21 | P a g e
experience over the progression of the disease whilst deal with anticipatory
loss.
Support Services
The needs of families with YOD are many but the services are few. It can be
difficult for younger people to access appropriate community support and
services as the mainstream dementia care services are primarily designed for
LOD. Care providers report that there are few age appropriate services that
cater for the complex and diverse needs of families living with YOD.
Conclusions
The pathway to getting a diagnosis of dementia before the age of 65 is
protracted and complex. There is a lack of knowledge and awareness of YOD,
not only by the public, but also by the medical professions. Awareness of
YOD needs to be widely increased including employers, especially Human
Resources Departments and Occupational Health who can consider
appropriate adjustments for their affected employees.
Better methods of diagnosis are required due to the different etiologist
displayed in YOD. More and better support, guidance and services are
required not only for the individual but also their partner and family including
children.
YOD has a wide-reaching impact on families. The children in the family have
to adopt an adult role in caregiving, impacting on a 'normal' childhood,
teenage years and those of young adulthood. Although alluded to in the
research the impact of having a care burden at such a young age in later life
was not defined. The impact of having a care burden relating to dementia at
such a young age could be the subject for a longitude study.
The services currently available are in the main designed for an older
population. Specialised services and support systems require be designing, in
conjunction with all those living with or affecting by YOD.
Name of Reviewer Emily Wilson
Organisation Service User
Contact Details emilywilson1955@icloud.com