Left to Cope Alone: The unmet support needs after a dementia diagnosis

Published June 2022

What does the report say?

Our report, Left to Cope Alone: The unmet support needs after a dementia diagnosis, shows that people need comprehensive support that encompasses medical, emotional and social wellbeing. Yet these needs are not being met in a consistent and timely way.

This failure is having a direct and negative impact on the health and quality of life of people affected by dementia. It also has a direct impact on the wider health and care system. The lack of consistent support means people are at greater risk of crisis which has a damaging impact on those living with dementia and the NHS crisis services.

Over 2,000 people affected by dementia contributed their views and experiences to this report via two separate surveys and in-depth qualitative conversations.

"Support should be ongoing with one professional to be a point of contact. We need to build relationships with those that support us and, in doing so, build trust. With trust comes openness and honesty when things are not so good."

- Person affected by dementia

What are the key recommendations from the report?

The report presents a practical framework of recommendations to national and local health systems to ensure people receive the support they want and need to live well with dementia after a diagnosis.

Main recommendation

Ensure everyone diagnosed with dementia has access to a dementia support worker or similar service, which should be commissioned as part of a ‘stepped’ model of care. These roles should include a community link worker component in areas with high ethnic minority populations.

Annual dementia review:

• Improve the quality of annual dementia reviews under the Quality and Outcome Framework (QOF) to ensure that people access a more comprehensive, quality review of their needs.
• Plan for annual Covid-19 boosters to ensure annual dementia reviews under QOF need never be paused again.
• Support primary care to return annual dementia reviews to pre-pandemic levels to ensure people have their needs reviewed and access care and support that is appropriate.
• Ensure that those most in need are offered more frequent reviews to reduce health and care crises.
• Conduct annual dementia reviews through a multidisciplinary approach and stagger throughout the year to improve quality of, and time spent on, annual dementia reviews.

Wider post-diagnostic support:

• Improve access to information and ensure an equitable offer of support from services to ensure that people do not feel they are ‘left to get on with it’ without help after a dementia diagnosis.
• Increase access to non-pharmacological interventions to ensure person-centred support is a key pillar of living well with dementia.
• Ensure psychologists, occupational therapists and other allied health professionals have time to carry out post-diagnostic support interventions so people affected by dementia can access the right support at the right time.
• Increase access to mental health and emotional support to ensure people can manage the impact of dementia on their lives.
• Ensure carers can access appropriate information and interventions to enable them to continue in their caring role while also managing their own health needs.
• Improve access to social prescribing provision to enable people to access peer support networks and maintain their social lives.
• Review provision and capacity of crisis response services to guarantee that people can access the right support immediately in a health crisis.

What is the impact when support needs go unmet?

Our research finds that when support needs go unmet, crises – such as hospitalisation, carer breakdown and health deterioration – become more common.

These crises not only have a detrimental impact on people and their families but are costly for the health and care system, both in terms of capacity and finance. 

This report and its recommendations show that providing better support in the community can reduce crises and means people affected can live well with dementia. 

You can also view the full report of the research we commissioned exploring South Asian experiences of support after diagnosis.

If you are a person affected by dementia, a commissioner of dementia services or a health and care professional working in a dementia service, we would like to hear from you about how useful this report is.

Please fill out our short survey.