tolatham@gmail.com Resource Page

Anne and Tom Latham’s Resource Page

Welcome to your personalized Cognitive Concierge Resource Page! We appreciate the opportunity to work with you on your individual priorities. This document will be updated to reflect any changes in needs or preferences and we will post all relevant strategies here for easy access. We will notify you when we update your Resource Page.

Your Consultants

Becky Khayum, M.S., CCC-SLP Becky.khayum@mycognitiveconcierge.com

Erin Cecchi, MSW, LCSW Erin.cecchi@mycognitiveconcierge.com

Maureen O’Neil Brown, MS, OTR/L, CBIS Maureen.brown@mycognitiveconcierge.com

http://www.mycognitiveconcierge.com

Office: 331.256.9134

Direct: 773.354.7539

Overarching Focus Areas

Best quality of life for both Anne and Tom

Creation of a comprehensive individualized care plan that will serve to integrate the efforts of all team members towards Anne’s goals of care

Home care for life is a goal

To improve performance of steps of Instrumental Activities of Daily Living (IADLs) and leisure activities and to increase confidence in completing these activities.

Prioritize IADLs/leisure hobbies where Anne would like to increase participation/independence

Identify meaningful and organized life participation goals that will guide speech therapy services, along with potential medical services in the future (e.g., occupation therapy)

Prioritize supports in the home environment, but also plan for potential future needs

Plan

Speech Therapy

Tom’s to do list-

• Scripting for the Cognitive classes
• Have Anne practice using a touch to Tom’s shoulder instead of looking to him. Sam explained that Anne needs to remain mentally focused on word retrieval and using a strategy versus turning her attention to request help from Tom.
• Practicing using the completed PDF versions of the communication book. We want Anne to find the appropriate pages in the book.  Sam educated Tom about how to scaffold his cues.
• Communication Chart linked Here This can be personalized and can use categories as a way to narrow down what Anne may be talking about. 
• Using Y/N Visual aid linked here They are printed and colored in because they don’t have a colored printer.  Tom is wearing the picture around his neck and using.  He knows to ask simple questions; once Anne answers, Tom needs to turn the question into a statement confirming the information. Tom needs to allow extra time to answer.  Tom  also purchased a yes/no sweatshirt that he is wearing.
• Continue to develop “personally relevant word lists” Recently completed Birds.  There are many lists in the TD snap. Susan has access to these and can provide them to Samantha.
• Check emails/texts/VMs/Call log together and delete information that is no longer relevant to reduce confusion
• Reviewed semantic feature strategies to help Anne use other ways to communicate what she wants to say.  Linked here. 
• Discussed that Tom talk with Anne about the importance of some communication exchanges.  If they are struggling to communicate something that isn’t worth the effort, they both need to signify it’s time to pass and maybe come back to it later.
• Practice talking for 5 minutes each day about something concrete- something that is happening outside/in the garden, a pictures, what they are cooking–Things that are in front of them that they can both understand. 
• Verbs have been increasingly more difficult for Anne. Becky has noted including an “action verbs” section in a Communication Book has been helpful for people in the past. In addition, Becky recommends talking with Samantha to get her expertise on this
• Discuss with Samantha best way to encourage Anne to independently looked through communication book as she doesn’t like Tom to be involved in her practice
• Work with Samantha to identify a variety of communication strategies that Tom/Susan can try when there is a communication breakdown, not just the communication book
• Discuss with Samantha the plan for Anne to stay for the first half of session then Tom/Susan will complete training for the second half of the session

Susan’s to do list- 

• Susan will continue to modify the TD snap and make PDF pages that will be printed.  Sam recommends that Tom print them as they are ready so Anne can adjust to each set of pages as they become available.
• Provide Samantha with 10 PDF screen shots of the most used TD snap pages via email so she can provide skilled feedback.

Long term goals:

1. Anne can use a combination of communication supports to communicate at home more easily with Tom.
2. Anne can use a combination of communication supports to more easily communicate about topics that are important to her.
3. Tom and Susan understand how to use “supported communication” strategies to best assist Anne’s communication at home and out in the community.

Short term goals:

1. Anne will use the TD Snap or paper-based visual aids to communicate about topics that are important to her (family, gardening, trips, etc).
2. Anne will use the TD Snap or paper-based visual aids to communicate at home more easily with Tom during daily conversations.
3. Tom and Susan will learn about supported communication strategies to use during daily conversations.

