24: Late Stages: Hospice & Bereavement

This program will discuss:

  • End-of-life and hospice issues
  • Hospice services and advance directives
  • The bereavement process
  • There are no easy answer when its comes to the care of another
  • Our hope is to offer you useful information and guidelines for caring for someone with dementia
  • These guidelines will need to be adjusted to suit your own individual needs
  • As Alzheimer’s disease progresses, individuals will need increasing levels of supervision and assistance
  • Not all people with the illness will progress in exactly the same way
  • Classification of stages
  • Early, middle, late and end stages

Early stage:

  • Forget appointments, names, and places
  • Lose valuable items
  • Get lost in less familiar places
  • Depression often results from these early losses.
  • Typically lasts 2 to 3 yr

Middle stage:

  • Difficulty managing money, legal affairs, workplace affairs, and driving
  • Home maintenance, housekeeping, and cooking will be frustrating and dangerous
  • Difficulty functioning in new environments
  • Get lost even in familiar environments
  • Personality changes become noticeable
  • Manage personal care with encouragement
  • Typically lasts 3 to 4 yr

Late stages

  • Increasing difficulty with activities of daily living
  • Difficulty understanding the environment
  • Difficulty with language
  • Communication difficulties
  • Sleep difficulties
  • Need 24 hour care
  • Typically lasts 4 to 7 yr

Terminal or end stage

  • Not be expected to live much longer and hospice care might be considered
  • No longer ambulatory
  • Incontinent
  • Lose weight
  • Difficulty chewing food and communicating
  • Not recognize people or objects
  • Rarely lasts more than 1 yr

Final stages

  • Difficult to know how close an individual is to death
  • Risk of malnutrition from muscle contractures and inability to swallow
  • Potential complications of being bedridden
  • Requires extensive care
  • Death usually occurs as a result of some other medical condition or shutdown of the brain
  • Robert has entered the late stages of Alzheimer’s disease
  • Placed in a residential facility when he developed difficulty speaking and controlling his bowel and bladder
  • Unsteady on his feet and took several falls
  • Stopped speaking and has difficulty swallowing
  • Spends his time in bed or in a wheelchair
  • Losing weight
  • Screams and groans when he is moved
  • Does not seem to recognize anyone
  • For the past 24 hrs, he has had a mild fever of unclear origin

What should Mary do for Robert at this point?

  • A. Initiate artificial feedings
  • B. Admit Robert to a hospital and obtain intensive nursing care
  • C. Place Robert in hospice care

Choice A: Initiate artificial feedings, is not the best option.

Choice B: Admit Robert to a hospital and obtain intensive nursing care, is a possible option.

Choice C: Place Robert in hospice care, is the best choice in this situation.

  • Artificial Feeding
  • Nasogastric tube feeding
  • Tube inserted through the nose into the stomach
  • Useful on temporary basis
  • Percutaneous endoscopic gastrostomy (PEG)
  • Surgical placement of a tube through the upper abdomen and stomach wall
  • Useful on temporary basis
  • Total parenteral nutrition (TPN)
  • Delivers nutrients by intravenous (IV) infusion directly into the blood stream
  • Can add to confusion and discomfort
  • Artificial feeding does not prolong life, reduce the risk of infection or pressure ulcers, or improve the person’s function or memory
  • Can cause pain, discomfort, agitation, infections, and decrease the quality of life
  • Hospitalization
  • Aggressive treatments have low rates of success among persons with dementia
  • Can hasten functional and cognitive decline and even death
  • Increased risk of infections
  • Can have better long term outcomes with treating pneumonia and other infections at home or in a care facility
  • “Do Not Hospitalize” clause in advance directives
  • “Do Not Resuscitate” clause in advance directives
  • Hospice Care
  • Palliative care
  • Comfort and symptom relief
  • Avoids
  • Tube feedings
  • CPR
  • Hospitalization
  • Dialysis
  • Supports families through the grief
  • Dying naturally with dignity
  • Hospice Care Process
  • Medicare Part A coverage
  • Life expectancy of six months or less
  • Waive the right for Medicare to pay for other services to treat the terminal illness
  • Life expectancy guideline is based on the FAST (Functional Assessment Staging) scale
  • Stage 7C or greater
  • No control over bowel or bladder,
  • Little or no speech
  • Unable to walk.
  • Difficulty swallowing and refusing food
  • Other neurological signs
  • Up to the physician to make the judgment about stage and life expectancy
  • Written plan reviewed by physicians and the hospice agency team
  • Services
  • Nursing care
  • Physical or occupational therapy
  • Speech-language pathology services
  • Certified home health aide services
  • Medical social services
  • Physician services
  • Medical supplies, equipment, and medication
  • Short-term inpatient care for less than five consecutive days
  • Counseling for the family for grief and bereavement
  • Medicare and Medicaid insurances will cover the cost except for 5% of medications and 5% per day for Respite Care
  • Hospice is available for 6 months, but can be a little longer if justified by a physician and funding is approved

