Families hit by long waits for dementia diagnosis

A recent survey conducted for the Alzheimer's Society charity has revealed that hundreds of families in the UK have faced significant delays in obtaining a dementia diagnosis for their loved ones. These long waits, sometimes stretching for months or even years, have been found to negatively impact the families' own work, finances, and mental well-being.

In response to these findings, the charity is advocating for the establishment of a national standard that would ensure individuals with dementia receive an accurate diagnosis within 18 weeks of being referred by a GP. This proposal would place dementia diagnosis on par with other major health conditions such as cancer.

One such family, Michael Fethon and his father Jim, experienced an 18-month wait from their initial GP appointment to a diagnosis. The delay took a toll on Jim, who struggled with memory loss, and on Michael, who had to quit his job to care for his father. Jim's condition gradually worsened during this period, making it increasingly difficult for him to perform everyday tasks such as driving, shopping, and even walking.

Michael believes that an earlier diagnosis could have allowed his father to start medication sooner, albeit without the ability to cure dementia, it might have helped to slow down its progression and reduce its severity.

Michelle Dyson, from the Alzheimer's Society, emphasized that a diagnosis is crucial for families to access support and plan for the future. She pointed out that too many families spend months or years waiting for answers while their loved ones' dementia progresses, comparing the situation to trying to plan a journey without knowing the destination. The charity's executive director stressed that dementia does not wait, and neither should diagnosis.

Keith and Sue Andrews, another couple surveyed, shared their experience of waiting almost a year for a diagnosis. Keith mentioned that knowing the diagnosis made life more manageable and gave them a sense of direction and confidence in their actions. Nine out of 10 families surveyed reported that a formal diagnosis had made at least one aspect of life easier, including understanding symptoms and behavior, supporting the person living with dementia, accessing information, and communicating with healthcare professionals.

The Department of Health and Social Care responded by highlighting their commitment to strengthening support for individuals affected by dementia and their families, appointing a new dementia tsar, and implementing a new action plan for unpaid carers.