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The Longest Loss

Alzheimer's Disease and Dementia

Saturday, May 9, 2015 - 1:00 pm to 4:30 pm - Orcas Senior Center


The program will present a 2.5 hour video and will conclude with a 30 minute live panel discussion staffed with Hospice, Alzheimer’s and dementia providers from our community. 

When the diagnosis is Alzheimer’s disease or another dementia, grief doesn't wait for death. Grieving can begin before a formal diagnosis or in the doctor’s office when patients and families receive confirmation of illness. Over a span of what may be a decade or more, multiple losses associated with dementia become a pervasive part of everyday life for millions of patients, families and friends. After the death, survivors’ grief may be complicated by the nature of a lengthy disease process that has changed their relationship with the deceased. Through a combination of candid, compelling interviews and unscripted in-studio discussions, experts will identify how medical and social service professionals can best improve care for patients, families and themselves while coping with loss and grief associated with these progressive illnesses. 

3 CE Credits available for professionals 


At the conclusion of this event, participants will be able to: 

  1. Describe the characteristics of Alzheimer’s disease and other dementias, including unique challenges that these diseases present to patients and families; 
  2. Discuss the grief of persons with dementia, including nonfinite loss and anticipatory mourning, as it is experienced in early stages and during progression of disease; 
  3. Recognize changes in patient behavior that may be indicative of grief, and describe therapeutic techniques that can be used effectively, including reminiscence and ritual; 
  4. Support families as they navigate changes in the relationship and transitions in care as the disease progresses, and understand the potential grief reactions brought about by these changes; 
  5. Identify the demands and challenges on professional caregivers when caring for individuals with Alzheimer’s disease and other dementias and list several strategies for employer support and self-care; 
  6. Describe innovative ways of supporting family caregivers exhibiting grief reactions throughout the illness as well as after the death of the individual with dementia, noting factors that compound grief, including guilt, ambivalence and relief.


Part I: Coping with Loss at the Onset of Disease

  • Although memory loss is part of the normal aging process, dementia is not. Dementia is the result of disease – most commonly Alzheimer’s disease – or circumstance, such as traumatic brain injury.
  • Regardless of origin, the nature and progression of dementia can be dehumanizing for the patient and challenging for caregivers and clinicians. Professionals who care for the ill, dying, and bereaved generally possess the basic skillset to care for persons with dementia and can utilize that knowledge as a foundation to address the unique issues involved in caring for and supporting persons with dementia and their families.
  • From the onset of symptoms, through diagnosis and progression of disease, grief is nearly constant as persons with dementia and their families deal with myriad losses including memory, abilities, and relationships. Professional caregivers should consider innovative approaches to assist persons with dementia and their families in coping with these losses.
  • The ongoing experience of caregiving can complicate and/or facilitate grief. Providers should recognize that as families attempt to navigate the progression of dementia, they may need additional support when encountering care transitions that have the potential to exacerbate grief.
  • Families who believe they have prepared for the typical, long-term trajectory of dementia may need support if the person with dementia declines more rapidly than expected or dies suddenly from an acute event, such as a heart attack.

Part II: Living with Grief and Dementia at Life’s End

  • There is scant research for guidance, but informed practice indicates that touch and other sensory therapies, including tone of voice used by caregivers, can help to calm or reassure distressed or agitated late stage dementia patients who may be suffering emotional or physical pain.
  • The nature of dementia and the strain of isolation of caregiving can lead to ambiguous loss, disenfranchised grief, and complicated grief. Some individuals may need additional help and support adjusting to repeated loss.
  • End-of-life decision making can be impacted by the nature of grief and dementia, especially if the person with dementia can no longer be a part of the process. Family members burdened with multiple loss experiences of the illness, as well as caregiving exhaustion, may disagree with each other, influencing end-of-life decisions and reactions. Health, social service and clergy professionals can offer critical support in guiding families through these challenging situations.
  • Clinicians and other professional caregivers often form attachments to persons with dementia and may also grieve losses associated with their patients. Employers should develop a range of supports to offer staff, and professionals should be aware of and practice healthy self-care strategies.
  • Because of their end-of-life care expertise, hospice and palliative care providers can provide services to community members coping with dementia prior to a death as well as afterward. Early provision of support services can serve as a bridge and provide a way to introduce hospice and palliative care to families. Online dementia specific support communities can also be a useful resource.

Part III: Local Panel discussion 


Charles A. Corr, PhD, is a volunteer member of the Board of Directors of the Suncoast Hospice Institute (an affiliate of Suncoast Hospice); Professor emeritus, Southern Illinois University Edwardsville; a long- time member and former Chairperson of the International Work Group on Death, Dying, and Bereavement; a long-time member of the Association for Death Education and Counseling; and Senior Editor of the ChiPPS (Children’s Project on Palliative/Hospice Services) quarterly E-Journal on pediatric palliative/hospice care.

Kenneth J. Doka, PhD, MDiv, is a professor of gerontology at the Graduate School of The College of New Rochelle and Senior Consultant to the Hospice Foundation of America.

Nancy Pearce, MSW, LISW-CP, MS, is a licensed gerontological social worker with 30 years of experience in working in long-term healthcare and hospice settings.

Peter V. Rabins, MD, MPH, has been on the faculty of the John Hopkins School of Medicine since 1978. He is the emeritus Richman Family Professor and founding director of the Division of Geriatric Psychiatry and Neuropsychiatry in the Department of Psychiatry and Behavioral Sciences and a member of the Johns Hopkins Berman Bioethics Institute.

Kathie Supiano, PhD, LCSW, FT, F-GSA, is an Associate Professor in the College of Nursing, and the director of Caring Connections: A Hope and Comfort in Grief Program at the University of Utah College of Nursing.


Dorian King, BA, graduated with a major in Economics, Ethnicity, and the Environment from Mills College. Upon graduation, she promptly entered health care where she has worked for the last 29 years. She currently serves as the Community Outreach and Education Liaison for Hospice of the Northwest Services

Molly Roberts, for the past 30 years Molly's focus has been home hospice care for Orcas Islanders. She was the RN on the former Lahari Hospice care team, and now serves as the RN for Orcas Volunteer Hospice.

Larry Hughes, Licensed Clinical Social Worker with 15 years experience. Larry's current focus is helping seniors and their families cope with life's changes and challenges.

Libby Garcia, R.N., M.S.N. Currently working at Orcas Medical Center, Libby's background is mostly emergency nursing, and hospice. Her grandmother, Helen Buchan R.N., ran a Red Cross station on Orcas long ago. Libby assists people with advanced healthcare directives, both filling out paperwork and facilitating end-of-life conversations with families.

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