Carers of people with dementia

Making the diagnosis

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 only sought, when the carer no longer felt able to carry on without some additional support.

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 fronto-temporal dementias, suffered agonies of uncertainty before a diagnosis allowed them to understand what they had been experiencing. Sometimes symptoms had been attributed to depression and learning the true diagnosis offered an explanation for changes in behaviour which had been causing annoyance and irritation.

People developing fronto-temporal dementia may be able to get by without people realising the extent or even the existence of their disability. This can be particularly painful for carers who may be made to feel that they are exaggerating the problem for some reason known only to themselves. In this case, to have a diagnosis is helpful but, unfortunately, many people still fail to understand the patchy nature of this group of dementias.

The first step towards getting a diagnosis usually involves contacting the GP. This may not be straight forward because the 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.  

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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 carers 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.

In February 2009 the Department of Health launched Living Well with Dementia' A National Dementia Strategy’ that was implemented over a five-year period to 2014. It sets out 17 objectives for transforming dementia services, with the aim of achieving better awareness of dementia, early diagnosis and high quality treatment at all stages of the illness and in all settings. The following objectives are quoted from that strategy:

•    Objective 2: Good-quality early diagnosis and intervention for all. All people with dementia to have access to a pathway of care that delivers' a rapid and competent specialist assessment; an accurate diagnosis, sensitively communicated to the person with dementia and their carers; and treatment, care and support provided as needed following diagnosis. The system needs to have the capacity to see all new cases of dementia in the area.
•    Objective 3: Good-quality information for those with diagnosed dementia and their carers. Providing people with dementia and their carers with good-quality information on the illness and on the services available, both at diagnosis and throughout the course of their care.
•    Objective 4: Enabling easy access to care, support and advice following diagnosis. A dementia adviser to facilitate easy access to appropriate care, support and advice for those diagnosed with dementia and their carers.

Since the National Dementia Strategy was launched in 2009 there have been many improvements in the care and support of people with dementia across the country including streamlining the assessment process. However services differ across the country and many are not yet able to access improved support.

Last reviewed March 2015.

Last updated March 2015.

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