The final stages of dementia, as exemplified in those with Alzheimer’s, mark a difficult transition period in the disease process when individuals have lost virtually all intellectual faculties and show increasing signs of emotional lability 2. Bedridden, patients with advanced dementia can no longer care for themselves. They barely communicate--using short phrases, mumbles or gestures when doing so--and lose personal awareness. Family caregivers may find the period particularly taxing. In a study published in the “British Medical Journal,” researchers at University College in London found that more than half of those looking after a relative with dementia admitted to verbally abusing them.

Mental Deterioration

According to the Alzheimer’s Association, dementia breaks down into seven, commonly observed stages 2. By the last few, patients exhibit profound impairments in short- and long-term memory--to the extent that they might not be able to piece together their own personal history or recognize familiar faces and objects. Coherent speech and language abilities decline. Moreover, personality changes begin to take hold. People with advanced dementia might experience unrelenting depression, have hallucinations (i.e., see, hear or smell things not really present) or have paranoid delusions, believing, for instance, that their spouse is carrying on an affair with a nursing home or hospice attendant. Ultimately, personal identity wastes away.

Physical Deterioration

Frontotemporal Dementia Stages

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By the very late stages of dementia, individuals lose mobility and spend most of their time either in a wheelchair or under bed rest. They cannot perform essential daily activities, such as bathing (much less sit up independently), and require ongoing, caregiver assistance. Due to the stationary existence of patients, extreme physical rigidity often sets in, along with the appearance of contractures, deformities in the elbows, wrists and fingers, that make the hand curl in on itself like a hook. More infantile “grasping” and “sucking” reflexes might also emerge. Most people with advanced dementia will have trouble eating, in some cases, forgetting to swallow food and choking. Weight loss occurs, with the skin around the lips becoming especially thin. Although dementia patients run the risk of run-of-the-mill ailments, such as heart disease and cancer, the most prevalent cause of death is asphyxiation pneumonia.

End-of-Life Care

In a study published in the “New England Journal of Medicine,” Dr. Susan Mitchell and her colleagues at Harvard Medical School suggest that final-stage dementia also represents a terminal illness, requiring palliative care designed not to treat patients, but to make them as comfortable as possible until the end of life 3. As such, whether at home, in a nursing facility or receiving hospice care, individuals who have entered a vegetative state necessitate a close monitoring for pain and for subtle behavioral changes that might indicate unmet needs. Ideally, decisions concerning end-of-life treatment should reflect the prior wishes of the patient.