Carers of people with dementia

Looking for information

Most carers had known very little about dementia before the diagnosis. Those who had heard of Alzheimer's disease, or dementia, usually thought that it was simply becoming forgetful or vague in old age. Few were aware that dementia could strike in middle age and some reflected that it might be better not to know in advance. Even those who had some clinical training in dementia, including a doctor and a nurse, said that they had not understood the impact of the disease.

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Sometimes people's most pressing questions about the disease (how will it progress?) cannot be answered with any certainty. This can add to the carer's feelings of confusion and isolation. However, almost everyone said that they had also needed practical information and could not understand why no-one had told them what they needed to know at an early stage.

Many were confused about the divisions between statutory authorities and the roles and responsibilities of staff and did not know where to turn for advice. Carers suggested that an ideal package of information would include contact details for the Alzheimer's Society (which supports people with all types of dementia, not just Alzheimer's disease), local information about support groups, practical details about social services, financial benefits and allowances, respite care and medical information about the possible progress of the disease.

People who had later stumbled across the information and support provided by the Alzheimer's Society were impressed, but often amazed that no-one had told them about it earlier. The Society's factsheets, leaflets, booklets and outreach workers were widely praised. (Also see 'Sources of support').

Many people described being left up in the air after the diagnosis. Those who had found support groups, or other ways (such as the internet, books, newsletters and articles) of finding out about the experiences of other carers talked about how helpful it was to find out how others had coped with problems.

One man had seen his mother-in-law develop Alzheimer's disease several years before his wife was diagnosed. Because the progression was very similar this helped him to cope. A woman whose husband was diagnosed with an early onset dementia had a friend whose husband had been diagnosed 20 years before. The friend was very helpful in steering them through what to expect.

On the other hand, more often those who had known someone else with dementia said that the personalities, or the progress of the disease was so different that their prior knowledge was little help. A doctor said that he had not recognised the early signs in his mother, even though he had studied neurology and his grandmother had also had dementia.

Information about dementia could be upsetting but nearly everyone indicated that it was best to be forewarned. Some said that they would have handled things differently if they had known more about the nature of the disease and regretted being short tempered when they did not realise the effect of the illness. A man looking after his wife described how information needs change: initially he wanted information about dementia, but then sought information about how to be a carer. He says that he wishes he had tapped into the sources of support earlier.

Last reviewed March 2015.

Last updated March 2015.

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