1. O'Brien, Nancy MSN, RN, CHPN

Article Content

by Kenneth J. Doka Hospice Foundation of America, 2001 S St., NW 300 Washington, DC 20009 800-854-3402, 202-638-5312 E-mail: Website: Price: $24.95


Living With Grief: Alzheimer's Disease, edited by Kenneth J. Doka, provides insight into the many complexities of Alzheimer's disease (AD). The authors discuss the physiology of the disease process, emotional, psychological, and social issues, dealing with ongoing grief through the progression of the disease, and future hopes and challenges related to the care of people with AD. The stated purpose of this book is to look at hospice as a model of care to provide team support for individuals and family. The authors challenge the reader to look at the societal impacts of the disease because an increasing number of people are expected to develop AD. Changes are needed in our healthcare system to respond to patients with AD before and at the end of life.


The book is divided into four parts. Part I (Alzheimer's and Other Dementias) provides content about the prevalence of AD, its societal impact, physiology, cultural and social variables, and diagnosis. The authors project that by age 85, 30% to 50% of baby boomers will suffer from AD. Part I includes general guidelines, written at a level for professionals or the lay person, about caring for a person with AD. Additional content about the special needs of people with intellectual disabilities and dementia is included.


Part II (Personal Perspectives on Alzheimer's Disease) is a series of personal accounts about the impact of the disease on the individual and the caregiver. The prevalent theme is of individuality and how that translates into the best care and approaches for the person. Excerpts illustrate the series of losses that one experiences while the disease relentlessly strips memories. Readers are encouraged to remember the person and the individual's life, hopes, and dreams, and continue to provide care based on the individual, not the disease.


Part III (Helping Patients and Caregivers Adapt) focuses primarily on grief and care for the caregiver. The hospice model of care is introduced; identifying and addressing anticipatory grief, patient and family needs, and spirituality are discussed. The authors provide a good overview on grief and grief counseling for people with dementia and their families. The information is pertinent for lay caregivers and professionals but is not intended for intensive grief counseling. Useful tools and strategies for assisting caregivers in assessing and managing grief are provided, particularly the Marwitt-Mueuser Caregiver Grief Inventory. Additional topics include the range of emotions that caregivers experience, role changes with loss of social and familial functions, ethical discussions on life and end-of-life issues, the patient's physical decline, and other stressors.


Part IV (Facing the Future) discusses and identifies the difficulties in providing hospice care to people with dementing illnesses. Barriers in the current reimbursement system, delayed physician referrals, family denial of need for additional care and support, and the need for a specialized approach in caring are discussed. The hospice interdisciplinary approach is recommended as an effective model for AD care. The full benefit of hospice and palliative care is not often realized, however, because of the aforementioned barriers. The Medicare Hospice benefit and eligibility for AD are presented in sufficient detail to help understand the significant physical and cognitive impairment required before signing onto hospice, which often limits access until the patient is close to death. A short discussion on the barriers to accessing hospice care, including the reluctance to ask the patients' wishes or preferences for care before they lose capacity to make decisions, is well done. There is a need to be hopeful in considering new and developing treatment options while knowing that death is inevitable. Ethical issues related to treatment options, especially enteral feedings, are presented, and the authors address ethical issues in defining quality of life. They propose that quality of life does not determine the value of the individual. The individual is of value, regardless of his or her situation.


The final chapter lists multiple resources, linking to personal and professional organizations for AD.


Overall, the book met its purpose of identifying the challenges of caring for people with AD and the need for health system reform in anticipation of the growing numbers of people who will be afflicted with dementia. Recommending a model of care consistent with a hospice approach to manage care of the patient and family is clearly beneficial. However, the recommendations fall short in identifying hospice as a model of care for AD in the earlier stages because of the regulatory and reimbursement issues of our current healthcare system. No clear recommendations on strategies for reform were identified.


A discussion about the rewards that caregivers receive in caring for AD patients was lacking. Advocacy for healthcare reform is needed to provide support for family members who are making healthcare decisions for the person with AD.


This book provides insights into the disease and the problems we currently face and will face increasingly as the disease affects more people. I would recommend this book as a worthwhile investment. It is clearly thought provoking as it identifies the societal impact of the growing number of Alzheimer's patients.