Q: What led you to write this book?

A:  In the course of my clinical and educational work with people with dementia and their caregivers, hands-on caregivers have repeatedly asked me if I had any written information, like a book, that they could purchase. They have wanted something to take away with them that offered the same sort of practical suggestions and positive, person-centered approaches to caregiving that they heard from me in person. I have published other books targeted at professional caregivers, but these are not really suitable for the needs of hands-on, day-to-day caregivers. I have written this book as a positive, person-centered, and practical guide for the difficult job done by these individuals who provide daily care for someone with Alzheimer’s disease (AD) or a related dementia. It has also been important to me to encourage and support caregivers in the difficult but very essential and loving task they have undertaken. They need their work to be valued as much as any of the rest of us does.

Q: There are lots of books for Alzheimer family caregivers out there—what makes your book different?

A: To my knowledge, there is no other book that combines what I consider to be the four central goals of my book:

1. To promote and support the continuing personhood of persons with dementia and their caregivers.
   
2. To promote a better understanding of the effects that the brain changes caused by dementia have on day-to-day living while underscoring that people with dementia still have many continuing abilities.
   
3. To promote a positive, proactive understanding of the many possibilities available for enhancing the quality of life of persons living with dementia.
   
4. To offer examples of person-centered, individualized, and practical solutions to the challenges of day-to-day living that arise with dementia.
   

My book also takes a unique approach to meeting these goals. First, it is illustrated by the actual experiences of various people with dementia and their caregivers. Second, it offers a range of possible solutions, derived from an individualized, problem-solving perspective. Integral to this unique approach is the “All About Me” form in the appendix, a document for people with dementia and their caregivers to use to record the person’s history, preferences, wishes, and habits. This information is vital to understanding how to provide care that meets the person’s needs. The information is especially important to share with caregivers who are outside of the family, so they know the person’s story when the person can no longer share it in words.

For many years, The 36-Hour Day was the only available guide for people providing day-to-day care for someone with dementia. While this book served an important role in its time, it is very disease-focused and reactive (i.e., it takes a trouble-shooting, negative approach) rather than trying to understand what is happening with the person with dementia and taking a proactive approach to meeting their needs. A number of newer books promote person-centered care, but these tend not to offer the extensive practical suggestions for day-to-day care from an individualized point of view that I provide. In my book, I strive to convey that no “one-size-fits-all” solutions exist, but instead I offer valuable guidelines, strategies, and problem-solving approaches that let each person with AD and each care partner devise unique solutions that meet their needs.

Q: You say in the book: “Caregiving is a journey, not a destination; caregiving is a process, not a state of being.” Can you elaborate on this point?

A: Every caregiving situation is unique, just as every person with dementia and every caregiver is unique. In addition, because the symptoms of dementia are progressive, the needs and challenges evolve and change over time. As a result, caregiving is a process of evolving and changing. Caregivers need to learn not to be rigid in their expectations and to take a problem-solving, flexible, go-with-the-flow approach when dealing with the effects of this disease. The caregiver who can “go with the process” at the present rather than focusing on specific tasks (e.g., the need to get a bath done or for the person to eat) or worrying about future problems (e.g., what to do when the person becomes incontinent) will experience less stress and be better able to be creative, supportive, and positive in the present moment. For example, a caregiver can focus on enjoying a leisurely meal with the person or giving the person lots of time to eat while doing other things in the kitchen, which reduces stress on the caregiver and the person and still results in the person having a good meal. Another example is a caregiver who is able to shift gears, so that if the person is very distressed by the idea of having a bath just now, the task is dropped for another more pleasurable activity, and the bath is undertaken later.

Q: Unlike other books on this topic, yours begins with an in-depth discussion of caregiver burnout — why this emphasis?

A: My experience has been that people who take on caregiving tend to be very giving — to the point of neglecting their own well-being. Most caregivers would feel guilty about taking care of themselves or feeling exasperated with the person in their care. In addition, caregivers often go unappreciated, both by the person in their care and by others, even when what they do is so vital to the well-being of persons with dementia. I felt that it was essential to start off by recognizing the importance of the caregiving role as well as the challenges of the role — to help caregivers feel supported and able to continue. Without this support and the permission to take care of themselves, caregivers can become burned out and unable to provide care. And many will turn to a book like mine when they are already near wits end.

