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Introduction

My name is Molly Wisniewski, and I’ve worked with older adults for over ten years. I was fortunate to begin my career with a mentor who was dedicated to the teaching of resident rights and a strong advocate for quality of life and quality of care for our seniors living in nursing homes. Her energy and passion ignited my desire to continue her work and share a more positive side of the aging experience.

Over the years, I’ve watched as family members struggled with challenging behaviors associated with various forms of dementia or Alzheimer’s disease. The loss of memory, language, and even direction is hard to witness and understand. For family caregivers, there is a lifetime of memories which have seemingly disappeared from your loved one’s mind.

My project, the Upside to Aging, started as a way to address this very concern. The focus is to offer resources and education to family members who are hurt and confused by their loved one’s behavior and who struggle with the shift of power that abruptly occurs as they assume the caregiver role. Many of the entries found on my website have been expanded in this book to offer key examples of how to interact and engage your loved one living with dementia.

Caregivers cannot provide proper care without understanding the behaviors of these individuals. My experience working with older adults taught me several things; however, what I will dedicate this book to is the understanding and awareness that older adults with various forms of dementia are not behaving in a certain way because of their diagnosis, but instead, they are communicating with us in a new way. We just need to learn the language.

Through this lens, we can gain awareness, understanding, and even empathy toward their needs and allow both family and professional caregivers to get to know these individuals in a new way during this phase of life. My professional and educational background is in caregiving and aging, not medicine, and this is my approach to the diagnosis here. I have spent countless hours getting to know individuals with dementia, have identified patterns in behavior and the intonation of voice, and have established relationships that I still hold dear today.

Dementia is a group of symptoms that have an impact on the cognitive health of the person diagnosed, and there are several stages a person will go through and various levels of capability throughout the progression of their life post-diagnosis. In this book, I will focus on care techniques and interventions for individuals who need assistance with activities of daily living and who are in later stages of the disease process.

To provide skilled care to someone living with dementia is a unique caregiving experience, and there are established tools out there to make the experience as comfortable for both parties as possible. Unfortunately, there isn’t a training period for family caregivers and, to best be able to provide care to someone living with later-stage dementia, the caregiver must understand how the individual has re-learned to communicate. Too often individuals living with dementia are passed over because there is a general belief that these people can no longer comprehend or communicate, but this is far from the truth. Your loved one is very much still alive inside and is waiting for you to engage them in a way that they can respond to and understand.

In the first part of this book, I explore the very nature of a caregiver and what impact caregiving for a loved one has on the relationship with the care recipient. Chapter One will go over the variety of settings in which caregivers work and live, and acknowledge the need for our communities to support this growing subset of our population. Chapter Two focuses on you, the caregiver. You are in a demanding role that can quickly burn you out if you don’t take time for yourself. Each section will provide you with new tools to help you incorporate self-care into your routine. Chapter Three hones in on the language of dementia. So much of the caregiver’s frustrations stem from misunderstanding their loved one’s needs and preferences. Paying attention to subtleties in speech patterns and identifying dementia triggers will help you better understand what it is your loved one is trying to tell you. Chapter Four offers a series of interventions that calm and redirect an individual living with dementia. Chapter Five focuses on the importance of activities, and how engaging your loved one in certain recreational pursuits can help you provide care as a family caregiver.

The second part of this book focuses on the importance of caregiving conversations in the relationship between caregivers and care recipients. To that end, Chapter Six acknowledges the difficulties in care and offers mindful caregiving techniques to support you in your approach. Then Chapter Seven sets the foundation for your care conversation with your loved one and provides context and questions that will help you clearly outline their wishes and preferences. Next, Chapter Eight goes over the growing number of senior living options available on the market and seeks to debunk the idea that nursing homes are the only option for your loved one in need of care. Chapter Nine discusses what you should look for when searching for a care home for your loved one, acknowledges the guilt that many caregivers have for moving their loved one into a nursing home, and offers concrete examples of how you can remain an active participant in their care. Chapter Ten recognizes the continued role of the caregiver once their loved one has passed away and offers ways to memorialize the times spent together throughout the caregiving journey.

As an activity professional, I am continuously humbled by the joy, kindness, and compassion these individuals have in their hearts, and their willingness to share this love with all those they meet. I hope that you, too, can find these relationships with the older adults living with dementia or Alzheimer’s disease in your life.