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The experience of living with early onset dementia - Maeve Hully

This week we launched a report called: ‘The experience of living with early onset dementia - people with the condition and family members tell their story’.

Being diagnosed with dementia is a life-changing event. For younger people who still have financial commitments and/or children who are not yet adults, it can be even more distressing.

People who took part in this work emphasised the need for a specific service with a defined care pathway for younger people with dementia.

Particular issues include: the need for improved awareness of the signs and symptoms among the wider health and social care workforce to ensure timely diagnosis and care, and the need for personalised health and care information to be available to all people living with early onset dementia.

There is also a need for streamlined processes to support people to access immediate and appropriate support following diagnosis and for dedicated attention to be given to address the significant negative impact on the mental wellbeing resulting from this diagnosis.

It is important that the distinct needs of younger people who have dementia are recognised and considered so that a service that meets these unique needs is developed and resources made available.

I would like to thank all those who contributed to this project, particularly the service users and carers.

You can access the report at:

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charlie lynn 18-May-2018 at 19:23 hrs

Hello everyone, to be honest I don't know much about this terrible condition but it seems to be getting much more common as I know so many people who are suffering from this.