Dementia timeline: Journeys, delays and decisions on the pathway to an early diagnosis

Abstract

Here we present the timeline for those who reach a memory assessment service based on research conducted with 31 people living with dementia and 49 carers in one area of the UK. The study develops the findings of earlier timeline work by illuminating other stages on the journey as events and decision points. Two key stages of delay are exposed. Firstly, the period from first thinking something may be amiss to the point of first talking to someone about it. Secondly, the period from first talking to someone, to first contact with a healthcare professional (HCP). A third period emerged where delays may occur once contact with the healthcare system is made. The mean journey time from thinking that something may be amiss to beginning the formal process of diagnosis was around three years. On average there is a gap of about a year between thinking something may be amiss and first talking to a friend or family member about the problem. Further, it typically takes just under two and a half years for a person to move from thinking something may be amiss to first contact with a healthcare professional. The mean time from first contact with a healthcare professional to arrival at a memory assessment service was around 35 weeks; however, for 90% of people it was eight weeks or less. Implications for policies that aim to bring forward diagnosis are that the largest potential for achieving earlier diagnosis will be from encouraging people to contact healthcare professionals earlier.