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danmoser239@gmail.com Resource Page

Welcome!

Thank you for your membership with Cognitive Concierge.

I look forward to working with you!

Your ambassador is Maureen Brown, MS, OTR/L

Maureen can be reached via email at Maureen.Brown@mycognitiveconcierge.com

What is Frontotemporal Dementia?

https://www.youtube.com/watch?v=YQyeDL019C8

Maria’s team:

Family Doctor

CRNP-coming to house in mid-September

Phlebotomy in mid-September

Neurologist-appointment in Bonita Springs in late September

Personal Trainers: Lindy, Brian

Joan, dietician friend

Speech Therapists: Adam, Leann and Amanita

Palliative care 1x/month

Art Therapist: Ava

Neuropsychologist: Anne Welles

Other MD specialists: Gynecologist, Urologist

Maria’s Family

Dan’s Family

Running community

Co-worker and OT friend, Janet

Goals:

Maintain language function as long as possible

Be safe and comfortable

Be pain-free

Be aware of her main needs

Current concerns:

Increase in proprioception/kinesthetic and visual-perceptual issues over last week

Listing to the left

Right sided weakness

Stuffing of food and potential for choking hazard

Obsessive-Compulsive Behaviors (OCD) including counting items, focusing on animals

Spitting/controlling saliva

Avoids looking at self in mirror

Childlike affect and high-pitched voice

Disinhibition with walking around house at shower time

Recent incontinence of bladder and feces

Things to work on this week

Consider Randall’s ESL lab for semantic speech therapy work at home

Consider asking Family Doc/psychiatrist about appropriateness of low-dose SSRI to target OCD behaviors

Consider safety walking down stairs and alternatives (Is it nearing the time to transition bedroom to downstairs after Dan’s brother and Maria’s sister come to visit? Will moving Maria’s puzzle area to living room make sense as well? Does this necessitate landscaping considerations so she can see the street view that she loves? Slippers with a back and non-skid sole are safer than slip-on type with smooth sole)

Consider safety in the bathroom given recent change in proprioception/kinesthesia (Are there grab bars installed in shower? Is there a good non-skid mat on the shower floor?Would a shower chair and hand-held shower be appropriate? Is there room for a chair in the shower area for Maria to dry herself off in seated position? Versa frame around toilet may help with increasing safety and decreasing feeling of falling with transfers on and off the toilet.)

Appointment for urodynamic assessment of urinary function

Things your ambassador will be working on

Identify behavioral strategies to address incontinence issues

Offer additional semantic strategies for word finding/communication

Research additional behavioral strategies to limit spitting incidences

Strategies for consistent use of on-off button on home phone

Connect with Janet to discuss her findings of late when playing cards with Maria

Things we have accomplished

Addressing proprioception/kinesthetic issues with CRNP and neurologist in September

Maureen reaching out to Maria’s team and friends to introduce self

Identify strategies to discourage habit of overfilling mouth when eating by having her put one item in mouth then complete an eight count of chewing prior to swallowing and taking more food

Cut foods up into small bits (especially grapes)

Tactile cues for righting herself in space (ie: touching side of head to gently guide her to the right)

Assisting Maria when she has difficulty figuring out how to start a task (put theraband loop at ankles and give her directions to “pull up like underwear” to her knees; assisting with shoes if the situation is time-limited or if she becomes frustrated with the process, otherwise, allowing time and space to complete the task on her own–bottom step with foot propped has worked well, as has proceeding with right then left shoes)

Forwarded copy of Anne Wells, PhD neuropsychological report to Maureen

Root cause of changes in proprioception/kinesthesia most likely due to progression of disease process into more of temporal and parietal lobes but neurology will be able confirm findings

Magnesium can cause loose stools and can complicate a bowel program

Maria may be having difficulty with identifying sensory messages in a timely or appropriate manner (Maria may interpret “touch” as “pain”; Maria may not get proper signaling from the bladder to void)

