Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Only Connect: Promoting Meaning in the Lives of Patients with Advanced Dementia

Anna L. Romer, EdD
Education Development Center, Inc.

[Citation: Romer, AL. Only Connect: Promoting Meaning in the Lives of Patients with Advanced Dementia. Innovations in End-of-Life Care, 1999;1(4), www.edc.org/lastacts]

Dementia is a condition that forces us to reconsider what span of time we are referring to when we use the term "end of life" and even more importantly what we mean by "life" and "meaning." How we define personhood changes when we consider a person suffering from dementia—a condition characterized by the progressive loss of memory and the cognitive abilities that anchor identity, including the capacity to articulate subjective experience and to play a meaningful role in one's community. The close association of memory with meaning-making has perhaps made it easy to assume that with the loss of memory, meaning becomes irrelevant for people suffering from dementia.

Yet the person suffering from dementia has much to teach others about what it is to be human and where one can find meaning.  Our first memories are embodied: the touch of our mother's warm skin, the taste of food, the pleasurable feeling of moving our bodies through space. We internalize memories through our senses, as when a particular bar of music releases flood of feelings. The contributors to this issue call on the power of the senses to evoke a response and their experience suggests that stimulating sensory pathways can promote meaningful moments in the lives of people suffering from dementia when words no longer serve.  We turn to E.M. Forster's injunction to "only connect" from his novel Howard's End, as the red thread that weaves together these perspectives, as each contributor attends carefully to ways to rejoin the person in the "patient" in the present moment such that a connection is made that can in fact be meaningful to both people.

We open this issue with a first-person narrative written by the husband in a couple married for more than 50 years about the new relationship he and his wife have created together in light of the changes brought about by her suffering from Alzheimer's disease (Separate and Yet Together: Living with a Spouse Suffering from Alzheimer's Disease, by Thomas Cassirer). We are intentionally asking our readers to begin this issue about thoughtful current practice in dementia care with a story that brings the humanity of the person suffering from dementia and the personal experience of a close family member to center stage. It is Thomas Cassirer's unflinching commitment to join his wife where she is; to call on all that he knows about her to find a space and activities that allow them to recreate a new relationship that is meaningful and joyful to them both that is so remarkable in this essay on the experience of Alzheimer's.

Defining and measuring quality of life has been a challenging focus of ongoing efforts in end-of-life care¹  in part because of its subjective nature. Bringing this concept to dementia care poses even tougher challenges because patients with mid to advanced-stage dementia cannot report back on their own subjective experience.²  Recently, researchers and clinicians have given greater attention to understanding the person of the patient and ways of promoting quality of life^3,4,5  and excellent palliative care for those who suffer from Alzheimer's disease and related dementias.⁶  Ladislav Volicer, MD, PhD and Lisa Bloom-Charette PhD have just edited a recently published book on this topic, entitled: Enhancing Quality of Life in Advanced Dementia where they lay out a conceptual model for defining quality of life and then proffer examples of innovative practice that focus on ways of increasing positive behaviors, rather than on managing or decreasing problematic behavior.

In this issue's Featured Innovations department are two interviews with clinician-researchers working at the E. N. Rogers Memorial Veterans Hospital in Bedford, Massachusetts. The first innovation focuses on the innovative conceptual work and research of Ladislav Volicer, MD, PhD and Ann Hurley, RN, DNSc. This physician-nurse researcher team discusses the ways the field and their work have evolved in recent years. Dr. Volicer speaks about his new model for understanding quality of life for patients suffering from dementia and Dr. Hurley discusses the particular contributions and considerations of nurses in providing end-of-life care for persons with dementia.

The second Featured Innovation in this issue highlights the Bright Eyes program created by Scott Trudeau, MA, OTR/L, an occupational therapist who serves as Clinical Director for Rehabilitation at the E. N. Rogers Memorial Veterans Hospital. Bright Eyes is a sensory stimulation program he designed based on Carol Bowlby's sensory stimulation hierarchy.⁷ Mr. Trudeau has reported on the results of his research about the effectiveness of this intervention in Volicer and Bloom-Charette's new book.⁸ In this issue of Innovations, he describes the evolution and implementation of this program aimed at engaging persons with advanced Alzheimer's disease, including the ways his own thinking has been changed by this work.

We interview Professor Mary Marshall at the Dementia Services Development Centre at the University of Stirling in Scotland about her work for the International Perspectives department in this issue. An additional resource for information on international activity in dementia care can be found at a website that is new to us: EACH: The European Alzheimer Clearing House financed by the European Community. This site and others can be accessed from the Resources and Tools page.

We do not wish to underestimate the devastating effects of Alzheimer's disease and related dementias on all aspects of the patient's life and as well as on that of immediate family members. It is, in fact against the backdrop of the enormous losses inflicted by dementia on patients and their families that the momentary victories these contributors describe become meaningful. Caregivers can still make a difference in the lives of those who suffer from this disease. In fact, health care professionals and family members have a special responsibility to connect with these people who have lost the ability to make connections on their own. For this reason, quality, end-of-life dementia care must include excellent physical care as well as attending to the psychological and spiritual needs of the individual. The creative efforts of our contributors begin to flesh out some concrete ways of doing just that.

References

1. Volicer L, & Bloom-Charette L. Assessment of quality of life in advanced dementia. In: Enhancing the Quality of Life in Advanced Dementia. L Volicer & L Bloom-Charette, eds. Philadelphia: Taylor & Francis, 1999, pp. 3-20. [Return to Editorial]

2. Rabins PV, Kasper JD. Measuring quality of life in dementia: Conceptual and practical issues. Alzheimer's Disease & Associated Disorders. 1997;11:100-104. [Return to Editorial]

3. Lawton MP. Assessing quality of life in Alzheimer Disease research. Alzheimer's Disease & Associated Disorders. 1997;11:91-99. [Return to Editorial]

4. Burgener SC. Quality of life in late-stage dementia. In: Hospice Care for Patients with Advanced Progressive Dementia. L Volicer & A Hurley, eds. New York: Springer Publishing Company, 1998, pp. 88-113. [Return to Editorial]

5. Lyman K. Day In, Day Out with Alzheimer's Care: Stress in Caregiving Relationships. Philadelphia: Temple University Press. 1993. [Return to Editorial]

6. Solomon MZ, Jennings B. Palliative care for Alzheimer patients: Implications for institutions, caregivers, and families. In: Hospice Care for Patients with Advanced Progressive Dementia. L Volicer & A Hurley, eds. New York: Springer Publishing Company, 1998, pp.132-154. [Return to Editorial]

7. Bowlby MC. Therapeutic Activities with Persons Disabled by Alzheimer's Disease and Related Disorders. Gaithersburg, MD: Aspen Publishers. 1993. [Return to Editorial]

8. Trudeau SA. Bright Eyes: A structured sensory stimulation intervention. In: Enhancing the Quality of Life in Advanced Dementia. L Volicer & L Bloom-Charette, eds. Philadelphia: Taylor & Francis, 1999, pp.93-106. [Return to Editorial]