Cognitive Concierge Consulting

Tom and Anne’s To-do list-In Process

1. Communication Support System-identification, set-up and care partner training, using guidance from the Team and Speech Therapist
2. Decide ahead of each consultant meeting whether Anne will attend
3. Label plants in garden (PARTIALLY COMPLETE–TO CONTINUE IN 2024)

Tom and Anne’s To-do list-Completed

1. Weekend Family Visit (DONE)
   • Create scripts for each family member (questions/key words)
     • Provide brief bullet points to family members regarding communication tips:
     • 1:1 conversations are best
       • Anne may leave group conversations (e.g., meals) for a break
       • Limit the number of questions you ask Anne.
         • Give Anne plenty of time to speak. Wait 5-10 seconds during pauses in conversation. Anne may be collecting her thoughts before starting a new sentence.
2. Communication Book: Verb brainstorming template
   • Susan and Tom: Add verbs to template (Becky & Maureen will create and share)
   • Present template to Anne. She circles verbs she wants included in the Communication Book. (DONE)
3. Caregiver Hiring
   • Tom and Anne are on the wait-list currently for companion care/homemakers services with Day Kimball (DONE)
   • Work with Maureen to edit the draft of PCA application at 7/24/23 meeting (DONE)
4. Meet with Kristin Gardiner and Heather Benson at Care Plus More (live-in care agency) (DONE)
5. Please talk with your elder law attorney should you wish to draft an employment contract. (DONE)
6. Pause speech therapy with Kim after 10/27/23 appointment; plan to switch to Samantha McGovern, CCC-SLP for Speech Therapy (DONE)
7. Decide whether to prioritize speech therapy services or palliative care at this time using guidance from the Team (DONE)
8. Set up meeting with Lucy MacWilliams in 2024 as needed (DONE)

Susan’s To-do list

1. Using Becky’s sample, Susan can assist in making flash cards for Anne for the many plants and flowers in the gardens around your home. (DONE FOR NOW)
2. Aid, as needed, with simplifying recipes for ease of use and readily-available assistance
3. Assist, as needed, with a communication support system for Anne;
   • Regarding TD Snap pages, Becky gave general advice about having fewer icons on the main page and placing some icons in one folder
   • Becky explained purpose of communications book (an additional tool to use to aid communication); Becky notes Susan has created excellent pages and recommends printing these to form the communication book

Becky, Erin and Maureen’s To-do list-In Process

1. Discuss best plan for creating a communication support system for Anne and providing care partner training for such supports (Becky, Samantha)
2. Discuss speech therapy options and recommendations (Becky, Samantha)
3. PCA training plan, as needed (Becky and Maureen)
4. PCA daily log, as needed (Maureen)
5. PCA weekly activities planning guide (Team)
6. In preparation for advanced stages of the diagnosis, create list of food preferences, specifically for easy-to-swallow/soft foods, and having Anne circle her choices (Erin)

Becky, Erin and Maureen’s To-do list-Completed

1. PCA application (Maureen) (DONE)
2. Create verb list and template grid and share with Tom/Susan (Becky and Maureen) (DONE)
3. Maureen will complete in-depth vetting of Day Kimball Healthcare at Home, including Homemakers/Companion care, Homecare, and Palliative and Hospice Care (adjacent to Botta & Assoc.) www.daykimball.org/locations/day-kimball-healthcare-at-home/ (DONE)
4. Vet Live-In Care agencies serving the Eastford, CT area (DONE)
5. Becky will reach out to Kim Winter, MS, CCC-SLP to see how we can support her Speech Therapy services. Becky will also send Kim our Aphasia Resource Kit as a professional courtesy. (DONE)
6. Look at sample magazine content from Becky and provide feedback. (Subscribed to The Week (Junior) and enjoying it.)
7. Identify care preferences and future medical decisions in preparation for potential MOLST conversation at annual physical with Dr. Candow on 11/7/23 (Erin)
8. Discuss potential plan for Costa Rica trip; Becky will send tour guide contacts (Becky)
9. Provide recommendations for prioritizing options of Day Kimball Homecare services/palliative care and outpatient/telehealth Speech Therapy services (Team)
10. Provide information regarding different levels of care provided by Day Kimball Homecare and HomeMakers/companion care (Maureen)

