People living with dementia, carers, and groups are being invited to take part in a Sussex wide project to improve end of life care for people living with dementia.
The invitation comes from former nurse and midwife Eleanor Langridge, who is leading the Sussex End of Life Care in Dementia project for NHS Sussex.
She said: “The project’s aim is to ensure more people with dementia die in their preferred place of care, with dignity, without undue pain and with their advance wishes respected.”
Although the project, which began in mid April, is Sussex wide Eleanor has established four groups across the county which reflect the diversity of the population and service provision.
Mid Sussex, Crawley and Horsham is one of those groups and are working together to look at end of life care for people with dementia.
She explained: “In preparation I have been speaking with stake holders and groups involved in social services, carers groups, residential homes and anybody else with an interest in ensuring people with dementia can exercise choice and control over their lives, particularly in relation to care at the end of their life.”
Eleanor aims to build a picture of the typical journey someone goes through from diagnosis to the end of their life and what they need at each stage to support them as well as how they might access that support.
“It is essential that we talk to people with dementia about what they think they need rather than just what professionals think they need.
“I have been talking to many different carers groups and individuals about their thoughts to find out about their experiences, concerns and ideas about how services can be improved to better meet their needs and circumstances. Their view will then inform service provision and workforce development.
“I’m very keen to hear from as many people as possible who are actually affected by dementia so I am happy to talk to anyone who is interested.”
For more information email firstname.lastname@example.org or phone 07734 247959.
More than 13,000 people are currently living with dementia in West Sussex and one in five people in the county will have a form of dementia during their lifetime.
West Sussex County Council leader Louise Goldsmith. said: “We are very aware of the increase in dementia diagnosis in the county, so we need to make sure that all care staff in West Sussex have the very best skills to enable us to provide the right support for our residents.
“Within West Sussex we are steadily developing and improving services across the county to take account of this.
“Along with NHS Sussex we have secured funding for memory assessment services to help increase the number of people who are diagnosed with dementia earlier in the development of their condition.
“As part of Age with Confidence we want to make sure that people are confident in preparing for and living well in old age.
“This includes ensuring we are at the leading edge of new ways of working to address the impacts of an ageing population.”