In its submission to the National Dementia Strategy, the Alzheimer Society of Ireland referenced the need to “reclaim dementia” through the emergence of a new social and community model that focuses on abilities, possibilities and personhood and one where dementia is viewed as a social issue, owned by our community and requiring a community response.
For the Alzheimer Society, the main motivation was to develop opportunities for people with dementia and their carers to remain visible in their communities in a project that involves people with dementia as partners. Developing a dementia-friendly community requires a strategy of ensuring that the programme extend its reach to people not currently participating in creative activities. These harder-to-reach groups include those living with dementia.
Verbal’s Readings Rooms interacts with a number of dementia groups through its Older Peoples programme, working with partners such as Edenballymore Lodge, Our Lady’s Home, Mullan Mews, Enler Day Centre, Alzheimer’s Society and the Northern Trust. Some or all of the participants in these groups may have Alzheimer’s or another form of early onset dementia. A successful facilitator working with a dementia group should consider the following:
- The language used and praise given must confirm and validate people, but you must also allow for disagreement.
- If people don’t enjoy a work or ‘get’ it, they must not be allowed to feel stupid.
- The facilitator is the bridge between the art and the people, and must help them cross that bridge.
- The facilitator can help unpack a piece a little to help person reach opinions or conclusions, and even the group can do the same with the facilitator, especially with pieces that they might not fully appreciate or enjoy themselves.
- The focus is on questioning and open language, e.g. what does this suggest to you, instead of what does this remind you of?
- Within the presentation and discussion, the facilitator needs to Listen, Hear, Process and Respond. Sufficient time and space must be allowed both ways.
- An important phrase to remember is ‘being comfortable with being uncomfortable’, to recognise there are difficulties and causes for sadness, but to be able to talk about these as well as everything else as part of alarmed conversation.
- At what point does your program not able to deliver anymore to someone if their dementia advances. Who makes that decision concerning withdrawal?
In presenting a piece to a group, there are four main elements: observation, description, interpretation and connection.
Allow time for people to take in the work, to design the information being presented to them.
Start off with the basics – shapes, colours, words, materials, etc. Is everyone seeing the same thing? What differences in interpretations are there? From beginning with the surface, then build it up: the interaction of objects, presentational style, methodology, etc.
What’s going on in the piece? What does the piece suggest to people? Is it good or bad / successful or unsuccessful as a piece of art? If bad, that’s ok – discuss why people think so.
Do people personally connect with the piece? It is evocative of emotion, of a time and place or scenario. Do people have personal experiences that relate to the work. Let people tell their stories without dominating the group.
General guidelines for communication when working with dementia groups:
- Ensure you appear calm; under no time pressure;
- Where possible and appropriate identify yourself, use their name, establish eye contact;
- Speak simply and slowly (do no speak down to the person);
- Allow time – it can take people with moderate dementia five times the time to process information compared to another older person;
- Be alert to clues and prompts as some people may be reluctant to offer their thoughts unprompted;
- Do not assume someone does not understand because they have not responded immediately;
- Use short sentences, that do not carry double messages/meanings;
- Use your hands and body language to support what you want to communicate;
- Do not correct the person if you understand what they are communicating to you;
- Do not be embarrassed by displays of emotion.