Alcohol
Related Dementia
Working in inner-city Manchester we see a lot of long-term drinkers and therefore a lot of Alcohol
Related Dementia. Some people do not see Wernicke-Korsakoff syndrome as a dementia, so where do
alcohol disorders fit into the Young-onset Dementia Services?
Wernicke-Korsakoff syndrome is made up of two separate but related disorders:
Wernicke’s encephalopathy
Symptoms: confusion, drowsiness, unsteadiness, double vision, squints
· This is an acute disorder
· Mortality up to 1 in 5/6
· Of the survivors 85% will develop amnesia of Korsakoff type
· Therefore the early stages require neurorehabilitation, not psychiatric care
· Cause - thiamine (B1) deficiency
Korsakoff syndrome
Symptoms: circumscribed memory deficits
· Relatively ‘pure’ amnesia
· Normal immediate memory
· Very poor recall
· Most cases preceded by Wernicke’s
· 25% recover fully; 50% improve; 25% no change
· Improvement may occur up to 2 years Therefore it is inappropriate for specialist young-onset
services to be the main provider unless rehabilitation is offered.
· Cause - prolonged alcohol abuse and prior history of Wernicke’s encephalopathy.
Definitions
Korsakoff’s - meant to represent discrete damage to cells responsible for memory.
Alcoholic dementia - more widespread disturbance, both structurally and
neuropsychologically.
Alcohol and Dementia
Alcohol does seem to be an important contributory factor in the cause of general dementing
disorders (at least 10%).
There is a relationship between excessive alcohol use and Vascular dementia
There is also a possible relationship between excessive alcohol use and Alzheimer’s disease.
Other possible
contributory factors
- Poor diet and self neglect
- Repeated head injury
- Alcoholic seizures
- Hypoglycaemic episodes
- Chronic liver disease
- Genetic predisposition
- Vascular determinants - smoking, poor attention to health (eg. high blood pressure).
The Issues faced by a
Young-onset Dementia Service
Do clients need a general or specific definition of dementia to be accepted?
Does the dementia have to be progressive?
Does it have to be restrictive?
Referrals to Young-Onset
Dementia Services in Central Manchester.
Sources:
- Mainly social workers and psychiatrists.
- Also GP, neurologist, family members
- Learning disability services
- Homeless service,physicians.
Diagnosis:
- 50% have been alcohol-related
- next largest group had vascular dementia
- there have been only 2 cases of Alzheimer’s in the past 12 months
Conclusions
- Alcohol is an important contributory factor in general dementias.
- Wernicke/Korsakoff’s syndrome requires medical and neurorehabilitation, not psychiatry.
- The status of alcoholic dementia is uncertain but clinically seems real and
multifactorial.
Therefore it is artificial to separate Korsakoff’s from alcoholic dementia or to exclude people on the
grounds of Korsakoff’s - many will have multiple pathology.
Dr. RC Baldwin, Consultant Old Age Psychiatrist and Honorary Senior Lecturer, Manchester Royal
Infirmary; lead Consultant for City-Wide Young-onset Dementia Services, Manchester.
Alcohol Related Dementia Contacts
The Mental Health Foundation
20-21 Cornwall Terrace
London, NW1 4QL
(Information & research organisation)
Tel : 020 7535 7400
Medical Council on Alcoholism
3 Saint Andrews Place
London, NW1 4LB.
(Educational & Advisory Body for the medical profession.)
Tel : 020 7487 4445
Alzheimers Society
Gordon House
10 Greencoat Place
London, SW1P 1PH.
Tel : 0207 306 0606
Carers National Association
20-25 Glasshouse Yard
London, EC1A 4JS.
(Campaigns for carers’ rights.)
Tel: 0207 490 8898
Russell
Case Manager
Community Health South London
NHS Trust
41 A-C Streatham Hill
London, SW2 4TP.
(Offers support over the phone on neurodisabilities including
ARD)
Tel : 020 824 32 257
Alcohol Related Dementia useful texts
‘The treatment of drinking problems: a guide for the helping professions’
(G Edwards
et al, 3rd Edition - 1997, Cambridge University Press)
‘Caring for someone with an alcohol problem’
(M Ward, 1998, Age Concern UK)
Alcohol Related Dementia residential care
Chaucer Clinic
St Bernards Hospital Estate
Uxbridge Road
Southall
Middlesex. UB2 4XB.
Tel : 020 8571 4616
Heavy Drinkers Project
Methodist Housing Association
450 Great Western Street
Manchester, M14 4NA
Tel : 0161 248 9069
The Leadbeater Group
7 Eaton Road
Margate
Kent.
CT9 1XE
Contact : Tony Biggs
Tel : 07836 243 005
Tapton Grove Nursing Home
Grove Road
Brimington
Chesterfield
Derbyshire. S41 1QH
Tel : 01246 274 178
Milton Keynes Early Onset Dementia Project was set up to improve the quality, accessibility and
co-ordination of services to younger people with dementia and their carers in Milton Keynes and it
ends in July 2001. Janyce Quigley took up the post of Project Worker in July 1998, and is based in
Milton Keynes Council’s Disability Services Team.
