1.qualtrics.com/jfe/form/SV_3gCsLd4Ed4CRaOF

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?
www.brainsupportnetwork.org/what-is-lewy-body-dementia-and-how-is-it-treated-ucsf-webinar-notes/

Behavior and mood symptoms in Lewy body dementia
www.brainsupportnetwork.org/behavior-and-mood-symptoms-in-lewy-body-dementia-ucsf-webinar-notes/

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.

Robin

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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:
www.alz.org/media/Documents/alzheimers-dementia-home-safety-checklist-ts.pdf

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

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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.

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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.
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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.
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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

Read

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&A

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.

 

“Having a Back-Up Plan – What if You Get Sick?” – UCSF caregiving webinar notes

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“Having a Back-Up Plan – What if You Get Sick?” – UCSF caregiving webinar notes

In response to the covid-19 outbreak and shelter-in-place orders, the UCSF Memory and Aging Center (MAC) is hosting a weekly caregiving webinar series.  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.

Thanks to Brain Support Network local support group member Helen Medsger for alerting us to this caregiving webinar series.

Webinars are presented every Wednesday from noon to 1pm (CA time).  Check out the schedule (memory.ucsf.edu/covid) of upcoming topics, register for upcoming webinars, and view recorded past webinars in the series.

The first topic presented on April 1st was “Having a Back-Up Plan – What if You Get Sick?”  Two terrific RNs at the MAC were speakers — Jennifer Merrilees, RN, PhD and Nhat Bui, RN, NP.

The recording of the April 1st webinar is here:

www.youtube.com/watch?v=S1nQVYQdsVg&feature=youtu.be

Reviewing the webinar recording or reading the notes below is a must for all caregivers at this time!  It is always a good idea to have a back-up plan because it is always a possibility that a caregiver may become ill, injured, or otherwise unable to provide care.  The covid-19 pandemic brings some urgency to the issue of creating or reviewing your back-up plan.  The speakers make the point that a back-up plan should include information about end-of-life care preferences.

Thanks to Brain Support Network staff member Denise Dagan for attending the webinar, and sharing her notes.  Denise says:

This webinar walks caregivers through who should be your back-up person (or people) and what information they will need to step into your shoes.  In addition, it provides links to several resources to help caregivers:

  • Identify community caregiver support (volunteers, in-home care services, etc.)
  • Create a personal care plan (printable worksheet)
  • Have a difficult conversation about end-of-life wishes
  • Complete an advance directive
  • Stay socially connected
  • Keep up to date about covid-19

See Denise’s notes below.

Robin

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Having a Back-Up Plan in Place – What if You Get Sick?
Webinar hosted by UCSF Memory and Aging Center
April 1, 2020
Presenters:  Jennifer Merrilees, RN, PhD and Nhat Bui, RN, NP
Notes by Denise Dagan

What is a back-up plan?

A back-up plan:

  • Is a way to be prepared for meeting your loved one’s needs in the event you, the caregiver, gets sick and cannot manage caregiving responsibilities.
  • Ideally, you’ll never need a back-up plan, yet it may offer you peace of mind to know you’ve got one.
  • Major considerations include WHO could care for your loved one and WHAT is needed to ensure a smooth transition in care.

Think about the people/resources you rely on for support.  

* Ideas may include a family member, friend, neighbor, clergy, or a member of your support group whom you’ve grown close to.  These people may be providing emotional connection, advice/problem solving, hands-on care, meals or errands.  Due to covid-19 these support people may not currently be available.  Day programs are closed, you may have asked in-home caregivers to suspend visits

* The Alzheimer’s Association 24/7 Helpline (800-272-3900)

* Your health care provider, a case manager, social worker or nurse

* A counselor or therapist

Make a list of people you can call on if you need assistance:

– This can be family, friends, neighbors, clergy, or members of your support group.  It’s important to ensure that the person or people that are on your back-up list know that you may call upon them to help.  Ensure everyone understands just what type of back-up they may be asked to provide

– Consider what decisions you should make ahead of time:

    • Will help come to you or will you go to them?
    • Consider community resources.  Most are still running during covid-19.
    • Consider hiring an in-home care aid or placing your loved one in a care facility.  Care facilities have new rules during covid-19 both for accepting new residents and permitting visitation.

