1. Younger Onset Dementia Tara Stringfellow Early Intervention Coordinator Alzheimer’s Australia WA

2. Overview What is Younger onset dementia? What are the challenges for clients? –Suzanne –Oscar and Carol Issues and recommendations for the future Services available at Alzheimer’s Australia WA

3. What is Younger onset dementia? The term is used to describe any form of dementia in a person under 65 years old. Currently there are 16 000 people in Australia living with Younger onset dementia and 1600 in Western Australia. This is set to double in Western Australia by 2050. Source: Access Economics Report (August 2009): “Keeping dementia front of mind: incidence and prevalence 2009-2050”

4. The age and stage of life of a person at the onset of dementia influences its effect on the person, their family and their needs. Age can also affect the type of dementia a person may have and consequently the sort of changes one may experience. Why is it important?

5. Possible unique challenges Difficulty or delays getting a diagnosis Family responsibility Work responsibilities Significant financial commitments Future plans affected at an earlier stage in life A less common form of dementia Difficulty in accessing appropriate services.

6. Issues and Recommendations for the Future Timely and accurate assessment and diagnosis Employment and meaningful engagement Increased awareness to reduce stigma and social isolation Provide access to appropriate services Increased investment in research Resulting from a series of focus groups with services providers and people living with Younger onset dementia in 2008 and 2009 conducted by Alzheimer’s Australia WA.

7. Timely and accurate assessment and diagnosis Some barriers to getting a diagnosis: –Dementia in people under 65 is less common symptoms are often attributed to other causes –The dementia is more likely to be caused by rare and less familiar medical conditions this can result in different symptoms to those experienced by older people with dementia

8. Employment and meaningful engagement People may experience loss of employment which can cause: –considerable financial strain and hardship –a person to become socially isolated Some people may also experience a decline in their ability to engage in meaningful roles in the community –not being able to contribute can lead to reduced self esteem and depression

9. Increased awareness to reduce stigma and social isolation Sharing the diagnosis can be difficult: people may dismiss the difficulties experienced person with dementia may withdraw from social situations for fear of being judged. People can become increasingly isolated if they: have had to exit the workforce are no longer being able to drive do not receive support and understanding from friends

10. Provide access to appropriate services Lack of innovative, flexible and responsive support available to meet clients unique needs. Often whilst there are services and supports available these may: –not be age appropriate –be confronting for people with younger onset dementia to attend due to age disparities.

11. Increased investment in research Currently there is limited information on the causes, prevalence and distribution of Western Australians who have younger onset dementia. –especially in regional, remote, CALD and ATSI communities. More research is needed to: –identify the specific care and support needs of younger people with dementia –develop appropriate evidence-based care models.

12. Alzheimer’s Australia WA Free counselling for individuals, couples or families 24 hour helpline (1800 100 500) Younger onset specific Living with Memory Loss programs and support groups Younger Carer Support Group and Frontal Temporal Lobar Degeneration Support Group. ‘Young Ones’ Saturday Club ‘2young4dementia’ workshop for people working with younger clients.

13. Into the future Continued willingness to talk about issues faced by minority groups, such as people with younger onset dementia, to: –maintain awareness –ensure a client needs focus. Encourage and support people with younger onset dementia to be ambassadors and share their experiences Continue to advocate on clients behalf when they are unable to do so themselves.

14. Thank you tara.stringfellow@alzheimers.asn.au