" Dementia awareness for the whole family"

About: Lewisham London Borough of Lewisham South London And Maudsley NHS Foundation Trust

(as a relative),

I have been caring for my relative for the last few years with dementia. I am also involved in the Service Users and Carers Group at South London and Maudsley. Coming from the Afro-Carribean community, I wanted to say how important it is to inform the whole of the community and all family members about dementia. The attitude sometimes is that it’s a situation that does not affect wider family and its really important that we involve people so that they understand and then they can be a support to the carer so they don’t get isolated. Mental Health just does not get talked about within some ethnic minority communities.

I know some people are starting to get direct payments to help with the care. But the information and support for people doing this is not there. Men particularly are not used to managing money at home and managing housekeeping. What could be improved here is the communication to people within my community, down to the grammar and the words used. Also when something happens it feels there is not continual support or people there for when something goes wrong or changes.

It would be great to see what others say who are in the same boat.

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