Using personas to gather dementia experiences

Personas are a tool you can use to gather empathy and insights about the experiences of people with dementia. This can be used for service design.

Personas are fictitious characters developed to represent typical service users when organisations are looking to develop or improve services.  

Pros and Cons

Useful for

Rather than considering people who use your services by reference to characteristics such as ethnicity and age, personas focus on breaking down service users in terms of their needs, wants and preferences. 

They may be especially useful for

  • exploring very personal needs in a safe and less personal-seeming way. 
  • considering the needs of smaller, specific groups of service users
  • developing empathy and insights to service user experience.

Disadvantages

You need a facilitator for the process who is very familiar with the service user experience data and how to create personas.

They are not real people.

  • How accurate they are is limited by how rich a picture your service user data can provide and by the understanding of your service users of the people have who are creating them. 
  • They may be best used along with involvement, rather than instead of involvement, of people with dementia and carers. 

Cost: this may require data to be sourced through relatively expensive methods like content analysis of website activity, or customer feedback databases. It requires a significant amount of staff time, including staff trained in developing personas and a team of people to work with them, ideally connected to the service user experience data being used, and including people who have direct experience of engaging with service users. 

Time: this may be quite time-consuming.

Preparation for creating personas

Before you try to create any personas you should decide what problems you are trying to solve and what qualitative and quantitative data you have available to help you to understand the service user experience. 

The facilitator should review the data about the service users before the workshop activity to create the personas.

Other people who will be involved in creating the personas should review their service user experience data and reflect on their personal experience of engaging with target service user groups. 

How to develop personas in a workshop

Allow 2 to 4 hour per broad category of persona (for example: person with dementia still at work, person with dementia contemplating moving into a care home)

At the workshop - getting started

  • ensure you have water, tea and coffee (or whatever drinks the people prefer) close to people during the session
  • consider having biscuits and fruit available 
  • ensure you have flipchart or roll of paper you can display on a wall, post-it-notes (ideally different colours), marker pens, paper to write notes on, and a camera to take photographs.  

Introduce: the purpose of the workshop and the process you will be working through together

The Process

Stage 1: identify the ways staff typical categorise people with dementia (for example young onset dementia, advanced dementia, activity group members). This will help to surface stereotyping and unconscious bias. 

Stage 2: ask the workshop attendees to identify what people with dementia want or need to do

  • by writing each want or need as an 'I' statement on individual post-it notes ('I want to...' or 'I need to...'). Ask them to duplicate these on separate post-it notes if they think they are the same for different categories, so that they can put a post-it note under each of the categories. 
  • ask the attendees to match these to the categories of people with dementia they identified in stage 1.
  • ask the attendees to look across the categories for common themes and to now re-group the post-it notes into those themes.

Stage 3: reflect together on what you learned so far about people's wants and needs.

  • make a list of the themes now defining them in terms of groups of people ('people who want to...' 'people who need to...')
  • for each group identify their most important needs, wants and preferences.
  • create a 'skeleton' for the group - that is a very brief description of them in a sentence or a few bullet points. (for example, 'a person who wants help about how to adjust to living with dementia as they need to keep working, are too young to access their pension and still have a mortgage to pay off')
  • Try to keep the number of 'skeletons' manageable - about 4 or 5 may well be enough. If people think there are more, ask them to prioritise them so you can focus on the top 4 or 5. 

After the persona development workshop

Stage 4: Develop the 'skeletons' into personas

This may well be easier to do with just a few people rather than all the workshop attendees.

  • Give each 'skeleton' a name. 
  • Choose a quote that represents that 'skeleton's' main needs - you might like to use, or adapt, a quote from a person with dementia in your data.
  • Create short statements summarising key aspects of the persona's life, experiences, needs, wants and daily living activities (such as hobbies and routines). These should include any unmet needs, gaps or barriers they experience or perceive about your services.
  • To make them more real, add some demographic and personal data such as their age, where they live, likes and dislikes. Base these on your service user data.
  • Find a photograph of a person to represent the persona - this can bring the persona to life. Your organisation may have stock photos that you can use.

Stage 5: check the personas against your service user data and workshop findings. Get feedback from the workshop attendees to make sure they reflect the workshop discussions and the service user data. 

Stage 6: Share the personas

  • Use the personas to help you to have conversations about service user wants, needs and preferences with stakeholders - and with service users, where this can be helpful. This may help refine your understanding further. It may help people with particular roles and responsibilities to develop empathy, insights and plans to improve how services meet the identified needs, wants and preferences. 

Real-life examples in this resource that used personas

Lift the Lid: sex and intimacy in care homes: workshop development.

Mapping the Dementia Diagnosis Journey to improve self-guided support .

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