Dementia Support Line
Video, photo, and solicited diaries
Tools to support finding out about the experience of people with dementia over a period of time.
Pros and Cons
Useful for: learning about experience in ways that don't necessitate writing things down; learning about things the person with dementia might otherwise forget to mention to you.
Disadvantages and risks:
- if you ask someone to keep a diary for you, especially in such a creative way, they may feel it's something that takes a lot of their time and energy. This could raise their hopes and expectations that you will do something significant as a result of them sharing it with you. Be clear with them about why you are asking them to record their experience in this way.
Examples of user-generated video:
- Dementia Diaries: by people living with dementia, for people with dementia - and everyone else, these cover lots of topics and are grouped into key themes. These are not topics solicited by organisations. They are topics chosen and presented by people living with dementia - so reflect things that matter to them. The videos via this link are about people's experiences in relation to health and care. The website includes an option for you to ask current diarists a question if you want to find out more about their experience. Volunteers transcribe the videos so you have the option to read the person's story as well as to watch their video.
- Peter Berry's weekly video blog on You Tube. In this film, Peter describes getting a diagnosis of early-onset Alzheimer's disease at age 50, after he and his family noticed he was making bad decisions in his business. Peter describes the challenges of daily living with dementia in Suffolk and the things that improve his quality of life.
This short video shows photo diaries made by a son and his mother who was living with dementia - she had not used a camera before. Together they were able to take photographs representing the 'silent scream' of her experience with Alzheimer's disease and the experience of the son looking after the mother (with lots of humour!).
Solicited diaries
People with dementia agree to keep diaries about their experiences, thoughts and feelings, over a period of time. This can help to bring to light things which the person with dementia might not recall in other ways.
While this method may help the health and care professionals to learn about how well the person is living in between seeing their healthcare professionals, which may help to identify how effective services and care plans are working for them, keeping a diary may have other affects too - a person with dementia might be pleased to look over a few entries and discover they are doing more than they realised, which might help them to feel positive. On the other hand, if they are recording lots of negative experiences, or finding it difficult to keep making entries, it may be discouraging to notice progressive loss of abilities to do things.
In our survey, Hilary Doxford, who is living with dementia shared this tip, as something health and care organisations can pass on to empower people with dementia to be able to share their experiences with them:
'Write down your experiences as they happen, with sufficient detail to ensure you can explain what happened, why and how it made you feel. Also what you would have liked to happen. I frequently used to think 'oh I'll remember that', I've since learned that I won't remember that at all!'
