Diagnose or disempower? People living with dementia in Wales have the right to a diagnosis, says Alzheimer’s Society


More than half of people living with dementia in Wales have still not received a formal diagnosis according to a new report, Diagnose or Disempower?  launched by Alzheimer’s Society today at their annual conference, ‘Making Wales a dementia friendly nation’.

The report reveals new evidence that of the 43% of people who have received a diagnosis, many will not have had adequate information and support needed in order to live well with dementia. This figure varies widely within Wales, no Local Health Boards (LHBs) have diagnosis rates above 50% and the lowest is 37.2%. Wales has some of the worst rates in the UK and has also seen very little improvement to these figures in recent years, only 0.6% since 2014.i

Sue Phelps, Director of Alzheimer’s Society in Wales said; “There are 45,000 people living with dementia in Wales, less than half have a formal diagnosis.  It is not only alarming that diagnosis figures are so low in Walesbut also disempowers people with dementia and their families when making decisions about their care.

“Receiving a diagnosis of dementia empowers people to make these decisions and choices; it opens the door to accessing services and in some cases, equips people with medication to help manage their condition.”

The report captures the experiences of people living with dementia and their views on their diagnosis and identifies a number of barriers to receiving a diagnosis of dementia in Wales, including;

  • Low public awareness
  • Fear and stigma
  • Poor understanding of dementia by health and social care professionals
  • Under resourcing of memory services
  • A disinclination to diagnose where support services are not available.

Timely diagnosis can bring benefits to the health and social care system through improved clinical management and reductions in crisis admissions. Treatment and care can be more effectively planned to meet the needs of the patient throughout all stages of their dementia.

Good post diagnosis care is essential as evidence shows that with the right support, people with dementia can still enjoy a good quality of life and remain a part of their community. It also helps to change perceptions and the stigma that surrounds dementia, helping people to feel confident, understood and supported as a valuable part of society.

The Diagnose or Disempower? report identified some excellent services for people affected by dementia in Wales. However, it also shows substantial variation in the quality of services received. People with dementia and their carers shared stories of support, or lack thereof. Nearly 1 in 10 people reported receiving no support at all in the first year after they received their diagnosis. The report also found variation in experience of diagnosis and support received from GPs and Memory Clinics and also variation based on the type of dementia diagnosed.

The report makes a number of recommendations:

1. All local health boards to set targets to improve diagnosis rates by a minimum of 5% per year until they achieve a diagnosis rate of 75%.

2. The Welsh Government should run a sustained public awareness campaign on dementia, with a particular focus on reaching Welsh language communities.

3. All GP practices in Wales should complete the ‘Managing dementia in primary care’ training.

4. The Welsh Government to allocate additional resources to memory services so that they have the capacity to support the numbers of people with dementia in Wales who are yet to receive a diagnosis of dementia.

5. Commissioners across Wales to explore innovative practices for memory services that include support from local providers of advocacy and emotional support, such as Alzheimer’s Society or other charities.

6. Every person diagnosed with dementia to receive a named support worker who they can easily contact with any questions and who can signpost them to appropriate services.

7. The Welsh Government to establish a guaranteed minimum provision of integrated post-diagnosis support for people with dementia and their carers.

8. The Welsh Government to commit to an appropriately resourced National Dementia Strategy.

Sue Phelps added; “The evidence from this report (into diagnosis) further strengthens the case for a robust and adequately resourced National Dementia Strategy for Wales.  We already know that dementia costs Wales £1.4bn and urgent action to address this growing issue is required. Half of people in Wales believe that Welsh Government should be doing more to respond to dementia in Wales ii. We hope to see a call for a strategy realised in the manifestos of all the political parties in Wales leading up to the Welsh general election and implemented in the next assembly term.”

“Diagnose or Disempower? highlights that there are still far too many people with dementia in Wales awaiting a diagnosis and for those who have a diagnosis, there is oftena lack of services available to support them. There needs to be a long-term commitment in how we approach caring for people with dementia in order for Wales to fulfil its ambition in becoming a truly dementia-friendly nation.”