Lewy Body Society is celebrating its five years of funding the UK’s first Consultant Admiral Nurse for Lewy body dementia.

Admiral Nurses offer support to people with dementia, their families and carers, and their expertise to medical professionals.

We have fully funded Rachel Thompson’s role at Dementia UK to help patients and their families navigate their specific journey with Lewy body dementia.

Rachel, who has worked in dementia care for 25 years, said: “Over the last five years, I have had the privilege to support families through some incredibly difficult challenges and learnt a lot from their experiences.

“The support of the Lewy Body Society has been incredible in continuing to shine a light on this complex condition and their pursuit to improve the experience of those affected.”

Dementia is the number one cause of death in the UK, with Lewy body dementia the second most common form of neurodegenerative dementia .

However, around half of the 100,000 diagnosed with LBD were originally told they had something else, and as many as 9,000 have the condition without knowing.

Some 470 have families requesting Rachel’s specialist Lewy body support via the Admiral Nurse Helpline, virtual clinics and a group programme for carers.

She helps people with Lewy body dementia and their families manage challenging symptoms, adverse reactions to medication, navigate the health and social care system, advises family carers on how to provide care while still caring for themselves, and gives psychological support to cope with the change in relationships and feelings of grief.

The number of referrals continues to increase each year, so much so that another Lewy body Admiral Nurse was recruited part-time in 2021, supported by Dementia UK due to the high demand.

Tara, whose mum had Lewy body dementia, said: “Our Admiral Nurse Rachel brought calm to the chaos and offered answers, suggestions and support. Having someone who really understands Lewy body dementia on your side, made it so much easier to cope.”

Lewy body dementia is frequently misunderstood by health professionals, or in some cases the diagnosis missed entirely as its symptoms can be very different to other dementias.

As Consultant Admiral Nurse for Lewy body dementia, Rachel is on a mission to put it firmly on the neurocognitive diseases radar.

She provides training and resources to fellow Admiral Nurses, geriatricians, neurologists, psychiatrists, memory services, Parkinson’s and dementia nurses, care homes, and allied health professionals across the country.

She works tirelessly to raise awareness of Lewy body dementia with government bodies and clinical groups and has developed a Community of Practice with key clinicians.

Rachel said: “While awareness of Lewy body dementia seems to be increasing, families report there is often limited understanding amongst professionals of how this condition differs from other dementias. 

“Tailored specialist support is still limited and varies from place to place. Further training and education in this complex condition should be prioritised for all health and social care professionals, to prevent avoidable delays in treatment and ensure appropriate care.”

Jacqui Cannon, CEO of Lewy Body Society, said: “We are so proud to have been funding this vital role for five years, it feels like a real milestone in the care of such a misunderstood and underdiagnosed disease.

“When my father was living with Lewy body dementia there was no one on the end of the phone with that expert medical knowledge and experience to help. We want to make sure no other Lewy body dementia families ever feel like this.”

To enquire about referral to the Lewy body Admiral Nurse service, call free on 0800 888 6678, email helpline@dementiauk.org or book an appointment.