Dedicated to Heli (Helena) Munroe, my friend and professional colleague and former Alzheimer's Care Quarterly (ACQ) review board member, who is now herself courageously living with Alzheimer's disease.
As the disease progresses, even with the few anti-dementia medications currently available there is little or no hope of recovery of memory. But people do not consist of memory alone. People have needs as well as feelings, imagination, desires, drives, will, and moral being. It is in these realms that there are ways to touch our patients and let them touch us.
-Luria (as paraphrased by Cohen and Eisdorfer1(p22))
It's more important to know what sort of person this disease has, than what sort of disease this person has.2(p1)
-Sir William Osler
These inspirational words of these 2 great healers, Luria and Osler, have been my watch-word and compass, and my challenge, over the course of the last 20-plus years of partnering in dementia care.
In September 1986 I set foot on a unit for persons with dementia for the first time; this was 3 weeks after my family and I became caregivers for my mother-in-law, who had midstage dementia, and just 4 months after I had finished my training as an occupational therapist.
What a learning experience awaited me!! One of my particular mentors is my friend Heli Munroe,* a pioneer in introducing person-centered care, well before the term was ever first uttered, and who continues to teach us with her brave personal journey through the course of Alzheimer's disease. Please see more about Heli's story in a separate article in the Person to Person column in this issue.
I am so grateful for the many persons with dementia and their care partners who have shared and informed my journey from then to now and look forward with hope to those who will share the next steps.
Then and now there has been much crossover between my personal and professional life, which, according to some schools of thought, is not supposed to be a good thing. These clinical approaches would have professionals draw strict boundaries between their working life and their private life. However, from my perspective and indeed that of Luria, Osler, and many others, the blurring of boundaries has been "thee" thing, which has helped me stay focused on what really matters: the person, his or her story, and strengths. Adhering to absolute boundaries between our own lives and the lives of persons with dementia is very likely to create a "them and us" attitude, to severely interfere with the quality to care, to create barriers to implementing quality care.
However, one arrives there, being able to stand in the shoes of the other is the only way to really make a difference in the quality of care. Dementia care is not the sort of work one can leave at the office door.
At the same time, professionals can be guided in the "blurring of boundaries" by the need to maintain a healthy balance. The work of enhancing the quality of life for persons with dementia is enormous and never-ending and without balance it could take over one's life.
In 1998 mid-way along this journey, there was still another blurring of boundaries between my professional and personal life. At this time the concept of the journal, Alzheimer's Care Quarterly (ACQ), which just became Alzheimer's Care Today (ACT), was born and became my personal mission. At the invitation of the then publishers, Aspen, I was privileged to be involved in shaping the focus of the journal: to promote person-centered care and thus enhance the quality of life of persons with dementia. Then, as now, the goal of the journal is to provide practical, evidence-based information that can be readily incorporated into the care practices of a range of disciplines across the continuum of care.
After 10 years as editor it is time for me to pass on the torch. Please join me in welcoming Peg Gray-Vickrey, DNS, RN, C, as the new editor of the ACT. Thank you, Peg, for taking up the challenge of continuing to improve the quality of care of persons with Alzheimer's disease. I know that I am leaving the journal and its vital mission in capable hands and I look forward to future issues.
The topic of this issue of ACT, "Quality Care," is an excellent focus for reflecting on the goals, lessons learned, as well as the future journey, that is, where have we been and where are we going?
Looking back to 1998, the dementia care field was embarking on a vital step forward, to truly put the needs of persons with dementia first, to embrace and put into place the burgeoning research and clinical information that had been developed in the previous decade about quality dementia care. Stated in practical terms, one of the primary goals of the ACQ was to take the concluding sentences of many research articles "the practical applications of these findings have yet to be explored" to the next level. We sought to break down the barriers that were preventing caregivers from meeting the needs of persons with dementia, from putting into practice the available evidence-based information on person-centered care. This goal is reflected in the editorial of the first issue of the journal.
The words of an Irish proverb-"It is in the shelter of each other that the people live"-undoubtedly born of generations of confronting the challenge of living in a lovely but often inhospitable landscape remind us that true shelter is to be found in the company of other people. Learning from nature, a copse of trees survives the harsh climate by supporting each other against the buffeting of wind and weather. A lone tree has little chance.
