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A new campaign by Dementia UK is calling for a fresh approach to dementia care that has specialist nurses “at the heart”.
Only Together has been launched off the back of new research carried out by the charity showing that families affected by dementia are struggling to access the support they need.
“Our report highlights the importance of working together to improve specialist support for the thousands of families living with dementia”
Through its campaign, the charity is pushing for two improvements to dementia care that it believes are key to giving patients, carers and relatives a better experience.
These are ensuring families can access information tailored to their individual needs, and having a clinically trained professional assigned as their single point of contact to prevent them “falling through the gaps between services”.
The charity said that its Admiral Nurses could be “at the heart of this approach” due to their expert skills and knowledge. As part of the new campaign, it has published two new reports.
One of the reports – called Facing it alone: experiences of dementia support – outlines findings from surveys that the charity conducted with families, general practice staff and its Admiral Nurses.
The charity found that before Covid-19, 77% of families affected by dementia were dissatisfied with the support they received from primary care services.
Meanwhile, a staggering 82% of general practice staff surveyed highlighted “time and capacity pressures” as a key challenge in supporting people affected by dementia.
Dementia UK also sought the views of 55 Admiral Nurses. Outside of the support they were able to offer, 58% said there was a lack of information given to people affected by dementia at diagnosis on the condition and its impact.
Almost half of the Admiral Nurse respondents (47%) believed there was a significant gap in dementia support services available to families.
Follow-up research carried out with carers following the outbreak of the coronavirus pandemic found that the situation facing families had got tougher in most cases.
In total, 83% of carers said they had fewer opportunities to take a break, 86% reported a decline in their own mental wellbeing, and 62% were worried about whether they could continue to care for the person with dementia at home.
There are currently 305 Admiral Nurses across England, Scotland and Wales.
In its second report – titled Only together: towards better specialist dementia support – Dementia UK said its nurses could be the single clinical point of contact for families with complex dementia, subject to their availability and capacity.
It wanted to work with local providers to “develop Admiral Nurse services in varied settings” and to improve the information resources that were available to families locally, said the charity.
Dr Hilda Hayo (pictured top), chief Admiral Nurse and chief executive of Dementia UK, said families affected by dementia were finding it even more difficult than usual to get the help and information they needed since Covid-19 emerged.
“Our Facing it alone report highlights the importance of working together to improve dementia specialist support for the thousands of families living with dementia,” she said.
“Our dementia specialist nurses can be at the heart of this approach, allowing GPs and other healthcare professionals to understand the complexities of the condition, and for families to live a future with more confidence and less fear.”