Signs of the later stages of dementia
When someone is in the very last stages of dementia, they are close to death. Dementia is the word for “neurodegeneration” which is when the brain and nerve cells are progressively damaged by disease.
The recent increase in awareness of dementia has been focussed on early stages when the person is still out and about, but they may be starting to have difficulties mental processes such as recalling the words for things, managing transactions with money, recognising people and places, or working familiar household appliances. They are living with dementia, not dying from it.
In some rarer forms of dementia the early signs of damage may show as difficulties with perception, where the person starts to wonder if there is something wrong with their eyes, but the eyes are fine. It’s the processing of what they see that is wrong. There also may be difficulties with mobility where walking becomes difficult. They might experience problems with “proprioception”, where they go to sit in a chair and put their bottom in the wrong place and fall on the floor or they start to put their cup down in mid-air beside the table rather than on it.
What happens in the later stages?
“Dying in hospital is not what most people would prefer, as it is a busy clinical setting where the focus is on keeping alive those people who have a prospect of survival.”
Physical movements become very problematic for anyone in the very late stages of dementia. The person is very likely to fall over for several reasons to do with muscle weakness, slow reaction time, visual processing defects, distractibility, and problems with coordination. It is a common pathway for the person to fall, break a limb, and to die of complications of the surgery which include shock and delirium. If they survive the treatment, they may have residual disability that means they are unable to live independently again. Therefore, many people in the later stages of dementia are cared for in residential settings. The next phase of life could take place at home, but if their condition deteriorates there, their next move is most likely to a hospital bed via an ambulance and a very long and disturbing period in the emergency department corridor. Dying in hospital is not what most people would prefer, as it is a busy clinical setting where the focus is on keeping alive those people who have a prospect of survival.
As time passes in dementia, the neurodegeneration continues. Much can be done that will improve the person’s condition to begin with in the care setting, with company and care that is a contrast to what may have been a solitary existence at home. Further problems continue to emerge, even so. Difficulties with eating arise, which can be because the person can’t handle the spoon or cup any more, but it is also common in later stages for the person to have problems with swallowing. Swallowing requires complex coordination to close over the windpipe as solids or liquids go down towards the stomach. Problems here are common, leading to choking, coughing, and subsequent chest infections as things repeatedly go down the wrong way.
As the person is becoming frail and losing weight their immune system is compromised so they can’t resist infection and it might be a lung infection that is the final cause of death. Pneumonia in the olden days was called “the old man’s friend” because it carried off bedridden patients who had a poor quality of life. There may be a dilemma about whether to offer antibiotics, which some might think only delays the inevitable and extends the suffering of the patient.
The person has no appetite and spends most of their time lying down in bed, exhausted and sleeping peacefully. Careful nursing can manage pain, prevent pressure sores and contractions from limbs that are not being used, and keep a nice calm and dignified environment. This is what the end of life looks like in dementia when it is well managed. Family members who’ve not witnessed the end of life before might feel that the person should be in hospital, or on a drip or nasogastric feeding but that is not what most people would ask for themselves, if they could still speak. Therefore it’s a good idea to have those conversations with family and friends in the midst of life, to save them from dilemmas at the end. The joking phrase “just shoot me” is not helpful, because that avoids the question. Try to be kind to those who will care for you in future by answering the question properly now.
The final stage of dementia is death, which is why it is listed as the commonest cause of death in the UK now. I think this definition needs to be examined, because of the vagueness of the definition of the term ‘dementia’ which is now used to cover a multitude of conditions including some that are not progressive, so quite different in progress and outcome. The neurodegeneration at the end of life which is part of the syndrome of frailty as part of normal end of life ageing should be contrasted with the brain diseases that affect the lives of people much earlier in life and is not “normal”. People diagnosed with dementia in mid-life should not think that they’ve been given a death sentence, even if those who die with dementia in old age have gone down that road.
