Mapping the Dementia Diagnosis Journey to Improve Self-Guided Support

​

The Purpose

The aim was to provide Alzheimer's Society with well-evidenced customer needs and experiences of carers, healthcare professionals, and people with dementia around the journey to, and through, a dementia diagnosis. 

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 Digital team decided on their digital objectives, setting measurements for success and defining audiences to research. Then they designed research activities to explore all aspects of the dementia diagnosis journey. This included looking at

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

What happened

The team carried out the research. This included:

• 44 people interviewed across England and Wales
  • recruitment included through 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 analysed
• 'Social listening' (identifying and assessing what is being said about a company, issue or brand on the Internet)
• 400 online survey responses collected; and
• 3 focus groups were conducted with Dementia Support Workers.

Seven 'personas' were created from the huge amounts of data collected.

• These are example 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 the data about people using our services this way, helps the voices and experiences of huge numbers of real people to be understood and to influence a wide variety of projects that the Alzheimer’s Society may deliver.
  • 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 user experience.

​

The data and maps were analysed in workshops that brought experts together from diverse teams from across Alzheimer's Society. Including the wide range of expertise in delivering dementia support from the outset helped to ensure that the Society would get the most value from the research.

​

The Results

The data was grouped into themes:

• Poor experience with GPs

  • GPs are the first link in the diagnosis chain, but often they often lack:
    • dementia training;
    • empathy, usually giving no explanation of the diagnosis or prognosis;
    • time (10-minute appointments);
    • awareness of the Society's dementia support services.
      
      This can mean that patients are often not taken seriously. This leads to a lack clarity about the dementia diagnosis journey, anxiety and stress.

• Diagnosis journey is complex

• 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 treatment;
  • Diagnosis is frustrating, long, embarrassing with frequent inconclusive test results;
  • Carers struggle with the high financial cost of care and feeling guilty.

• Postcode-lottery accessing dementia services

  • 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.

• Who does the Society help?

  • Many people felt the Society only helps those already diagnosed with dementia.
  • 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.
  • Care workers did not feel prepared and lacked sufficient training. 

• Improve support content for healthcare professionals

  • Specialist health care professionals all use Alzheimer's Society dementia factsheets. They say that they find the content very useful when working with patients.
  • GPs usually:
    • quickly Google to find up-to-date information and help;
    • choose content that appears first in search results (not always the Society's content);
    • are inundated with support materials from lots of charities, so it’s hard for them to stay current.

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 7 experience maps to the Society. These map the top-tasks, experience, frustrations and opportunities for people:

1. worried about their memory;
2. newly diagnosed;
3. providing primary care as a partner or spouse;
4. providing primary care as a family member;
5. carrying out professional care;
6. making dementia diagnoses;
7. 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 World Alzheimer’s Day campaign 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 points

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. 

Useful links

More information about this work.