– Community and Aging Resources:

Keep your health care provider informed:

  • Connect early with your and your loved one’s health care provider.  There may be delays in hearing back so contact them early and often.  They may be able to help you problem solve and/or create a back up plan with you
  • Keep them apprised of your needs and your back-up plan
  • Discuss protocols for covid-19 screening

Things to have on hand that pertain to the person you care for:
(Gather in one visible, accessible place documents and information your back-up person/people will need)

– Health insurance card(s)

– List of current medical conditions, medications, allergies

– Contact information for key people involved in your loved one’s care (health care provider, family members, friends, neighbors)

– Healthcare advance directives (documents that spell out a patient’s wishes for end-of-life care)

A care plan:

A care plan allows you to write down important aspects of care.  For example, how the person communicates their needs and express emotions; what a typical day is like (bedtime, preferred activities), and tips for successful care.

You can write a care plan in any way you like, as long as it is organized and easy for your back up person/people to find and read.  A sample worksheet is available at:

memory.ucsf.edu/sites/memory.ucsf.edu/files/Personal_Wellness_Plan_%28CareEcosystem%29.pdf

Have needed supplies organized and readily available:  Suggestions include —

    • Several days supply of medications (some experts recommend a 90-day supply) for both yourself and your career
    • Change(s) of clothing and toiletries
    • Needed supplies such as incontinence briefs, wipes, hearing aid batteries, denture cleaner and/or adhesive, glasses, etc.
    • Comforting objects, activities, and/or music player with earphones
    • Preferred snacks
    • A note on the outside of the emergency bag to remind you to include a cell phone and charger

Advance directives:

– A way to document end-of-life decisions and your values about your loved one’s care and their values about their own care.  If you have one, find it and renew it.  It’s OK if you can’t sign one or get it witnessed now.  Reading it and discussing it to have a plan in place can still be helpful.

– The Conversation Project (theconversationproject.org).  Facilitates difficult conversations.  Walks you through issues to consider and how to put preferences for end-of-life care in place.

– Share your notes by scanning, faxing, emailing, or sending pictures of the document to the people that you trust and your healthcare provider.

– Resources to help you prepare an advance directive (updated for covid-19):

If you get sick:

If your symptoms are mild and you can stay home:

  • Alter your expectations fro your loved one’s care.  If they stay in their PJs all day, don’t get bathed daily or watch more TV than typical, that’s okay>
  • Most important thing is to ensure safety in your home.  If the person you care for is at risk for wandering, keep doors bolted.  Keep a current photo of them.  Consider enrolling them in the Safe Return program through the Alzheimer’s Association.  If your loved one is unsafe in the kitchen, disable the appliances.
  • Put activities into place that require the least amount of effort by you.  Have activities set up where your loved one usually sits.  Remote control devices for television and music

If your symptoms are more severe and you need care:

  • Ask your back-up person to assume care of your loved one
  • Notify your healthcare provider and your loved one’s healthcare provider
  • Call 911 or go to your emergency room for emergencies
  • If you need to go to the hospital or emergency room and there is no one to care for your loved one, bring them with you.  Explain that you are their caregiver.

Resources for staying connected:

  • Alzheimer’s Association 24/7 Helpline – 800-272-3900)
  • California resources:
    • Covia: online and phone support and activities:  covia.org/services/well-connected/ or 877-797-7299
    • Institute on Aging 24-hour Friendship Line:  Serves Bay Area counties 800-971-0016 or 415-750-4111

Resources for staying informed about covid-19:

  • Centers for Disease Control: https://www.cdd.gov
  • U.S. Department of Health and Human Services: https://www.hhs.gov
  • This webinar will be posted on the UCSF Memory and Aging website and we will include copies of the documents discussed today.

Subsequent webinars in this series will go into more detail about obtaining supplies, protect your health as a caregiver, etc.

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Question & Answer

Q. For those with family members who don’t live nearby, what if remote back up plan people cannot mobilize to help?
A. Think more broadly about people in the area who wouldn’t have to travel and who could be part of a second tier back up plan.  Perhaps you can investigate a local in-home care agency you can employ?

