A place of their own

New Zealanders under 65 with Younger Onset Dementia (YOD) placed in support services designed for the elderly can experience high levels of distress as they lose contact with social networks and age-appropriate activities, a study has highlighted.

Speaking at the Royal Australian and New Zealand College of Psychiatrists conference in Dunedin, study author Dr Sally Rimkeit said YOD strikes those in middle age as opposed to old age, and there is a growing body of literature recognising that people with YOD have different needs to those with late onset dementia.

The study Experiencing Place: How people with younger onset dementia experience aged care highlights the distress that younger people experience when they feel enclosed in an aged care facility that is not designed for their specific needs. Losing the lively exercise and social networking they need, they can feel their “life is over”.

Dr Rimkeit said it is recognised best practice that specialist YOD facilities and services are provided, yet such facilities are rare.

Nationally, there a few specialist residential facilities for younger disabled people, and specific units for dementia care within aged care facilities, but no specific YOD facilities. Yet Standards New Zealand states in their Proposed Audit Workbook and Guidance for Residential Services for People with Dementia,
Separate accommodation and service provision shall be made available for younger people with dementia where appropriate.

Similarly national contracts used between the District Health Boards and service providers state that
Younger adults with early onset dementia should be provided services appropriate to their age and needs wherever possible, e.g., not within an aged residential care facility.

Dr Rimkeit is carrying out qualitative research in two District Health Boards, in collaboration with Victoria University School of Architecture and Design.

She says she hopes the study will inform a future project on the development and design of a specialist YOD facility in New Zealand.

“Such a facility could provide world leadership in innovative research and design and provide a foundation for the development of a therapeutic place of care designed specifically for persons with YOD, their families and care givers.”