About Early Onset Dementia
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Contents of this pageIntroduction
What is dementia?
Different forms of dementia
Symptoms of early onset dementia
Potentially treatable conditions
Incidence in UK and in Oxfordshire
How to get a diagnosis
Early onset dementia refers to a progressive degeneration of the brain occurring before the age of 65. The use of 65 years of age is arbitrary and is widely employed by the medical profession to categorise people, their condition and the services they need. Although dementia occurs more often in older people, the symptoms are similar, irrespective of age. Everyone's experience of dementia is unique though and life history, family circumstances and personality affect the way people cope. Early onset dementia is likely to generate a multitude of needs requiring specialist responses.
You can download the Information Resource For Younger People With Dementia in Oxfordshire in PDF format here. (240K).
Just a brief introduction to the most common forms of dementia is provided here. For further information on early onset dementia, contact the Alzheimer's Society.
For information on dementia services in Oxfordshire : dementiaweb
Whilst it is often possible to distinguish between one illness resulting in dementia and another, it may not be possible to identify the cause of the illness. This is a very active research field and new forms of dementia are being identified. It is generally agreed that Alzheimer's disease is the most common form of early and later onset dementia. Quite a number of younger people are also affected by vascular dementia and diffuse Lewy body disease.
The disease results in brain abnormalities over which the person has no control. The causes are not yet fully understood though research continues. It seems likely that a number of contributory factors are present with the disease onset.
The symptoms of Alzheimer's disease vary from individual to individual, as does the rate of progression of the illness. In the early stages the person may seem more anxious or confused. They may be forgetful, find it hard to make decisions or seem depressed. As the condition progresses changes become more marked and the person's need for help with day-to-day living increases.
Multi-infarct dementia (MID) is the most common vascular dementia. It results from the cumulative effects of small strokes occurring at intervals in the brain. Memory, speech, language and learning are affected. MID progresses in a jerky step-like way with deterioration after a stroke and then stabilising until the next stroke. There may be more insight during the early stages than with Alzheimer's and some abilities may be preserved for longer.
Tiny spherical structures containing proteins are found in the nerve cells of the brain. The cause is unknown though research is being undertaken. The dementia is often mild in the early stages with degrees of dementia varying from day to day. Symptoms may include movement disorders, mild tremor and acute confusion. Depression, delusions and hallucinations are quite common.
The causes are unknown but frontal lobe dementias are most common in younger people. Changes in personality may result and behaviour may become erratic. Obsessive or aggressive behaviour may develop. An awareness of time and an ability to recognise people and places is often retained until quite late in the illness.
Alcohol can cause brain damage. A person drinking heavily over a long period of time combined with poor nutrition and vitamin deficiency may experience memory loss. Replacing the missing vitamins can improve the memory problem but most people affected do not fully recover.
Other dementias occurring in younger people include:
The symptoms of dementia are similar whatever the person's age. Dementia affects the brain in many ways and may cause:
Early diagnosis is important as some conditions giving rise to dementia may be treatable. The list below is not comprehensive:
One in ten of all early onset dementias can be treated if diagnosed early enough. Such treatment usually prevents the dementia getting worse, rather than curing it.
One in ten people over the age of 65 suffer from dementia, and the risk rises rapidly with age, to a quarter of all those over 85. Research indicates that there are around 18,000 people under 65 with dementia in the United Kingdom. Based on these national figures, it is estimated that there are approximately 200 younger people with dementia in Oxfordshire. The majority are between 50 and 65 years of age.
Information on any form of dementia, symptoms, research and treatment is available from Alzheimer's Society and from CANDID who specialise in early onset dementia.
10 Greencoat Place
London SW1P 1PH
0171 306 0606
Helpline: 0845 300 0336
National Hospital for Neurology and Neurosurgery
London WC1N 3BG
0171 829 8772
Huntington's Disease Association
108 Battersea High Street
London SW11 3HP
0171 223 7000
Pick's Disease Support Group
8 Brooksby Close, Oadby
Leicester LE2 5AB
0116 271 1414
Early diagnosis of dementia is important for many reasons. There are many conditions causing symptoms similar to dementia and which respond to treatment. These conditions include infections, constipation, depression, stress and the side effects of drugs. Finally if a progressive dementia is diagnosed early then it enables the person's current difficulties to be understood in the context of their illness. It also allows time to be able to plan the future for themselves and their family.
