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.
How to Ease Care through Activity Engagement
The Unexpected Family Caregiver
The caregiver is often considered a hero. We acknowledge how difficult it is to care for someone else, and, while there are programs and support systems in place to advocate for the family caregiver, the bulk of the work is left to you to handle. The joyful moments spent with someone living with dementia or Alzheimer’s are great, and I’ve had the honor of developing relationships with many individuals living with this disease. These moments, however, are formed outside the daily care routine. I’ve witnessed firsthand the struggles between caregivers and care recipients as they navigate the most delicate aspects of care. These intimate moments of caregiving hold a vulnerable part of the human experience, and one that should never be taken lightly.
The start of a caregiving journey will be different for everyone because the role of a caregiver can be brought on by an acute illness, or maybe you’ve assisted in a family member’s care for years without realizing: a trip to the doctor’s office, scheduling appointments, or light housekeeping. Often the tasks are easy enough, and for many people, these roles and responsibilities are taken on without much thought. As the family, many assume it is just part of what’s required or expected.
Whether it is a spouse, a parent or sibling, grandparent, aunt, an uncle, or whoever raised you, they are older now and need a bit more assistance in their day-to-day activities. The process all seems innocent enough, but, as care demands increase, taking care of your loved one can unexpectedly begin to intrude on your daily routine, job, family, health, and finances. Without a proper plan in place, caregiving becomes a much more complicated process for family members to navigate.
While the word care may be in it, caregiving is practical and medically driven, which leaves very little time for emotional care and relationship building. Continued focus on a person’s physical well-being can be both draining and stressful. As we move forward throughout this book, the acknowledgment of feelings of stress, guilt, and even anger is essential. So many caregivers have expressed these sentiments in whispered tones, as if they were wrong or something they should be ashamed of feeling. They are not. These thoughts are healthy and come from being put in a difficult situation. What matters is the way you choose to handle these thoughts.
Due to the sensitive and delicate nature of providing care, it is essential that both parties agree to the care arrangements. The care recipient should express either verbally or in writing what kinds of care measures they agree to, who they want to be providing this care, and an agreement with that person that they are willing and able to take on the role. The caregiver should identify what kinds of care they can provide and understand in what aspects of care they will require additional assistance. Unfortunately, this is hardly ever the case. As mentioned above, family members take on the role unassumingly, and too often without a conversation with the older adult in need. Society tells you to plan for retirement, but the conversation often stops there and neglects to prepare for, or even discuss, a time when you are no longer able to care for yourself.
Longevity is a relatively new concept in our society. Black men who were born in 1950 had a life expectancy of fifty-nine; white men were expected to live to sixty-seven. Today, this is retirement age. Meanwhile, white women who were born in 1950 had a life expectancy of seventy-five; black women were expected to live to sixty-three.1 Medical advancements and a better understanding and appreciation of nutrition and exercise have resulted in longer and healthier lives for both men and women. We never needed to make plans past retirement because no one expected even to live that long,