Dementia Australia has called for access to affordable and flexible community housing options, particularly in the form of social housing, for people with younger onset dementia.
Like most people with disabilities and dementia, people with younger onset dementia usually want to reside in the community for as long as possible, but when this is no longer possible, appropriate residential care services need to be available.
Yet, for decades, people with younger onset dementia have fallen through the gaps between the disability sector and aged care.
Disability services often do not have a good understanding of dementia or the specialist services required to support people with younger onset dementia, while aged care services are often out of reach due to age limits or are not appropriate for this group.
Dementia Australia recently made a submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS)’s inquiry into accommodation for people with a disability.
Dementia Australia’s submission focused on the need for access to appropriate housing and support for people with younger onset dementia and made four key recommendations including:
- Government should ensure that the transition of the Younger Onset Dementia Key Worker Program to the NDIS does not result in a loss of the specialist advocacy, linkage and support services which to date have provided assistance in relation to housing, amongst other areas of concern, for people with younger onset dementia.
- Government should continue to support efforts to reduce the number of younger people placed in residential aged care, including through alternative supported housing arrangements. This should include the use of dementia enabling environment design principles in housing for people with dementia.
- Appropriate residential care services should be developed for people with younger onset dementia who cannot be supported in another setting.
- Initiatives are needed to support partnership and collaboration between the homelessness sector, and the dementia, health, and aged care sectors, in order to improve access to appropriate, co-ordinated and seamless services for people with dementia who are homeless.
Dementia involves progressive neurological decline, leading to serious cognitive disability and there are more than 25,000 Australians living with younger onset dementia (onset before the age of 65). In 2014, there were 6,400 people in residential aged care under the age of 65 - the vast majority of which have some type of cognitive impairment.
Residential aged care, where the average age of residents is 84.5, is not an appropriate environment for a younger person with dementia or cognitive impairment.
Younger people in residential aged care often feel isolated, and the activities and services available do not cater to the needs of younger people with dementia. At the same time, there are limited options outside of residential aged care for younger people with dementia who are in the later stages of the condition and require full-time care and support.
Evidence was provided to the Committee Round table by the Australian Housing and Urban Research Institute acknowledging this: “the mental health of young people in residential care is often exacerbated or acquired because of the emotional and psychological impacts of an environment which is not age-appropriate. It is the committee's view that there must be specific attention given to ensuring good mental health and well-being of young people in care.”
There is also a need to develop comprehensive supports for people who are homeless and have a cognitive impairment such as younger onset dementia. A significant proportion of the homeless population have cognitive impairment, including dementia, indicating high levels of unmet need for housing and support services.
To meet the growing need, government will need to take the lead role in funding and co-ordinating the provision of appropriate social housing for people with disabilities, including those with younger onset dementia.
As outlined by participants at the Committee Roundtable, there is also a role for charitable organisations, philanthropic funds, superannuation funds, and corporates to participate in funding and delivering social housing for people with disabilities, including through social impact bonds. However, this should be seen as additional to, rather than as a substitute for, government leadership and funding.
It is hoped that Dementia Australia’s submission to the inquiry will lead to more appropriate residential care options for people with younger onset dementia. Hearings will take place later in 2016 with the committee to deliver its findings and recommendations to government at a later date.
You can read Dementia Australia’s submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS)’s inquiry into accommodation for people with a disability.