The A Leader's Manual for Demential Care-Partner Support Groups

By Alan Wolfelt and Edward G. Shaw

If you're thinking about starting a support group for dementia care partners, this downloadable leader's manual is for you. The Dementia Care Partner's Workbook is a new resource from Companion Press that is both a support group participant's manual and self-study guide for care partners who have a loved one with Alzheimer's disease or another form of dementia. Its ten concise lessons not only walk you through the types, brain biology, and progressive symptoms of dementia but also offer practical tips for managing behaviors, coping with emotional issues, prioritizing self-care, and planning ahead—everything from diagnosis to end-of-life.If you are a medical, mental health, or other healthcare professional wanting to lead a support group for dementia care partners, or a layperson with a heart for those on the journey, A Leader's Manual for Dementia Care-Partner Support Groups is the comprehensive resource you need. The Manual provides general information about establishing and leading support groups, counseling skills for leaders and co-leaders, how to handle challenging group participants, step-by-step instructions on how to run each of the ten individual weekly meetings (including meeting-specific handouts), and lots of practical advice from co-authors Dr. Edward Shaw, physician, mental health counselor, and former dementia care partner, and Dr. Alan Wolfelt, world-renowned thanatologist, grief counselor, and author. The handouts and worksheets are number coded for easy cross-referencing with the content of The Dementia Care-Partner's Workbook.

• Language: English
• Publisher: Independent Publishers Group
• Release date: Jan 1, 2020
• ISBN: 9781617222948

Book preview

2020 by Edward G. Shaw, M.D., M.A., & Alan D. Wolfelt, Ph.D., C.T.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of the publisher.

Companion Press is an imprint of the Center for Loss and Life Transition, 3735 Broken Bow Road, Fort Collins, Colorado 80526.

Companion Press books may be purchased in bulk for sales promotions, premiums, and fundraisers. Please contact the publisher at [phone] or www.centerforloss.com for more information.

25 24 23 22 21 20 6 5 4 3 2 1

ISBN: 978-1-61722-293-1

Also by Dr. Ed Shaw

Keeping Love Alive as Memories Fade:

The 5 Love Languages and the Alzheimer’s Journey

The Dementia Care-Partner’s Workbook:

A Guide for Understanding, Education, and Hope

A Support Group for People Living with Dementia:

The Leader’s Manual

Also by Dr. Alan D. Wolfelt

The Understanding Your Grief Support Group Guide

The Understanding Your Suicide Grief Support Group Guide

Companioning the Bereaved

Grief One Day at a Time

Healing Your Grieving Heart When

Someone You Care About Has Alzheimer’s:

100 Practical Ideas for Families, Friends, and Caregivers

Contents

INTRODUCTION

A word about The Dementia Care-Partner’s Workbook

Why dementia care-partner support groups are important

The eight central needs of dementia care partners

BEFORE YOU BEGIN A SUPPORT GROUP

Deciding on a support-group leader

Needs assessment

Group format

Choosing a place and time of day to meet

Setting the number of members

Deciding on the number of lessons and frequency and length of meetings

Recruiting and screening group members

Strategies to publicize the group

Establishing ground rules

Baseline and end-of-group assessments

BASIC SKILLS OF THE SUPPORT-GROUP LEADER

Responsibilities of the support-group leader

Qualities of the support-group leader

Defining leadership style

Basic counseling skills of the support-group leader

The nature and art of companioning

SUPPORT GROUP BASICS

Basic needs of support group members

The five developmental phases of a support group

Phase One (forming): Warm-up and establishing group purpose and limits

Phase Two (storming): Tentative self-disclosure and exploring group boundaries

Phase Three (norming): In-depth self-exploration and confronting the realities of caregiving

Phase Four (working): Commitment to healing and growth

Phase Five (closing): Preparation for and leaving the group

Challenges in the group

Lack of leader preparation and/or training

Discrepancies between group members’ expectations and leader’s expectations

Challenging members

Determining when a group member needs individual counseling and asking a group member to leave the group

