1) People’s experiences of dementia are extremely individual and constantly changing.
Everyone's experience is different, and therefore what helps or hinders is also different. As such, design for a person with dementia needs to be specific to the individual and adaptable to changes in their circumstances.
One example of this is the use of voice/audio. Examples exist where voice has been used very successfully, including use of a door sensor which triggers a recording of an individual's daughter reminding her to take her keys and lock the door. In contrast to this it has been reported that some people with dementia find disembodied voices confusing and upsetting.
2) Skills linked to passions from the past remain long into someone's journey through dementia, even at later stages.
This was observed many times during research, including people who continued to be able to play musical instruments, cook favourite meals and remember the rules to card games despite finding many other daily tasks and activities difficult.
3) Sensory stimulation can have a hugely positive impact on people with dementia.
Music is a particularly common example, and has been reported to help people's memories and offer comfort. It was also reported by a number of carers during the research phase that touch can be very valuable.
People continue to be able to engage in activities through sensory means, like smell and touch, when other aspects of the activity are no longer possible.
"One of the biggest comforts to my mum is music...she gets quite emotional listening to music because it brings back happy memories...She feels lost most of the time, so playing songs she likes brings comfort." - Daughter of a person with dementia
4) For many people with dementia, it seems that if they cannot see an item, they forget it’s there.
For people with dementia it’s often a case of ‘out of sight, out of mind’. This causes some people with dementia to leave lots of things out (for example on a desk) so that they are visible at all times. Some carers also use ‘selective visibility’ in order to make tasks easier for the person with dementia, for example screening off areas of the house so that wayfinding becomes easier, or removing certain shower products before their husband has a shower so that he doesn’t accidently use the wrong ones.
"It’s difficult for me you see because I didn’t even know I had a medical diary; if anyone asked me ‘do you have a medical diary?’ I would say no…" - Person with dementia
5) Night time difficulties are a common trigger for a person with dementia moving into care.
Night time wandering is reported to be particularly problematic, and can be the trigger for families having to consider more intensive support such as care homes. Night terrors were also an issue for some of the people who participated in the research.
"We have a mat at the top of the stairs which rings a bell when you step on it, but Harry is quite good at stepping over that. We have a childs stair gate and and I put a screen up at the top of the stairs too." - Carer of a person with dementia
6) In the early stages of dementia, remembering to do a task can be more of an issue than remembering how to do it.
People living with dementia, and their carers, have reported that remembering how to do a task (such as how to make a cup of tea) is not as much of a problem as remembering that you need to do that task in the first place. Forgetting how to do a task does appear to become a problem, but from the experiences reported it tends to happens in later stages.
7) Technology is controversial among people with dementia and their carers.
People living with dementia and their carers have expressed extremely varied views on technology. It would appear that an element of this is linked to how much the individual used technology before developing dementia. If people used technology daily before developing dementia they seem to be more open, and able, to use technology once they have dementia. However some people reported that using technology was one of the first things to become difficult with dementia. An example that was reported of times was using the television remote control.