Refer Now
(800) 229-8183   available 24/7 Donate Now
adult daughter hugging elderly mother
Blog: Stories and Insight

End-Stage Dementia: What is It and When is Hospice Called In?

Corinne became her sixty-eight-year-old husband’s 24-hour caregiver when he developed dementia.  As Jonathan entered the end stages of Alzheimer’s disease, she realized she needed help.

Her husband couldn’t get out of bed or sit up unassisted, and Corinne was having trouble giving him baths and changing the bed linens. She had questions about providing proper care. Sometimes he didn’t want to eat. Was that because he was confused or not hungry?

All Corinne hoped was that Jonathan was comfortable, happy, and safe. So, when a friend suggested she call in hospice care, she decided it was the right decision.

What is End-Stage Dementia and How Long Does It Last?

Sometimes called “late-stage dementia,” end-stage dementia is the stage in which dementia symptoms become severe to the point where a patient requires help with everyday activities. The person may also have symptoms that indicate that they are near the end of life.

An estimated 1.8 million people in the United States are in the final stages of dementing illnesses, and each person experiences the illness in their own individual way.  However, end-stage dementia may last from one to three years.

According to the Alzheimer’s Association, “Alzheimer’s disease is a growing public health crisis in New Jersey.” They go on to say:

  • “190,000 people aged 65 and older are living with Alzheimer’s in New Jersey.
  • 7% of people aged 45 and older have subjective cognitive decline.
  • 272,000 family caregivers bear the burden of the disease in New Jersey.”

As the disease advances, your loved one’s abilities become severely limited and their needs increase. Typically, they:

  • have trouble eating and swallowing
  • need help sitting up
  • need help walking, eventually become bedbound
  • need help with most or all daily activities, including bathing and self-care
  • become vulnerable to infections, especially pneumonia
  • become unable to speak or be understood
  • loss of facial expressions, including the ability to smile
  • have difficulty transferring to/from bed, chair, toilet, etc.
  • become incontinent
  • become unable to recognize family and friends

As every patient is different, and it’s difficult to accurately, predict how long end-stage dementia will last, planning ahead can help alleviate potential issues down the road.

Avoid confusion about your loved one’s wishes by making healthcare decisions early and putting them in writing. You will have peace of mind knowing these wishes and you will know the answers when it’s time to make difficult decisions. Resources for having conversations about your healthcare wishes >>

End-Stage Dementia: When is Hospice Called in?

home care worker talking with patientCalling hospice is getting help, not giving up. The sooner you call, the sooner you will gain access to the comfort, support, and quality-of-life hospice care provides.

Hospice care services focuses on caring, not curing. Hospice care team members help manage pain, anxiety and other symptoms, focusing on your loved one’s physical and emotional comfort. Hospice also supports the family in its caregiving and grief-related needs.

Hospice care is provided by the hospice’s doctors, nurses, home health aides, social workers, spiritual support counselors, and trained volunteers under the direction of the hospice physician and in conjunction with the attending physician.

The role of the hospice care team is to support the family caregiver through this type of grief, and the other stresses of tending to a loved one with end-stage dementia. The hospice care team in South Jersey ensures both patients and families maintain their comfort and dignity, while supporting their best possible quality of life.

To qualify, an end-stage dementia patient’s life expectancy must be six months or less, as determined by a physician. However, don’t let any questions you have regarding this qualification, or hospice eligibility criteria, prevent you from calling for hospice services.

Learn More about Hospice Care in South Jersey


If you or a loved one has dementia or another life-limiting illness in South Jersey,
please contact Samaritan to learn how we can help. Call us 24/7 at (800) 229-8183.