The person struggling to withstand the assaults of Alzheimer's disease or another dementia needs caring support and shelter to be enfolded by positive relationships with others.
Caregiving takes place in the context of a relationship, each one unique. As dementia redefines the nature of these relationships, we sometimes achieve a marvelous connection and we celebrate. Sometimes we make mistakes and we miss the mark. From both of these experiences we learn and grow and we develop guideposts. Please join with us in developing Alzheimer's Care Quarterly as another forum for learning and growing.3
Reflecting on the first 34 issues of the journal, I would like to focus on this dialogue with regard to the 4 major barriers to the implementation of person-centered care.
"The main thing is that people treat me like a person, just like anyone else," says Bob Glavin, who lives with early stage Alzheimer's disease.4(p3)
And, there we have "thee" primary barrier to providing quality care, the misplaced notion that somehow persons with dementia are fundamentally different from persons who do not have dementia. At ACQ/ACT we set out to break down this barrier in several ways. We provided a forum for persons with dementia to share their stories and perspectives in the feature articles as well as Person to Person columns and later the insightful columns by Richard Taylor, Alzheimer's From the Inside Out. These columns later became a book of the same name, published in 2007 by Health Professions Press.5 There were 2 issue topics entitled "The Lived Experience" (2:2 and 4:1) with one of these being co-edited by Marilyn Truscott, who has early stage Alzheimer's disease. Marilyn also serves on the review board.
The journal has published countless evidence-based articles and columns such as Best Practices, which offer readers practical guidance in implementing person-centered care. From the many communications I have had from practitioners, these articles have been critical in transforming care in their settings.
ACT/ACQ "talks the talk" by maintaining a strict policy about terminology, with the person always coming first, that is, "the person with dementia," emphasizing that he or she is a person first and foremost. Terms that depersonalize (eg, subject, care-receiver, demented person, victim) are not printed. Persons with dementia have the right and the need to be involved in planning their own care, and this has been recognized in recent years by referring to care partners, as opposed to caregivers. Partners in Care was the focus of issue 5:4 (October 2004) and the Column Partners in Care, where early stage support group leader Phyllis Dyck shares the triumphs, challenges, and views of persons with dementia, was first introduced in this same issue.
Clearly in terms of truly implementing person-centered care we are not there yet, many challenges remain as noted in the quote that follows. At the same time much progress has been made and the ACT played some part in that forward journey.
In my experience the ambivalence I felt as a patient was the help I so desperately needed from the "caregiver" in order to function within the society, and simultaneously the bitter resentment that built up toward the "caregivers" because they actually highlight the inadequacies. The "need" versus the "resentment" is a torment that is difficult to balance as you seesaw precariously between the two.6(p73)
These words of Jillian Moss eloquently identify another critical barrier to person-centered care: appreciating that Alzheimer's disease and other dementias are neurological diseases that affect communication and behavior; the person is not being difficult on purpose, behavioral symptoms are an expression of an unmet need.
ACQ identified this barrier in its first year in issue 1:4 on the topic of Understanding Behavioral Symptoms. This issue included the key clinicians and researchers in this area and has been noted as key reference piece by practitioners. Issue 6:2 provided an update on progress, including a practical review article by Jiska Cohen Mansfield. Many other issues have addressed closely related topics such as communication (3:2 and 8:1), staff training (5:3), supporting care partners (2:1 and 5:4) and hearing and healing the hurt (7:2 and 7:3).
A new study about the use of psychotropic medication reveals that we still have a very long way to go in understanding that behavioral symptoms are an unmet need. This study involving 69 000 nursing home residents with dementia found that people living in special care units get more psychotropic drugs (45%) than those living in non-special care units (30%).7 Both numbers are alarming and give us another reason to challenge the status quo and advocate for people with dementia.
