Dementia Action Week 2022

This week (16-22 May) is Dementia Action Week, organised by Alzheimer’s Society, and the key message of this year’s campaign is: It’s not called getting old, it’s called getting ill.

Every three minutes someone develops dementia, but right now, there are thousands of people who are in the dark about their diagnosis – they may not know what signs to spot, are in denial or just too afraid to visit their GP. Diagnosis rates have fallen to a five-year low due to the pandemic and Alzheimer’s Society estimate there are around 33,000 people living with dementia who would have been diagnosed had the pandemic not happened.

In particular, the symptom of memory loss is being highlighted as one which should not be dismissed as old age, but could be a sign of dementia. You can view Alzheimer’s Society’s moving TV advert here.  It has also produced a symtoms checklist that is available online here.

However, memory loss is not a key symptom of Lewy body dementia, so we would like to highlight some of the other main symptoms to look out for.  If you are concerned about a loved one and they are experiencing some of these symptoms, please consult a doctor.

  • Losing track of time and dates
  • Memory loss – difficulty learning new information or forgetting recent events or people’s names
  • Difficulty judging distances or mistaking reflections or patterns for other objects
  • Struggling to make decisions, or making careless or risky decisions
  • Struggling with tasks like paying bills, planning ahead, shopping
  • Difficulty getting enough sleep
  • Most of the mood and behaviour symptoms in the checklist, eg Becoming easily upset, irritable, or aggressive; Symptoms of depression, like feeling sad
    or hopeless 

We know that Lewy body dementia is currently under-diagnosed. Currently, only 6 per cent of people identified as having dementia are diagnosed with LBD, yet autopsies find that 10-15 percent of dementia patients have Lewy bodies present in their brain. Some studies have found 15-20 per cent of dementia patients had Lewy bodies.  Although there is currently no simple test for LBD, careful clinical evaluation of the patient and their symptoms can form the basis of a reasonably confident diagnosis. A failure to do so, or an incorrect diagnosis, can have serious consequences. It is very important that patients are given the correct treatment for their particular condition, and that carers receive information and support to help them understand the disease and their caring role. Furthermore, the anti-psychotic drugs often prescribed for people with Alzheimer’s disease, can be extremely harmful, or even fatal, to people with LBD.

When Lewy body dementia is diagnosed, patients and carers often feel frightened and lack information about the disease.  Most people haven’t heard of it and too often the professionals (particularly in primary and social care) that they turn to also lack specialist knowledge.  The Lewy Body Society aims to provide this information, through our guidebook and our partnership with Dementia UK to support the Admiral Nurse Dementia Helpline, but not everyone finds us straight away.  We need to raise awareness of all types of dementia so that everyone living with the disease can receive an accurate and timely diagnosis.