Alzheimer's disease is the most common cause of dementia in the United Kingdom, responsible for about 60% of the 800,000 cases of dementia currently being treated. Most cases of Alzheimer's disease develop in those aged 65 or over. Under the age of 65, Alzheimer’s disease is rare, affecting about 1 person in 1000. Over the age of 65 about 1 in 20 are affected. The risk of developing Alzheimer’s disease continues to increase with age, doubling every 5 years, so that by the age of 85 nearly 1 in 2 people will have the disease.
Women have a slightly greater chance of developing Alzheimer’s disease than men..
While the causes of Alzheimer's disease remain a mystery, its effects on the brain are clear. The levels of acetylcholine, a chemical that acts as a messenger in the brain, fall dramatically. At the same time, nerve endings and brain cells begin to die. This causes the brain to shrink and gaps to appear in important areas. The areas commonly affected are those involved in receiving and storing information. Age seems to be the biggest factor implicated in the development of Alzheimer's disease, but some people are more likely to develop the disease because of particular genes they have inherited. The risk of developing Alzheimer's disease is also increased if you have suffered a severe head injury, or have Down's Syndrome. Things that increase the risk of heart disease such as smoking, high blood pressure and high cholesterol levels may also increase the risk of Alzheimer’s disease..
Alzheimer’s disease is a progressive disease, gradually getting worse over time. Alzheimer's disease typically begins with lapses in memory, difficulty finding the correct words for everyday objects and mood swings. These mild symptoms are often mistaken for the natural signs of ageing, however after six months or so, a pattern will start to emerge. Appointments will be routinely forgotten, names and faces get muddled, and shopping or driving can become an ordeal when money makes no sense, and left and right get mixed up. Personality changes can occur, and sufferers often burst into tears for no apparent reason. In more advanced cases, inhibitions are often lost and the person's behaviour becomes more unsettling. Wandering around the streets in undone pyjamas is not uncommon. The person affected may become severely confused and may experience hallucinations, often becoming demanding and sometimes violent. Personal hygiene may be ignored, and incontinence of urine and faeces is common. The final stages of Alzheimer's disease see the disintegration of the personality, and sufferers become completely dependent on their carers. Death usually occurs from other complications, such as pneumonia, brought on by the person’s frail condition.
There is no cure for Alzheimer's disease and none is likely in the near future. Treatment is aimed at slowing down the rate of mental decline. Scientific evidence confirms that drugs licensed for dementia may provide initial improvements and stabilisation of symptoms for the majority of people with Alzheimer’s disease. The drugs may help to improve memory or slow memory loss. Other benefits include improving alertness and motivation. It may take several months of treatment before there is a noticeable improvement, but many people report improved mood and an ability to do things that they had forgotten how to do.
Three drugs, known as anticholinesterases, are currently recommended on the NHS for the treatment of people with moderate Alzheimer’s disease. The three drugs are donepezil, galantamine and rivastigmine and appear to work by maintaining levels of the transmitter acetylcholine in the brain by preventing its breakdown. A fourth drug, memantine, which works in a different way to the anticholinesterases is also available for the treatment of moderate to severe Alzheimer’s disease but is not allowed on the NHS for newly diagnosed patients. See below for NICE guidance on Alzheimer’s disease.
Apart from medicines, it seems that the best way of combating the effects of Alzheimer's disease is to establish and maintain a structured routine, and to try and lead as normal a life for as long as you can. Mental activity such as puzzles, crosswords and reading all appear to help. As the disease progresses people will need more support and supervision, and eventually nursing care.
Consult your doctor if you are concerned about someone who is close to you and are worried that they may have Alzheimer's disease. The doctor will carry out a physical examination and ask a series of questions to test the person’s thinking and memory. If the doctor suspects Alzheimer’s disease, the person will be referred to a consultant with special experience of dementia who will be able to confirm the diagnosis and assess the severity of the condition.
Treatment has to be started by the specialist, but can be continued by the person’s doctor provided the person’s mental condition is reviewed every six months.
Under the terms of the NHS, a doctor may continue to prescribe donepezil, galantamine and rivastigmine for people newly diagnosed with moderate Alzheimer’s disease. Patients already taking donepezil, galantamine or rivastigmine for mild Alzheimer’s disease or memantine for moderate to severe Alzheimer’s disease should be able to carry on having treatment. See below for NICE guidance on Alzheimer’s disease.
GETTING SUPPORT AND ADVICE
Support groups
Alzheimer’s Society
The UK’s leading care and research charity for people with dementia, their families and carers.
Alzheimer’s Society, Devon House 58 St Katharine’s Way London E1W 1JX
Phone: 020 7423 3500 Fax: 020 7423 3501 Email
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Web: www.alzheimers.org.uk
Alzheimer Scotland - Action on Dementia
Helps people with dementia, carers and families, providing practical services across Scotland and campaigning to improve public policies.
22 Drumsheugh Gardens, Edinburgh EH3 7RN
Tel 0131 243 1453 Fax 0131 243 1450 Helpline (open 24hrs) 0808 808 3000
Email
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Web www.alzscot.org
Alzheimer Society of Ireland
Alzheimer House, 43 Northumberland Avenue, Dun Laoughaire, Co. Dublin.