Consulting the general practitioner is the first step in diagnosis. The GP acts as 'gate-keeper' to hospital and community-based health services. Most GPs will have little experience of early onset dementia and symptoms can be confused with other disorders. It is important to be persistent if problems continue and it may be necessary to return to the GP or seek advice elsewhere. Meanwhile keep a diary of changes occurring so that an accurate history can be passed on to the GP.
The GP should take a thorough history of the person's problems and any family history, conduct a physical examination and carry out any tests that might exclude conditions with similar symptoms to dementia. Questions will be asked to give an indication of mental ability. It is valuable for the GP to talk to someone who knows the person well to understand the changes occurring. If the GP suspects early onset dementia then referral on to a specialist consultant is the next stage in diagnosis.
If there are any difficulties in getting a referral, request one. It is possible at this stage, or at any other time, to request access to medical records.
In Oxfordshire a specialist referral is usually made to a consultant neurologist at the Radcliffe Infirmary, Oxford. Other possible referral routes might be to a psychiatrist, a psycho-geriatrician or to a local memory clinic. The presenting symptoms will influence which specialist the GP refers to for assessment and diagnosis. Some of the medical specialists encountered are listed below:
Assessment usually includes a detailed history together with an examination of physical and mental state. Someone who knows the person well will also be consulted. The assessment may take several hours or several visits or may require attendance at a day hospital for observation. Blood samples may be taken to test for some treatable causes of dementia. Other investigations include:
These are possible investigative techniques only and they will not all be used in one assessment. It will usually be the specialist consultant who has overseen the assessment who will give the diagnosis in a follow-up appointment. It is useful to attend the follow-up accompanied, and ensure that there will be an opportunity to discuss the diagnosis and its implications with the consultant at a later date. The consultant will notify the referring GP. The consultant, and perhaps to a lesser degree the GP, are potential sources of information about dementia.
People experience many difficult emotions following diagnosis: helplessness, relief, shock, anger, guilt, shame, disbelief to name just a few. Family and friends may be able to offer support but often share in the emotional response to the diagnosis. It may be useful to seek some objective, expert advice and listening.
One One-to-One Support Service & Family and Friends Support Service
CANDID provides information, advice and education on dementia for younger people, their families and professionals. Advice can be offered by telephone or, if the younger person is registered with CANDID by their GP, by a nurse counsellor supported by a consultant neurologist.
CANDID: 0171 829 8772
More locally, the GP may be able to refer to a psychological counsellor within the health practice. This may help in coming to terms with difficult emotions and thoughts following immediately on from diagnosis, and during life after diagnosis. Counselling offers the opportunity in confidence to explore personal challenges and distresses. It can be useful even where the counsellor does not have specific expertise in dementia. At its best it can help in regaining control over life, and it does offer an opportunity to unburden thoughts and feelings safely. The British Association for Counselling produces a directory of registered counsellors and they will provide contacts in Oxfordshire.
The British Association of Counselling
1 Regent Place
Warwickshire CV21 2PJ
The Alzheimer's Society has branches in Oxfordshire who will provide someone to talk to. Many of the members have had personal experience of caring for someone with dementia and can actively listen, support and visit on a local basis.
Banbury and District Branch
Banbury OX17 1SD
Abingdon & Vale Branch
143 Upper Road
Kennington OX33 1UL
Advice line 01865 739868
28 Crown Road
Oxford OX33 1UL
For younger children affected by a parent's dementia specialist support and counselling can be sought from the education authority, social services and the Carers Centres which have outreach teams or trained and experienced staff offering family visits and support.
Oxford: 01865 205192
North and West Oxfordshire: 0845 712 5546
South and Vale: 01235 510212
Social services client services
County Youth Officer
Macclesfield House New Road
Oxford OX1 1NA