Q: How do people with dementia retain a sense of their own, unique selves?

A:  People with AD and other forms of dementia remain very much the person they always were — in terms of values, habits, what matters most to them, attitudes, interests and in so many other ways, right down to small details such as the way they like to brush their teeth. What changes is not the fundamental person — with this rich history of experiences, preferences, and habits — but the person’s ability to act independently on these preferences. And so it is critical for caregivers to honor and respect the person for him- or herself and try to support the person’s lifelong values and preferences. We see these preferences expressed in many ways if we read the clues:

• A man may not be able to say that he likes his coffee piping hot with a little sugar, but when offered a cup of lukewarm coffee with lots of milk and sugar, he may refuse it or even throw it and become distressed
  
• A woman may not be able to say that she prefers peace and privacy first thing in the morning, but she may be very irritable and distressed if there are too many people around and too much noise and commotion first thing in the morning.
  

The list of possibilities for how a person expresses his or her own unique self is endless, which is why it is so important for caregivers to know as much as possible about a person’s past, habits, and preferences when providing care.

Q: You promote the concept of "living in the moment," so what does this mean when dealing with Alzheimer's?

A: The first and most important guide to living in the moment, and really to being an Alzheimer’s care partner, is to stand in the person’s shoes. You have to try to understand, feel, and experience the world as the person with dementia does, which is why my book includes so many quotes from people talking about their own experience with the disease. This awareness is a great guide to caregiving and helps both with appreciating caregiving as a process and with accepting the present moment as the most important moment. With this awareness, caregivers can recognize the pleasure and beauty of the moment (e.g., savoring every drop of the soup or enjoying the soft feel of a sweater the person is trying to put on) and come up with creative ways to help the person have the best-quality moments. Understanding the person’s needs, as well as his or her losses in ability, can guide caregivers in finding ways to help the person be involved and engaged with life activities — both the essential ones, such as eating and bathing, and the simply pleasurable ones, such as gardening or cooking.

Q: What’s the most common problem family caregivers come to you with and how do you advise them?

A: The most common question is about how to manage some form of behavioral symptom of dementia — this may be refusal to participate in one of the many activities of daily living (taking a bath, going to the bathroom, eating, or going to bed at night) or actual anger and aggression towards the caregiver or others. The particular solution to these challenges is unique to each situation, which is the first and most important thing I stress. It is essential to understand what is happening from the person’s point of view. Integral to this approach is the “All About Me” appendix, as I’ve already mentioned. Based on the kind of information captured in this personal record, I encourage caregivers to come up with unique solutions that work for the person in their care, reminding them that they know the person better than anyone else. I take caregivers through the problem-solving process described in the book, the first step of which is trying to see things from the point of view of the person with dementia. Virtually all challenging behaviors can be understood as the person’s expression of some unmet need. Once a caregiver takes this step toward understanding the person with dementia, we then work together to come up with an individualized solution for the situation.

Q: What do you want readers to get out of your book? What would you like caregivers to understand better?

A:  The first thing is to appreciate that each person with AD is unique and special and still has the same needs as all other persons — the need, for example, to be treated with respect, to have the things they value be honored, to be able to make choices and decisions, and to live a quality life in the face of the losses of ability caused by AD. The second thing is to appreciate that these people, who have difficulty doing things on their own, are not being deliberately difficult; the disease is causing the challenges, not the person. I ask caregivers to step into the person’s world and recognize that he or she is trying just as hard possible to cope, but is working with much-reduced brain capacity. Imagine that by the time a person is diagnosed with the disease, 80% of the damage to the brain has already occurred. People with AD are trying as hard as they can to manage on a day-to-day basis, and it is caregivers who are better equipped to do the necessary adapting, to take a problem-solving approach and ask themselves “what does the person need?” and come up with creative solutions that work specifically for that person.

I also want caregivers to come away from the book feeling they have received a huge pat on the back. I know that they too are trying to do the very best they can and to provide the best quality of life for the person with AD in their care. It is very, very challenging work.