The Younger Onset Dementia Aotearoa Trust (YODAT) was formed in November 2015 by people interested in improving the lives of younger people living with dementia and their families and support person.
The overarching goal of YODAT is to enable people with younger onset dementia to live in their homes and communities for as long as possible before some form of residential care may become necessary; and if that time does come, that age appropriate and home-like facilities are available to encourage strategies based on individual strengths and interests to enhance quality of life.
YODAT is seeking to address the gaps in the care and treatment of people living with younger onset dementia by providing age appropriate facilities and services addressing physical, emotional and spiritual needs, advocacy for people with this condition, and support for their families, carers and communities.
‘Dementia’ is the umbrella term for a number of progressive neurocognitive disorders affecting a person’s memory, language, motor abilities, planning abilities and/or perception. ‘Younger onset dementia’ is the term used when this syndrome strikes people in middle age as opposed to old age, more specifically defined as those experiencing symptoms of dementia when aged 65 or younger. As a direct outcome of their relative youth, people with younger onset dementia are generally physically fitter and less frail than those with older onset dementia. They also may still be working, or even raising young families.
“People with younger onset dementia may still be working, or even raising young families.”
Research has shown that the lived experience of those with younger onset dementia, potentially facing life in an aged care facility, may be one of distress with fear of a loss of belonging, a loss of autonomy and a loss of meaningful activity. Difficulty in timely diagnosis, combined with lack of access to age appropriate care and unfamiliar, institutional environments all compromise their quality of life. There is a growing body of evidence that individuals with dementia are capable of reflecting on their lived experience and that people with younger onset dementia require specialised age appropriate services.
There are few specialist support services available for people with younger onset dementia, and the current model of service provision in New Zealand is based primarily upon support services designed for the frail, elderly person with dementia.
