In 1994, I started to study dementia and care of people with that disorder. I did so simply because a professor for a master’s course I was taking specializes in dementia care. I have been interested in the care of older people for a long time. I worked in a rehabilitation and chronic care hospital while I was studying for my baccalaureate degree. Due to the nature of the services that hospital provided, a large proportion of the patients were older adults. That was where my interest in elder care began to grow.

As one requirement for this master’s course, the professor asked us to spend a day in a nursing home, trying out the nursing assessment tool she had shown us. After arriving at the home, we dispersed and I went into a resident’s room. The occupant, an elderly lady—and I mean lady—agreed to speak with me. I must confess that I do not recall asking for her consent before assessing her. Anyway, we started, and I asked her to follow my instructions—to raise an arm, to raise both arms, and so on and so forth.

Are you testing me?
After three or four commands, she looked at me and asked, “Are you testing me?” That was one of the more awkward moments in my professional life. I didn’t know much about dementia back then. How I related to people with dementia was governed by assumptions and ignorance. I thought that people who suffered from dementia would not know what I was doing. Her response caught me by surprise. I felt terrible for testing this lady, who had the insight to appreciate what was happening.

However, it was also one of the most memorable moments in my professional life. I became acutely aware that, in fact, all these tests we professionals are so proud of mastering mean very little to the people who voluntarily or involuntarily become the subjects of our testing.

A matter of focus
Following this incident, all of the assignments for my master’s program focused on different issues related to dementia care, and I realized that there was a great deal of literature on the care of caregivers of people with dementia, but very little on those unfortunate enough to suffer from the disease.

If I were suffering from dementia, I would want researchers and clinicians, first and foremost, to appreciate the kind of person I am and plan my care accordingly.A few months after graduating with my master’s in Canada, I came back to Hong Kong and started my academic career. As a nurse academic, I know that I have to stay in practice. I joined the local Alzheimer’s Disease Association in 1996 and have been an active volunteer ever since. I also joined other local self-help organizations and support groups. Maintaining my practice by working with families and clients in self-help groups and other community support services has been satisfying to me. I became involved in various aspects of caring for people with dementia and their families—management of behavioral problems, development of communication techniques, support of families, delivery of nonpharmacological interventions and training of care workers. My doctoral thesis was about improving the social well-being of nursing home residents with dementia.

As I traveled along the road of my academic career, I immersed myself in writing grant proposals, developing networks, conducting research projects and preparing manuscripts. To get noticed and published, one has to compete with others and oneself to do something new and exciting all the time—something different from what others are doing. The field of dementia care is very much multidisciplinary. I became disillusioned after seeing that the work of the various disciplines—nursing included—did not always meet the needs of people with dementia and their loved ones.

Do you know who I am?
As researchers and clinicians, we are all very keen to develop new measures and interventions, and to study their effects over time. But do people with dementia need all these assessments and interventions? I tried to visualize myself as a dementia patient, with all of these experiments performed on me. And I knew that, if I were suffering from dementia, I would want researchers and clinicians, first and foremost, to appreciate the kind of person I am and plan my care accordingly. I knew I would want some peace.

Two years ago, I was invited to speak at a multidisciplinary conference on Alzheimer’s disease and related disorders. The organizer of the symposium asked me to speak about the nursing perspective on dementia care. The invitation offered me a chance to review the previous 15 years of my work in caring for people with dementia and their families. It was a direct question. As a nurse, what would I like to see in caring for this particular group of clients?

I don’t know why, but I started to write poetry for my scientific abstract (see below). I remember vividly that I wrote it between scientific sessions while attending a regional conference of an international psychogeriatric association in Dublin. I might have written the poetry because, at the conference, I heard only about various interventions and assessments of people with dementia. Taking the side of the person with dementia, I felt oppressed. Or, it might have been because I had been asked to speak from a discipline-specific perspective, rather than on a particular topic.

In the poetry, I adopted the persona of someone suffering from dementia. As the advocate of such a person, I reflected on what I would like to see in the care of people with dementia. Bits and pieces of my thoughts and feelings over the years were consolidated at that special point to become the themes expressed in my poetry. I was deeply touched by what I was writing, and I was moved to tears several times while working on it. Before the end of the conference, my abstract was done.

Not surprisingly, the conference organizer asked me to revise my abstract to a more conventional format, but I stood my ground. Needless to say, I was happy to see my abstract appear in full in the conference proceedings.

What would I say about my current state of working for people with dementia and their families? Basically, my thoughts and passion have not changed. I believe that, as nurses, we have a lot to offer people with dementia and their families. It is a very lonely journey when one starts to lose one’s mind to Alzheimer’s. I urge nurses to recognize the value of “being with” and be more vocal about what we think is good for care, because we are the ones who spend the most time with our patients and clients.

Dementia care has a somewhat different meaning to me now. My mother came back to Hong Kong in early 2010 to spend a few months with me. She is starting to show some early signs of dementia. She used to complain about having memory problems, and I have known for a while now what lies ahead for her. I also know that I will be tested on whether I can live up to what I preach. These tests will appear along the path in my trajectory as a caregiver, not only to test me, but also to teach me. For now, what I have learned from living with my mother is to treasure each and every moment of the time we have, in the present, together.

Claudia Lai

Claudia Kam Yuk Lai, RN, PhD, is associate professor in the School of Nursing at The Hong Kong Polytechnic University, Hong Kong SAR, China. Her specialty is gerontological nursing, particularly the care of older people with cognitive impairment and issues of long-term care, including caregiver support. She also focuses on therapeutic interventions for older adults, use of information technology in care and quality standards in residential care settings.

Nursing perspectives in the care of people with dementia: A personal view By Claudia K.Y. Lai “Listen, hear me out.” Indulge me, go with my flow, when I am lost in time Stand by me, but let me be, when I am lost in action Stay still, hold still, resist your urge to do or say something There is no need to fill the air with sound, nor our space with motion Don’t be embarrassed by my loss of words, or my many repetitions Don’t get angry when I fail to listen, even though you have told me a hundred times ’Cause this is me now Don’t wait on me, or try to do everything for me. I know you are in a hurry Don't patronize me; there is no need for sympathy I still have my pride Just let me be Stop putting me in groups. Oh, I am sick of groups, I have been a loner all my life Not another assessment please, not another tool to gauge me. I am no better with or worse without others talking about the “quality” of my life No more training please: the training part of my life, as in my potty training days, was a lifetime ago I plead, be sensible. Let me spend my days in peace Try to understand me. Read my mind, even though it isn’t easy Don't jump to conclusions about what my problems are and call it some kind of BPSD I don’t know what it means but I have heard it often enough from people talking about me It is all right to wander, and there’s nothing wrong with fidgeting about nothing I have never been idle all my life Don’t pat me on the head Don’t doll me up like a girl Don’t tease me like a teenager Just be yourself when you are with me. You can get angry Only don’t let anger consume your heart Let the fretting emotions pass Nurture a sense of humor That is my humble suggestion to you Humor is what will keep you sane when you have to work with me day in, day out Trust me, I appreciate how hard it is Show me kindness by popping in with a smile Simply stay by my side for a couple of minutes Give me the pleasure of your genuine company If time permits, help me to join others in their games when I am ready Trust me, I can appreciate it My mind may be lost, but I do have my lucid moments Our paths cross now and there is probably little we can do to change this The best way to cope is just to Be yourself And show me you care by honoring me, for who I am now and who I used to be Just let me be  RNL First published in the proceedings of the 11th Asia-Pacific Regional Conference of Alzheimer’s Disease International, 13-15 June 2008, Taipei, Taiwan.