Jul 11, 2019

People with young onset dementia have few options and are turning to aged care 

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.

Aged care facilities not suited to younger residents

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.

Many with young onset dementia mourn the life they expected

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.” 

How ‘microtowns’ work

The ‘microtown’ environment at NewDirection Care at Bellmere has proven itself to be an ideal environment for those living with young onset dementia.

  • There are small houses where only seven people live together based on their values, which enables residents to choose who they live with, whether that’s a mix of younger and older people or younger people in the one house.
  • Family-friendly environment which enables young children to visit either in the house or in one of the many outdoor areas such as the gardens, bbq area, café, wellness centre, spa or corner store .
  • Private rooms with choice of king single, double or queen bed so that couples and families can maintain intimate relationships.
  • All people who work in the microtown, whether that is in the shop or as a house companion working closely with residents every day, are chosen on the basis of their ability to meet our values of individuality, community, relationships, respect and empathy, and they are continuously trained in dementia care.    

Shift needed away from institutionalised dementia care to more individual approach 

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.


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