A Guide to Early-Onset Alzheimer’s Disease

Posted on: 25/08/2016

A Guide to Early-Onset Alzheimer’s Disease

Alzheimers disease is often thought of as a disease of older people, but around 4% of people with the disease are under 65. It usually affects people in their 40s, 50s and early 60s.

Alzheimers disease develops when proteins build up in the brain to form structures called 'plaques' and 'tangles'. Alzheimer's is the most common type of dementia in younger people and may affect 30 to 35 per cent of younger people with dementia. 

While some symptoms can be similar to those of late-onset Alzheimer’s, the disease can also reveal itself in more unusual ways in younger people which can make it difficult for people, families and doctors to recognise. With ‘Atypical’ Alzheimer's disease as it is known, people can experience problems with vision, speech or planning, decision-making and behaviour, rather than memory loss, which is the most common symptom of late-onset Alzheimer's disease. These atypical forms of Alzheimer's disease account for up to one third of all Alzheimer's disease in younger people but only 5 per cent of all Alzheimer's disease in older people. 

Symptoms of early-onset Alzheimer’s can include:

  • Memory problems which interfere with everyday life. This may include forgetting messages or recent events which would normally be remembered, or repeating questions.
  • Confusion or disorientation. People may become confused in unfamiliar situations and lose a sense of place and time.
  • Changes in personality and behaviour. These may be subtle at first and could include apathy, depression or loss of confidence.
  • Language problems – difficulty finding the right words and communicating. This may sometimes be called aphasia.
  • Visual problems – people can have difficulty recognising words and objects and judging speed or distance. When visual problems are a major symptom, the disease may be called posterior cortical atrophy.

Alzheimer’s is a progressive disease, which means that symptoms get worse over time.

In some rare cases of people with early-onset Alzheimer's disease there is a very clear inheritance of the disease from one generation to the next. This genetic form of the dementia - familial Alzheimer's disease - is caused by rare mutations (defects) in three genes. These mutations are found in between 7 and 12 per cent of all people with early-onset Alzheimer's.

Symptoms of familial Alzheimer's disease usually start in someone's 30s, 40s or 50s; the earlier the symptoms start, the more likely the disease is to be genetic. However, familial Alzheimer's disease is extremely rare. It affects only about 500 known families worldwide and probably accounts for much less than 1 per cent of Alzheimer's disease when all ages, young or old, are considered.

The impact of early-onset Alzheimer’s can be significant – people are often working and may have young families. Many younger people with dementia report that the diagnosis was harder to accept because it was completely unexpected and had come 'at the wrong time' in their lives. As well as fear about the future, the diagnosis can cause feelings of loss, guilt or anger. The whole family finds it has to adjust to a wide range of changes. In general, younger people with dementia are more likely to:

  • be in work at the time of diagnosis
  • have a partner who still works
  • have dependent children
  • have older parents to care for
  • have heavy financial commitments, such as a mortgage
  • be more physically fit and active
  • have a rarer and genetic form of dementia.

Some people with dementia may want or need to continue working for some time after their diagnosis. Telling your employer will help give you protection under the law if you want to keep working. Carers may want or need to continue working - possibly with changed working patterns to fit round a supporting role. They may also be concerned about giving up work to care full time.

People with dementia or their carers may wish to seek specialist advice for example from a disability employment adviser at the local Jobcentre Plus, or from the local Citizens Advice Bureau. People should ask for a benefits check to make sure that they are receiving the benefits to which they are entitled. Seeking advice about pension rights is also important.

For people with children, it is important that they understand - in an age-appropriate way - what dementia is, how it affects their parent and what changes to expect.

Driving may be problematic for younger people with dementia. Some people with dementia are able to drive safely for some time after diagnosis, but there will be a point at which the person will have to stop.

Some people with inherited Alzheimer’s disease will be found by diagnostic genetic testing to have a mutation which has caused the dementia. This raises the possibility of genetic testing of adult birth relatives who do not have any symptoms to see if they too have the mutation. Regional clinical genetics services will offer counselling to see whether such testing - called predictive genetic testing - is the right decision for that person. 

There is still a lot to learn about early-onset Alzheimer’s. Alzheimer’s Research UK has funded over £3.1 million of pioneering research into the condition. Several studies are looking at the genetics of early-onset Alzheimer’s. Another is working with people with the condition to follow their health over several years. These and other studies are helping to increase understanding of the condition, improve diagnosis and develop potential new treatments.

As we get older, most of us experience dementia-like symtoms from time to time. Being forgetful or getting confused doesn’t necessarily mean you have dementia. Dementia-like symptoms can be caused by depression, vitamin deficiencies, stress, thyroid problems or urinary tract infections.

If you’re worried, it’s always best to talk to your doctor to discover what’s causing it.

Your doctor should:

  • discuss your concerns and symptoms
  • ask questions to test your thinking and memory
  • carry out a full health check to see whether your symptoms could be due to other causes
  • if necessary, refer you to a specialist or a memory clinic for a fuller assessment.

Getting a diagnosis of early-stage Alzheimer’s disease is really important. The Alzheimer's Society warns that lack of diagnosis prevents people from obtaining the best possible treatment, information and support: Evidence shows that early diagnosis provides a better chance of living well for longer. 

To read more on this and for more advice and support visit: 

http://www.ageuk.org.uk/health-wellbeing/conditions-illnesses/early-stage-dementia/if-youre-worried-about-dementia/

https://www.dementiauk.org/understanding-dementia/about-dementia/alzheimers-disease/

https://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=164

Related articles:

http://www.expertisehomecare.co.uk/blog-post/2016/06/01/don-t-delay-in-seeking-a-diagnosis-for-dementia/

http://www.expertisehomecare.co.uk/blog-post/2016/06/22/dementia-a-quick-guide/

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