People Affected by Dementia
Considerations when selecting methods
People with dementia and unpaid carers are in a unique position to share what it is like to live with dementia. They can provide first-hand evidence of the experience, effectiveness and impact of support and services on their quality of life and well-being.
When speaking with unpaid carers, it is important to recognise context. Each carer’s experience of dementia is different and some time should be spent understanding, if possible, the carer’s caring situation and emotional threshold at the point when evidence is being sought. This may mean that you want to seek the evaluation evidence at another time, or over two sessions if that is acceptable to the carer.
Some carers find it therapeutic to talk about their caring role; others do not find it helpful to talk but would be happy to write a response. Therefore, offer a choice. Caring can be an emotional time for some but for others it can lead to a sense of cynicism; however, most carers want to see things change for the better and this is the key motivation for them being very willing to participate in evaluation feedback. Always take into account how precious their time is.
People with Dementia
For people with dementia, communication can become increasingly difficult. The ability to use words to construct sentences and to understand and respond to speech will usually change as the person's condition progresses. Much depends on the type of dementia a person has and the rate at which it advances. Understanding more about the different barriers to communication for people with dementia can help identify techniques for overcoming those barriers or compensating for losses.
In practice, people with more advanced dementia may find it easier to talk on a one-to-one basis or may require a specialised communication aid. People with less advanced dementia often like to talk in a small, well facilitated, group (as well as one-to-one) because the conversation sparks thoughts that might not be generated when interviewed on a one-to-one basis. Both methods of engagement need to focus on the person/people involved and proceed at their pace, with breaks where needed. Discussions or individual interviews should be held in a comfortable, familiar location and by prior appointment. However, do not undervalue the importance of also collecting spontaneous ‘in the moment’ feedback from people living with dementia by filming/recording it on a phone or writing it down while it is still fresh in your own memory; otherwise that moment may be lost forever.
Creative facilitation using visual stimuli and recording activities (particularly in an established group) can provide an opportunity for all to contribute feedback. People living with dementia sometimes remember through the sense of touch and ‘hand memory’ can be an important route to engagement – this is something currently being explored by academics and being put into practice by one Trust-funded dementia friendly community, an Llantair. For example, handling a fishing net may trigger deep memories in the mind of a person who was a fisherman. Also think about other senses, such as hearing and smell, which may provoke discussion about a particular subject matter. Bear in mind, however, that the senses can also be affected by dementia. For more information, see the Life Changes Trust's Sensory Challenges Booklet. It may be appropriate to use a mix of methods or check understanding with other participants to ensure you are collecting views correctly. The key thing to remember is that traditional methods of gathering evaluation evidence may not work and you will have to think creatively and have a good understanding of dementia.
When learning from people living with more advanced dementia, it is important to understand that questions may be answered indirectly or through fragments of conversation that need to be carefully pieced together. This takes time and patience; it may be necessary to ‘talk around’ a subject and then insert the more direct question into the general conversation.
Further considerations on collecting the views of people with dementia can be found in guidance published by the Dementia Engagement and Empowerment Project and in the Core Principles for Involving People With Dementia in Research from the Scottish Dementia Working Group.
Good practice involvement
When gathering information from people with dementia, follow some simple core principles, including:
- People affected by dementia need to be valued, kept involved, and informed.
- Knowledge can come from different places, views and experiences.
- Create a safe and secure environment (physically and emotionally).
- Keep it simple - less is best.
- Be dementia aware, respecting the need for time to think, reflect, and respond.
- Keep to dementia time, with regular breaks and recaps.
When gathering views from a person with dementia, be direct and creative in the way that you interact. Always talk to the person with dementia directly and don’t communicate through a third party. Keep the information and questions short and to the point. Use creative questioning to help people get used to talking about issues. Where possible, use visual aids to help people connect with the discussion topic. Think about different ways that people can be supported to express their views.
Selected methods and techniques
Participant Diaries can be helpful when gathering the views of people with dementia and unpaid carers. Diaries encourage participants to record thoughts and feelings as and when they occur and wherever they feel most comfortable, therefore compensating for short-term memory problems.
A structured approach to discussions with people with dementia such as Emotional Touchpoints can be used to frame conversations that help to understand and find ways to enhance a person’s experience. This focuses on positive and negative emotional words to sum up what particular touchpoints feels like (e.g. entering a care home, joining in activities).
Where issues of mobility can be addressed, then ‘Walking the Patch’ can be a very effective way of finding out more about how people with dementia interact with their local environment. This involves arranging to visit local places with someone with dementia to experience their environment, understand barriers first-hand, identify already successful changes, and where further improvements can be made. A fuller description of the technique can be found in the Hampshire Toolkit for Engaging People with Dementia and Carers.
Tools including Talking Mats can be useful where communication challenges exist. This is a visual framework that uses picture symbols to help people with a communication difficulty understand and respond more effectively. More information can be found here.
- Dementia Engagement and Empowerment Project, Collecting the Views of People With Dementia, DEEP Guide
- Scottish Dementia Working Group, Core Principles for Involving People with Dementia in Research
- The University of Manchester Guide to Using diaries in research with people with dementia
- Using Emotional Touchpoints to learn about experiences, NHS Education Scotland
- From the University of the West of Scotland, My Home Life resource toolkit
- Hampshire Toolkit for Engaging People with Dementia and Carers
- Talking Mats is a tool to engage those with communication difficulties by increasing their capacity to communicate effectively about things that matter to them.