Families living with dementia urged to sign up to the Herbert Protocol

Dementia has robbed Orkney’s Sarah Kennedy of both her parents. 

Her Dad, Colin, passed away in July 2024 – and her Mum, Liz, lives on with the condition – a shell of her former self. 

One in two of us will be impacted by dementia in our lifetime - whether by caring for someone with the condition, developing it ourselves, or both. Dementia UK says if you love someone living with dementia, you’re living with it too and Sarah says that is true for anyone caring for a loved one with the condition. 

That’s why the Herbert Protocol remains so important. 

The Herbert Protocol is named after a man called George Herbert - a war veteran who developed dementia. He went missing and sadly died when searching for his childhood home. 

The Protocol was developed by Mr Herbert’s family to allow immediate sharing of vital information with the police if a person with dementia goes missing. 

Sarah signed up to the Herbert Protocol which helps to locate people with dementia if they are missing.  Although she says, she didn't have cause to use the protocol – it came very close. 

“Dad would find himself living in an alternate reality – looking for ‘home’ - instead of me saying to him ‘but we are home Dad’, I would say, ‘where is home Dad?’ He would say ‘his childhood home’. That’s a dangerous scenario in case there was an opportunity for him to go off trying to find his ‘home’. My Dad could so easily have been another ‘Herbert’. 

“Mum is now being looked after 24/7 in the fabulous Smiddybrae House where she can receive the level of care that she now requires. 

“Whilst we didn't need to use the Protocol, it was a comfort having it there and everyone living with dementia should be aware of the protocol and how to use it. Anything that can help find a loved one if they go missing can only be a good thing.” 

Families are being encouraged to fill in what could be a life-saving form that is kept at home containing important details regarding known routines, habits as well as descriptions of your friend/relative and details of their and others involved with their care. It can be handed to Police from the outset to alleviate gathering information during what can be a very stressful time. This protocol has been proven to help find people who go missing faster, reducing the risk of harm. 

A multi-agency approach has been taken locally in a bid to ensure the dementia community are “never forgotten”. 

Working together, the Police, Age Scotland Orkney, NHS Orkney, Orkney Islands Council and Dementia Friendly Orkney want to ensure people affected by dementia are aware of the support that is out there. 

Gillian Coghill, NHS Orkney Alzheimer Scotland Clinical Nurse Specialist, led on the local delivery of the Orkney Dementia Strategy, approved by Orkney Health and Care Integration Joint Board, and is encouraging everyone, particularly those affected by dementia in any way, to get involved. 

She said: “We continue to collaborate to raise awareness of a number of initiatives, such as the Herbert Protocol, which not only provides a more timely response if someone gets lost, but also provides reassurance for families and supports a risk enablement approach. Forms are available locally from Age Scotland Orkney, either by calling 872438 or from their office in Victoria Street. 

“When anyone goes missing it is a very distressing and worrying time for the families concerned – we would encourage all families who are affected by dementia to fill in these forms. Free coloured folders have been donated by Dementia Friendly Orkney to support identifiable storage. These can be accessed through Age Scotland Orkney. We would ask families to support people to keep the forms up to date. 

“In Orkney there are around 550 people currently estimated to be living with dementia. This is projected to reach 800 by 2041. We must do all we can to ensure all their life experiences are as positive as possible.” 

We are also working alongside people with lived experience to launch a programme of events in Dementia Awareness Week 2-8 June 2025. The events planned will encourage local businesses and community groups to understand how they can help and to register as being "Dementia Friendly" for people living with or affected by dementia in Orkney. 

Age Scotland Orkney is based at 46 Victoria Street, Kirkwall, telephone 01856 872 438.