Service user diaries for people with dementia

Participants: usually are volunteers. It may be possible to adapt how the diary is completed to work for people for whom reading and writing are more difficult.

Pros and cons:

Useful for: gathering insights to service user experience of services, in order to identify staff training needs, areas of practice for improvement and aspects of service needing change or development. There may be particular benefits for getting insights about integration and seamless transition between services, where the person with dementia is accessing several different services. 

Downsides and risks:

• if you ask someone to keep a diary for you, 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.

• a person not in the habit of keeping a diary, or with infrequent contact with services, may forget to record in it, or might misplace it.

• Many people with dementia may lose the ability to read or write as well as they once did, or at all, so may be excluded from using this method. If the person with dementia requires support to complete their diary, they might feel inhibited from saying some less than glowing things about the staff or service.
• Volunteers may tend to be 'convenient' sample group and may have insights and familiarity with the services that may mean their responses are not representative of service users perhaps new and unfamiliar with the service, or with different type or stage of dementia.

Cost: inexpensive to buy a diary 

Timing:  the diary is usually completed over a period of time, which may vary considerably depending on the health/care setting. If there's a lot of information in a diary, it could be quite time-consuming for staff to analyse and prepare a report and action plan from diary entries.

Preparation:

• Work with people living with dementia, and/or carers where appropriate, to design the guidance or questions, you want people keeping the diaries to focus on. This will help make sure they cover the areas you want to find out about, and are of interest to the diary-keepers too.
• Decide how many people you would like to complete a diary, and for how long. 
• Decide how to recruit people to complete the diaries. Follow our recruitment guidance and ethical considerations.
  • Safeguarding:  consider how you will respond if a diary entry causes concern about a person with dementia, a carer, staff or anyone else. Be clear about this with diary-keepers from the outset, explaining face-to-face and in writing too.  
• Meet diary-keepers and brief them about how to complete their diary and how what they record in it will be used. Provide information in writing too.
• Discuss any issues about anonymity.

How to do it:

The service user completes the diary. They submit the diary.

After the diary has been completed:

The diary is reviewed to identify issues and themes emerging from what's been recorded. Entries in the diary can often be checked against service records which may help to build a richer picture beyond what the service user with dementia has recorded.