Sussex has the highest prevalence of dementia in the country, with more than 26,500 people living with dementia.
Access to the right information, advice and support at the right time are crucial for people living with dementia, their relatives, carers and friends to be able to manage their condition.
The Sussex Integrated Dementia and End of Life Care Guidance has been designed to help you understand what support to expect, what is possible and what support to ask for at each phase.
We hope people living with dementia, their relatives, carers and friends will use this guidance to get the help they need, when they need it and by doing so are enabled to live, and to die, well.
The guidance has resulted from a consultation with more than 1,800 people across Sussex. This includes people whose lives are directly affected by dementia as well as health and social care practitioners.
There are six phases of the condition:
- Recognising there is a problem (awareness)
- Discovering that the condition is dementia (assessment, diagnosis and involving the person with dementia in planning for their future care where appropriate)
- Living well with dementia (maximising function and capacity to enhance wellbeing and planning for future care including end of life)
- Getting the right help at the right time (accessing appropriate and timely support. Reviewing advance care plans)
- Nearing the end of life, including the last days of life (palliative care and ensuring advance care plans are reviewed and respected)
- Care after death for relatives, carers and significant others (supporting to maintain their wellbeing)