The pathways to diagnosis for people living with rare types of dementia are poorly understood. In Wales, a predominantly rural country, only 53% of people living with dementia have received a formal diagnosis of any form of dementia compared to 71% in England (Welsh Government, 2018). Some practitioners believe that a number of Welsh communities remain fearful of statutory services, particularly the large bilingual population who tend to access dementia services between 4.3 and 7.3 years later than monolinguists (Hedd Jones, 2018). This inevitably impacts on the numbers of people diagnosed with rarer forms of dementia and their ability to locate and negotiate appropriate pathways to access an accurate diagnosis. This study investigated the experience of people using these pathways to understand how a rare dementia diagnosis is delivered in Wales.

Ten semi-structured interviews were conducted with people living with a rare dementia or caring for a person with a rare dementia. These interviews considered the onset of symptoms, the experience of using healthcare services to receive a diagnosis and the support provided following diagnosis. The interview data was mapped across individual pathways and a thematic analysis was undertaken to explore shared perspectives.

A diagnosis of rare dementia was illustrated as a journey with five potentially recurring landmark points (initial contact, initial referrals, provider referrals, private referrals and diagnosis). Despite some identical diagnoses, no participants followed the same pathways with private healthcare often used to gain a degree of control over a pathway, if the person had the financial means to access this. Two themes were identified throughout the landmark points (involvement and dispute). Involvement illustrated the need to have a degree of control over the pathway whilst dispute acknowledged the overwhelming feeling that accessing a diagnosis often felt like a personal battle between those affected and health services, or between different aspects of health services themselves.

Whilst the experiences illustrated the unstructured pathways to a rare dementia diagnosis, these experiences will support services in Wales and countries with similar populations to consider how structured pathways can result in a timelier diagnosis and more supportive experiences.