“I got a book out of the library on understanding dementia and it said ‘Dementia is like a continual bereavement, because unlike a proper bereavement where you have the great grief when you lose the person because they die, you’ve got, you’re losing a bit of that person all the time and you’re watching it happen. So day after day you’re grieving for the bit, perhaps the next bit that’s going, or the bit that suddenly comes to you that day, so terrible grief'” (Interview 23)

This terrible, tragic loss occurs at different rates and in different ways. Here we report how people have described the symptoms they’ve observed in the person living with dementia, including general memory loss, inability to recognise familiar objects, loss of a sense of place, loss of a sense of time, loss of language and changes in behaviour.

The loss of memory which is probably the best known symptom of Alzheimer’s disease may not be obvious except when it leads to confusion and muddles. One person described how his wife became ill and became confused and forgetful about things which she previously did without any problem, like shopping, washing, dressing, cooking and eating (see ‘Suspicions – Early signs of dementia’). Later he became aware that the reason his wife seemed reluctant to get dressed was that she no longer understood what her clothes were for.

Some people described behaviour suggesting that the person with dementia had difficulty appreciating the connection between one place and another so that moving to an unfamiliar place was bewildering and journeys were full of surprises. One woman described how her mother couldn’t understand why she was unable to see her daughter’s house from her own. Another described how her mother would fail to recognise her own house and muddle it in her mind with houses she had lived in before. Other people were surprised that the sense of direction hadn’t been lost and that a person could walk apparently purposefully for many miles, sometimes to a destination much further on, and not seem to be lost. What was lost was their perception of what was an appropriate journey to make.

Many carers who were not living with the relative who had Alzheimer’s disease, described frequent telephone calls at all times of the night and day indicating that, not only had they forgotten making the previous call, they had also lost of the sense both of the time of day and of the time it took for things to happen. Carers described their exhaustion having to remain vigilant over a companion who didn’t recognise the need to go to sleep at night. John Bayley described how his wife Iris Murdoch started to get up in the middle of the night and how he had to be sure the front door was locked so that she didn’t wander off.

Difficulties with the use of language may develop slowly. Failure to keep up with spoken language may at first be mistaken for a problem with hearing. One man thought that his wife was going deaf because she repeatedly complained of being unable to understand what was being said on the television.

Another man whose wife developed Frontal Lobe Dementia while still in her 50’s told how, once he understood that there was a reason for the difficulty she was having in understanding and making conversation, he found it helpful to explain to friends and relatives what was happening and avoid awkwardness both for them and for her.

Some people who are quite able to speak can have difficulty retaining the meaning of what they have just heard. Sometimes this is shown by frequent repetitions of single words picked out of a sentence. In others the same question is asked repeatedly with no apparent recall of the answers that have already been given.

An inability to understand written language is usually associated with loss of speech and understanding. One woman described her husband’s apparent lack of concern over the mistakes he was making in spelling and in the writing of numbers but at the same time believed that he behaved in a way to suggest that he was aware that he was having trouble reading.

One carer described how difficult she found it, to not get upset when her husband became hostile towards her. Others described various examples where a person behaved in an uncharacteristically crude or otherwise inappropriate way. One carer described her concern as her husband made embarrassing overtures towards young girls.

These are some of the most common signs of dementia. There are of course many others most of which have been discussed in other summaries. (see ‘Self care’, ‘Money’, and ‘Wandering’) Changes in behaviour have also been discussed in ‘Suspicions – Early signs of dementia’, ‘Challenging Behaviour’ and ‘Living with change’.