Last Updated: September 2014 by Laurence Thraves.
Diagnosis is important for both people with dementia and the health and social care system. Diagnosis allows people with dementia to access services and, in some cases, medication. It allows time to make critical decisions about the care and support they receive while they have capacity to do so (APPG, 2012). For the health and social care system, it helps planning, avoidance of future admissions and improved clinical management (Department of Health, 2009).
However, access to timely diagnosis of dementia remains variable depending on where you live. In some areas, less than 40 per cent of people with dementia have a diagnosis while, in others, more than 75 per cent of people with dementia are diagnosed (Alzheimer's Society, 2014). Provision of post-diagnosis support is patchy at best. To improve this situation, Alzheimer's Society campaigns for the performance of all areas of England, Wales and Northern Ireland to be brought up to the level of the best with more rapid diagnosis and minimum standards for post-diagnosis support.
Alzheimer's Society is committed to supporting more people with dementia to have a diagnosis and appropriate post-diagnosis support. We provide over 2,000 local services in England, Wales and Northern Ireland, including Dementia Advisers who provide high-quality information and advice, and we support people via universal services such as our information resources, helpline, website, online forums and campaigns.
2. What Alzheimer's Society calls for:
- Improved diagnosis. Improving dementia diagnosis rates has been acknowledged as an important issue in England (Department of Health, 2012a), Wales (Welsh Assembly Government, 2011) and Northern Ireland(DHSSPS, 2011) and commitments have been made in government national strategies. However, much more work still needs to increase the numbers of people with dementia who have a diagnosis and get the support they need. The Alzheimer's Society will campaign:
- In England for use of existing policy measures, such as financial incentives, to achieve the government's ambition of 66 per cent diagnosis by 2015.
- In Northern Ireland, where diagnosis rates are higher, for additional funding to standardise diagnostic services and reduce disparities.
- In Wales, where diagnosis rates are among the worst in the UK, for proactive leadership from the Welsh government.
- Provision of culturally appropriate services. Black, Asian and minority ethnic communities are more likely to be diagnosed late and less likely to be diagnosed (Moriarty et al, 2011) or use dementia services (SCIE). Alzheimer's Society campaigns for the provision of culturally appropriate services and works to raise awareness of dementia among Black, Asian and minority ethnic communities, for instance through its Connected Communities programme.
- Redesigned systems. Raising awareness among health and social care professionals and developing the workforce are not enough to increase diagnosis rates. Real change requires the design of a diagnostic pathway that takes people with dementia from their first contact with a health professional to the support they receive following diagnosis. This requires investment, joint working across health and social care and leadership at both local and national levels.
- Increased investment in memory clinics. Investment has been made in memory clinics in England, Scotland and Northern Ireland. In England, the Prime Minister's Dementia Challenge committed to establishing memory clinics in all parts of the country (Department of Health, 2012b). However, increased emphasis on diagnosing dementia will place additional pressures on memory clinics. Appropriate investment must be made at the outset by commissioners to ensure resulting improvements in access to diagnosis services are sustainable.
- End to the postcode lottery. There is a huge variation in waiting times from GP referral to initial appointment and diagnosis. In England, people with dementia wait for between one and 25 weeks from referral to initial appointment and between one and 21 weeks from initial appointment to diagnosis (Royal College of Psychiatrists, 2013a). In Wales, nearly one third of clinics do not meet the national standard of four to six weeks between the receipt of referral and first appointment (Public Health Wales, 2014). In Northern Ireland, a review of the effectiveness of memory services by the regulator will not commence until December 2014.
- Diagnosis in no more than 12 weeks. A prompt, efficient diagnostic process of no longer than 12 weeks should be available to all to avoid unnecessary stress and delay in access to medical treatment. In England, the Secretary of State for Health made a public commitment in 2014 that waiting times for initial appointments should be no longer than six weeks. However, this commitment does not extend to putting a cap on the overall period of diagnosis. Alzheimer's Society will campaign for a standard time to be set for the diagnostic process.
- Improved monitoring of memory services. Currently, there is no national database of memory services and only 93 clinics have joined the voluntary Memory Services National Accreditation Programme (MSNAP) in England and Wales that provides independent assurance of the diagnostic process. A service improvement programme based on MSNAP is being introduced in Northern Ireland. Alzheimer's Society believes that an independent review to establish the effectiveness of the programme, and explore other options for quality assurance for clinics with fewer staff, would be beneficial.
- Focus on post-diagnosis support over the next five years. Post-diagnosis support consists of information, advice and support for people with dementia and carers. In England, the Secretary of State for Health has committed to improving post-diagnosis support by March 2015 (Department of Health, 2013). No commitments to post-diagnosis support have been made in Wales or Northern Ireland. National governments must guarantee and appropriately resource a minimum provision of information, advice and support to people with dementia and carers following a diagnosis. Improving performance in this area should be the focus of public policy on diagnosis over the next five years.
- Minimum standards for post-diagnosis support. Many people with dementia do not receive support and, where support does exist, there are no quality standards (APPG 2012). Guaranteed minimum provision of support for both people with dementia and carers is vital to promote quality of life and avoid crisis in the later stages of the condition.
- Improved monitoring of post-diagnostic services. There is no nationally held data on what support is currently commissioned for people with dementia. There is a placeholder in the NHS Mandate on measuring outcomes for post-diagnosis support but little progress has been made on data collection. Alzheimer's Society wants to see progress on this commitment without delay.
- Screening. Alzheimer's Society supports access to a timely diagnosis that is early enough to allow people with dementia to plan for the future, including the role that pro-active case finding has in this. We do not support population screening as, at present, there is no practical tool for population-level screening before symptoms of dementia appear.