Cognitive Concierge’s Long Term Plan

• Maureen will continue to work on cooking strategies and research freshly-prepared meal service companies, as needed.
• Maureen and Erin will work with Tom, Anne and Dr. Candow on Dementia Care Directive and MOLST form. Anne’s preferences can be viewed here: https://docs.google.com/document/d/19egXqXPrERio_KncKSZwbsev9iEftrKbmIIA1ZNIiAE/edit?usp=sharing
• We will work with Tom and Anne to educate and bolster any in-home private-pay personal care and homemaking services to support Anne’s goals, build a relationship with Tom, Anne, their family, and care team, and help to prevent Care Partner burn-out.
• We will develop and manage comprehensive individualized care plan which will integrate goals of all care team members
• We will help to identify appropriate OT services in home area to evaluate and complete activity analysis.
• We will provide PPA education and communication strategy training to all care team members as necessary
• We will provide education to friends and family: useful strategies to help increase success and comfort with conversation; education regarding environmental alterations which can help with success with communication; any other training which would be appropriate
• At the appropriate time, Maureen will complete in-depth vetting of medical supports that may be needed in the future, including memory care facilities and home services in the Eastford, CT area to ensure Tom and Anne have updated information to make any decisions on alternate living arrangements or in-home care, should the need arise. The following initial list has been provided by Tom.

1. Pierce Care (includes Memory Care?) https://www.piercecare.org/
2. Westview Commons https://www.westviewcommons.com/
3. Day Kimball Healthcare at Home (adjacent to Botta & Assoc.) www.daykimball.org/locations/day-kimball-healthcare-at-home/
4. Westview Health Care Center https://westviewhcc.com/

Tom and Anne’s Long-Term Plan

• Using the communication and activity logs, comment on any challenging situations that arise.
• During therapy sessions with Kim Winter, MS, CCC-SLP/Samantha McGovern, MS, CCC-SLP, share any suggestions from Becky that were discussed during our meetings.
• Share this Resource Page with any one you would like on your care team.
• Write down names and words that are important to Anne as related to items in the Aphasia Resource Kit Part 1 (pages 11-16).
• Consider message banking/digital recording of Anne’s voice; discuss with Becky and let Kim know if you would you like to pursue this.
• Try cooking simplified recipes from the “6 step” recipe book or a favorite from home.
• Email two to three of your favorite recipes to Becky and Maureen. They will provide an example of how to simplify the recipe instructions. Hold for now
• Try setting up and listening to an audio book. Hold for now

Current Functioning

Using the telephone – not much, very difficult due to aphasia, Tom does most.

Shopping – does fairly well,  joint effort

Cooking – Anne enjoys pancakes and/or waffles on Sundays. Tom and Anne are not focusing on using recipes. Anne is receiving Meals on Wheels 5 days/wk. Tom and Anne visit Tom’s sister Susan for meals as well

Housekeeping – mostly a hired bi-weekly service, Anne still does laundry, ironing, etc.

Transportation – no longer drives, attention/multitasking issues, Tom does it all.

Taking medication(s) – yes, mostly on her own.

Managing finances – no, attention/acalculia issues, Tom does it all.

Tom attends all medical appointments, and assists with communication, as necessary.

FaceTime – important to her, but very stressful and tiring. Uses topic/reminder lists.

Knitting – Anne loved to knit but is no longer able to this do this

Books/Reading – Anne is prefers audiobooks to large print books. She completed reading the entire Harry Potter series, with good success and enjoyment. She subscribed to The Week (Junior) and enjoys it.

She is a big consumer of podcasts.

She is slowly working her way through 1000 piece jigsaw puzzles. Recently purchased a 500 piece puzzle.

Yoga – Due to difficulty following multiple steps and the speed of the class, Anne no longer wants to go to yoga class with Donna (right/left frustration). Instead, Anne can do yoga at home at a slower pace when her friends visit.

Walking – Enjoys walking with Sue, Donna, Tom and others

She tires easily and sleeps a lot. 

She is quite healthy at 81 years young.

Apple Music library set up by Susan, providing Anne with easy access to hundreds of albums from her CD collection

UConn Book Club-Anne completed the course that finished in December 2023. Tom is encouraging her to continue with book club in 2024.

Care Preferences

Preferences for Care – Steve’s availability

Found here: https://docs.google.com/document/d/1dVUpvgRVtvalb7_DupecjRv1SIyM6b4O/edit

In-Home Care Options

https://docs.google.com/document/d/14nZ9WSGclhEcgUYamO04yvbqVN2HoXWX/edit?usp=sharing&ouid=112963180685863549984&rtpof=true&sd=true

Life Participation Goals and Strategies

• We will document all communication strategies that have been recommended by Kim Winter, MS, CCC-SLP/Samantha McGovern, MS, CCC-SLP, in addition to general life participation strategies we discuss during your consulting meetings.
• Anne has identified the following as priorities to work on:

-Gardening: Outdoor gardens in Summer; may try indoor plant care in Winter

-FaceTime: Mental prep for relaxation; try standing; use a step-wise approach

-Reading: Anne will use audiobooks. 