Support for the Caregiver

Respite and a supportive community assist with preserving mental and physical health of the caregiver. Respite may come in the form of a daily, routine leisure activity in which your loved one will independently engage, a friend or relative who will spend time with your loved one, or a formal community program for engagement. Knowing your loved one is safe and content will allow you take time to care for yourself to complete necessary errands or engage in work or leisure tasks with full attention. Support groups will allow you to find a safe space to discuss common issues, problem solve with others, and create a network of resources.

https://www.theaftd.org/living-with-ftd/aftd-support-groups/

https://www.brain.northwestern.edu/care-and-support/index.html

https://www.raredementiasupport.org/meetings/

Resources and Information

http://theaftd.org

https://www.brain.northwestern.edu/dementia/ftd/index.html

https://www.nhs.uk/conditions/frontotemporal-dementia/

https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/frontotemporal-dementia

https://www.ninds.nih.gov/Disorders/All-Disorders/Frontotemporal-Dementia-Information-Page

https://www.webmd.com/alzheimers/guide/picks-disease

https://www.alzheimers.net/what-is-picks-disease/

https://www.raredementiasupport.org/wp-content/uploads/2020/05/Arts-and-culture-resources-2020.pdf

https://memory.ucsf.edu/caregiving-support/tips#

https://www.nia.nih.gov/health/types-frontotemporal-disorders

On Grief and Grieving Kübler-Ross, Elisabeth and Kessler, David

The 36 Hour Day Mace, Nancy L. and Rabins, Peter V.

Clinical Trials

https://memory.ucsf.edu/research-trials

https://www.allftd.org

https://www.theaftd.org/research-clinical-trials/ways-to-participate/

http://www.ftd-boston.org

https://www.brain.northwestern.edu/join/active-studies.html

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Microsoft Teams Tutorial

Using Microsoft Teams Step-by-Step 

You have two options to join a video call with one of our Cognitive Ambassadors:

Option #1 (Recommended): You can join a Microsoft Teams meeting as a Guest without creating a Microsoft 365 of Microsoft Teams account. Watch the video below to see how to join a teams meeting as a guest.

For desktop computers (PC or Mac): The image below is the screen you will see when you enter a meeting. Take a moment to check your settings. Check to make sure your camera is on, as well as computer audio, and your microphone. The toggle should appear like these below.  You may now click “Join Now” to enter the meeting.  

For mobile devices: The image below is the screen you will see when you enter a meeting. You can see in this example below the user has their video and microphone turned off. Tap the camera and the microphone icons to turn them on.  You may now click “Join Now” to enter the meeting.  

Option #2: You can create a Microsoft 365 or Microsoft Teams Account and then join Microsoft Teams Meetings. Watch the video below to see how to create an account with your personal email address.

After you have created a Microsoft Teams account, visit https://www.microsoft.com/en-us/microsoft-teams/download-app to download the Microsoft Teams App. This may be done on your mobile device or computer. On a mobile device, you may also download the application from your App Store.  

Once you’ve selected the “download for desktop” or “download for mobile”, wait for the download to complete and then open the application.  The icon will look like this. 

Once you’ve logged in, click on the meeting to open it (you may do this from your calendar in Teams).

For desktop computers (PC or Mac): The image below is the screen you will see when you enter a meeting. Take a moment to check your settings. Check to make sure your camera is on, as well as computer audio, and your microphone. The toggle should appear like these below.  You may now click “Join Now” to enter the meeting.  

For mobile devices: The image below is the screen you will see when you enter a meeting. You can see in this example below the user has their video and microphone turned off. Tap the camera and the microphone icons to turn them on.  You may now click “Join Now” to enter the meeting.  

Posted on

barbarabrock57@gmail.com Resource Page

Thanks for signing up for a Concierge Membership! Your Cognitive Ambassador is Taryn Bushey.

Taryn can be reached vie email at taryn.bushey@mycognitiveconcierge.com.

