By Jayne Connery, Founder of Care Campaign for the Vulnerable (CCFTV)
This week’s reporting surrounding NHS dementia diagnosis delays should concern every single one of us.
According to recent national coverage, some patients are now waiting years for an official dementia diagnosis. At the very moment when the UK is speaking more openly about early detection, innovation and future treatments, families are still struggling simply to access assessments and support.
Through my work supporting families across the country, I can say honestly that these delays are not just statistics on paper. Behind every waiting list is a frightened family watching somebody they love slowly change whilst feeling powerless to help.
My own mother’s diagnosis took years.
Like so many others, we knew something was wrong long before there was any formal recognition. We saw confusion replacing confidence. We saw anxiety, vulnerability and personality changes. We saw moments where my mum was no longer coping, yet trying desperately to hide it.
What made it harder was the uncertainty.
Families are often left questioning themselves. Is it ageing? Is it stress? Is it forgetfulness? Meanwhile, the person living with dementia is frequently deteriorating in plain sight whilst waiting for appointments, referrals and assessments.
At Care Campaign for the Vulnerable, I am currently supporting families waiting six to eight months simply for memory clinic appointments. Others have faced much longer waits for full assessments or follow-up support. During that time, carers are often emotionally exhausted, navigating behavioural changes, safeguarding concerns, hospital admissions and crisis situations with very little guidance.
This is why early diagnosis matters.
A diagnosis is not just a medical label. It provides access to support, care planning, financial guidance and, importantly, understanding. It allows families to make decisions whilst their loved one can still be part of those conversations. It can also prevent unnecessary deterioration and crisis-driven care.
But right now, families are reaching breaking point before they even receive answers.
What concerns me greatly is that whilst there is increasing discussion around exciting advances in dementia research and potential early detection tests, the reality on the ground feels very different for ordinary families.
Research matters enormously. New treatments and earlier intervention could transform dementia care in years to come. But innovation alone cannot fix a system where people are still waiting months and in some reported cases years, for diagnosis and support.
We must also recognise the wider impact these delays create across health and social care.
Without timely diagnosis, families are often left unsupported until behaviours escalate or a crisis occurs. Care providers are then supporting individuals whose dementia may be advanced and highly complex by the time services are fully involved. Hospitals become overwhelmed with admissions that may have been preventable with earlier intervention and structured support.
This is why dementia training and investment in specialist services must urgently improve.
Complex dementia care is one of the greatest challenges facing both health and social care sectors. Families need realistic guidance early. Care staff need greater training and understanding around distress behaviours, communication, environment and emotional support. Most importantly, carers themselves need recognition and support before they reach exhaustion.
Because behind every dementia diagnosis is usually somebody quietly carrying an enormous emotional burden.
A husband trying to protect his wife.
A daughter trying to hold down work whilst managing appointments.
A son is terrified that his father is becoming unsafe at home. And too often, they are doing it alone.
Families should not have to fight this hard to be heard.
If we are serious about improving dementia care in this country, then we must stop treating diagnosis as a future ambition and start recognising it as an urgent present-day priority.
Faster diagnostic pathways, properly funded memory services, earlier intervention and better complex dementia training are no longer optional. They are essential.
Families cannot wait three and a half years for answers whilst the person they love declines in front of them.
