Getting the diagnosis of dementia

When there are symptoms suggesting the onset of dementia, an accurate diagnosis is wanted from carers so that they can understand what is going on and make arrangements for care. However many of the carers interviewed felt that the diagnosis had never been formally made. Where adequate care was available, gradually progressive dementia may have been accepted as part of normal ageing. A professional diagnosis was often only sought, by some of those we talked with when they no longer felt able to carry on without some additional support.

Describes how he at least was not aware that his father had ever actually been diagnosed with Alzheimer’s disease.

Gender Male

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But in other cases, and especially when the person showing signs of dementia is young, accurate diagnosis is critical. Many carers, especially those looking after people with one of the frontotemporal dementias, allowed them to understand what they had been experiencing. Sometimes symptoms had been attributed to depression and learning the true diagnosis explained changes in behaviour that were out of character.

Describes why it was actually a help to have the diagnosis of Alzheimer’s disease confirmed.

Age at interview 62

Gender Female

Age at diagnosis 61

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Rachel felt the psychiatrist was too focused on diagnosis and…

Age at interview 51

Gender Female

Age at diagnosis 11

Hannah had been feeling increasingly distressed while on…

Age at interview 28

Gender Female

Age at diagnosis 23

Rachel felt the psychiatrist was too focused on diagnosis and…

Age at interview 51

Gender Female

Age at diagnosis 11

Diagnosing dementia in people who first experience out of character behaviour can be challenging. In this case, to have a diagnosis is helpful but, unfortunately, many people have difficulty understanding symptoms of dementia that are not about memory problems or forgetfulness.

Describes how difficult it was when people did not believe her husband really suffered from dementia.

Age at interview 52

Gender Female

Age at diagnosis 57

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Sonia’s doctor kept a close eye on her and only prescribed…

Age at interview 31

Gender Female

Age at diagnosis 17

The first step towards getting a diagnosis usually involves contacting the GP. This may not be straight forward because a person who needs to see the doctor may not wish to get any help. But a sensitive, understanding GP will usually find a way to meet with their patient and suggest further diagnostic tests. This may involve a physical examination and blood tests to rule out any other condition, as well as perhaps a short cognitive test.

Stuart takes citalopram regularly to keep his mood stable…

Age at interview 52

Gender Male

Getting a diagnosis was not always easy. Not only did some people resist going to their doctor but some were so fixed in their denial of symptoms, or of their need for attention, that their GP felt unable to proceed further. Some GPs were suspected of having little experience in dealing with people with dementia, failing to respond to the carer’s concerns. They might even have seemed to imply that in old age dementia is ‘just one of those things’ and have failed to put the carer in touch with any sources of support or advice such as the Alzheimer’s Society. Attempts to calm the anxiety of a person who may aware that they have a problem but who is terrified of admitting it (for instance by seeing them in their home) may to some extent be helpful but it is unwise to ignore the fact that questions designed to expose possible memory loss can be recognised for what they are by the person being tested.

Describes the sensitive approach to counteract his mothers denial of her memory problems.

Gender Male

Age at diagnosis 65

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Tests for dementia

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Genetic testing for dementia

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