New guidance to help healthcare professionals and community groups to support people with young onset dementia has been launched.

Around 64,000 people are currently living with dementia in Ireland and this figure is expected to double within the next 20 years. Young onset dementia refers to people who develop the condition under the age of 65. Currently in Ireland, it is estimated that up to 4,300 people are affected.

Those impacted often have significantly different needs compared to older people who are diagnosed with dementia. For example, they may have young families, be in active employment and have major financial responsibilities. However, dementia services are often only geared towards older people and can therefore be inappropriate for younger adults.

In response to this, the Alzheimer Society of Ireland commissioned a report and guidance on this topic. The aim of this is to is to develop evidence-driven and consensus-based guidance on how dementia service providers and community groups can and should support people with this form of dementia and their families within communities.

“Ireland has the most wonderful communities committed to accessibility and inclusivity. We know how important communities are to people affected by young onset dementia and those affected by dementia in general. Often, it can be lots of small actions that create a significant impact on a local level,” commented the society’s research and policy manager, Dr Laura O’Philbin.

She noted that people with young onset dementia have long expressed that they prefer to continue their everyday lives in their communities and locality.

“As a person living with young onset dementia, I feel I’m too young for many of the existing services, so my local community is vital to me. People always tell me I’m too young looking to have Alzheimer’s. It’s good to have the opportunity to chat with people and stay engaged. Having the support of groups and businesses in the community is a big help to me,” explained expert advisory board member for the young onset dementia study, Kathleen Quinlan.

The guidance document presents practical recommendations that community groups or healthcare professionals can use to consider the needs of people with young onset dementia under four central themes:

-Awareness and training

-Individualised and social supports tailored to the person’s needs and preferences

-Mapping and signposting of community supports

-Making community supports more accessible for people with young onset dementia.

This work was led by Dr Caroline Kilty, Dr Siobhan Fox and Dr Catriona Curtin from University College Cork, with support from a multidisciplinary advisory group including people affected by dementia, community groups, and health and social care professionals. The report on the research can be read here and the guidance document for healthcare professionals and community groups can be read here.