Taryn

Your Ambassador Meeting Zoom Link

Click here to schedule an Ambassador Meeting using our online scheduling tool now! We will use Zoom (zoom.us) to conduct video meetings with your Cognitive Ambassador. Your Ambassador will send you an email prior to your meeting with the weblink to join the Zoom meeting. Just in case we have also included the link below, just click below to join your next meeting!

Current Weekly To Do Lists:

Ambassador To-Dos

  • PAIN AD Scale: send to Barbara to give to staff (emailed to Barbara)
  • Reach out to SLP or find backup SLP options (emailed Mary Kate Painter, SLP; awaiting response)

Barbara’s To-Dos

  • Meet with hospice nurse to review Plan of Care, PAIN AD Scale, and ask hospice nurse what diagnosis hospice is using to cover services.
  • Follow up with Wellness Director re: Private Caregivers, How to communicate better with staff and to get consistent updates.

Past Weekly To Dos:

  1. Take picture of call light necklace. Have someone hold the necklace and place both thumbs on the button for the picture. Print out picture and write “Press call light with both thumbs for help.” Post sign at end of bed, where your Mother can easily see this visual aid. Show her the sign and have her practice pressing the call light button with both fingers (5-10x in a row), if possible.
  2. Ask assisted living staff if they can play music on CD player (on low) each morning.
  3. Print out visual communication aid (Becky emailed). Place pages in plastic page protectors and next to bed. See if your Mother can point to each picture when you say the word. (We can put fewer pictures on the page if needed). Show assisted living staff the communication aids and ask if they can use the visual aids when they are speaking with your Mother. Show them how to hold up the visual aid to provide your Mother with choices when they ask her a question.
  4. Request orders for Speech Therapy Bedside Swallow Evaluation (first priority) and Speech-Language Evaluation
    • SLP can provide recommendations for diet modifications and swallow compensatory strategies to make eating and drinking safer and more comfortable
    • SLP can develop personalized communication supports (communication book/wallet) and train AL staff on how to use visual aids to help with communication; can also work with staff to develop consistent daily schedule, with integration of meaningful activities (reading daily devotions, staff setting up CD player and CDs on bed, etc)
  5. Follow up on request for Occupational Therapy Evaluation
    • Assess need for wheelchair cushion (priority)
    • Fall safety – transfers and mobility around apartment; assess ability to use pendant to call for help
    • Showering strategies – staff training
    • CD player – assess ability to operate CD player. Use visual aids/stickers on CD player for important buttons.
  6. Take a short video of your Mother’s speech to share with Becky and Taryn (not a priority)
  7. Ambassador to develop signage
    • yes/no communication
    • meal set-up preferences
  8. Barbara to follow up with Hospice company to discuss Careplan
    • showers vs bed bath preference
    • reinstate monthly or weekly weights
  9. Barbara to follow up with ALF
    • Are private duty caregivers allowed?
    • Encourage Mom to attend meals in dining room
  10. Keep snacks/”appetizers” within reach on table

Care Team:

  • Speech-Language Pathologist: TBD
  • Occupational Therapist: TBD

Social Network:

(people your Mother communicates with on a regular basis)

Family:

  • Catherine
  • Carol
  • Barbara

Staff Members at AL Community

Leisure Activities:

person holding vinyl record

Listening to Music:

  • Develop system for having CD player easily accessible while in bed or recliner
  • Develop visual cues to facilitate ability to independently operate CD player
belief bible book business

Church, Bible, Daily Devotions

  • Ensure consistent routine for staff to assist with turning on TV to watch Church each week
  • Establish location for Daily Devotions, for reading in bed
woman getting her hair shampoo

Hair Salon

  • Goal: Once a week to get hair done

Activities of Daily Living:

  • Phone Calls
    • Research ability to install a “Memory Phone” in room, to more easily call daughters by pressing picture buttons
  • Showering Strategies
    • TBD by OT
  • Oral Care System
    • Taryn to develop visual aid/oral care “kit” to allow for better follow through with oral care. (emailed to Barbara)

