The Department of Health aims to achieve a better understanding of the experiences and needs of people living with dementia, in order to shape better policies. This is why, on its behalf, the Opinion Research Service (ORS) has opened the Dementia 2020 Engagement Panel.
This consultation focuses on people who have received the diagnosis in the past two years (since January 2015). But, those with a diagnosis of more than two years may also be able to join: everyone can take part. It is also possible for a carer to join the panel, on behalf of the person living with dementia.
The consultation will be run for two years. The information gathered will be discussed with key partners, such as NHS England and Alzheimer’s Society, and will be used to shape a better policy in order to better deliver the commitments of the Dementia 2020 Implementation Plan.
What does taking part in the panel involve?
It is possible to join the panel both online, via this link, or you can register by phone by calling 0800 311 2126. Alternatively, you can have a hard copy registration form posted out to you.
After the registration, participants will receive questionnaires (one every two or three months on average), which will take around 10 – 15 minutes to complete. The questionnaires can be sent to panellist via email or post, according to your preferences. Membership of the panel is entirely voluntary and you can withdraw at any time without the need to give any reason.
Questionnaires will generally be about people’s experiences, the diagnosis, how visits are run and how information are communicated. Also, you will be asked about the support received after having been diagnosed. In some cases, participants might be asked to take part in interviews or group discussions, to talk more in detail about their experiences.
Invitations will be sent only to sessions which are relevant to you and in your local area, and there is no obligation to take part in them.