Delayed diagnosis, midiagnosis and contested diagnosis

Timely diagnosis of dementia is crucial for planning the next steps of care for the person living with dementia. However, it is not always the case that a person who has early symptoms of dementia will have a diagnosis of dementia immediately. In interviews with people who care for someone living with dementia, they describe the challenges around seeking a diagnosis that matched what they were witnessing in their daily life with the person living with dementia.

People who displayed ‘out of character’ behaviour and/or were of working age, were diagnosed with another condition initially, treated with no improvement, and then were correctly diagnosed with dementia many years later.

Some people talked about a gap of years between the start of early symptoms and a formal diagnosis of dementia. Others talked about receiving a diagnosis for an entirely different condition and being told there was no treatment available. They began to doubt the diagnosis as the person’s symptoms worsened in a short span of time. There were several people who talked about seeking second opinions with other specialists after receiving a dementia diagnosis.

Johnny talked about his partner’s changing behaviour and how he sought to find an answer.

Johnny recalls how he sought an answer about his wife’s out of character behaviour

Mary describes the challenges around trying to get an accurate diagnosis for her working age sister-in-law. Both experienced gaps of years between tests and assessments before an accurate diagnosis was made and treatment was initiated.

Mary describes how the diagnosis for a working age person can be challenging

Jackie talked about her partner’s disbelief when he received a dementia diagnosis in his 50s. She talks about their journey to reach an accurate diagnosis over a 10-year period.

Jackie talks about complications around diagnoses in a working age person

Carol spoke of the challenges to receive a dementia diagnosis for her partner who had to give up his work. He could no longer complete tasks and was finding it difficult to continue.

Carol describes the delay in receiving a diagnosis for her working age partner

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