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Unfortunately as with typical Alzheimer’s disease, the condition is progressive with a gradual deterioration of skills and abilities over the years following diagnosis. As the disease progresses, word finding, day-to-day memory and general cognitive functions may become affected.

What to expect - The Stages of PCA document

As mentioned, the experience of PCA differs from one person to the next, but this document attempts to describe how abilities change during the course of the condition. This document reflects the different symptoms, deficits and challenges faced by individuals diagnosed with PCA relative to more typical, memory-led presentations of Alzheimer’s disease. It was developed with people with PCA and their carers and is based on the well-established ‘7 Stages of Alzheimer’s Disease’ framework.

You can access the full Stages of PCA document here, but we recognise that information about later stages of this disease may be a sensitive topic and difficult to embrace. Below we have included information about stages 6-7(?), should you wish to access it.

Stage 6: Severe cognitive decline (Moderately severe or mid-stage Alzheimer's disease)

At this stage, cognitive changes are more global in nature, with multiple aspects of perception, memory, language, attention and decision-making abilities affected. Vision remains the most pronounced impairment, but in most individuals, there are widespread impairments that would be recognised as dementia. Individuals may:

-           Be ‘functionally blind’, requiring support in all visually-guided activities

-           Show inconsistent recollection of recent events and plans

-           Show halting, non-fluent speech with difficulty retrieving many words and the production of sound-based speech errors

-           Experience changes in sleep patterns — sleeping during the day and becoming restless at night.

-           Have increasingly frequent trouble controlling their bladder or bowels

-           Become quiet and withdrawn, sometimes sitting in a stooped over manner and appearing disengaged from the environment unless addressed directly

-           Experience behavior and personality changes, including obsessions, compulsions, suspiciousness and delusions (such as believing that their caregiver is an impostor).

-           Have difficulty communicating, as expressing and understanding verbal and visual stimuli increasingly difficult.

-           Experience continued deterioration of sensory functions, e.g. partial or complete loss of response to touch

 Stage 7: Very severe cognitive decline (Severe or late-stage Alzheimer's disease)

In the late stages, the problems experienced by people with PCA may resemble typical AD more closely than at any stage earlier in the disease process. In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases. There may discrepancies e.g. inability to smile but continued ability to laugh. At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing is impaired. Maintaining adequate nutrition, hydration and skin integrity can be challenging at this stage but problems (e.g. bedsores etc.) are not inevitable.

End of life

Although Alzheimer’s disease and other degenerative diseases are life shortening illnesses, another condition or illness (such as pneumonia) may actually cause the person’s death. Pneumonia is listed as the cause of death in up to two thirds of people with dementia. The person’s ability to cope with infections and other physical problems will be impaired due to the progression of the disease. In some people no specific cause of death is found, other than Alzheimer’s disease. Depending on the circumstances, ‘Alzheimer’s disease’ or similar may be entered on the death certificate as the sole or main cause of death, or as a contributing factor.

The later stages of PCA are particularly under-researched and as a result, poorly understood. We are currently working to expand and develop our descriptions of stages 6 and 7 to make them more informative. If you would be interested in contributing your experience and expertise to this please feel free to get in contact.

The duration of the PCA condition is also poorly understood, with some people living approximately the same length of time as individuals with typical Alzheimer’s disease (on average 10-12 years following the onset of symptoms) and others living with the condition for longer.

Home/residential care

Text/links to factsheets coming soon