" New research has gathered the feedback and experiences of people living with younger onset dementia, their families and carers to make recommendations for service design. "
Research to determine what people with younger onset dementia need from formal services

New research from the INSPIRED study at UNSW Sydney has gathered the feedback and experiences of people living with younger onset dementia, their families and carers to make recommendations for service design.

An estimated 26,443 Australians are living with younger onset dementia, which is where symptoms emerge prior to the age of 65. Despite this, studies suggest that people with younger onset dementia underuse the formal services that are available to them.

In a recent study published in PLOS ONE, researchers from the School of Public Health and Community Medicine and Dementia Centre for Research Collaboration at UNSW Sydney conducted interviews and focus groups with people with younger onset dementia, their families and carers to determine the barriers to service use. Although the majority of participants (96.8%) were recommended at least one community service, 66.7% chose not to use one or more of these.

When probed for their reasons for making this choice, participants reported dissatisfaction with services that were designed for and dominated by older people with dementia. They noted that the experience of participating in a service with much older people was demoralising and distressing. They also talked about their complex circumstances and how existing services did not meet their needs. For example, lack of availability of programs after hours, contemporaneous child care, or security for physically agile participants were key barriers.

Participants advocated for a centralised service providing the right information, at the right time, and in the right way. The Dementia Australia Young Onset Dementia Key Worker Program was highly praised by users.

Lead author and PhD candidate Ms Monica Cations said the research is timely, since funding for support services for young onset dementia has recently moved to the National Disability Insurance Scheme (NDIS).

“Until now, people with young onset dementia have not been supported by disability providers, who are likely to have limited knowledge about their needs,” said Ms Cations.

“Our findings provide clear, practical guidelines for designing and delivering services tailored to people with younger onset dementia.”

From the findings, researchers developed five key recommendations for those designing and delivering services for people with younger onset dementia under the NDIS. They suggest that services must be:

  1. Unique: designed with the unique circumstances of younger people in mind, and should be separate from those offered to older people where possible.
  2. Tailored and timely: acknowledging that needs vary over time and are unique to the person and their family.
  3. Financially accessible: considering the financial strains and constraints associated with younger onset dementia and making use of volunteers and platforms that are cost-effective.
  4. Flexible: using innovative methods of service delivery based on the complex occupational and other care arrangements of people with younger onset dementia and their families.
  5. Meaningful: providing meaningfully or purposefully engaging activities that extend beyond keeping occupied.

Ms Cations said service providers should be encouraged to be creative when tailoring a service plan for people with younger onset dementia, understanding their unique circumstances and right to stay meaningfully engaged in their community.

The INSPIRED study is lead by Professor Brian Draper and Dr Adrienne Withall at UNSW Sydney. For more information, contact Monica Cations at m.cations@unsw.edu.au.

Monica Cations was awarded a PhD Scholarship in 2013 from the Dementia Australia Research Foundation to explore environmental and lifestyle risk factors for younger onset dementia.

 Posted: February 7th, 2018
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