I was honored to be asked to write the foreword for the new edition, and with Nancy’s permission, am reprinting it on the blog as a way of convincing you to buy this wonderful book:
If you care for one or more persons living with dementia, either as a professional, a family member or a friend, I have a message for you: congratulations. You have opened one of the most valuable resources you can find for this journey.
Dial up your favorite internet search engine and enter “books + dementia”, and you will get over 2 million entries telling you where to go for the best advice. So why do I keep Inside Alzheimer’s at the top of my list? Because this book, unlike the majority of publications, is about the “spaces”.
You can pour sand into a bucket until it reaches the brim and think it is full. But then someone comes along with a pitcher of water and shows you how you can add much more to the bucket, as the water fills the spaces between the grains of sand.
Similarly, if you try to use buckets of dry sand to build castles on the beach, the result is a formless, insubstantial pile. Expert sand sculptors know that the secret is to add the right amount of water to give the sand strength and plasticity, and they use this knowledge to form astonishing and durable works of art.
For the most part, the available literature on dementia represents buckets of sand. Each book contains the same basic information on characteristic brain changes, diagnostic tests, treatment options, and algorithms for dealing with “difficult behaviors”. They reflect the biomedical model that has dominated our view of dementia—a model that views people through the lens of disease, disability and decline. When we care for people with dementia from this mindset, we are sculpting with dry sand, and it is no surprise that they usually continue to crumble. In fact, their disintegration reinforces our view that dementia is little more than a downhill slide to oblivion.
But what about the spaces? If we could fill those spaces between the grains of sand with something that gives them substance, could we create something new, something more durable, even astonishing? The answer is yes, and this book shows you how.
The key to Nancy Pearce’s book is a deep understanding that these spaces are simply moments, and that knowing how to expertly fill these moments is the key to transforming the experience of dementia. Furthermore, her central concept of being with reflects a deep, intuitive understanding of the emerging field of developmental aging.
In describing developmental aging, Thomas (2004) examines stages of human development as an interplay between doing and being. People move from the being-rich state of childhood, through adolescence and into adulthood, by learning how to do many things. In our society, adulthood represents the pinnacle of life, and our value systems emphasize what each person can or cannot do.
But if adulthood is the final stage of life, as has been traditionally believed, what a sad life it must be for older adults, who are unwilling or unable to do as much as those who are younger. It is no wonder that our society devalues elders, rendering them increasingly invisible as they age.
Within this paradigm, a person whose cognitive abilities are diminished by dementia would have the least value of all. So we create systems that assume the care of people with dementia by doing for them, disempowering and disengaging them in the process. This further erodes their well-being, and life in a world where they cannot succeed causes people to either withdraw into a shell, or become outwardly distressed, leading to the use of sedating medication to “control” their distress.
However, new research has shown that there is a distinct developmental stage beyond adulthood. Our narrow focus on doing has blinded us to the fact that older adults continue to grow by developing new being skills. Older adults have the space to synthesize their life experiences into wisdom, forming a perspective that is much more complex than that of younger adults. Researchers like Cartsensen, et al. (2000) have shown that elders are generally happier, less tied to material goods, and view the world with a richer palette of emotion than their younger counterparts. They are also less focused on the future and more able to appreciate the value of being in the moment.
Once again, this concept carries over to people living with dementia. Such people are experts at being in the moment, and if one can learn to engage them in the moment, they show a surprising capacity for wisdom, insight, and compassion. Herein lies the secret to preserving well-being throughout the life of a person with dementia. But to get there, we need to put aside our clinical algorithms and find those spaces between the grains of sand.
Filling the spaces requires a new mindset that takes us out of the all-knowing, all-doing role of the traditional caregiver and into the largely unexplored territory of relationship. This relationship comes from harnessing the power of individual moments in our interactions with those for whom we care. Inside Alzheimer’s contains our map.
Using the fitting acronym “IF LOST”, Nancy takes the reader through a series of lessons that focus largely on introspection. Here is the other secret to this book: the key to making meaningful connections with people living with dementia lies in looking inward first—reframing our own attitudes, centering our thoughts and harnessing the demons that blind us to seeing the potential in each person. In doing so, we move from a disease-based model of care to one that is strength-based, and we become open to opportunities we have long overlooked.
Nancy fills each lesson with engaging stories that show the power of this approach, and includes practical tips and exercises to help us enhance our skills. She shows us how to stretch our minds and think “outside the box”, because after all, that is where people with dementia are living. And she shows us how to tap inner strengths and abilities—our own as well as those of people living with dementia.
Lastly, the book includes a chapter that reinforces the fact that growth and meaningful connection do not end in advanced stages of illness and disability. Nancy clearly illustrates how the enlightened practice of “filling the spaces” continues to provide strength and sustenance right up until the last breath.
Inside Alzheimer’s is our water. It teaches us how to take what we saw to be a crumbling pile of sand and fill the spaces, creating an intricate castle. And that castle is a fortress, a safe haven, and ultimately an enduring work of art and beauty.