-Yoga: May try at home practice

Potential Future Needs and Concerns

• Occupational therapy
• Physical therapy
• Mental health counseling
• Social worker
• Homemaking
• Personal care
• Nursing care
• Palliative care
• Assisted living
• Memory care
• Nursing home
• Hospice care
• Volunteers
• If there are challenging conversations/topics, please let us know of your comfort level with the discussion and your preferences as to who would like to be involved in the conversations. We understand that there are always varying levels of readiness with addressing difficult issues. 

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.

Anne’s Patient Support Group Memberships:   

• NAA – PPA Chats, twice monthly
• Cognitive Concierge – PPA Chats, twice monthly

   
Tom’s Caregiver Support/Group Memberships:   

• NAA – PPA Chats, twice monthly 
• Cognitive Concierge – PPA Chats, twice monthly
• Boston AFTD – FTD support groups, weekly
• Northwestern’s AFTD – PPA support group, monthly
• Mesulam Center at Northwestern University: PPA Tele-Savvy Pilot Intervention–Late July to early September, 2023

Team

Tom Latham – Caring spouse, health care proxy 

David Candow, MD – Primary Care Physician – Joseph Botta, MD & Associates

• Semi-annual appointments (November/May), and as need arises. Guided by MGH regarding Anne’s FTLD/PPA.

Samantha McGovern, MS, CCC-SLP, Memory and Aphasia Care Corp 

• Currently weekly SLP sessions, but will vary over time. Supported by MGH SLPs and Cognitive Concierge.

Brad Dickerson, MD – Director & Behavioral Neurologist – MGH FTD Unit

• MGH team leader, semi-annual appointments (February/August, coinciding with PACT Study SLP and Neuro-psych evaluations) and as need arises. With his team, prepares and maintains Anne’s Care Plan. Keeps Dr. Candow informed about Anne’s FTLD/PPA.

Rose Gallagher, RN – Nurse, assistant to Dr. Dickerson – MGH FTD Unit

• MGH team member, handles MGH Portal question for Dr. Dickerson.

Megan Quimby, MS, CCC-SLP, Director of S & L Pathology – MGH FTD Unit

• MGH team member, provides guidance and support to our local SLP.

Daisy Hochberg, MS, CCC-SLP, Founding SLP – MGH FTD Unit

• MGH team member, provides guidance and support to our local SLP.

Katie Brandt, MS, Director of Caregiver Support – MGH FTD Unit

• Available for half hour one-on-one caregiver support sessions via Zoom.

Brian Perkins – Anne’s son in Vermont, secondary health care proxy

Susan LaSante – Tom’s sister – ‘Our’ Carer and an Assistive Technology Specialist 

Steve-Companion for Anne

• One time/week for two hours; also enjoys and is knowledgeable about gardening

Cognitive Concierge consultants-Becky Khayum, MS, CCC-SLP, Erin Cecchi, MSW, LCSW, and Maureen O’Neil Brown, MS, OTR/L

Team Information

MGH Care Plan (February 2023)

Recommendations:

– Speech therapy

– Continue PACT study

– Continue efforts using physical techniques such as yoga to manage frustration and stress over symptoms (she doesn’t want to do therapy or take medications)

– Consider ALLFTD referral

– Follow-up: 6 months

Family Supports

Anne’s oldest son: 

Rand & Yo Perkins in Forest Hills, Queens, NY

Financial planner in own business

Isabella Perkins in advertising, NYC

Mark Perkins at Morgan Stanley, NYC

Michael Perkins at a financial planning firm, Philadelphia, PA

Next:

Brian Perkins & Chris Staats, MD, in Burlington, VT

Musician – eclectic career performing, teaching, etc.

Ella Staats a creative writer, artist, and musician, Portland, Oregon

Youngest:

Scott Perkins & Ginger in Roanoke. Va

Environmental Engineer, international firm

Connor Perkins in computer science, Virginia

Kai Perkins at Colorado State University, environmental interests

Hiking Vacations-US National Parks & Internationally

Resources and Information

PPA Tele-Savvy Caregiver Manual (under development) & Power Points

What if it’s not Alzheimer’s? A caregiver’s guide to dementia (2022) Edited by Gary Radin and Lisa Radin

Primary Progressive Aphasia: Symptoms beyond Language

Principles and philosophies for speech and language therapists working with people with primary progressive aphasia: an international expert consensus.

Positive Behavior Support For Individuals With Dementia 

Guiding Occupational Therapy Practice for People Living with Dementia in the Community 

The Speech-Language Pathologist’s Role in FTD Care – Becky Khayum

The Role of Occupational Therapy in FTD Care – Maureen Brown

The Physical Therapist’s Role in FTD Care – Erica Pitsch

Caring for Another

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

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

Home Safety Tips for Fall Prevention