Carers of people with dementia

Suspicions - early signs of dementia

Most of us, as we grow older, worry about lapses of memory, difficulty finding names, choosing a word, remembering appointments. We may worry that this is the beginning of Alzheimer's or another kind of dementia, and indeed in its early stages the changes in a person developing dementia may be so gradual that they are accepted as part of normal ageing for several years. Often there is a precipitating event which finally confirms the carer's mounting suspicions and it is only after this that previous symptoms fall into place.

Here, we record the experiences of carers who recall the months or years before a diagnosis was made when there were symptoms which hardly registered at the time. The husband of a woman later diagnosed with Picks disease describes how he failed to recognise symptoms at first.

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In elderly married couples increasing forgetfulness may have been attributed to growing old. But equally a caring daughter may kid herself that the changes she is observing are normal.

A husband who had been married many years knew something was wrong but had no idea what it was. One daughter who saw her mother relatively rarely describes concerns which mounted over several years.

For some carers what they remember noticing are changes in behaviour which for some time go unexplained. A husband describes a series of changes which he only later realised were signs of his wife's developing dementia.

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One daughter remembers her mother falling out with people as a result of muddling arrangements. John Bailey didn't believe that Iris Murdoch was developing Alzheimer's disease until she failed to realise that a lecture she had given had gone disastrously wrong.

Often explanations are invented to try to account for unexpected behaviour. For instance one carer described her initial reaction to the difficulties her elderly husband seemed to be having first with reading and then with talking.

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One of the commonest mistakes made is to confuse early Alzheimer's disease with depression. It is often not difficult to provide reasons why someone might be depressed' the death of a husband, a car crash, moving house, losing a job, or a previous history of depression. In some cases the event itself may have been part of the early presentation of the condition. For instance one man who may well have lost his job because he was in the early stages of Alzheimer's was diagnosed as suffering from depression. This mistake is particularly likely to happen when the person developing dementia is young.

In some cases there was evidence that the person developing Alzheimer's was aware that something was happening to them that they were unable to explain.

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Most carers believed that their friend or relative had no insight into their impairment, some felt the need to avoid using words like Alzheimer's or dementia. One carer expressed relief that her husband's condition had deteriorated meant that there was less risk that he might be aware of what was happening to him. Another expressed fears that for a diagnosis to be given early in the disease might result in the patient wanting to kill themselves.

Moving house or even staying somewhere unfamiliar sometimes seemed to expose difficulties which had not previously been recognised. Sometimes a holiday lead to what seemed to be the first symptoms of dementia. One carer described how she thought her husband was joking when he woke up while on holiday in Rhodes and seemed not to know who she was. A daughter whose mother was fiercely resistant to any suggestion that there was a problem describes her getting lost on the way home from Australia and ending up in Greece.

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One woman who had a strong family history of Alzheimer's disease recognised her own early dementia when she became confused while driving and later when on holiday abroad.

Another situation which may lead to recognition of a problem which may have been progressing unnoticed for some time is a visit from a family member or friend who hasn't seen the affected person for some time. A doctor concerned about his previously independent professional mother describes her panic when she realised that she no longer knew how to care for her young grandchild. A husband who had spent several years hoping that he was wrong about his wife's condition was unable to ignore symptoms apparent on a visit to their son and his wife.

In later summaries we will describe the processes undertaken to establish a diagnosis of Alzheimer's disease and the symptoms commonly found during the middle and late stages of the disease.

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Last reviewed July 2018.
Last updated March 2015.


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