When the group just doesn’t seem to be going well and you’re not sure why

The leaders aren’t doing their job well or don’t work well together

The members don’t mix well together

When a group member or their loved one with dementia dies

MEETING PLANS FOR LESSONS ONE THROUGH TEN OF THE DEMENTIA CARE-PARTNER’S WORKBOOK

A few words about members doing homework

Anatomy of a meeting plan

If you plan to do baseline and end-of-group assessments

Before the group begins

Before group (warmup)

Opening the group

Mindfulness Moment

Check-in

Education

Discussion

Preview of next meeting and homework

Mindfulness Moment

Closing

After group (afterburn)

Leader and co-leader decompression time

MEETING ONE: Telling Your Story from the Beginning

MEETING TWO: Basics of Alzheimer’s Disease and Other Dementias

MEETING THREE: Brain Structure and Function, Activities of Daily Living, and Dementia Stages

MEETING FOUR: Adapting to Changing Relationships

MEETING FIVE: Coping with Grief and Loss

MEETING SIX: Stress and Self-Care

MEETING SEVEN: Getting More Help and Transitioning Care

MEETING EIGHT: Legal, Financial, and End-of-Life Issues

MEETING NINE: Existential and Spiritual Questions

MEETING TEN: Retelling Your Story Starting Today

APPENDICES

Appendix 1: Support Group Ground Rules

Appendix 2: Zarit Caregiver Burden Scale

Appendix 3: Geriatric Depression Scale and Geriatric Anxiety Scale

Appendix 4: Support Group Leader’s Overview

Appendix 5: The Eight Central Needs of Dementia Care Partners

Appendix 6: Symptoms of the Four Most Common Forms of Dementia

Appendix 7: Understanding Our Emotions Exercise

Appendix 8: Activities of Daily Living and the Stages of Dementia

Appendix 9: Wellness Wheel and Wellness Plan

Appendix 10: Support-Group Participant Evaluation Form

Appendix 11: Resource for Support Group Members

Appendix 12: Certificate of Dementia Care-Partner Support Group Participation

SELECTED REFERENCES

FEEDBACK

ABOUT THE AUTHORS

Introduction

Welcome, support-group leaders!

A Leader’s Manual for Dementia Care-Partner Support Groups is to help you get started with and run a support group for dementia care partners in conjunction with The Dementia Care-Partner’s Workbook. The comprehensive contents cover a variety of important topics that will allow you to plan and run a support group for dementia care partners. I am honored to have my friend and colleague Dr. Alan Wolfelt, a world-renowned grief counselor and author, as a coauthor on this work. A veteran of writing grief support-group leader’s manuals, Alan provided many of the thoughts and ideas you’ll find herein. Whether you are a mental-health, medical, or other healthcare professional in the aging and dementia space, or a lay leader with the heart to lead a support group, it is my sincere hope that The Dementia Care-Partner’s Workbook and this accompanying leader’s manual will provide the resources necessary for you to minister to some of the now 18 million-plus care partners of a loved one with Alzheimer’s disease or another form of dementia.

Please note that to use the ten-meeting plan, each of your group members will need to purchase a copy of The Dementia Care-Partner’s Workbook. They are available through the Center for Loss website: www.centerforloss.com.

I hold you and those you will be helping in my thoughts and prayers. Dementia care partners often feel a great sense of isolation and loneliness, that no one else can understand the journey they are on. Being companioned by you, in a safe place where they can learn and understand more about dementia, the most feared of all human diseases, and receive compassion, affirmation, and hope, is truly a gift. Even on this journey down the path not chosen, thanks to you they will find comfort, companionship, and encouragement that tomorrow can be even better than today.

With warmth and blessings,

Edward G. Shaw, M.D., M.A.

