The Lewy Body Society/Parkinson’s UK comment (see below) has been published on the English Forums on Ageing website.
The Lewy Body Society and Parkinson’s UK response to Government plans unveiled on Thursday 8 November to cut dementia diagnosis times and raise dementia diagnosis rates:
While the charities welcome the proposed early dementia assessment service, they stress the urgent need for staff training and better referral pathways now, to increase recognition of Lewy body dementias, the second most common type of dementia.
Cecilia Yardley of the Lewy Body Society explains: “Lewy body dementias present differently from Alzheimer’s, with fluctuating cognition, visual hallucinations and problems with movement. Where the condition is not recognised, people with dementia and their families can experience years of fear and anxiety without help. The lack of training of some health and social care professionals can leave people with Lewy body dementias poorly supported. In the worst cases, antipsychotics, which can be fatal for someone with a Lewy body dementia, are still being wrongly prescribed.”
The Lewy Body Society and Parkinson’s UK also highlight the needs of people with Parkinson’s who have a higher than average risk of developing dementia.
Daiga Heisters, Head of Professional Engagement at Parkinson’s UK, adds: “It is excellent news to see the government making such a firm commitment to improving detection rates for dementia. To provide fully-rounded care, healthcare professionals must pay attention to the changes in mood and thinking that can accompany movement problems in advanced Parkinson’s. We’re calling for better pathways of care so that people who have developed Parkinson’s dementia receive an accurate diagnosis and the support they need to live life to the full.”
Ms Yardley concludes: “The right diagnosis is of value if it opens the door to appropriate treatment and support. Alzheimer’s-focused services are not necessarily right for someone with Parkinson’s dementia or dementia with Lewy bodies. As so often, ‘one size does not fit all’, and we look for all parts of the dementia pathway to reflect the needs of people with a Lewy body dementia.”
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Sue Berkeley, whose husband Tony’s dementia with Lewy bodies went undiagnosed for eight years recalls, “Tony was tested many, many times for Alzheimer’s but the tests were totally inadequate for diagnosing his Lewy body condition. Apart from anything, extreme fluctuations in ability, even from hour to hour, can be part of dementia with Lewy bodies. So, healthcare professionals must be trained that even if someone seems fine in the surgery and has a good memory, they and their families can be living with devastating changes in behaviour, mood and physical functions. GPs will need to look out for Lewy body-type symptoms and enable people like Tony to be fast-tracked for treatment and support too.”
Jacqui Cannon, Trustee of the Lewy Body Society, whose father had dementia with Lewy bodies, comments, “My Dad shuffled his feet and had hallucinations more than memory loss. He was lucky that his GP was up to speed with the different types of dementia and diagnosed him right first time. He sent my Dad to an Old Age Consultant who confirmed the diagnosis. After that, the GP, who knew how important continuity of care is for people with dementia, always organised for my Dad to see him or another member of the practice – never a locum who did not know his case. That made a huge difference to my Dad and to me.”
Jo Ballman, whose mother had Parkinson’s dementia, observes, “”Staff at our Mum’s Care Home understood the standard physical Parkinson’s symptoms better than the fluctuation Lewy body dementia symptoms. One nurse even told me late in Mum’s life in the home that she originally resented Mum’s fluctuating moods and “aggression” but over time she realised this was the pattern with Lewy bodies. She became better able to empathise with Mum’s situation and be in tune with Mum, which was a great relief.”
Notes to Editors
- The Lewy Body Society is the only UK charity focused exclusively on Lewy body dementias. It funds research, raises awareness of this type of dementia, has an online community and, in partnership with Parkinson’s UK, offers information and helpline support to the public and works with healthcare professionals and service providers to improve the support and care for people with Parkinson’s dementia and dementia with Lewy bodies.
- Parkinson’s UK is the Parkinson’s support and research charity. The charity is dedicated to finding a cure and improving life for everyone affected by Parkinson’s. The charity brings people with Parkinson’s, their carers and families together via a network of local groups, their website parkinsons.org.uk and free confidential helpline 0808 800 0303. They also provide information and training on every aspect of Parkinson’s and campaign to change attitudes and demand better services.
- ‘Lewy body dementias’ is a term which covers two conditions that have a similar array of symptoms: Parkinson’s dementia (PDD) and dementia with Lewy bodies (DLB). Together they affect an estimated 200,000 people in the UK and account for one in six cases of dementia. For more details about the diagnostic criteria for these conditions click here.
- Dementia with Lewy bodies was classified in 1996. Click here for details.
- For the dangers of antipsychotic drugs for people with Lewy body dementias see: Aarsland D et al., Neuroleptic sensitivity in Parkinson’s disease and Parkinsonian dementias. J Clin Psychiatry. 2005;66:633-7 and also Child, A. Clarke, A. [and] Fox, C. [et al] (2012). A pharmacy led program to review anti-psychotic prescribing for people with dementia. BMC Psychiatry, September 25th 2012, Vol.12(1), 155