Developing Support Groups for Individuals with Early-Stage Alzheimer's Disease Planning, Implementation, and Evaluation By Robyn Yale, L.C.S.W. Foreword by Rea Kahn, R.N., M.P.S.

Excerpted from the Preface for Developing Support Groups for Individuals with Early-Stage Alzheimer’s Disease: Planning, Implementation, and Evaluation, by Robyn Yale.

Copyright © 1995 by Robyn Yale. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.

Preface

“It helps to know you aren’t alone — listening to how others deal with similar problems…it makes me feel much better to know that there are people like me.”

This statement speaks of the power that support groups have to assist people in coping with specific difficulties. The statement could be describing a group focused on, for example, surviving cancer, abstaining from alcohol, or caring for a relative with a chronic illness. It was made, however, by someone in a group for individuals with early-stage Alzheimer’s disease. These were individuals of all ages who were seeking information and support while they had only mild impairment as a result of Alzheimer’s disease.

The mental health needs of people with early dementia, which are unique and newly recognized, have been seriously overlooked and underserved. As early detection methods improve and concerns mount about incidence, costs, and consequences of the disease, this gap in the continuum of dementia care has become glaringly apparent. The distinctiveness of the early stages of Alzheimer’s disease and the lack of programs targeting people with the disease are, though, finally coming into public focus.

The potential benefits of support groups for people who have been told their diagnoses while in the early stages of dementia have just begun to be explored. Ramifications of this new direction are particularly important as other viable treatment options remain elusive.

This book is intended to be a stepping stone in making support services for individuals with Alzheimer’s disease more widely available. It synthesizes my research, clinical, and training experience, which includes the following:

1. A manual I wrote entitled A Guide to Facilitating Support Groups for Newly Diagnosed Alzheimer’s Patients, published in 1991 by the Greater San Francisco Bay Area Chapter of the Alzheimer’s Association, which provided a frame of reference and general guidelines for this model
   
   
2. A Pilot Research Grant from the National Alzheimer’s Association to the University of California, San Francisco, in 1992, which studied the responses of individuals with early dementia and their responses to the illness and to this support group intervention
   
   
3. A regional workshop, cosponsored by the Bay Area and Marin County Chapters of the Alzheimer’s Association, which was held in 1993 (Materials developed for this workshop formed the basis for this book and many other training forums.)

An overview of the approach and terms used herein can be found in the Introduction. Briefly, the support group model delineated in this book utilizes a discussion format to offer a combination of education, emotional support, and practical assistance. Because of the intensity of issues and feelings generated, these groups must be led by facilitators who have solid credentials and are appropriately supervised.

The advantage of this model is that it is low cost and requires relatively few resources (e.g., space supplies) to implement. Furthermore, its fundamental underpinning is that people with early dementia who want assistance will find the support group to be a safe place to deal with reactions to their condition. And, while anguish is to be expected, it is also constructive to explore and build on the therapeutic dimensions of wellness and vitality. These concepts can be cornerstones in the foundation of a new service infrastructure.

The approach outlined herein is by no means the only option. There are other models, including support groups in which individuals with early dementia and their family members participate together, “clubs” that offer therapeutic activities and outings appropriate for people with mild dementia, and programs that provide the participants community volunteer and/or vocational opportunities. These efforts are applauded, and more information about them would be welcome!

The truth is that no one approach is suitable for all individuals with Alzheimer’s disease. For example, some people who inquire about a support group may have too much cognitive impairment to participate in the program but also function at a higher level than individuals in dementia-specific adult day care centers. These people might be perfect for an activity-oriented “club.” Some people whose first inquiry is directed to an activity program might actually be seeking meaningful work of some kind. Each person with Alzheimer’s disease should be assessed for participation in any program based on his or her individual personality, coping style, abilities, and preferences, rather than on stereotyped assumptions and misperceptions.

My vision is one in which the entire continuum of dementia care is even more diversified, beginning earlier (e.g., prediagnostic information and counseling) and ending later (e.g., postplacement and bereavement counseling). The range of service options would correspond to the gradations of need within and between the commonly recognized stages (i.e., early, middle, and late). Connection and continuity among these services would also be strengthened for ease of referral and follow-up.

Of course, the ultimate goal is the eradication of Alzheimer’s disease. Fortunately, with all the attention and scientific expertise dedicated to the disease, there is great promise and hope. In the interim, however, these individuals — just like those with any other terminal illness — must be allowed to retain and nurture that which makes them uniquely human. We must meet them with our eyes and hearts wide open, allowing them to grasp and participate in the full spectrum of care and life to which they are entitled.

The process of educating ourselves and each other to further this aim can occur through ongoing pooling and exchange of knowledge and resources. Information and support is as crucial to professionals as it is to the individuals with Alzheimer’s disease in this new endeavor. Directions to pursue include the following:

• Work with local colleagues (e.g., health care providers, caregiver support group leaders) to facilitate recognition and referral of people with early-stage Alzheimer’s disease to new services.
• Evaluate new programs you develop through ongoing research and clinical documentation. Consider collaboration with multisite centers to increase the scope and power of studies that can be done.
• Work with policy makers to advocate for the expansion of dementia-care services and more responsiveness to individuals with early-stage Alzheimer’s disease and their families.
• Collaborate with local, national, and international organizations to coordinate information on early dementia and relevant services.
• Provide the lay and professional public with educational material and events targeted toward early dementia so that individuals with Alzheimer’s disease and their families who are not yet connected to services can see themselves in positive images and learn what is available to them.

Because these goals are quite ambitious, this book has been written to accommodate a cross section of readers, including clinicians, researchers, service providers, and administrators. The intent is to conceptualize and systematize this particular model in hope of making it tangible and motivating others to expand services for individuals with early dementia and their families.

Groups may be conducted by private practitioners or under auspices of some kind; many configurations are possible. Therefore, the ideas presented here are addressed to you, the reader, whether you are the potential facilitator, a program planner, staff in an agency sponsoring a group, a funder, or a person curious or connected in some other way.

My hope in writing this book is to demystify the process of talking with people about having Alzheimer’s disease and bring forward hope and optimism. Perhaps you will become inspired or encouraged to develop a program for individuals with early dementia in your community. At the very least, you may become a bit more convinced of the possibilities and a bit less frightened by a vague sense of foreboding or mystery. After all, those who work in the dementia-care field must be at least as courageous as those who are served by it.

As Goethe said,

Knowing is not enough; we must act.
Willing is not enough; we must do.