Communication Strategies:

Speaking:

  • Personalized visual communication aids (communication book/wallet)
  • Family/AL staff – training/education on positive communication strategies and level of cueing needed to use visual communication aids

Comprehension:

  • TBD

Swallowing Strategies:

  • TBD after SLP Bedside Swallow Evaluation

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contact@mycognitiveconcierge.com Resource Page

Resource Page (contact@mycognitiveconcierge.com)

Thanks for signing up for a Concierge Membership! Your Cognitive Ambassador will notify you when personalized content is added.

YouTube Video

This is sample text for the client. google.com

  • first bullet
  • second bullet
  • third bullet

Cognitive Concierge Video and Image

cute roe deer pasturing on green meadow in wild valley
Photo by fotografierende on Pexels.com

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becky.khayum@gmail.com Resource Page

Resource Page (becky.khayum@gmail.com)

Your Cognitive Ambassador

Thanks for signing up for a Concierge Membership! Your Cognitive Ambassador is Becky Khayum and she can be reached via email at becky.khayum@mycognitiveconcierge.com.

Becky Khayum

Click here to schedule an Ambassador Meeting using our online scheduling tool now! We will use Zoom (zoom.us) to conduct video meetings with your Cognitive Ambassador. Your Ambassador will send you an email prior to your meeting with the weblink to join the Zoom meeting. Just in case we have also included the link below, just click below to join your next meeting!

https://zoom.us/j/7853624793?pwd=VG5pRzBTdk13WXpSNHB0djBkSDJCUT09

Weekly To Do List:

  1. Order iPhone with Face ID option.
  2. Select several grids with topics/items that you use in daily conversations. Print out Grids and upload to Google Drive folder.
  3. Wednesday Aphasia News Group: Write weekly script with bullet points. (See instructions under “Reading” section).
  4. Continue using Bookshare and EasyReader for reading novels and newspaper.
  5. Read Northwestern research article about PPA and memory skills. (Resource section)

Collaboration with Care Team:

  • Speech-Language Pathologist: Tracy Smith (Shirley Ryan)
  • Occupational Therapy: Matt Brown (Shirley Ryan)
  • Neurology: Dr. Green (Northwestern)
  • Primary Care: Dr. Robinson (Northwestern)

Aphasia/Support Groups:

  • Northwestern SEED Program
  • Lingraphica PPA Groups
  • San Jose State SPARC Program

Leisure Activities:

1. Run (daily)

adventure athlete athletic daylight
Photo by Pixabay on Pexels.com

2. Play guitar

person playing brown guitar
Photo by 42 North on Pexels.com

3. Read newspaper articles

the new york times newspaper
Photo by cottonbro on Pexels.com

4. Gardening

healthy nature garden tomatoes
Photo by Markus Spiske on Pexels.com

Nature/Gardening Activity: Try using the “Seek” app to identify plant and animal species! “Seek” allows you to take a picture of a plant or animal, and it will show the name of the species and information about it. Watch video to learn more!

Seek App for identifying plants and animals.

5. Drawing

person holding black pen
Photo by Lex Photography on Pexels.com

Drawing Activities:

  1. Pick an object in your house (examples: food item, kitchen utensil, clothing item, furniture). Take pictures of the object with your iPhone. Try taking pictures from different angles. Then, try drawing the object from different angles. Say the word aloud a few times as you draw it.

6. Birdwatching

Try using the “Merlin Bird ID” app to view lists of common birds in your area or identify a bird you have seen. You can also listen to different bird calls. Watch video to learn more!

Activities of Daily Living:

  • Laundry
    • Practice using visual aid to complete several loads of laundry. Identify which steps are difficult to follow. We will edit the aid as a team. Consider frames or plastic displays to post visual aids.
  • Cooking
    • Discuss goals/strategies for cooking at future session, if desired.

