Young Onset Dementia

Healthwatch Buckinghamshire wanted to find out people’s experiences of living with early onset dementia.  They undertook a survey which ran from 25 October 2022 to 2 January 2023.  They heard from 15 people.

Most people said that when they received the diagnosis, it was difficult or very difficult to get information about the support that might be available. Two people received no information when they were first diagnosed.

Less than half were given any specific information about young onset dementia and their type of dementia. Less than half said they had been told about making a will or power of attorney. Most people had not received information about: employment rights; benefits; pension advice; peer or family support groups; how to keep fit and mentally stimulated; or where to find age appropriate activities.

Just over half said that the information they received was age-appropriate 'to an extent'. Only one said it was personal to the individual living with young onset dementia. Only one said the information and support was received quickly enough.

Many people found it difficult to access the support they wanted later on. Half wanted someone to contact them regularly to see how they were getting on. Few attended any peer support groups. Most knew no other individuals / families living with young onset dementia. A few family members thought the person with young onset dementia would have benefitted from socialising with their peers.

The report contains seven recommendations about access to information, support, diagnosis and coding records.