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Centering Our ValuesTM Toolkit

What is this toolkit about? Centering Our Values TM is a hands-on
guide to help caregivers and their loved ones living with
dementia make decisions that reflect their values and what is
important to them. This guide includes dementia education and care resources, as well as tools and worksheets that can help everyone
reflect on what matters during the journey of living with
dementia. Your journey of living with dementia affects everyone

Make this book YOUR own resource through YOUR journey!

  • Take notes
  • Fill out worksheets
  • Make copies of the worksheets to review over time
  • Share your notes/worksheets with your care team
  • Skip around to the sections that support where you are or what you need at the moment

This guide is truly made to help you in whichever way works for you and your loved one. We have put a special focus on African American caregivers for this guide (African Americans are two to three times more likely to have dementia), but anyone should feel welcome to use this guide.

We hope this guide will:

Provide education & resources to support those living with dementia

Encourage you and your loved one to outline your values and how values can support making decisions together

Outline normal changes with dementia daily care over time

Support dementia decision making for daily care and advance care planning

Navigating through Centering Our Values TM Toolkit

The following pages of this website will include an introduction to the five major sections of Centering Our Values. Each section will highlight a portion of the educational content, graphics and exercises in that section of the toolkit. Feel free to download and utilize the toolkit in its entirety, these pages are intended as a brief preview.

Key points to outline for users about the toolkit:

  • Time-stamped exercises to review values, thoughts, experiences over time
  • Personalized worksheets and exercises to address situations, experiences living with dementia
  • Education on dementia
  • Algorithm for dementia decision making
  • Original, culturally concordant depictions of life living with dementia

Section 1

Being a dementia caregiver

Being a good caregiver starts with education. Learn the basics of Alzheimer’s disease and other related dementias (ADRD) and how these differ from normal aging. We’ll discuss the progression of dementia as well as prepare you, the caregiver, for the journey and how to care for yourself as well.

This section includes:

  • Dementia education basics
  • Who is a caregiver?
  • How can a caregiver create a support network?

Section 2

Including values in your care decisions

As a caregiver you’ll be making decisions for the person living with dementia when they are unable to express their wishes. More compassionate, effective decisions can be made if everyone involved knows what matters to both the individual with dementia and the caregivers supporting them. This section gives you the space to express what matters so it can help guide you when decision making times arise.

This section includes:

  • What matters to you?
  • What matters to your loved one?
  • What you and your loved one share

Section 3

Supporting those living through the dementia journey

Certain aspects of life change over time as one lives with dementia: managing daily care, maintaining relationships and preparing for care as dementia progresses in the form of an Advance Care Plan. These three areas are discussed here.

This section includes:

  • Changes in daily care needs during progression of dementia: medical management, hygiene, eating and mobility (page 46 infographic)
  • Maintaining relationships over time by considering communication, social activity and resources to strengthen you and your loved ones’ bond (page 56 communication; page 57 graphic)
  • Planning for long-term care: setting, finances, advance care planning for now and end of life (pages 62-63 education and graphics; page 68 ACP education; worksheet on pages 70-71)

Section 4

Providing structure for dementia care decisions

Making decisions about dementia care is not easy. Having a structured approach in making a decision that is right for everyone involved helps. This section goes through two support tools for making decisions for dementia, whether as simple as what are the best activities to keep a loved one busy to more complex decisions like what is the best option for feeding a loved one who is choking while eating.

This section includes:

  • The five-step decision tree
  • The daily care decision worksheets, which can help with daily care decisions. This section is intended to help support daily life care choices that are focused on values, changes noticed in your loved one and support options for changes.

Section 5

Resources and Appendix

There are many organizations and resources available for those living with dementia. They are presented in this section in useful categories to find what you need more easily.

Resources are grouped into these areas and provided in local and national options:

  • Managing behaviors
  • Education
  • Socialization
  • Caregiver support
  • Daily care
  • Late stage
  • Advanced care planning