Social Network:

Family:

  • Shirley
  • Bob
  • Jamie
  • Tom

Friends:

  • Leah K.
  • Sam P.
  • Pam S.

Neighbors:

  • O’Malley’s (Nancy & Joe)

Bank Coworkers:

  • John
  • Bill
  • Mary

Communication Strategies:

Speaking:

  • Try to talk around the missing word
  • Use a paper communication support to find the missing word

Comprehension:

  • Eliminate distractions (turn off music and TV)
  • Speak face to face with eye contact
  • Key words: communication partner writes down key words during conversation
  • Visual supports: use technology or paper-based supports to supplement speech with a visual aid

Reading:

  • Newspaper articles: Try reading simplified news sources, such as Lingraphica Talkpath News. To determine comprehension, read the same article and then discuss afterwards.
  • Novels: Try reading paper book along with audio version or “book on tape.”

Writing:

  • Texting – strategies TBD

Alternative Augmentative Communication (AAC):

  • “Communication Station” – set up with visual aids, clock, dry erase board
  • Smartbox Grid (currently creating content)
  • Message banking (synthetic voice + own voice – in progress)
  • Communication Boards and Wallet (need to develop)
    • “Conversation Topics” visual aid, to narrow down topic of conversation.
      • Use PowerPoint template to create slides: 1 topic per slide and picture.
      • To Print: Go to print tab, then click on “Full page slides” tab. I typically select Portrait Orientation with 6 slides per page. If you want slightly larger boxes, then select “Landscape Orientation” with 4 slides per page. You would have several pages to your Main Topic aid with the 4 slides to a page.
    • Collaboration with SLP Tracy: Print picture boards from the Grid to use as paper-based communication supports.
  • Picture organization on the iPhone

Use PicCollage app for creating visual Communication Aids (for printing, emailing, or texting):

Cognitive-Communication Exercises: (goal of 60 minutes/day)

  • Reciting personal information and practicing signature – Daily, 5 minutes
  • News, Podcast, Bookclub – Odd days, XX minutes
  • Reading – novels or Talkpath News – Even days, XX minutes
  • Drawing activities – Even days, XX minutes
  • “Password” – Circumlocution – Even days, XX minutes
  • Script Training for Daily Conversation – Even days, XX minutes
  • Picture Taking for Daily Conversation (TBD)
  • Word Pantomiming Practice (TBD)
  • Tactus Therapy App (Naming & Reading Therapy) – Even days, XX minutes
  • Constant Therapy: (Consider reducing or eliminating from exercise plan)
  • Comprehensive Program for practicing personally relevant words (TBD)

Resources:

  • Picture-based cordless phones

Your existing internet provider (cable or satellite) should offer a phone service option that allows you to use a landline phone over the internet (otherwise called VOIP). See suggested steps below:

  1. Upgrade your cable or satellite internet provider package to include a voice over IP (VOIP) service. Ensure that the router/modem that your cable or internet provider has provided you has an RJ11 jack (this is the traditional phone line plug that we are all used to).
  2. Purchase Base With Photo Buttons (~$60) that will plug into your modem/router: https://www.vtechphones.com/store/pd/4144/SN5127-Amplified-Cordless-Phone-with-Answering-System-Big-Buttons-Extra-Loud-Ringer-Smart-Call-Blocker
  3. Purchase Wireless Bases With Photo Buttons (~$35 each) for various locations around the house: https://www.vtechphones.com/store/pd/4146/SN5307-Amplified-Photo-Dial-Accessory-Handset-for-SN5127-or-SN5147-Series-Phones
  • San Francisco Bay Elder Law Attorneys – Recommended by the team at the San Francisco office of the Alzheimer’s Association:

Trisha Friedeberg <tfriedeberg@kfslaw.net>
Rowena Navia <rnavia@kfslaw.net>  
Brent Kato BKato@kfslaw.net
Sarah Huffman huffmans@uchastings.edu
Sarah Hooper hoopers@uchastings.edu