Young Onset Dementia

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Summary of report content

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.

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General details

Local Healthwatch
Healthwatch Bucks
Publication date
Date evidence capture began
Date evidence capture finished
Key themes
Administration (records, letters, results)
Communication with patients; treatment explanation; verbal advice
Lifestyle and wellbeing; wider determinants of health
Service organisation, delivery, change and closure
Written information, guidance and publicity

Methodology and approach

Primary research method used
Survey
If an Enter and View methodology was applied, was the visit announced or unannounced?
N/A

Details of health and care services included in the report

Details of health and care services included in the report
General Practice (GP)
Services other than health or social care

Details of people who shared their views

Number of people who shared their views
15
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