Dec 22, 2017

New toolkit launched to support people with younger onset dementia

Younger onset dementia is estimated to impact the lives of 25,938 people in Australia, these numbers are expected to rise to 29,375 by 2025 and 42,252 by 2056.

People living with younger onset dementia are now better equipped to understand and navigate the National Disability Insurance Scheme (NDIS) through the release of the NDIS Toolkit for People Living with Younger Onset Dementia and their Carers.

The toolkit is complemented by a short video featuring carers and people living with younger onset dementia that is, those diagnosed under the age of 65, to assist others as they apply to access the new system.

Maree McCabe, CEO Dementia Australia said the introduction of the NDIS offers people living with younger onset dementia options of choice and control over the services available.

“However for a person with cognitive impairment navigating this new system can be daunting and complex,” Ms McCabe said.

April Williams, a carer for her mother Christine, said using this toolkit in conjunction with the NDIS will help address the very specific needs of people living with younger onset dementia.

“Trying to understand the NDIS on top of caring for mum has been overwhelming. This toolkit offers case studies, a valuable checklist and help to understanding developing plans and goals. It will support people with younger onset dementia to get the best out of the NDIS and to live connected and fulfilling lives,” Ms Williams said.

“It is through consultation with our clients and the National Disability Insurance Agency that we have been able to develop this important resource to provide a pathway of support that ensures people are best equipped to maximise what is accessible through the NDIS,” Ms McCabe said.

“As the peak body, Dementia Australia is here to empower and enable people of all ages, living with all forms of dementia to live well and achieve the best possible lifestyle, care and health outcomes.

“Through the use of this toolkit our clients will be able to access information and guidance to support people when making their initial application to the NDIS, understanding how to prepare an NDIS plan, and managing the funding for all their future services, aids and equipment,” Ms McCabe said.

For people living with younger onset dementia assistance in maintaining a brain-healthy lifestyle is vital.  This might include support to keep socially active and to continue to participate in activities, interest groups and, maintaining physical health and wellbeing.

Other services might include counselling support, employment assistance to find or maintain paid or voluntary activities and, assistance with the development of a behavioural support plan, including training for carers and others in behavioural management strategies.

Areas of assistance might cover support to arrange holidays, gardening, cleaning, home maintenance, specialised equipment, assistive technologies and building modifications. It may also include assistance with daily activities such as showering, dressing, preparing meals and medication management.

“With the support of Dementia Australia and this toolkit, people living with younger onset dementia will be enabled to continue to do what is important to them for as long as is possible – to live well and remain independent, in their own homes and within the community,” Ms McCabe said.

Dementia Australia thanks the NSW Department of Family and Community Services for funding this resource. The NDIS Toolkit for People Living with Younger Onset Dementia and their Carers can be accessed at or by calling 1800 100 500 for more information. For direct access to the resource, click here

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