Did you know we work with the Admiral Nurse Dementia Helpline to provide support to families affected by Lewy body dementia? 

We have always taken phone calls and emails from families facing a diagnosis of Lewy body dementia and wondering where to turn to for support, but a few years ago the number and complexity of calls began to grow significantly, so we realised we need a specialist support service.

Rather than setting up a new helpline from scratch, we decided to work with Dementia UK to provide funding and support for the existing Admiral Nurse Dementia Helpline. We were confident that the helpline was the right model to support people individually, but could also help us to spread awareness and understanding of LBD with other professionals.

In 2019 we funded the first ever Consultant Admiral Nurse for Lewy body dementia and appointed Rachel Thompson to the role.  Rachel has been a core part of our team ever since, and has since been joined by Rachael Webb, who is another Admiral Nurse focusing on LBD within the Dementia UK team. As well as supporting individuals through a clinical caseload, Rachel helps us to raise awareness of LBD, and to provide a link between research and practice through speaking at conferences and being a member of our Specialist Advisory Committee.

An evaluation of the first year of the project found it had made a big difference through:

• 87 referrals to the service
• 71 family carers and people living with dementia supported
• 620 clinical interventions delivered to families through telephone, video and email contacts, including triage, assessment and one-off support, as well as emotional support.
• 164 supporting best practice activities delivered – including training to 168 Admiral Nurses
• 73 liaison activities with professionals

The feedback from people living with dementia and carers has been very positive and they say the service has helped them to cope, improved their knowledge of LBD and services available, and avoided them needing to visit the GP and hospital visits. You can read more about the service and the evaluation here.

  “My Admiral Nurse has made an invaluable difference to my life as a carer. We went through the eight sections of the manual together every fortnight and I learnt so much. I was able over the two weeks between the sessions [to] put some of what I’d learnt into practice. I feel confident and satisfied now, that I can deal with my husband… I am very grateful for all the help I received. Thank you.” Carer, 75-84

“I was diagnosed with dementia with Lewy body… I wasn’t given any information or follow up services… and felt lost and hopeless. [The Admiral Nurse] has made a tremendous difference and has greatly given me an understanding of Lewy body dementia. She has answered all of my questions… given us coping mechanisms… she has been my lifesaver.” Person living with Lewy body dementia

“The Admiral Nurse made a huge difference in the way I cared for my husband. I had reached a point in his care where I didn’t know where to turn for help as my husband’s condition had reached the point where I feared for my own life. Without the Admiral Nurse I feel myself and my husband would have reached crisis point with my husband being admitted to a mental health unit.” Carer, 65-74

You can contact the helpline on 0800 888 6678 and it is available Monday to Friday 9am-9pm and Saturday and Sunday 9am-5pm. Find out more here.

This partnership is only possible thanks to the generosity of our fantastic supporters and donors, so thank you to everyone who has helped us to establish this important service.