For additional information about hospice care, click on the provided links www.cms.hhs.gov www.medicare.gov www.nhpco.org

  • Physician will make a referral to a hospice agency
  • Representative of the agency will visit the person with Alzheimer’s and the family to make an assessment
  • Physician will order the appropriate services
  • Hospice nurse will meet with the family and develop a plan based on hospice recommendations
  • Nursing assistant will visit to assist with care
  • Periodic assessments by the hospice nurse with revision of plans accordingly
  • Grief counseling
  • Medication for pain and comfort
  • Food and fluid
  • Spiritual support
  • Counseling regarding autopsy and funeral services
  • End of life decisions
  • Discuss with family and physician
  • Living will
  • Legal right to limit, refuse, or discontinue treatments
  • Durable power of attorney for health care
  • Health care guardian
  • Advance directive forms recognized by specific states
  • Make available to family, physicians, and hospice agency
  • Helps family members understand the illness
  • Can advance knowledge of the disease
  • Research institutions will perform brain autopsies
  • Requires prior agreement with the research organization
  • Specialist must remove the brain and prepare it for transport to the research facility

Click here to find an institution in your area that will perform brain autospises

  • The family’s grief and bereavement experience is quite varied and complex
  • Families are often emotionally conflicted
  • Combination of grief, relief and guilt
  • Grieving can begin early in the illness through loss of the person’s various capacities and personality changes.

  • Grief Paradox
  • “I thanked God.”
  • “I couldn’t cry.”
  • “I didn’t know what to do with myself.”
  • Long Good-bye
  • Sudden death
  • Illness with time to say goodbye
  • Prolonged illness

  • Pre-diagnosis
  • Diagnosis
  • Relief
  • Fear
  • Loss of capacities with disease progression
  • Losses for the person with Alzheimer’s
  • Role responsibilities
  • Reciprocity
  • Coherent speech
  • Losses for the caregiver
  • Communication
  • Recognition
  • Companionship
  • Personality
  • Person as known
  • Self-care
  • Privacy and freedom
  • Personhood
  • Caregivers feel a sense of abandonment

  • Praying for death
  • Most families do all that they can for their affected family member
  • The funeral that never ends
  • Ongoing grief


  • Understand the illness, have strong spiritual beliefs, and have supportive families
  • Honor the loved one’s life through a rite of passage
  • Support groups
  • Meet other people while visiting their loved one in a care facility and form friendships

Commitment to a cause

  • Support groups
  • Internet discussion sites
  • Ex-caregivers draw on their experiences to provide support and advice to others
  • Volunteer endeavors in the community
  • Provide structure to one’s schedule, satisfaction of accomplishment, and a sense of purpose
  • Develop new acquaintances and friends


  • More likely among older caregivers with medical problems or caregivers who did not receive help or support while caregiving
  • Depression of unresolved grief can lead to suicide attempts or poor health
  • Join a bereavement support group
  • Get individual counseling

  • End stage care alternatives
  • Artificial feeding, hospitalization, and hospice care
  • Three main types of artificial feeding
  • Nasogastric tube feeding
  • Percutaneous endoscopic gastrostomy
  • Total parenteral nutrition (TPN)
  • Hospitalization and aggressive treatments for a person at the end-stage of Alzheimer’s have risks
  • Hospice care provides comfort at the end of a person’s life and support for the family
  • End-of-life planning
  • Advance directives
  • Assignment of a durable power of attorney for health care
  • Caregivers grieve throughout the course of Alzheimer’s disease
  • Ways to deal with grief
  • Engage back with family and friends
  • Committing to a cause
  • Depression

Written by:
Catherine M. Harris, PhD, RNCS.
Mindy J. Kim-Miller, MD, PhD

Edited by:
Sasha Asdourian


23: Late Stages: Communication and Activities

Select the best answers from the list of choices following each question.

Click here to open Certificate of Completion
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