Mapping the dementia diagnosis journey to improve self-guided support

Read about how Alzheimer's Society measured user experience to map out the needs of people affected by dementia, and create large-scale solutions.

The purpose

The aim was to provide well-evidenced insights into the experiences of carers, healthcare professionals and people with dementia during their dementia diagnosis journey.

Alzheimer's Society needed to have this base of understanding to be able to provide a joined-up, user-centred approach to providing the New Deal on Support (our strategy to design and enhance dementia services so that they meet people's needs).

Preparation

The team designed research activities to explore all aspects of the dementia diagnosis journey. This included:

  • What happens before, during and after diagnosis.
  • What people experience on and offline when seeking support.
  • What happens in and outside of Alzheimer's Society support services, in particular in the healthcare system.

​How the research was carried out

  • 44 people were interviewed across England and Wales. Recruitment included the use of live digital intercepts on the website to reach people with particular interests and characteristics, who might not be already known to Alzheimer's Society.
  • 1.2 million online conversations about dementia were analysed.
  • The team conducted 'social listening', identifying and assessing what is being said about a company, issue or brand online.
  • 400 online survey responses were collected; and
  • 3 focus groups were conducted with Dementia Support Workers.

What happened next

Seven 'personas' were created from the huge amounts of data collected. These are examples of typical users of Alzheimer's Society services.

They help Alzheimer's Society to understand the typical goals, needs and behaviour patterns of people using its services.

Working with data about the people using our services helps the voices and experiences of large numbers of people to be understood and to influence a wide variety of projects delivered by the Alzheimer's Society. 

Their customer experience journeys can be shown visually in ‘maps’ (of actions, thoughts and feelings) to help staff empathise and consider how they can improve the user experience.

These data and maps were analysed in workshops with experts from diverse teams from across Alzheimer's Society.

Image shows wall of notes created at a digital mapping workshop with staff.​

The results were grouped in themes:

GPs are the first link in the diagnosis chain. People sometimes had negative experiences because:

  • The GP often lacked essential training dementia training.
  • There was no display of empathy.
  • Often, there was no explanation of the diagnosis or prognosis.
  • Appointments were too brief, sometimes only 10 minutes
  • The GP lacked awareness of the Society's dementia support services.

All of this meant that patients were often not taken seriously. They'd often leave with a lack of clarity about the dementia diagnosis journey, anxiety and stress.

Most people have to find information for themselves. Almost no one was honestly told their prognosis.

Some common patterns emerged:

  • Carers and family look online for help but often don't find the best information.
  • People are often living in denial of the symptoms, delaying their own treatment.
  • Diagnosis is frustrating, long and embarrassing, with frequent inconclusive test results.
  • Carers struggle with the high financial cost of care and feel guilty.

There aren’t enough dementia specialists to help people find effective information and support. 

Typical patterns include:

  • Not everyone has access to a Memory Clinic.
  • Community support is less available in urban areas.
  • Geographical isolation can hinder access to help and support.
  • Local support is inconsistent - some agencies work together, others don’t.

Key learnings and observations

Many people did not know who Alzheimer's Society was able to help. Many felt that we only helped those already diagnosed with dementia.

This means people wait for a crisis to occur, even though we can help sooner.

Training and education is needed for healthcare professionals. All GPs and Doctors admitted to not having been formally trained to work with dementia patients, and care workers also reported not feeling prepared.

Specialist health care professionals all use Alzheimer's Society dementia factsheets to support their work. They say that they find the content very useful when working with patients.

GPs usually use Google to find up-to-date information, choosing content that appears first in search results (not always the Society's content). On and offline, they felt inundated with support materials from lots of charities, making it hard for them to keep up.

What changed for people affected by dementia

The work led to the creation of four major prototype service versions. Insight from research with people living with dementia, and carers, underpinned the concept and improvements to the prototypes.

The Customer Experience Mapping project delivered seven experience maps to Alzheimer's Society. These map the top-tasks, experiences, frustrations and opportunities for people who are:

  • worried about their memory;
  • newly diagnosed;
  • providing primary care as a partner or spouse;
  • providing primary care as a family member;
  • carrying out professional care;
  • making dementia diagnoses;
  • advising people about living with dementia.

These experience maps are shaping our projects to deliver on the New Deal on Support. Alzheimer's Society is using the research to:

  • align our campaign work to the needs of people living with dementia;
  • evidence a transformation of our digital support so that it joins-up better;
  • improve the efficiency and reach of our dementia support workers.

Learning for future research

  • Use professional recruiters to source representative service users.
  • Consider live-intercept of service users if applicable to your organisation.
  • Map the research and design to people at a relevant stage of their dementia journey.