The end stage of dementia is the most difficult stage for those suffering from the disease, and also for family members, caregivers, and healthcare professionals. Victims lose what is left of their intellectual and physical capabilities and become completely dependent on others. The model is still shifting in considering end stage dementia an end of life condition; experts are pushing this model in order to advocate for better pain and distress management for those suffering at their end.

What Happens

In the end stages of dementia, many of the symptoms are a result of the body shutting down. The patient will probably be bedridden, and uncommunicative. Other common symptoms can include

  • Difficulties communicating
  • Weight loss
  • Seizures
  • Skin infections
  • Difficulty swallowing
  • Groaning, moaning, and grunting
  • Increased sleeping
  • Incontinence
  • Loss of mobility (if not bedridden)
  • Puzzling behavior, including agitation late into the day known as “sundowning", aggressive reactions, rocking back and forth or repeating words as soothing mechanisms, hallucinations, restlessness, and excessive hand activity

Late-stage dementia sufferers may experience a range in symptoms and symptom severity, especially as the person continues to deteriorate. The Alzheimer's Society offers tips on how to help minimize discomfort and distress for someone suffering these symptoms.

Caretaking

In a recent study, researchers found end-stage dementia patients were being 'slammed around the healthcare system' by being transferred back and forth between hospitals and nursing homes in the last days of their lives. This treatment is detrimental to the health of the patient, not only causing more distress and confusion, but also increasing the number of serious health complications. For example, patients with dementia transferred from nursing homes to hospitals were two times more likely to be in an intensive care unit in the last month of their life and three times more likely to have a bedsore.

Based on these findings and additional research, experts are now advocating end-stage dementia patients be treated with an approach similar to terminally ill cancer patients. Using a palliative care, or a pain-management approach to care, in which caregivers and doctors aim to keep the patient as comfortable as possible during the end of their life, end-stage dementia patients retain a higher quality of life. More aggressive treatment, like restraining patients to place feeding tubes, or transferring them to hospitals, does not seem to either extend their lives or improve the quality of them.

Introducing The Approach

Researchers are actively examining how to introduce a palliative care approach to more end-stage dementia patients, family members, and medical professionals. Some advocate more education and awareness around palliative care approaches and what that looks like specifically for individual families. Others suggest there are simply not enough medical providers educated in palliative care approaches and this inability to meet the demand for care remains as a strong barrier for patients receiving appropriate care.

The end-stage of dementia is tough on everyone involved in the love and care of the person suffering from the disease. Experts also acknowledge family members must care for themselves during this incredibly demanding time in their lives, as they, too, must acknowledge the beginning of the end of their loved one's life.

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