When a young person is diagnosed with dementia, there are limited options available for them when it comes to the time they can no longer remain living at thome.
Many end up living in residential aged care facilities for no other reason than it was the only option available to them.
However, Natasha Chackwick, chief executive officer and founder of NewDirection Care, believes ‘traditional’ aged care facilities are usually not suitable for people with young onset dementia, and smaller ‘group’ homes are preferable, but not always available.
“If an aged care service is going to provide accommodation and care for younger people they need to consider how they can adapt the accommodation and services to cater for this need,” she said.
Ms Chadwick told HelloCare that having people with young onset dementia living in aged care facilities can be a challenge for staff and they require specialised training.
“A younger person is generally stronger and more mobile than many of the older residents they may come across.”
“This can be confronting if the staff have not received significant training in dementia care and in particular focusing on a younger person living with dementia.”
Developing programs, such as television, music and activities, that are suited to the needs of a younger person might also pose problems in an older person’s environment, Ms Chadwick said.
Maintain intimate relationships can also be a priority for those with young onset dementia, which aged care facilities are often not set up to do.
“Being able to cater for the continuation of intimate relationships and private family time can be a real challenge in many traditional environments,” Ms Chadwick said.
Ms Chadwick believes small town settings are the answer, where residents are enabled to live their lives as closely as possible to before they were diagnosed.
She said 19 per cent of residents at NewDirection Care at Bellmere are living with younger onset dementia. Of those, 55% are males.
Many of these residents were formerly high achievers in their lives, Ms Chadwick noted.
“The majority of younger people living with dementia at NDC Bellmere held high-powered positions in business and education and a number where undertaking a PHD when they were diagnosed.”
Many also have children.
“Many of our younger residents have young children and children in their teens and early twenties, all meaning that our role in supporting the person living with dementia and their family is complex and requires considerable empathy and emotional support, particularly as many of our younger residents are mourning the loss of their family life and the life they expected to continue to live for many years to come.”
The ‘microtown’ environment at NewDirection Care at Bellmere has proven itself to be an ideal environment for those living with young onset dementia.
Significant resources are required for the education of staff and the general community about dementia, Ms Chadwick said.
There is also a need for greater understanding the additional effects dementia has on younger people, and there is a need for greater emotional support, early recognition of depression, and support for family.
Moving away from institution-style care to concepts such as NewDirection Care’s ‘microtowns’ and from task-focused care to a more individualised approach, are examples of the ways those living with young onset dementia can be given greater choice and given more opportunity to improve their quality of life.