A new report has labelled London’s dementia services ‘fragmented and unsatisfactory’, with GPs and social services described as ‘unreachable’ and ‘unsympathetic’.

The scathing document, commissioned by the London Health and Care Partnership and the London Dementia Clinical Network, has been published by Care City, a community interest company specialising in the improvement of health inequalities.

It gathered the views of 128 Londoners living with dementia and their family and carers, as well as professionals who support people with the disease.

And the results show there is a ‘consistent and strong sense’ that those living with dementia are abandoned, with one carer saying ‘post diagnosis is a desert, with no oasis in sight’.

A lack of support

The Living with Dementia in London report comes after the London Health and Care Partnership asked the London Clinical Dementia Network to develop an integrated care system (ICS) framework for post-diagnostic care for people living with dementia in London, of which there are an estimated 73,000.

And this report is a key stage in developing that framework.

The findings show that more than three quarters of people (77.4%) were unfamiliar with national dementia guidance, and nine out of 10 carers (93.8%) were not offered a coping strategies intervention after their loved one was diagnosed.

Despite London’s multicultural makeup, the researchers did not find one person who had been provided information in a language other than English.

Another area of concern was the increasing number of people with young-onset dementia, with the report highlighting the difficulties of raising a family, staying in employment, and managing financial dependents when living with young-onset dementia.

Addressing taboos

But the feedback also highlighted positives, such as the valuable role of day and carer centres to help with the administrative burden that comes from managing a health condition, as well as group sessions that are filled with ‘good humour’ and ‘fun’, even when discussing topics that some consider taboo, such as end-of-life care.

However, the report notes that many of these day centres are being closed down, and carer centres are no longer available in every local authority.

There are five Integrated Care Systems in London and they need to work together to address the postcode lottery that Londoners face

The evaluation found that, although national guidance recommends those diagnosed with dementia are offered monitoring appointments, these were not being routinely done.

And those living with dementia and their carers suggested annual health checks were needed, such as you might get with other health conditions.

The London Clinical Dementia Network is addressing this by piloting annual health checks at a London GP surgery, with the results due to be published in the summer.

Working together

Ben Williams, senior project lead at Care City and report author, said: “There are five Integrated Care Systems in London and they need to work together to address the postcode lottery that Londoners face.

“We look forward to presenting our findings and recommendations for developing dementia services and support in London with them soon.”

Professionals working with people living with dementia also called for improvements, saying they were being held back by the digital tools and technology they use, in particular communications and booking systems.

The evaluation ran from April to December 2022 and included interviews and focus groups.