All of the issues of ACT have sought to move forward on the key agenda of ACT, to develop evidence-based practice. We are, however, by no means there yet, and the third barrier, translating research into practice, remains. The journal has contributed to breaking down this barrier by having authors include practice recommendations in every research article and by including features such as the Best Practices column, practical program innovations from the field, as well as the practical advice in other columns such as Building Ideas, Resource Review and Reflections, and Challenges in Care. In 8:3, a new feature, pullouts that can be photocopied and contain practical information and resources is included. This barrier was directly addressed in issues 4:2 and 4:3, Translating Research into Practice, guest edited by noted applied researchers Louis Burgio and Rebecca Allen. Numerous other issues addressed wide-ranging and key areas of practice and provided significant review articles by the top applied researchers and clinicians in the field. To name but a few: Environmental Issues (3:1, 6:4), Engagement in Meaningful Activity (1:2, 2:4, 5:2), Ethics (3:3).
In this issue and the previous one (9:1), we are privileged to carry the state-of-the-art research reviews and recommendations from the Alzheimer's Association's Quality Care Campaign. Many thanks to Peter Reed and Jane Tilley for sharing this valuable information and guest editing these issues.
Moreover, with these issues and the previous 2, Well-being and Being Safe (8:3) and Living Life With Quality (8:4), we come full circle to the fourth barrier to person-centered care. Care partners, professional and frontline workers, and family also need to be recognized, and recognize each other, as persons. We need to break down the barriers between persons with dementia and persons without, disciplines, settings, family and paid caregivers, professionals and frontline staff, to banish the "it's not my job" response and appreciate that all aspects of quality dementia care are in fact everyone's job.
One of the key ways in which the journal has sought to break down this barrier is by focusing each issue on a particular topic, such as Finding Home (1:1) or Atypical Dementias (6:3) or Eating and Nutrition (3:4) or Alternative and Complementary Therapies (7:1), that is of interest to a wide range of individuals in a variety of settings.
The journal has also assembled review board members who are experts in their profession and the field and thus created a dialogue within the journal and between members. Here are some comments from review board members about this interdisciplinary dialogue.
Your uniquely inclusive approach has indeed made a very meaningful contribution to Alzheimer's care. On a personal note, you succeeded in connecting us as Editorial Board members to each other's work and for that I am eternally grateful. (Lisa Gwyther, MSW, LCSW, personal communication)
This journal was unique in the way it merged the applicable, practical, and the actual knowledge that is emerging in academic circles. It was also comprehensive in its approach to topics, and was therefore an important contribution to all in the field. (Jiska Cohen-Mansfield, PhD, ABPP, personal communication).
[ACT is] a journal that recognizes the value and combines the knowledge that can be derived from academic research, qualitative and descriptive studies, and personal, anecdotal insights. The way the journal has combined knowledge from all of these sources has helped all of us stay more centered, where we should and must be to make meaningful contributions to Alzheimer's care. (Katie Maslow, MSW, personal communication)
Once again, we are not there yet and much work remains to be done. However, we are beginning to see this barrier crumble in practice with, for example, the introduction of universal workers and the recognition of the primacy and expertise of family caregivers and frontline staff.
Many thanks to all members of the review board for sharing their expertise and their support and most especially for the privilege of learning from and working with you. Special thanks to Associate Editors present and past, Betsy Brawley, Maggie Calkins, Geri Hall, Carly Hellen, Dan Kuhn, and Anna Ortigara as well as those who have served as guest editors and column editors (Maggie Calkins, Phyllis Dyck, Kathy Laurenhue, Anna Ortigara, and Stephen Post) and the many more who have contributed articles and suggestions for articles.
It is a great honor to have served as Editor of ACQ/ACT and to have played a small role in enhancing the quality of life of persons with dementia and in breaking down the barriers to quality care.
In the way ahead we can be guided by a wise folk expression, variously attributed to both Will Rogers and Mark Twain, "Even if you're on the right track, you'll get run over if you just sit there."
In closing I would like to return to my clinical and personal experience with which it illustrates both how far we have come and how far we have yet to go in breaking down the barriers that interfere with quality care and the quality to care.
This last anecdote is the most painful, and the most indicative of how far we have yet to go in truly practicing person-centered care, of recognizing the rights of persons with dementia to plan for their future care, and indeed of public understanding about the devastating symptoms of dementia. The work of the ACT is not yet done.
This is the true and tragic story of my close friend Heli Munroe, Dr Helena Munroe.
Please see the Person to Person column in this issue for more details.
REFERENCES