Carers of people with dementia

Deterioration, severe dementia

It is not really possible at any time to predict how much one person's dementia will progress, let alone how fast or slowly this will happen. It seemed that deterioration was more rapid in younger people, including those who had frontal lobe dementia (also called frontotemporal dementia), and more gradual in those with later onset Alzheimer's disease or multi-infarct dementia.

There were several accounts of carers noticing a sudden marked deterioration in connection with some change in circumstances. In one case, this occurred on holiday and was so distressing that it was felt to be necessary to cut the holiday short. However the same carer also describes how most of the time deterioration happened, almost unnoticed, with faculties seeming to flicker like light bulbs before they eventually disappear.

Several carers were puzzled to find that certain faculties remained apparently intact, even where there was evidence of severe mental damage. For example, physical fitness may remain in tact, so that brisk walks could still be enjoyed. Sometimes there was an unexpected ease in answering questions, doing crosswords or even mental arithmetic. But the faculty most often noticed as continuing was the ability to enjoy music.

People were surprised to find that someone who seemed unable to remember anything else, could remember the words of songs, particularly those they had sung early in their lives. One carer describing the agony of having to refuse his wife's requests to take her home was grateful that he could still make some sort of contact with her through sharing the music they had listened to together in the past.

One woman noticed that while her husband continued to appreciate music, his taste seemed to have reverted from classical music to the kind of things he used to like when he was younger- big bands, Ivor Novello, Operetta. Another was impressed by her husband's continued ability to improvise on the piano and felt that he was able to use this to express his feelings of anger and frustration.

Several people expressed the belief that continuing to drive or living in their own home had particular significance for the person who was developing dementia and that when these things had to be given up, they would give up in the battle against deterioration. A part of the battle to ward off deterioration for one carer was trying to maintain his wife's appearance. When he could no longer persuade her to get out of bed, he realised that it was no longer appropriate to go on trying.

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Severe dementia poses tremendous problems for the carer; the most mundane of daily activities like getting dressed can be a battle. One carer described his concern for the feelings that his wife might be having as she had to accept her absolute helplessness.

The late stages of dementia are distressing to consider but there is moving evidence of the devotion of devoted carers who, in their continued love and concern, watch for every glimmer of the former person both to assure themselves that they are not suffering but also for the reward of a flash of recognition.

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Last reviewed July 2018.

Last updated July 2018.



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