Appreciating the experience of people affected by dementia

Why are stories so important? 

To understand experience we have to recognise the value of people's stories as qualitative data, complementing and enriching our learning from quantitative data.

Why does one person's story matter?

The answers to 'how' and 'why' things happen, can be found in people's stories.

• Many of the problems commissioners and healthcare providers are trying to find solutions for, require looking for opportunities to innovate and make change. To do that, we need to consider human experience in rich detail. 

There are many different types of dementia. They affect people in different ways. In the United Kingdom, one in six people aged over 80 will develop dementia, but over 40,000 people with dementia are younger than 65 years. Between 5% and 15% of people living with dementia receive a diagnosis of a young onset or rare dementia, such as fronto-temporal dementia or Posterior Cortical Atrophy ('PCA').

Learning from a range of stories will give insights about experience of services and quality of life. These may be used to action plan for care and change.

• We cannot assume that providing services or opportunities to give feedback in one particular way will result in similar access and experiences for everyone affected by dementia, or everyone living with dementia. For example, in contrast to the stereotype of an elderly person with memory loss, PCA may affect a person's visual perception and ability to read, more than their memory. People with PCA share their experiences in this video.

Qualitative research methods provide the tools to investigate people's experiences deeply in relation to a particular disability, culture, viewpoint, issue, perception or event. 

Overcoming bias

Bias we all have it - it's a hard-wired survival mechanism, enabling us to make sense of the world. We develop bias by absorbing what we hear and see. When we keep hearing and seeing the same single story about a group of people often enough we don't recognise it as 'fake news'. Instead, we accept the story as if fact, we rely on it to inform our decisions and we make assumptions that stereotype people.

• short video example 'The Danger of a Single Story' - a poignant and sometimes humorous TED Talk (not dementia-specific) presented by novelist Chimamanda Ngozi Adichie.

• If we only think of valuable data for health and care service-planning as a numbers game - we risk reinforcing assumptions and stereotypes, about people with dementia and their needs. We risk continuing to provide poor care with continuing unmet needs.

When we consciously seek out more, individual, stories, with open minds, we can build a richer picture of the experience of people with dementia. We give commissioners and healthcare services more chance to identify unmet needs and improve services for a wider range of people with dementia.

Here's Shelagh Robinson giving a TedEX presentation in Staffordshire about the importance, for her, of people with dementia getting a diagnosis and using their experience to inform policy, strategy and services.

Are you planning on being 'neutral' when you research the experience of people with dementia? Remember however hard we try to be objective, we all have biases. 

What do we mean by 'person with dementia' and 'carer'?

In this resource:

• 'Person with dementia'  is used to indicate the person with the condition
• 'Carer' is used to indicate family, friends or people living close by who take on the caring responsibility. It may be that they do this out of love, friendship or moral duty, so may not use the term 'carer' about themselves. We distinguish this from paid or professional care workers. 
• 'People affected by dementia' is used to include both people with dementia and carers. 

It is possible for a person to be both living with dementia, and a carer. For example, Shelagh Robinson made this Dementia Diary about living with dementia and caring for her husband. 

Useful Link

NHS England: External Report Commitment to Carers: The Carers’ Voice Network (2017) - used the stories of carers in Shropshire - including carers of people with dementia - to understand experience and made recommendations including for further integration of services.