Episode 16: Admiral Nurse Jules Knight - I Didn’t Sign Up For This

Jules Knight Young Onset Dementia Consultant Admiral Nurse

 

Admiral Nurses work across the UK to improve services and resources for young-onset dementia.

 

What is an Admiral Nurse? 

 

A specialist dementia nurse.

Wide and variable working with families with a diagnosis of dementia. In various settings such as memory clinics, hospices, the community, and the voluntary sector. Holistic services for family support. 

 

A helpline supporting families but we also support professionals and people with dementia themselves.

 

The uniqueness of Young Onset Dementia - is so much more difficult as they don’t meet the criteria for support. Struggles with diagnosis - stress relationship issues or work challenges. Social care needs to recognise the prevalence of Young Onset Dementia. Waiting 12 months for an assessment isn’t unusual. Often 4.5 years to get a diagnosis. It’s rare but not that rare. Getting support is the biggest challenge. Referral pathways for younger people are hard to find

 

Jules tells us that on the Young Dementia Network Website, there is a dementia checklist https://www.youngdementianetwork.org/resources/resources-for-people-affected-by-young-onset-dementia/

 

Ask for an appointment to meet separately so you can talk openly with your GP if you are concerned.

 

Connect with other young-onset families. Few services for families for children CAMHs referral not often available and young carers often missed. Schools can be helpful in organising counselling.  Peer support with other families works well.

 

Honesty with children, family, and employers is important it increases levels of support and reduces stigma but doing this can cause anxiety and fear. 

 

Admiral nurses help with practical next steps:

 

Employment and working with the Disability Act and supporting client and employer to work together where possible.

Finances

Benefits these are minefield look for a specialist local adviser. 

 

Building up a therapeutic relationship to allow families to share emotions and grief. 

 

We sometimes support the carer wishing the family to leave the relationship if necessary.

 

Admiral support can be accessed on the phone or online. Even if there isn’t an Admiral Nurse in your area, you can still access their support.

 

You can find out more here:

https://www.dementiauk.org/information-and-support/specialist-diagnosis-and-support/admiral-nurse-dementia-helpline/

 

Listen to the end for Jules' top tips including bonus tip number 4!