1 - SPECIFIC CHARACTERISTICS OF EARLY ONSET DEMENTIA

• Some research suggests that people with early onset dementia decline at a faster rate.
• 1 in 10 cases of dementia in younger people may be treatable (proper diagnosis is essential but often not available).
• Patients may need genetic counselling and support. (Genetic defects on chromosomes 1, 14 and 21 are responsible for early onset dementia in a small number of families.)

2 - SPECIFIC CHARACTERISTICS OF YOUNGER AD SUFERERS

• They tend to react differently to the disease.
• They tend to be more physically fit and active.
• They tend to have more responsibilities in terms of employment and families (decisions made due to their work and social roles can have considerable effects on others).
• They may be more aware that something is wrong because they have higher expectations of their abilities and capacities.
• They may be more inclined to feel powerless and frustrated.
  

3 - WHAT EXTRA PROBLEMS AND NEEDS DO YOUNGER SUFERERS HAVE?

• Family and friends
• If sufferers have a dependent family, they need to make arrangements for the future.
• Younger sufferers are more likely to have younger children and their children may feel that they are responsible for the disease due to something they have thought, said or done.
• Young children lose the support of at least one parent. Some children can start to experience difficulties at school and may behave in an aggressive way to the parent who is ill or become a kind of "carer of the carer".
• Early onset dementia can disrupt family transitional stages. For example, the youngest child may find it difficult to leave home, thereby preventing the family from moving on to the next stage.
• Parents of younger Alzheimer's disease sufferers may be unwilling to accept the diagnosis.
• Friends and relatives may fail to give their support due to their problem accepting the diagnosis, shock and a feeling of helplessness.
• Personal relationships
• Strain on relationship for a number of reasons :
• lessening sexual interest or increased sexual demands (which does not correspond with the partner's needs)
• personality change
• loss of job may lead to a loss of social and financial status
• forced to stay at home, even though still active and energetic (which can make additional demands on the partner)
• Employment and finances
• There is an increased likelihood that the person is working and will have to change or leave his/her job.
• Need to make provisions to keep the person in employment for as long as possible.
• Those not in paid employment - are they claiming all the benefits they are entitled to?
• Importance of an early diagnosis to avoid a person being dismissed because of ignorance of the disease and then receiving a reduced pension and loss of benefits as a result.
• When young Alzheimer's disease sufferers have to retire or lose their job, carers might also have to leave a job in order to care for them, thereby resulting in a double loss of income.
• Diagnosis
• Aside from the distinctive choreiform movements that are found in the stages of Huntington's disease, the diagnosis of younger onset dementia, especially Alzheimer's disease, Pick's disease and multi-infarct dementia, is medically very challenging. This is partly due to the fact that diagnosis is based on exclusion and there is a distinct lack of available research on the first signs of dementia.
• Many general praticioners have very little experience of early onset dementia and may even rule out the possibility. They might think that the problem is due to the menopause, depression or migraine etc.
• The symptoms may be confused with other disorders or even drug misuse.
• Younger Alzheimer's disease sufferers do not fit easily into one medical speciality.
• An early diagnosis is all the more important due to the fact that younger sufferers may have more commitments. The sooner they know the diagnosis, the sooner they can start to take an active role in making necessary arrangements and planning their own care.
• Legal and financial matters
• The problem of joint accounts (the need to make arrangements such as an Enduring Power of Attorney; otherwise the bank may freeze the account).
• Need to appoint agents or appointees to handle the person's finances.
• Behaviour
• There is an increased problem with young Alzheimer's disease sufferers with regard to wandering and aggressive behaviour in that they are fitter and more active. Consequently, their behaviour may be more difficult to handle.
• Younger Alzheimer's disease sufferers are often unwilling to give up driving which is their last sign of independence. Once dementia has been diagnosed though, insurance companies may be unwilling to insure them.
• Lack of awareness among the public of early onset dementia
• People may be less likely to make allowances for strange behaviour than they would for older people. This has on occasions led to young Alzheimer's disease sufferers being arrested for petty crimes such as shoplifting.
• Insufficient services for younger Alzheimer's disease sufferers
• Younger Alzheimer's disease sufferers often have the problem of not fitting into a specific category. It is sometimes a case of having to choose from amongst a range of services, which may have been set up with other needs or age groups in mind. In such cases, the services provided are unlikely to provide for their specific needs (related to their age, their emotional reaction and having dependent children or teenagers who may also be their carers).
• General pratitioners may be unaware of the appropriate services to help the person and his/her family.

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