Table 1.
Details on consulted groups, participants and consultations
| Groups and participants | Consultations | ||||||
|---|---|---|---|---|---|---|---|
| Group location | Setting | Group characteristics | Participant characteristicsa | Moderator(s) | Duration | People with dementia or mixed group | Support for people with dementia |
| Alzheimer Europe | Hotel meeting facility in Brussels | Members of the European Working Group of People with dementiabParticipants were familiar with each other, except 1 new member | 9 people with dementiaAge: 56‐71M/F: 3/6 | Psychologist/PhDSocial Worker/PhDBoth familiar to the group/participants | 1¼ h | People with dementia | 3 family caregivers were present to support 3 group membersFlip chart record of the discussion and printed handouts |
| UK | Local Alzheimer’s Society offices | Members of the SHINDIG groupcParticipants were familiar with each other | 4 people with dementiaAge: 1: 61, 3 > 65M/F: 3/13 caregivers (all spouses) | Lead researcherSenior clinical nursePhD studentAll familiar to the group/participants | 1½ h | Mixed group of people with dementia and family caregivers | Flip chart record of the discussion |
| Italy | Local Alzheimer’s Society offices | Members of a cognitive stimulation groupParticipants were familiar with each other | 7 people with dementiaAge: 72‐79 yM/F: 3/4 | 3 psychologists2 other professionalsAll familiar to the group/participants | 1 h | People with dementia | None |
| Denmark | Memory clinic | Members of a group support programme for people with dementiaParticipants were familiar with each other | 5 people with dementiaAge: 49‐81 yM/F: 3/2 | 1 PsychologistFamiliar to the group/participants | 1 h | People with dementia | Framework of the consultation presented on PowerPoint slidesFlip chart record of the discussion |
All participants were diagnosed with dementia and were living with dementia at a mild‐moderate stage.
The level of details differs due to the nature of the different group settings.
The EWGPWD is comprised of people with dementia. They work to ensure that the activities, projects and meetings of Alzheimer Europe duly reflect the priorities and views of people with dementia. The group operates independently, with its own Board and agenda of activities. Nationalities of members: Germany, Czech Republic, England, Scotland, Ireland, Jersey, Norway, Finland and Slovenia.
The SHINDIG group is a citywide forum which provides opportunities for those living with dementia to give views and opinions on local services and developments.