June 7, 2017
New
guidelines have been published on the clinical and physical indicators to help
ensure patients with dementia with Lewy bodies get an accurate diagnosis and
the best care possible.
The
death of Hollywood actor Robin Williams in 2014 threw the condition into the
spotlight as it was identified he struggled with the illness.
Now
scientists at Newcastle University, UK, have led an international team of
experts to produce new recommendations to help diagnose the disease more
accurately and improve management of the complex disorder.
According
to research published online today and in the July 4, 2017, issue of Neurology,
the medical journal of the American Academy of Neurology, the world leaders in
their field highlight important clinical and diagnostic biomarkers, but call
for more clinical trials into the illness.
Ian
McKeith, Professor of Old Age Psychiatry at Newcastle University's Institute
for Ageing, led the international dementia with Lewy bodies (DLB) consortium,
which last reported on diagnosis and management of the illness in December
2005.
Professor
McKeith has been instrumental in leading this research over the past decade,
which has been supported by the NIHR Newcastle Biomedical Research Centre, a
partnership between Newcastle upon Tyne Hospitals NHS Foundation Trust and
Newcastle University.
The
new recommendations were established by experts, including patients and care
organisations and highlight the importance of detecting the disease early.
Professor
McKeith said: "There remains a pressing need to understand DLB, to develop
and deliver clinical trials, and to help patients and carers worldwide inform
themselves about their disease.
"It
is important that people are aware of the condition's prognosis, best available
treatments, ongoing research, and how to get adequate support.
"Our
guidelines now distinguish clearly between clinical features and diagnostic
biomarkers, and give guidance about the best methods to establish and interpret
these.
"Without
accurate diagnosis we can't do the clinical trials that are
needed to demonstrate a treatment that works."
DLB
is a disorder that shares symptoms with both Alzheimer's disease and
Parkinson's disease. It may account for 10% to 15% of all cases of dementia yet
it is not sufficiently recognised.
The new guidelines focus on clinical features, such as
visual hallucinations, motor features of Parkinson's disease, and rapid eye
movement sleep behaviour disorder.
Detailed information is also provided about the best
biomarkers to use to help confirm a diagnosis when a patient presents with one
or more clinical features.
It is estimated that more than 100,000 people in the UK are
affected by the illness, and over 5 million people worldwide.
Professor McKeith said: "Newcastle has been at the
forefront of DLB research since the late 1980s and we continue to be so as more
and more is understood about the condition."
Future research will focus on family studies to find genes
relating to DLB, on collecting biological samples from large population-based
cohorts, and on developing a publicly available DLB genetic database.
Jacqui Cannon, CEO of the Lewy Body Society, said: "It
is so important that people receive a diagnosis of the correct subtype of
dementia, only then will they receive the correct support, care and medication.
This is particularly important for people living with DLB."
Case study
Debbie Ainscow knows first-hand the devastation that
dementia with Lewy bodies can cause as her father lived with the condition for
more than seven years before his death, aged just 79.
Harry lived an active lifestyle, yet his illness turned him
into a man who was unrecognisable as he suffered upsetting visual
hallucinations, became incoherent at times, and was rigid in his movements.
Mother-of-one Debbie, 48, of Boldon, South Tyneside, said:
"I didn't know anything about the condition until my dad received his
diagnosis - it came as a shock and was devastating.
"It was heartbreaking to see how the condition changed
him. He would shuffle along and became very rigid in the way that he would walk
and move.
"It was very upsetting and challenging to see my dad's
dramatic change in personality and his aggressive behaviour, this was probably
the hardest part.
"At the time we didn't know anything about DLB and it
was difficult, especially for my mum, Marjorie, who was with him 24/7.
"Had we had the ability to access guidelines like the ones
published today it would have made a big difference and we would have felt less
stressed because we'd have understood the condition better.
"It is very important that patients and families know
how the illness presents itself as this can help people develop coping
strategies to get the best quality of life possible.
"It is fantastic that Newcastle is leading the research
into DLB and I am delighted to see that new recommendations of how to diagnose
and manage the condition have been published."
More information: Neurology (2017). DOI: 10.1212/WNL.0000000000004058
Journal reference: Neurology
https://medicalxpress.com/news/2017-06-easing-family-distress-international-guidelines.html
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