Challenges

When dementia strikes at a relatively young age it is associated with specific and particularly severe problems for patients, family carers, and healthcare professionals.

Impact on patient and family

YOD has a profound impact on marital and other social relationships, often involving children. Typically it leads to premature retirement and reduced family income. Since people with YOD may be engaged in work, voluntary activities and planning their lives, issues regarding insurances, loans and legal capacity need to be dealt with. Due to better general health and fewer physical co-morbid conditions, people with YOD spend more years living with the disease than do individuals with dementia of late onset. Therefore care and supervision may be required for a longer period of time and cost of illness is likely to be higher.

Diagnosis may be difficult

The spectrum of causes of YOD includes diseases which affect the frontal lobes of the brain (Frontotemporal degenerations). These diseases are associated with profound alterations of personality and social conduct which put a heavy strain on carers. Moreover, impairment of language or vision and not decline of memory may be the most prominent features YOD. As a consequence, obtaining a timely and accurate diagnosis may be especially difficult. The range of underlying causes also includes neurological disorders which lead to movement abnormalities and may require specific treatment and care. Furthermore, genetic causes play a much greater role in YOD than in dementia of late onset. Therefore, genetic counselling and genetic testing are important issues which require involvement of specialists.

Lack of specific support and services

Existing health and social care structures including day centres and special dementia units do not meet the needs of this patient group in any country. Particularly, day centres and special dementia care units in nursing homes which have been designed for the elderly are inappropriate for younger individuals. Specific services for people with YOD such as peer groups, educational courses or guided leisure activities have only recently been implemented. Also, cognitive, physical and behavioural training programs remain an exception. Specific pharmacological treatment is currently unavailable for most people with YOD. Therefore, counselling and support of family and other carers are of outstanding importance.