Over the last 2 years Janyce has made contact with local carers and people with dementia, (including
several people affected by Pick’s Disease), and the professionals working with them. Carers told her
how alone they felt, most did not know anyone else who was looking after a younger person with
dementia.
Central Region Forum for early onset dementia met in November 1999. The Forum is a pace for carers,
health and social care professionals to meet and share their experiences and try to improve and
increase the level of services across the region.
At the Forum, a group of carers of younger people with dementia from Milton Keynes, met and decided
they would like to meet regularly. The first meeting took place in early February 2000, at the MK
Alzheimer’s Society carers’ centre. The people who attended were those who had met at the Forum
and other carers with whom Janyce had been in contact.
7 carers attended the first meeting, along with Janyce and representatives of the MK Alzheimer’s
Society. The meeting was very informal, and a light lunch was provided. The carers were a diverse
group – including working carers, full time carers and carers of people who were now over 65, and
were caring for people with a range of diagnoses. The meetings are open to anyone who has a friend
or family member with an early onset dementia, although most of the people attending the meetings
have been spouse carers.
Everyone spoke of having felt very isolated. They had many things in common, all expressed
frustration with the services they had received, and sadness at the losses they were experiencing.
One carer wondered how the word “carer” could be used if they were still working and not caring full
time. They talked about their search for information relating to diagnosis and aftercare as well as
information about benefits and financial and legal issues. It became clear there was a great deal of
knowledge and expertise in the group. They questioned why these things were not more widely
known by the professionals working with them.
They had a lot to say and this meeting went on far beyond the time given for it to end – they all agreed
they would like to meet up again and now meet every 4 to 6 weeks. There has been quite a lot of
informal networking since then.
Janyce had also contacted carers not able to attend meetings in work hours. A weekend meeting was
arranged in May and another has been arranged for July. These meetings are open to anyone who
has a friend or family member with an early onset dementia.
The group has been publicised in Labyrinth, a newsletter about early onset dementia in Milton
Keynes, which is produced by Janyce. She also wrote to GP’s and other health and social care
professionals to give them information about the group.
Labyrinth, now in its 5th issue, aims to raise the profile of early onset dementia and to give
information about things that may help people who are living with dementia as well as new local
developments. It is sent out to carers, GP’s, social care staff and local voluntary agencies.
The aim of the group has been to break the isolation that carers of younger people with dementia
have felt, and to give them opportunities to network and support others in a similar situation to
themselves. The carers group has been well attended. The people who have come to meetings have
said how valuable it has been and Janyce has found it a very rewarding experience.
Janyce Quigley
French
Exchange
London - 2nd May, 2000
The idea of a visit to Lille by a group from the PDSG was put forward by Penelope some time ago. The
idea was passed on to Dr. Florence Lebert who is engaged in research on FTD and who opened the first
unit in France for FTD patients in Bailleul.
Our preparatory talks were finalised last year when we were very happy to welcome the English party
and visit Lille together. In fact, it was so successful that we decided on a return visit to London this
year. Thanks to the organising abilities of Penelope and Lynn in England and Dr. Lebert and Violette
Sorel in Lille, we enjoyed a lovely day in London on 2nd May.
The Eurostar journey from Lille to London went as planned and we were met at Waterloo by Penelope
and Angela who took us by public transport to Queen Square. At the hospital we met many of last
year’s participants and around a very nice buffet lunch everyone was soon talking and exchanging
ideas – language was no problem as it is amazing how a common topic – dementia – can bring people
together. It was like meeting old friends again.
At 1.30 a private bus took us for a two-hour bus tour of London. The sun shone just as we were leaving
and sitting outside was a treat. For some of the participants, it was their first visit to London and the
bus in itself was an adventure. While looking at the monuments and following the explanations on
the audio-tape, we talked about everything including the latest gossip about the Queen Mother’s
coming party for 100th birthday.
For our carers and one patient from Lille, the day in London was a refreshing experience. However, as
we talked about it on our way back home in the Eurostar, we all felt it had brought us much more: it
had taught us a different way of facing up to the illness.
All the British patients knew they were ill and knew how to accept it and live with it, which made it
much easier for the carer. I must say that in France many patients are not told that they are ill which
is a permanent stress both on the carer and on the patient who does not understand what is
happening.
We came back ready to accept that life goes on, in a different way perhaps, but patients are just part
of a normal existence. In Britain they are left to do what they like – as far as safety allows, of course –
and therefore are relaxed, calm and seem happy which makes it much easier for the carer.
What we learnt in London was to look at dementia in a different way. Thanks Penelope, Lynn and all
those who helped to make our day such an enjoy one.
Simone Davies, Paris.
The