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.
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, 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.
Describes why it was actually a help to have the diagnosis of Alzheimer’s disease confirmed.
Describes how she felt it easier to cope with her mother’s behaviour once she knew she had Alzheimer’s disease.
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.
Describes how difficult it was when people did not believe her husband really suffered from dementia.
The first step towards getting a diagnosis usually involves contacting the GP. This may not be straightforward 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.
Describes her difficulty persuading her husband to see his doctor.
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.
In February 2009 the Department of Health launched ‘Living Well with Dementia: A National Dementia Strategy’ that was implemented in England over a 5 year period to 2014. It set 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 Living well with Dementia: National Dementia Strategy was launched in 2009 by the Department of Health 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. In 2016 the Department of Health published the ‘Dementia Atlas’, an interactive map of England, which shows standards of care by area.