Only 50% of people with dementia know they have dementia

You might think that the reason 50% of people don't know they have dementia is because they have forgotten they were given the diagnosis, or because their doctor or their family decided not to tell them. But you would be wrong.

We know, because of many detailed epidemiological studies, that there are between 58,000 and 65,000 people with dementia in Scotland. However, the most recent figures show only 26,907 people with dementia on GP dementia registers - so there are between 31,000 and 38,000 undiagnosed people with dementia in Scotland.

Where are these missing people with dementia?

Some of them are in care homes. In 2006 there were 4,327 people living in care homes who had not had a diagnosis, but were believed by care home staff to have dementia. There may be at least a further 8,000 people with dementia living in care homes who are not only undiagnosed but have not been recognised as having dementia by staff.
That leaves more than 19,000 people with dementia undiagnosed and living in the community.

Why is there so much underdiagnosis?

Stigma and lack of public understanding of dementia may prevent people from seeking help
People assume that dementia is an inevitable part of ageing, and there's nothing can be done to help, so why bother getting a diagnosis
There is poor communication/co-ordination, for example between primary care and old age psychiatry services resulting in delayed diagnosis.

Why is it important to seek a diagnosis?

It could be that it's not dementia - some people may have an illness that can result in similar symptoms, such as a urinary tract infection or depression, which can be treated.
Lack of a proper diagnosis does not allow the person with dementia and their family to access dementia treatments
Whether at home or in a care home the person may otherwise be missing out on appropriate care
Without a diagnosis as early as possible, people are denied not only treatment but the chance to plan for the future - legal matters and expressing wishes about future treatment.
Getting a diagnosis means the person and his or her family can be given information to help them understand what is happening to them and what the likely course of the illness is.

The good news is that, from 2008, the Scottish Government has introduced a HEAT (Health improvement, Efficiency, Access, Treatment) target for dementia for the health service. This means that each NHS Board must achieve agreed improvements in the early diagnosis and management of patients with a dementia.

They will be expected to achieve a 33% increase in the number of patients with dementia registered by March 2011.