Q. Can Adult Protective Services be a resource?
A. Anecdotally, caregivers who have reached out to county CPS out of concern that they would not be able to provide adequate care for their loved one.  In more normal times, CPS has been helpful in directing families toward community resources to make individual care situations safer.  If you feel there is nobody to help you and you need to be hospitalized, CPS may be the only resource who can effectively step in to monitor the situation and put care in place for your loved one’s safety.  Obviously, it is not ideal, or should it be your first step, but it is a resource.  You can even reach out to local law enforcement if your situation is entirely unsafe.

Q. Husband has Alzheimer’s and caregiver has asthma.  In-home care are washing hands, disinfecting, etc.  What else can they do to protect their health?
A. You should still continue to have in-home care.  You are doing just the right things.  Gloves, masks, gowns too, if they are available. Be sure to tell caregivers not to come if they are feeling at all unwell.  Ensure you have enough medications in stock.  This wife should also connect with her healthcare team to develop a plan for her care and prevention of her becoming ill.  She should talk with them about what her care plan is and what she should do if she does become ill.  This can take longer than it did before the covid-19 outbreak so call soon.  You may be directed to a tele-health appointment or just a phone call for these non-urgent matters.

Q. How can caregivers address mood symptoms, mental health suffering, anger, aggression, etc. especially during shelter in place?
A. Everyone feels more anxiety, worry, anger, frustration because our routines have shifted.  Disruption of routing is especially hard on people with dementia.  We are all trying to stay informed, but the news provokes anxiety so consider turning off the news.  Put on music or positive message TV and movies.  If the caregiver’s emotions are running high, those are cues that provoke higher level of emotions in care recipients.  Consider calming yourself to calm your entire household.

Next week this webinar series will present suggestions for keeping active, distracted, etc.  Can you identify a pattern to the mood changes.  Is there a triggering event, like the news or end of the day (sundowning).  Change what you can to prevent those mood changes from happening.

Q. Caregiver not able to take Mom out to enjoy sunshine.  How to minimize risk and still get out.
A. Exercise is still an essential activity so it is permitted.  The restriction is to stay six feet from others.  This can be difficult to abide by with someone who has memory loss.  Perhaps hold hands and distract them from moving too close to others.  Consider wearing a mask if you must pass other more closely.  Consider going for a car ride, just to get out. Perhaps take a picnic to share in the safety of your car.  There are live broadcasted and online archived exercise classes, like yoga, tai chi, chair aerobics, etc.

Q. Husband doesn’t remember to social distance if we go out for a walk.  Driving gets us out, but doesn’t get him exercise.
A. Consider going out when there are not many others out?  Early morning walk or take a less frequented route? If you and your care recipient wear a mask and others around them are, it can be a reminder about social distancing.

Q. Grocery stores social distancing doesn’t work for those with dementia who don’t remember to social distance.
A. You don’t have to shop just during the early morning senior shopping hours.  Shop late in the day or consider having your groceries delivered.  It may be good for you to get out and shop, so ask a friend or relative to keep an eye on the person you care for.

Q. At what point do you recommend calling for help if the person you are caring for is becoming aggressive.
A. Can you identify and modify triggers of aggression?  Stay in touch with your medical team so they are aware of the situation.  They may be able to help problem solve the situation.  Ask how you might manage this behavior.  Consider medications.  Give the medical team feedback as to how their recommendations are working.  The Alzheimer’s Association Helpline may be able to help de-escalate the situation.

Q. Spouse recently unable to walk unaided so need in-home care.  How safe is it to have in-home caregivers coming in?
A. Hire from an agency which employs those certified in safe care practices.  Always ask the healthcare providers directly to NOT come to work if they feel at all well (cough, exposed to someone who’s ill, traveled to exposed area, fever).  If this person’s care needs have recently changed dramatically, there is some care education that can be useful to this caregiver with respect to learning how to look after someone who is now bed bound. There are many online videos so the caregiver can learn about safe positioning during eating, in-bed bathing, repositioning in bed, toileting, transfers, etc. so the caregiver doesn’t hurt themselves doing these tasks.  A referral to home care may be appropriate, too.  That would bring a nurse and other resources to the home to teach the family caregiver these tasks and what equipment will be helpful to have in the home henceforth.

Q. What information is helpful to share with people who need specific information to provide the best care possible?
A. A personal healthcare plan is a roadmap to provide the best care possible for someone. It is especially useful in a transition of care from the primary caregiver to in-home care or a residential care facility.  This would be the best thing to have in place at this time – just in case the primary caregiver becomes ill, so your back up plan person/people can step in seamlessly.

Q. For those who have not completed an advance directive and the person with dementia can no longer make decisions, what to do now?
A. Don’t panic if you don’t have an advance directive.  It is still important to write down what you know about the wishes of the person you care.  There are templates and forms you can use, as mentioned in this talk, but it can just be handwritten and doesn’t need to be signed and witnessed.  These documents are guidelines so care of an individual align as closely as possible to the person’s wishes.  Most healthcare services are willing to take your notes into account.

If you have an advance directive, now is a good time to update it.  These documents can always be updated as new information is learned so write down what you know now and share it with other family members and medical team.  Many times people don’t remember if they have ever made an advance directive.  Contact your clinic to see if one is on file. If not, look around the house, safety deposit boxes, etc.  If you don’t find one, jot down what you know and share it with the medical team.

Q. What about a personal healthcare plan for caregivers?  Are there any recommendations that should be included to reduce risk of contracting covid, other than social distancing, hand washing, etc.
A. There is a lot of research into treatments and creating a vaccine for covid, but there are no known supplements, medications to prevent or treat this disease.  That is why we are relying on the public healthcare measures.  If you have a chronic condition, like diabetes or high blood pressure, etc. the best plan is managing those conditions as well as possible for your best health in the short and long term.

Q. How do you find a professional to step in to care for your loved one?
A. Start with in-home care agencies in your area.  The caregivers will be screened and well trained. A case manager or social worker can help you assess your needs and put you in touch with an in-home care agency.

Q. Advice for a wandering person who will remove a medic-alert bracelet?
A. Sometimes, you can secure those bracelets in a way that is hard to remove.  If caregivers also wear a medic-alert bracelet, you can gain cooperation in keeping it on.  There are electronic devices you can employ.  The Alzheimer’s Helpline has many suggestions for keeping ID on your loved one.  Let your local police department know about your loved one and provide them with a good photo.  Be sure they have a wallet or purse with ID or keep a note with their ID in their shoe or a pocket each morning.  You can regularly dress them in colorful clothing, take a photo of them each day to show what they are wearing for those who may be looking for them later in the day if they should wander off.

Brief summary of recommendations – essentially, who might help you and what will they need to step into your shoes.

  • Identify your back up person/or people.
  • Ensure those people know you may call upon them.
  • Ensure those people know what they may be asked to do.
  • Think about who can be your second tier back up people – extended family member, neighbor, etc.
  • Gather information your back up person/people will need for your care receiver’s best care.
  • Make sure your back up person/people know where to find this information:
    • Personal care plan.
    • Insurance cards
    • Advance directive
    • List of current medications, dosages and times
    • Contacts involved with the person’s care (doctors, pharmacy, family, neighbors, clergy)

For upcoming and recorded webinars in this series:  memory.UCSF.edu/covid

“Diagnosed with dementia, she documented her wishes for the end.”

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“Diagnosed with dementia, she documented her wishes for the end.”

This article in yesterday’s Washington Post about a woman who completed an advance care directive.  Her care facility would not follow her wishes since the woman had been diagnosed with dementia.  See:

https://www.washingtonpost.com/health/diagnosed-with-dementia-she-documented-her-wishes-for-the-end-then-her-retirement-home-said-no/2020/01/17/cf63eeaa-3189-11ea-9313-6cba89b1b9fb_story.html

Diagnosed with dementia, she documented her wishes for the end. Then her retirement home said no.
By JoNel Aleccia 
Washington Post
Jan. 18, 2020 at 6:00 a.m. PST