Dementia is a cruel condition that has stolen so much from Orkney’s Sarah Kennedy.
Her father, Colin, passed away in July 2024, and her mother, Liz, continues to live with the illness, now only a shadow of her former self.
One in two of us will be affected by dementia in our lifetime, whether through caring for a loved one, developing the condition ourselves, or both.
Dementia UK states that if you love someone with dementia, you are living with it too, a reality Sarah knows all too well.
That is why the Herbert Protocol is so vital.
Named after George Herbert, a war veteran who had dementia and tragically died after going missing while searching for his childhood home, the protocol was created to aid in quickly locating missing individuals with dementia.
Sarah signed up for the Herbert Protocol, a system that ensures vital information is readily available to police if a person with dementia disappears.
Though she never had to use it, she recalls how close they came.
“Dad would sometimes live in an alternate reality, looking for ‘home’,” she explained.
“Instead of telling him, ‘but we are home, Dad,’ I would ask, ‘where is home, Dad?’ and he would say his childhood home.
“That is a dangerous situation because if given the opportunity, he might have wandered off in search of it.
“My dad could so easily have been another ‘Herbert’.”
Her mother now receives round-the-clock care at Smiddybrae House, where she gets the support she needs.
“While we never needed to use the protocol, it was reassuring to know it was there.
“Everyone who is living with dementia should know about it and how to use it.
“Anything that helps find a missing loved one quickly can only be a good thing.”
Families are urged to complete a potentially life-saving form containing crucial details about routines, habits, physical descriptions, and key contacts.
This document, kept at home, can be swiftly handed to police in an emergency, removing the stress of gathering details in a crisis.
It has been proven to help locate missing people faster and reduce the risk of harm.
Locally, a multi-agency effort ensures the dementia community is never forgotten.
Police, Age Scotland Orkney, NHS Orkney, Orkney Islands Council, and Dementia Friendly Orkney are working together to make sure support is widely available.
Gillian Coghill, NHS Orkney Alzheimer Scotland Clinical Nurse Specialist, led the local delivery of the Orkney Dementia Strategy and is urging people to get involved.
“We continue to collaborate to raise awareness of initiatives like the Herbert Protocol, which not only provides a faster response when someone goes missing but also reassures families and promotes a risk enablement approach.”
Forms are available from Age Scotland Orkney by calling 872438 or visiting their office at 46 Victoria Street, Kirkwall.
“When someone goes missing, it is an incredibly distressing time for families,” she said.
“We encourage all families affected by dementia to fill out these forms.”
Free coloured folders, donated by Dementia Friendly Orkney, are available to store the forms securely.
Orkney currently has an estimated 550 people living with dementia, with that number expected to rise to 800 by 2041.
“We must do all we can to make sure their lives are as positive as possible.”
Dementia Awareness Week, running from 2-8 June 2025, will feature events to help local businesses and community groups understand how they can better support those affected by dementia.
Those interested in becoming ‘Dementia Friendly’ can register to show their commitment to helping the community.
For more information, contact Age Scotland Orkney on 01856 872 438.
