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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

Maureen O’Neil Brown, MS, OTR/L, CBIS

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 (IADL’s) and leisure activities and to increase confidence in completing these activities.

Prioritize IADL’s/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


Tom and Anne’s To-do list-In Process

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. Label plants in garden (PARTIALLY COMPLETE–TO CONTINUE IN 2024)
  3. 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)
  4. Caregiver Hiring
    • Continue to discern whether to hire a caregiver in the more immediate future (DECISION MADE TO HIRE IN OCTOBER)
    • Work with Maureen to edit the draft of PCA application at 7/24/23 meeting (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

Becky and Maureen’s To-do list

  1. PCA application (Maureen) (DONE)
  2. PCA training plan (Becky and Maureen)
  3. PCA daily log (Maureen)
  4. PCA weekly activities planning guide (Becky and Maureen)
  5. Create verb list and template grid and share with Tom/Susan (Becky and Maureen) (DONE)
  6. Maureen will complete in-depth vetting of Day Kimball Healthcare at Home (adjacent to Botta & Assoc.)

Speech-Language Therapy and Communication Plan

We will document all communication strategies that have been recommended by Kim Winter, MS, CCC-SLP, in addition to general life participation strategies we discuss during your consulting meetings. We will also include important communication priorities for follow-up.

  • Kim and Susan will collaborate on all aspects of Anne’s ‘TD Snap Aphasia’ app from which Anne’s Communication Book pages will be printed. (To-do lists for all can be updated as plans proceed.)
  • Compile a list of important words/names in preparation for creating a lexicon system with Kim
  • 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 Kim to get her expertise on this

Maureen and Becky’s Long Term Plan

  • 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.
  • Maureen will continue to work on cooking strategies and research freshly-prepared meal service companies, as needed.
  • Maureen will work with Tom, Anne and Dr. Candow on Dementia Care Directive and MOLST form. Anne’s preferences can be viewed here:
  • 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?)
  2. Westview Commons
  3. Day Kimball Healthcare at Home (adjacent to Botta & Assoc.)
  4. Westview Health Care Center

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, 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.
  • Please talk with your elder law attorney should you wish to draft an employment contract. (DONE)
  • 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.
  • Look at sample magazine content from Becky and provide feedback. (Subscribed to The Week (Junior) and enjoying it.)
  • 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 – a passion, increasingly a shared effort, timing/sequencing/attention issues. (Trialing simpler recipes and more aphasia-friendly recipe formats.) We talked about the idea of picking one favorite recipe. Tom and Anne can go through recipe and have Anne circle the steps she would want Tom to help with. Then, Tom and Anne can try cooking the recipe together to see how it goes. Anne may be starting 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.

Since diagnosis, she has given up knitting, but would like to try it again, as it was one of her passions.

She has begun reading Harry Potter series, with good success and enjoyment. (Subscribed to The Week (Junior) and enjoying 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.

Anne will begin participating in yoga class with Donna (right/left frustration)

She tires easily and sleeps a lot. (Less afternoon naps with summer gardening.)

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 will try the class again to see if it is a good fit. The current class is weekly and runs through early December. There is also a class in the spring that will be offered .

With Winter coming, discussion of volunteering at local nursery. Becky suggested trying to set up an indoor plant area.

Questions for Medical Professionals

Life Participation Goals and Strategies

  • We will document all communication strategies that have been recommended by Kim Winter, 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:
-Cooking: Simplified recipes, Aphasia-friendly text and font, prep steps
-FaceTime: Mental prep for relaxation; try standing; use a step-wise approach
-Reading: Novels with easier reading level have been successful; large print books; shorter reading sessions, line marker to help keep place
-Yoga: To be addressed following above priorities
-Knitting: To be addressed following above priorities

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
  • Nadina Gronback, CNA-Personal Care Attendant (Starting weekly October, 2023; schedule: Mondays 9 am-1 pm; supported by Cognitive Concierge)
  • Mesulam Center at Northwestern University: PPA Tele-Savvy Pilot Intervention–Late July to early September, 2023


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.

Kim Winter, MA, SLP – Providing therapy (remotely) – Hospital for Special Care

  • 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.

Amy Marchesano, LMHC, Caregiver Support Specialist – 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 

Nadina Gronback, CNA-Personal Care Attendant

  • Starting weekly 10/2023; Mondays 9 am-1 pm

Cognitive Concierge-Becky Khayum, MS, CCC-SLP and Maureen O’Neil Brown, MS, OTR/L

Team Information

MGH Care Plan (February 2023)


– 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 neurobooth research at follow up

– 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


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

Musician – eclectic career performing, teaching, etc.

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


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.