Contents

What are the symptoms?
Cognitive decline is always a feature and memory problems occur in two out of three patients.  Characteristically these fluctuate in severity and are associated with various degrees of alertness and attention span. There are increasing problems of daily living. Stiffness is seen which appears similar to that of Parkinson’s disease and repeated falls often occur. Visual hallucinations are present in 80% of patients and appear very detailed and real and are usually related to people or animals.  These hallucinations often occur at night.  Other behavioural problems similar to those seen in Fronto-temporal dementia may be seen although not usually in the early stages the illness. Neuroleptics should be avoided in view of sensitivity to side effects.  The side effects may cause rigidity and confusion and even reported sudden death. In a last resort atypical (newer) neuroleptics may help. DLB is thought to be the second commonest degenerative dementia after AD

Life Span of the Illness
DLB may be a fairly rapid illness, lasting approximately 5-7 years although it may be quicker or slower.

Who can get Dementia with Lewy Bodies and is it genetic
The cause of this form of neurodegenerative disease is uncertain. There are overlaps between Alzheimer's disease and Parkinson's disease. Genetic studies are making some progress in revealing a matrix of different genes, which may contribute to development of DLB. This appears to be complex but may explain firstly the relationship of DLB to the other primary Lewy body disorders including Parkinson's disease and secondly the association with Alzheimer's disease. It remains to be seen whether genetic testing will be sufficiently simple to help in clinical diagnosis. 

Management
As with all dementias careful management and support are vital. Sometimes neuroleptics are given to help control the hallucinations and delusions but these are poorly tolerated. There is now good anecdotal evidence that acetylcholinesterase inhibitors such as donepezil abolish the hallucinations very effectively and are being used increasingly.  The outcome of any treatments needs to be carefully balanced with any side effects that may occur. There are conflicting requirements in trying to treat the neuropsychiatric disturbance as well as the parkinsonism.  The treatments for hallucinations, delusions and behavioural disturbance tend to make the movement disorder worse and vice versa. Depression is common and should be treated.

Why is it called Dementia with Lewy bodies?
The illness has had many names and is now known as Dementia with Lewy bodies.  The changes in the brain cells (Lewy bodies) were first described by Frederich Lewy a colleague of Alois Alzheimer.  These changes were first recognised in Parkinson’s disease where they are mostly restricted to one area of the brain.  In LBD the Lewy bodies are more widely distributed throughout the brain.

Consensus guidelines for the clinical diagnosis of DLB (McKeith et al., 1966)
1. The central feature is progressive cognitive decline amounting to dementia; deficits on tests of attention, fronto-cortical skills and visuospatial ability may be especially significant.
2. Two of the following are required for a probable, and one for a possible, diagnosis of DLB:
a) Fluctuating cognition with pronounced variations in attention and alertness.
b) Recurrent visual hallucinations that are typically well formed and detailed
c) Spontaneous motor features of Parkinsonism.

3. Features supportive of the diagnosis are:
a) Repeated falls
b) Syncope or transient loss of consciousness
c) Neuroleptic hypersensitivity
d) Systematized delusions
e) Hallucinations in other modalities

4. DLB is less likely in the presence of:
a) Stroke disease, revealed by focal neurological signs or brain imaging
b) Evidence of any other physical or brain illness that may account for the clinical picture.

Short Breaks

09.30 - 10.30  AGM – All very welcome. 
10.30 - 11.00  Coffee 
11.00 - 12.00  Increasing Our Understanding - Professor Martin Rossor 
12.00 - 13.00  Accessing Sevices - Ms Jude Sweeting 
13.00 - 14.00  Lunch 
13.30 - 14.00  Hilary’s story - David Hunter Esq. 
14.00 - 14.30  Effects on Children and steps that may help - Mrs. Carol Jennings 
14.30 - 15.00  Formalities that may help - Mrs. Helen Beaumont 
15.00   Close 

Professor Martin Rossor, Consultant Neurologist, National Hospital for Neurology and 
Neurosurgery, 
Ms Jude Sweeting, Dementia Development Worker, Westminster, 
Mr. David Hunter, Chairman PDSG. 
Mrs. Carol Jennings Counsellor PDSG 
Mrs. Helen Beaumont, PDSG. Helen’s husband Clive, had Pick’s Disease and died last year. 

Reservations: contact Penelope Roques.

Professionals: £40.00 
Carers: £10 

Noticeboard - Did You Know?

2.Community Service Volunteers. 
I work for CSV. What we do is place young people that wish to experience living away from home, on care projects for between 4 to 12 months.  These young people want to get some experience of the caring profession, and as they come from all over the world may want to improve their English. Some of those projects are Independent Living Projects where the volunteers live in or nearby to someone living in the community that needs help. The volunteers will do personal care, cooking, taking the person out etc. Lots of these young people are gap year students and want some sort of experience before or after doing degrees. Some of the other projects are working with such groups as the PDSG to promote work, give advice and signpost to various help they require. Of course as with everything these days there is a cost to the project. A yearly retainer fee to CSV, volunteer’s weekly pocket, and food money and also the volunteers travel cost from their port of entry or their home if they live in the UK. The client or the organisation can meet this cost themselves, or in some cases Social Services can fund CSV Volunteers as part of a person's care package. For more information ring Sue at the Northampton office: 01604 620173. 

Sue Helyer 

Jill & Richard

With very many thanks to ‘Jill’ for sharing her experience with me. Carol.