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End stage dementia is the last part of the journey that somebody with dementia has to make. While each person's experience is different, by this stage of the illness the person is likely to exhibit severe memory disturbances and the physical side of the disease becomes more obvious.

The length of time the person may experience in the end stage of the illness can still be many years - it is impossible to determine how long.

Particular symptoms include:

  • severe fragmented memory
  • limited verbal skills
  • orientation only to self
  • inability to make judgements
  • inability to problem solve
  • no independent function
  • a need for help with personal care and continence management.

Later still, the person may enter a stage of total dependence and inactivity where he/she may have difficulty eating and walking, may fail to recognise relatives, friends and familiar objects, have difficulty understanding and interpreting events, may suffer bladder and bowel incontinence, and be confined to a wheelchair or bed. The latter can make the person especially vulnerable to infections such as pneumonia, which can be fatal.

People with dementia differ in the speed with which their abilities deteriorate. While dementia is a terminal illness, death often occurs as a result of complications arising from the effects of the disease rather than the disease itself. In addition, many older people with dementia have other conditions that tend to increase in incidence with age, such as heart disease, diabetes and cancer. These conditions can also contribute to the person's decline. 

Towards the end of the disease, treatment focuses on relieving symptoms rather than curing the problem but this can be challenging for those caring for someone who is increasingly unable to report or describe their pain or discomfort.

As a long-term carer, you are likely to have spent years developing vital knowledge and caring strategies to help you meet the unique needs of the person you care for. Your awareness and sensitivity to the, often, subtle changes in your relative's behaviour, facial expression and body language that can indicate pain or distress make you ideally placed to help care home staff provide appropriate care.

Carers also carry knowledge about the person with dementia's past beliefs, wishes and preferences about specific types of medical treatments or interventions.

If you would like more advice, information or support on caring for someone with dementia at the end stage, please contact the 24 hour freephone Dementia Helpline on 0808 808 3000.

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Three women read dementia information and reports