Founder and former Director, Memory Counseling Program,

Wake Forest Baptist Health, Winston-Salem, NC

Founder, Empath Education

A WORD ABOUT THE DEMENTIA CARE-PARTNER’S WORKBOOK

The Dementia Care-Partner’s Workbook was created as a flexible resource to provide understanding, education, and hope to care partners of those diagnosed with Alzheimer’s disease or another form of dementia in either a support-group setting or as a self-study guide. Support groups are the backbone of the Memory Counseling Program I founded for dementia care partners at Wake Forest Baptist Health. Although many care partners initially feel hesitant to join a support group, our members feel an immediate sense of camaraderie and community with the very first meeting, relieved that someone else finally understands what they’re going through. They consistently rate the program, curriculum, and group leaders very highly, and by the group’s end, they also report greater knowledge about dementia and enhanced coping skills.

Our support-group program has two components: an initial ten-week classroom experience, corresponding to the ten lessons in The Dementia Care-Partner’s Workbook, followed by monthly maintenance groups. The classroom portion, offered three or four times yearly, is led by one or two counselors for groups of eight to 16 people who stay together for ten consecutive weekly meetings that are 90 minutes in length. Each week there is a lesson focused primarily on one or several topics. The Workbook guides members through the ten-week experience, offering educational content and providing questions and space to journal responses, all of which serve as the basis for discussion during the weekly meetings.

The Workbook is divided into ten lessons. In a typical support group weekly meeting, one lesson is covered, although there is enough content that some of the lessons could be stretched over two or three weeks if you would prefer to cover the educational content in smaller chunks. Here is a listing of the Workbook’s lessons:

•Lesson One: Telling Your Story from the Beginning

•Lesson Two: Basics of Alzheimer’s Disease and Other Dementias

•Lesson Three: Brain Structure and Function, Activities of Daily Living, and Dementia Stages

•Lesson Four: Adapting to Changing Relationships

•Lesson Five: Coping with Grief and Loss

•Lesson Six: Stress and Self-Care

•Lesson Seven: Getting More Help and Transitioning Care

•Lesson Eight: Legal, Financial, and End-of-Life Issues

•Lesson Nine: Existential and Spiritual Questions

•Lesson Ten: Retelling Your Story Starting Today

In our program, after completing the ten-week classroom experience, group members then may choose to transition to a counselor-led, once-a-month 90-minute maintenance group, which is more unstructured in format. Whether you are a trained mental-health, medical, or other healthcare professional or a layperson with a heart to serve dementia care partners in either a secular or faith-based organization, as a support-group leader you can use The Dementia Care-Partner’s Workbook and this leader’s manual to help you establish a sustainable support-group program that includes the initial ten-week experience followed by monthly maintenance groups. The Leader’s Manual provides step-by-step instructions on how to run the individual weekly meetings, general information about establishing and leading support groups, meeting-specific handouts, and lots of practical advice based on my own experiences as care partner to my late wife, Rebecca, who died in 2016 after a nine-year battle with early-onset Alzheimer’s disease, as well as my career as a doctor, mental-health practitioner, and dementia care-partner support-group leader.

WHY DEMENTIA CARE-PARTNER SUPPORT GROUPS ARE IMPORTANT

A growing body of medical and mental-health research demonstrates the effectiveness of supportive-care interventions to help dementia care partners, including individual, couples, and family counseling as well as support groups. In my work at Wake Forest Baptist Health’s Memory Counseling Program, I have facilitated facilitated hundreds of support gorups for dementia care partners over the last eight years and have witnessed the education, understanding, and hope exceeding members’ expectations through these well-planned and well-led groups.

Support groups for dementia care partners are helpful because they:

•Introduce members to a community of others who have had similar experiences, thoughts, and feelings.

•Counter the sense of loneliness and isolation that many care partners experience.

•Provide emotional, physical, and spiritual support in a safe, nonjudgmental environment.

•Allow members to explore their many thoughts and feelings about caregiving in ways that help them be compassionate with themselves.

•Encourage members to not only receive support and understanding for themselves but also to provide the same to others.

•Offer opportunities to learn new ways of approaching problems and