While dementia diagnoses are ultimately fatal, there’s a lot you can do to help your loved one live their last years in comfort and security.
End-stage dementia looks different for each person. How quickly it progresses also varies. But it’s important to understand what this stage of dementia looks like so you can help a loved one with the condition find comfort and rest in their final days.
The types of dementia differ in their early stages and signs, but in late-stage dementia, the signs and symptoms are often similar. This is especially true when it comes to end-of-life signs and care.
People with dementia can live with advanced or late-stage dementia for weeks, months, or even years. Some indications can also help caregivers and families understand when a person with dementia is in their final days.
Keep reading to learn more about the signs of end-stage dementia and how to care for a person at this time of their life.
The end stages of dementia can be unpredictable. Dementia is progressive, which means it’s ultimately fatal, but one person’s experiences will differ from another’s.
Still, certain signs signal that a person has reached advanced or end-stage dementia. These signs include:
- being unable to speak beyond single words or phrases that may not make sense
- being unable to move on one’s own
- becoming more fragile, with more frequent falls
- increasingly common infections
- difficulty eating, drinking, or swallowing
- bowel and urinary incontinence
- bedsores or ulcers from lying down or sitting still all day
- difficulty communicating when in pain or discomfort
In the final days before death, a person with end-stage dementia may:
- deteriorate quickly in cognitive function
- fade in and out of consciousness
- sleep most of the day
- breath irregularly
- become agitated or restless
- be unable to swallow
End-stage dementia is the shortest stage of this disease. Most people will live with it for 1 to 2 years.
It’s difficult to predict how long a person will have end-stage dementia before they pass. Healthcare professionals, like palliative care and hospice care professionals, may provide better insight to families and loved ones. They have the experience of knowing what the end stages of dementia can look like, and they may be able to provide a sense of timing.
Life expectancy in dementia patients
People with dementia can live many years after a diagnosis. In fact, the average person with Alzheimer’s disease lives 8 to 10 years after a diagnosis.
Other types of dementia have shorter life expectancies. People with vascular dementia may only live about 5 years after a diagnosis. This is because the risk factors that cause vascular dementia also put this group at a higher risk of stroke or heart attack.
Palliative care is specialized healthcare for people who are experiencing advanced signs of a disease and nearing the end of their lives. This type of healthcare may be needed as a person enters end-stage dementia because family members and loved ones can no longer keep up with the around-the-clock care, which comes with this advanced disease.
Palliative care professionals can also help family members learn to anticipate and help their loved one’s needs. As people with specialized experience in this type of care, they often know the signs and symptoms of discomfort or pain that may be difficult for someone else to understand.
Some families also work with a death doula to help both the person with dementia and the family prepare to say goodbye.
Do dementia patients do better at home?
Nowadays, many people with dementia are staying at home throughout their care journey. In fact, the number of dementia-related deaths in medical facilities has decreased as the number of deaths at home has increased in recent years.
People with dementia may prefer a familiar, comfortable environment. They may feel more confident and safe in the care of family and friends. This can reduce some signs of advanced dementia, like aggression and confusion.
However, home care is not possible for everyone. It requires a great deal of time investment by family and caregivers. It’s often also expensive.
When should a dementia patient be in hospice?
Once a patient is experiencing advanced symptoms, it may be time to talk with a hospice professional about what comes next. Hospice care is a way of providing end-of-life care to someone in their final days. Hospice care professionals make sure the person is comfortable and pain-free.
Doctors and healthcare professionals often recommend family begin hospice care when it’s determined a person has 6 months or less to live or if the needs of the person with dementia cannot be met by family caregivers.
Hospice care can be given at home, with a home health professional. It may also be given at a medical facility, like a hospice center or hospice department at a hospital.
Getting support as a caregiver
Providing around-the-clock care for a person with dementia can be emotionally taxing and physically exhausting. Caregivers of people with dementia often develop depression and fatigue. They frequently need care of their own.
Several organizations can connect caregivers with this support. Consider these if you’re looking for assistance:
- Alzheimer’s Association: This organization has local chapters and support groups for caregivers. You can connect with one locally or online.
- Eldercare: This government service can connect you with resources like transportation, insurance assistance, and housing assistance.
- VA Caregiver Support Programs: Caregivers of eligible Veterans can receive education, resources, and support.
People with dementia can live many years, even a decade or more, after a diagnosis. However, the final stage of dementia is an indication that a person won’t survive for longer than a few years.
Family, friends, and caregivers can learn the signs of this end-stage dementia to prepare for their loved one’s final days.
Healthcare professionals, including palliative caregivers, hospice facilities, or death doulas, can also help family and friends understand their loved one’s condition and changing signs.