Tel (01) 284 6616 Fax (01) 284 6030 Email:
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Alzheimer’s Research Trust
The UK’s leading dementia research charity, provides free information on Alzheimer’s disease and related conditions
The Stables, Station Road, Gt Shelford, Cambridge CB22 5LR
Tel 01223 843 899 Fax 01223 843 325 Email enquiries@alzheimersresearch.
org.uk Web www.alzheimers-research.org.uk
For dementia
6 Camden High Street, London, NW1 0JH
Tel: 020 7874 7210 Fax: 020 7874 7219 E-mail:
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Admiral Nursing DIRECT:
Telephone or email advice and support for family carers, people with dementia and professionals
Tel: 0845 257 9406 Email:
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Dementia Link
Information, help and advice for those affected by Alzheimer’s disease
www.dementialink.org
Help the Aged
An international charity fighting to free disadvantaged older people from poverty, isolation and neglect. Provide community services and publish information for the elderly on finance, how to stay healthy as well as guidance on choosing a care home
207-221 Pentonville Road, London N1 9UZ
Tel 020 7278 1114 Email
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Web www.helptheaged.org.uk
Financial advice
The following is a list of just some of the financial benefits available to those affected by Alzheimer’s disease. Help the Aged has an excellent website that tells you more about these benefits and how to help you claim.
www.helptheaged.org.uk/en-gb/AdviceSupport/FinancialAdvice/HelpClaimingBenefits/
Attendance allowance - Help for those with a disability who are aged 65 or over
Council tax benefit - Help with payment of council tax
Disability benefits - Help getting around for the immobile
Funeral payments - Financial help with the cost of a funeral
Health benefits - Help with the cost of prescriptions, dental and eye costs
Housing benefit - Help with rent for those with lower incomes
Pension credit - A new benefit which tops up your weekly income
Social fund - Extra help with expenses for those who already claim pension credit
Winter payment - Help with heating bills when the weather is cold
Financial and legal affairs
People with dementia should organise their financial and legal affairs while they are still able so that that their wishes are carried out later when they are unable to manage things themselves. It is important to seek the advice of a solicitor when completing any legal documents to ensure that the documents are legally valid. The Alzheimer’s Society produces a useful information sheet on Financial and Legal Tips that provides contact information for solicitors experienced in helping people with dementia and their carers.
http://www.alzheimers.org.uk/After_diagnosis/Sorting_out_your_money/info_financiallegal.htm
Driving and dementia
Anyone given a diagnosis of dementia who holds a current driving licence or wants to reapply for a new licence must, by law, inform the DVLA wish to continue driving. Other people may also contact the DVLA if they are concerned about a person’s fitness to drive. Notification of the diagnosis should be sent with the person’s full name, address, date of birth and the driver number on the driving licence to:
Drivers Medical Group, DVLA, Swansea SA99 1TU
Tel (weekdays 8.15am-4.30pm) 0870 600 0301 Web www.dvla.gov.uk
The DVLA will send the person a questionnaire that seeks permission for the DVLA to obtain medical reports from the person’s GP and/or specialists. Based on the medical information it receives, it will make a decision as to whether the person can continue to drive or not. The DVLA may also ask the person to take a driving assessment.
A person with a diagnosis of dementia must also immediately inform their car insurance company. If they do not, their policy may become invalid.
The Alzheimer’s Society produces a useful information sheet on driving and dementia and provides tips on stopping driving.
http://www.alzheimers.org.uk/After_diagnosis/Driving_and_travelling/info_driving.
htm
NICE Guidance Explained
NICE revised guidance on Alzheimer’s disease (amended September 2007)
NICE (National Institute for Health and Clinical Excellence) is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health. One of NICE’s roles is to produce guidance on the use of new and existing medicines within the NHS.
The NHS is legally obliged to provide funding in England and Wales for medicines approved by NICE. If your doctor thinks that a treatment approved by NICE is right for you, you should be able to have it on the NHS. If a treatment is not recommended by NICE, then you will not be able to have that treatment on the NHS.
In September 2007, the NICE guidance on Alzheimer’s disease was revised. The main points can be summarised as follows:
1. People who were receiving donepezil, galantamine or rivastigmine for mild Alzheimer’s disease, or those who were receiving memantine before NICE revised its guidance, can continue to have treatment on an NHS prescription until they, their carers, or their specialist consider it appropriate to stop.
2. The three acetylcholinesterase inhibitors donepezil, galantamine and rivastigmine are recommended as options in the management of patients with Alzheimer’s disease of moderate severity only – that is, those defined with a Mini Mental State Examination (MMSE) score of between 10 and 20 points
3. Only specialists in the care of patients with dementia (that is, psychiatrists, neurologists, and physicians specialising in the care of the elderly) should initiate treatment. Carers’ views on the patient’s condition should be sought before beginning any treatment
4. Patients who continue on the drug should be reviewed every 6 months by specialists. Carers’ views on the patient’s condition at follow-up should be sought.
Important things to understand about NICE guidance
NICE guidance is based on what NICE considers to be cost-effective to the NHS. NICE’s authority does not extend beyond the NHS. Clinical evidence confirms that medicines licensed for the treatment of Alzheimer’s disease are effective in improving symptoms.
When using the MMSE to assess the severity of Alzheimer’s disease, healthcare professionals should make sure that people from different ethnic or cultural backgrounds and people with disabilities have equal access to treatment. Healthcare professionals should not rely on the MMSE test alone, to assess whether someone has moderate Alzheimer’s disease if the person has learning difficulties, is deaf or blind, has difficulty speaking or communicating, or is not fluent in the language used for the MMSE test
Treatment outside the NHS
If, under NICE guidance, you or a family member does not qualify to receive treatment on the NHS, any of the four medicines can be prescribed on a private prescription by a doctor who thinks that the medicine is appropriate.
The average cost of medicines for Alzheimer’s disease is £800 to £1000 per patient per year, to which are added consultation fees and dispensing fees. This is equivalent to £2.50 per day
Family Health 
