Younger onset dementia is simply the diagnosis of a person under the age of 65 with dementia. It varies significantly, but the impact on a person under this age and their families is very different to someone over the age of 65.

• Usually the person is still in paid employment
• They may still have school aged children
• Once they have to give up paid employment, usually recommended early, their family income often halves as they become a single income family
• Their health costs can more than double
• Reduced self worth as their valued roles are diminished or completely negated, which can increase issues such as depression, low self esteem, and so on
• Their travel costs, to accommodate health care appointments and other services required, increase
• There are NO age appropriate services
• Therefore many of the Aged Accreditation Standards are currently being breached in the (Australian) residential setting
• Childcare may be required because the person with dementia not being able to care for their children, and their partner having to work
• They may no longer be able to drive; this impacts them in a number of ways, including not being able to pick up their own children from school, take them or themselves to medical or other appointments; they may not be able to take elderly parents to appointments or on outings, and so on, and their partner (if they have one) becomes less able to work as they are required to assist with more
• The impact of the diagnosis of dementia is treated differently to other terminal illnesses, and no support services are set up as they would be for other terminal illnesses
• The Loss and Grief caused by a diagnosis of dementia is often under recognised and under treated
• The fear of a loss of identity, the loss of privacy, of not knowing your children or grandchildren,
• Means tested carer allowance is not only unreasonable, it is not cost effective[1]
• The negative impact, and the physical and emotional burden on their children, husband and older parents, as care givers, becomes significant

Anthea Innes’s book Dementia Studies[2], concludes further studies need to look at the micro level of experiences of dementia patients themselves, and must move beyond current research and policies, to establish services and support for real well-being, rather than to support current polices and services provided in the care settings.

The most significant missing link for people with younger onset dementia is age specific support and services.

No doubt there may be many more negative impacts of the diagnosis of dementia below the age of 65, and there are significant negatives to a diagnosis of dementia at any age; however talking about the different impacts to someone under 65 is valuable in that it may assist policy makers and service providers to plan their services for us in better ways.

There is no better way to understand the needs of someone with dementia, than to ask them.