This is a guest blog by Jean Tottie, Chair of tide – together in dementia everyday.
The Dementia 2020 Citizens’ Engagement Panel was set up to gather views of people with dementia and carers to feed back to the Dementia Programme Board on how much, or indeed whether, the actions in the Dementia Challenge 2020 were being achieved.
As a member of the Working Group recently set up by the Department of Health and Social Care to oversee and guide the work of the contractor responsible for setting up the panel, ORS, I was very disappointed to learn that the Panel is made up solely of people with a diagnosis of dementia. Carers have been encouraged to support the person to complete the latest survey but are not included in the panel. How can this be when unpaid carers make up 44% of the workforce in dementia care and save the state £11bn p.a.?
Carers have their own needs and the Challenge on Dementia 2020 made it explicit that :
“carers of people living with dementia being made aware of and offered the opportunity for respite, education, training, emotional and psychological support so that they feel able to cope with their caring responsibilities and to have a life alongside caring.”
If you want to support the person you care for in completing the current phase 3 survey then by all means do so as your contribution will be used but you will not be included in the Panel.