In the UK it is estimated that 800,000 individuals are living with dementia, yet fewer than 50% of that number are ever formally diagnosed. Beliefs that dementia is part of normal ageing and that nothing can be done are believed to all contribute to the low diagnosis rate. The Department of Health has tried to raise awareness and to encourage people to come forward for investigation and treatment. Attempts have been made to counter stigma and to increase awareness of dementia and its early symptoms.
We look at some of the issues around dementia diagnosis.
Why is diagnosis important?
The benefits of a diagnosis include:
- empowerment of people
- facilitating autonomy
- allowing planning plus acting as a catalyst for discussions about Power of Attorney
- maintaining health
- driving vehicles
- advanced care planning.
Why worry about a formal diagnosis?
The goal of a diagnosis is to eliminate any other possible condition that could be creating dementia-like symptoms. For instance, it is important to make a distinction between dementia and depression. Both conditions are associated with impairments of thinking and with diminished interest in activities. Both in dementia and depression, the symptoms can be disruptive to daily activity. Moreover, depression is more common than dementia in older people. Ruling out depression is an important step in diagnosing dementia.
Likewise, distinguishing dementia from the mild normal cognitive decline of advanced age is also critical.
How is Dementia Diagnosed?
The first port of call for most people who are concerned that they or a relative may have undiagnosed dementia is the GP.
The GP will ask about the symptoms and other aspects of the patient’s health. They will do a physical examination. They will organise blood tests and establish what medication the patient is taking, as these can sometimes cause symptoms similar to dementia. The GP will also ask questions or give the patient some memory exercises to measure any problems with memory or the ability to think clearly.
Dementia can be difficult to diagnose, especially if symptoms are mild. If the GP is unsure about the diagnosis, they will refer the patient to a specialist such as a neurologist (an expert in treating conditions that affect the brain and nervous system), an elderly care physician, or a psychiatrist with experience of treating dementia. The specialist may be based in a memory clinic alongside other professionals who are experts in diagnosing, caring for and advising people with dementia and their families.
Further tests which may assist in diagnosis include brain scans such as a computerised tomography (CT) scan, or preferably a magnetic resonance imaging (MRI) scan. If there is still uncertainty about the diagnosis, further, more complex, tests may be required.
What happens after diagnosis?
NHS best practice states that, once the necessary tests have been completed, the doctor should ask the patient if they want to know their diagnosis.
They should explain what having dementia might mean for them, and should give them time to talk more about the condition and ask any questions they may have.
The doctor or a member of their team should explain to the patient and to their family:
- the type of dementia the patient has, or if it is not clear, what the plan to investigate further will entail; sometimes, despite investigations, a diagnosis may not be clear, in which case the doctors will review the patient again after a period of time to reassess
- details about symptoms and how the illness might develop
- appropriate treatments that might be offered
- care and support services in the local area
- support groups and voluntary organisations for people with dementia and their families and carers
- advocacy services
- where to find financial and legal advice
Written information about dementia should also be provided.
Linking Diagnosis to Support
Ideally carers or families will be involved in the assessment process, as outcomes are better for everyone when diagnosis and support is in place. Whilst ethical issues around patient confidentiality need to be considered, the impact of diagnosis on the family must also be recognised.
It is essential that diagnosis leads to person centred care which will include treatments for physical conditions which may also be present.
Wider networks, such as support groups, specialist organisations and local resources should be signposted to the patient and their family/carer.
In summary, diagnosis should be “more than diagnosis”.
Further information and support: