Making contact with a DEEP group

We often get requests from organisations and researchers who want to make contact with a DEEP group. They may want to find out the views of people with dementia on a particular topic. Or to ask people if they would like to get involved in research or a new project.

Sometimes these requests are for involvement of groups who are local to the organisation or researcher. But sometime these are national projects who want to partner with DEEP as a network.

We try not to act as a ‘gatekeeper’ to these requests for contact. Each group has a right to know of opportunities, and make their own decisions about getting involved. But DEEP tries to make sure that people are working in an ethical and straightforward way with groups in the network.

We have therefore put together some questions for organisations or researchers to answer.

We encourage groups in the network to use this template to ask local organisations to engage with you in the same way.

Thank you for your request to speak to people with dementia from the DEEP network. Please fill in this form. It is designed to give DEEP groups the information they need to consider your request. We will circulate your request to the relevant DEEP groups.

  • Tell us about you

    If you are asking people for help they have the right to know about you, your organisation and the project you are involved with.

  • Your name:
  • Your email:
  • Your organisation: (Please give a brief description of your organisation, does it make a profit, how big is it etc)
  • Tell us about your project

    People with dementia will also want to know about the project and how their contribution fits into the bigger picture.

  • Please describe your project in one or two sentences
  • Who specifically do you want to be involved? e.g. people in Manchester; people who have a pet
  • Tell us how the involvement of people with dementia will happen

    It is important for people to understand how they will be involved in practice

  • When will the project take place?
  • Where will the project take place? (e.g. you will attend a group meeting; or you will telephone people; or you are inviting people to a focus group)
  • How long will people be involved for (e.g. one hour; one year)?
  • How many people with dementia do you want to involve?
  • Tell us why you want the involvement of people with dementia

  • Most of the groups in the DEEP network have their own agendas and projects they are involved with. You will need to provide a short description of why they should help you with your project.
  • Tell us what support you can offer the group and individuals

    Most of the groups in the DEEP network do not have the resources to support people with dementia to get involved in projects outside their regular work.

    It is important that you are clear about what support - practical and financial - you can give to people and groups who support you. Some groups have staff or volunteer facilitators who may be able to help - but don’t assume this is the case.

  • What kind of support is available? (e.g. you will accompany people to a meeting; you will send questions out beforehand)
  • Who will be doing the administration? (eg booking transport, reminding people with dementia that the meeting is taking place, booking venues).
  • What kind of expenses are available (also say if you are giving payments for people’s help – or a donation to the group as a whole). Will you pay expenses for carers or supporters?
  • Have you got a budget to pay for refreshments and venue hire as well as transport?
  • Tell us how you will treat people

    It is important that people with dementia and the people who support them in the groups know that you will treat them fairly, honestly and ethically.

    It is also important for people with dementia to enjoy the experience.

  • How will you make sure that people’s information is kept safe or anonymous? (It is important to be clear if you want to use people’s names, direct quotes or stories or photographs).
  • Have you got relevant ethical approval for research projects?
  • Are you or your organisation going to profit financially or otherwise?
  • Tell us how you will keep in touch

    People with dementia want to know that they have made a difference. Also, it may help the group to get funding in the future if they can show they have been active in a useful project.

  • How will you let people know what has happened because of their involvement?
  • When will you be able to report back about progress on the project?

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