Nearly a million people could soon get faster diagnoses, treatments and more expert help for Alzheimer’s and other forms of dementia as part of an overhaul of NHS care in England.

The NHS’s Modern Service Framework for dementia and frailty is due out this year and will be overseen by a new “dementia tsar”.

A key standard should be a target of people waiting no more than 18 weeks for a precise dementia diagnosis, said experts at the Alzheimer’s Society’s annual conference in London this week.

Baroness Louise Casey, who is carrying out another major government review into the overhaul of social care, has said she “fully supported” the 18-week target.

Experts at the Alzheimer’s Society conference called for an overhaul of dementia care similar to how cancer care was improved 30 years ago.

Under a broader rethink of the NHS under Tony Blair’s Labour government, maximum waiting times for cancer diagnosis and treatment were introduced, along with national guidelines on treatment, and a “cancer tsar” – a national cancer director – was appointed.

The aim was that everyone would receive the best available drugs and tests, rather than the postcode lottery then in place.

18 weeks from GP to diagnosis

But dementia care has long been given less priority within the NHS than most other diseases. Today, it takes an average of 3.5 years to get a confirmed diagnosis. This can delay people’s access to social support and suitable treatments.

The Alzheimer’s Society is being consulted on the forthcoming Modern Service Framework. It says people should wait no longer than 18 weeks from first seeing their GP to getting a detailed diagnosis. “We have been pushing very hard to have an 18-week target,” said Dr Richard Oakley, the group’s director of research and innovation.

However, diagnosis for dementia is more difficult than that for cancer, requiring memory tests, clinician interviews, blood tests and brain scans.

Some doctors also do not see dementia as an urgent problem, said Dr Helena Ebbs, a GP in Yorkshire who attended the conference. “There is no pressure to urgently refer them.”

She backed an 18-week target, but noted that some patients prefer not to be diagnosed at all. “If someone doesn’t acknowledge they have got a problem, it’s hard to get them to see someone.”

Treatment plan

Cancer treatment is complex, and all patients should get a personalised treatment plan, explaining what kind of surgery, radiotherapy and chemotherapy they will get and how it will affect them.

Dementia patients, by contrast, are usually discharged from a hospital with just a standard leaflet, and may or may not get any treatment.

If people have Alzheimer’s disease – the most common subtype of dementia – drugs are available that can somewhat reduce symptoms.

“There are very simple, safe treatments for the majority of people. So they should be available to all that are able to take them,” said Professor Catherine Mummery, neurologist at University College London.

Two antibody treatments for Alzheimer’s, lecanemab and donanemab, can also be accessed privately, although they are not currently available under the NHS.

However, that may change, as the decision is under review by the National Institute for Health and Care Excellence (Nice). The NHS is also in talks with the manufacturers to cut their price. Health Secretary Yvette Cooper raised hopes for a dementia drug to be available on the NHS during an interview with The i Paper this week.

Care co-ordinator

Experts are calling for families to be given a single “care co-ordinator” to help them navigate treatment and find sources of social care.

Dementia patients and their families can find it hard to know what to do next and where to get help.

“You’re basically discharged back to your GP and there’s nothing. No signposting to support, no guidance on what you should do next,” said Trevor Salomon, a conference attendee whose wife has dementia.

Cancer patients are usually given contact details for a “care co-ordinator” – a named person, usually based at their hospital, who can be called for help – something that is badly needed for dementia patients and their families, experts said.

A few groups of GP practices already employ dementia care co-ordinators, but this is far from a national scheme. “They help people navigate complexity, signpost people to social care and the voluntary sector, respond where there’s a crisis,” said Ebbs, whose practice provides such help.

Oakley added: “If you want to know what good care looks like, there should be a care plan, there should be a care [co-ordinator], there should be an early enough diagnosis, and there should be access to the symptomatic treatments.”