Care in Comics: Dementia care stories

Choice and compassion: Dementia care stories

This comic tells the stories of three people with dementia who live in a care home supporting older adults, and how those around them help maintain their independence and dignity. The examples relate to decision-making and mental capacity, and ‘wandering’ or ‘walking with purpose’.

Click here to download the digital comic (PDF)

Click here to download the mobile comic (PDF)

It is based on findings from two NIHR-funded research projects:

• ENACT: Evaluating staff training and the implementation of the Mental Capacity Act in care homes for older adults (Award ID: NIHR152800)
• FREEDEM: Reframing 'wandering' as a meaningful activity using realist synthesis and qualitative exploration (Award ID: NIHR205173)

Decision-making and mental capacity

As dementia progresses, individuals may struggle with making major life decisions, such as those involving finances, medications, and living situations, or with smaller day-to-day decisions, including what people want to wear, eat, or where they might want to spend time. In the UK, mental capacity legislation guides how to help those who cannot make their own decisions. In England and Wales, this is called the Mental Capacity Act 2005 (MCA). 

The MCA has five principles relating to capacity and decision-making. These are:

1. People should always be assumed to have the capacity to make a decision
2. People should be supported to make decisions for themselves
3. People who make decisions that may be considered unwise may still have capacity
4. When making decisions on behalf of somebody, it should be in their best interests
5. The least restrictive option should be considered first 

Whilst the MCA principles exist to support healthcare professionals, including people working in care homes, to help people to make decisions, many staff members tell us that they are unsure how to use these principles in their daily work, highlighting the need for better training. 

The ENACT project is using different research techniques to try to understand what factors might help or hinder people working in care homes from using the MCA in their day-to-day work, and how effective current training is.

These different methods include:

• Reviewing the design and delivery of current training, as well as exploring the findings of previous research, and looking at what might help or hinder staff from using the MCA.
• A national survey of what training is currently delivered in care homes about the MCA, and how useful this is, from the perspectives of managers and staff members.
• Observations in eight care homes across England and Wales to understand how people are supported to make decisions, and how the principles of the MCA are currently used in practice. Reviewing care plans, staff notes, and training plans will also help to understand how decisions are currently made.

These different pieces of work will be used within a series of co-production workshops to develop best practice guidelines that seek to overcome identified barriers and maximise solutions to using capacity legislation and supporting people living with dementia to make as many decisions as possible.

‘Wandering’ in care homes

‘Wandering’ is common among residents with dementia in care homes, but staff often see it as risky and may limit movement to ensure safety. This restriction can take away their independence, autonomy, and the benefits of walking daily. We worked with care homes to discuss the best language to use when talking about this. Some people like to use ‘wandering’, while others prefer ‘walking with purpose’ or ‘exploring the environment’.

The FREEDEM project explores how care homes manage wandering through a review of existing work in this area, and in-depth work in seven care homes across the Midlands and Northern England. Through this, we have observed daily practice, had conversations with residents, relatives and staff, and reviewed care plans. Our focus is on person-centred approaches that encourage safe wandering.

The team

• Bryony Waters-Harvey is a Research Associate working on the FREEDEM project.
• Emily Fisher is a Research Associate working on the FREEDEM project.
• Alys Wyn Griffiths is a Senior Research Fellow and Principal Investigator of the FREEDEM and ENACT projects.
• Louis Stokes is a Research Associate working on the ENACT project.
• Gabi Putnoki is the comic producer and editor, and founder of the Graphic Novel Reading Room.
• Skai Campbell is the illustrator of Care in Comics: Dementia.

Journal publications

• Stokes, L., Maden, M., Williams, N., Jacob, N., Scott, S., Shepherd, V., ... & Griffiths, A. W. (2025). Barriers and facilitators to implementation of mental capacity legislation in care homes for older adults in the United Kingdom: a mixed-methods systematic review. Age and ageing.
• Griffiths, A. W., Cunha, I., Mikhaylova-O’Connell, Y., Devi, R., Spilsbury, K., & Cherry, M. G. (2024). Exploring the impact of care home environments and culture on supporting residents to ‘wander’ safely. Aging & mental health.
• Mikhaylova-O’Connell, Y., Griffiths, A. W., Cunha, I., Devi, R., Spilsbury, K., & Cherry, M. G. (2025). “There is always a reason why someone is doing something”: The importance of life history and personhood when supporting people with dementia to “wander” in care homes. Dementia.

How to find out more

For more information about the ENACT or FREEDEM projects, please contact ENACT@sheffield.ac.uk or FREEDEM@sheffield.ac.uk.