In 2012, for the first time in 27 years new criteria and guidelines for the diagnosis of Alzheimer’s disease have been published. These changes have been led jointly by workgroups from the National Alzheimer’s Association and the National Institutes of Health. Two of the key changes are the creation of specific phases or stages of Alzheimer’s disease and the inclusion of biomarkers.
The first phase of Alzheimer’s (the guidelines referenced above use the term “stages” instead of “phases”) is now called preclinical Alzheimer’s disease. Professionals agree that people can have a long period during which changes are occurring in the brain but no outward symptoms are displayed. The outcome of research into this phase is the ability to predict who is at highest risk for developing the disease and ultimately prevent Alzheimer’s. As described above, biomarkers may eventually aid in identifying this phase.
The second phase is now called mild cognitive impairment (MCI) due to Alzheimer’s disease. This phase is marked by mild changes in memory and thinking ability. These changes are evident to the affected loved one or close family and friends, but not severe enough to interfere with daily activities. It is believed that everyone who develops Alzheimer’s dementia will have a period of MCI, and not everyone who develops MCI will develop Alzheimer’s dementia. MCI can be caused by several other factors, such as reactions to medications, depression, vitamin deficiency, Parkinson’s disease, or a brain trauma.
The third phase is dementia due to Alzheimer’s disease. This phase, marked by changes in memory or cognitive abilities and behavior that impair an individual’s daily life, is currently the most commonly diagnosed and what the general public perceives as Alzheimer’s disease.
The focus of my book will be phases two and three, according to the nomenclature used in the new guidelines: mild cognitive impairment and dementia due to Alzheimer’s disease. It is during these phases that the family becomes intimately affected and remains so through the course of the disease. This book is set up into distinct segments: In Chapters 1, 2, and 3, I describe the progression of the disease in three overlapping phases (early, moderate, and advanced). Each phase is introduced with an Overview Section to acquaint the reader with the most significant features of the phase and how the progression of the disease affects the identified person and family. Global concerns will be addressed in each phase’s overview section. They include: safety, flow of communication, attention to legal, medical and social concerns, development of long-term plans, the challenge of change, grief, and guilt. This is followed by a section depicting typical cases families may encounter, with author feedback and suggestions for care. Additionally, at the conclusion of the author comments for each case, there is a space for the reader to think and write about how this case is similar to or different from the reader’s own story. The cases attempt to capture the tone of the changes that are occurring in the affected individual. Although situations vary from day to day or family to family, there are common signs and symptoms that appear throughout the course of the disease. After each chapter’s cases, there is a reader participation form to assist families with their plans.
Some readers may choose to read the individual cases in each phase prior to reading the overview for that phase. Whichever format you choose, I am certain you will gain important insight and information to assist you.
Chapter 4 is included for those readers who would like more technical and medical information regarding the basic etiology and manifestations of Alzheimer’s disease and looks at other forms of dementia that parallel and conflict. The final chapter will serve to assimilate and summarize previous information, assist with providing a timeline to help identify the myriad changes and simplify an action plan, and focus on key concepts and trends for the family. In the text, you will see author names and years—for example “(Gelber 1999).” These will guide you to works in the bibliography where you can find more information about the subject at hand. I will provide an in-depth presentation of the phases of Alzheimer’s disease as noted above, defining each by means of clear cognitive and behavior changes, most of which are readily identifiable to family members and others intimate with the affected person. Symptoms within each phase are experienced with varying intensity and progressively increase over time.
The road map of Alzheimer’s disease is not all downhill. Yes, the outcome is known, the person afflicted will die, AND the road definitely has high points that reflect the discoveries, rediscoveries, and general outpouring of love and nurturing that can occur in families faced with the restrictions the disease presents for us. The mural has many colors and many sides. As John Zeisel, Ph.D., states in his sensitive book I’m Still Here, “The skills and capacities of people living with Alzheimer’s that don’t diminish over time, or do so more slowly, provide windows for connections and communication. Through those windows lie opportunities to establish and build new and vibrant relationships that can sustain us and them over time, supporting both care and well-being.” As the disease progresses (dementias in general, Alzheimer’s specifically), there are numerous changes affecting each family member, the family system, and the larger picture involving the professional community and care interventions.
My sincere hope is that you are able to use this book as a stimulus to develop your own effective personal plan. Aim to maintain the integrity of the person affected with Alzheimer’s, while providing the love, understanding, and care that you and all family members deserve.