The document summarizes research conducted on younger onset dementia (YOD) services in New South Wales, Australia. Key points: - Fifteen YOD-exclusive services and several "YOD-inclusive" mainstream services were identified and surveyed across NSW. - Social support models included group activities, individual support, and programs for people with YOD as well as their caregivers. - Issues identified included inconsistent eligibility criteria, reluctance from some clients to access services, challenges accommodating high-needs clients, difficulties providing person-centered support, and limitations from short staff training and service hours. - Recommendations focused on addressing stigma, improving clinical support for staff, and allowing greater flexibility and individualization within services.

2. • The Ella Centre desired to expand its role in
providing YOD information support
• Funding granted for both info. support and a
research and service mapping component
• This led to the idea of creating both a
database of services for research purposes,
and a new YOD-specific, publically accessible
information support website

3. • To map YOD specific services across the State for
the purpose of making appropriate referrals and
informing service planning
– Survey DAS Advisors seeking feedback on any YOD
specific services, plus other organisations supporting
YOD clients/carers
– Examine/describe the range of contexts in which
people with YOD receive support in the community
– Prepare information for ADHC detailing services for
people with YOD in NSW
– To add new services as they are identified

4. • To investigate the policy and professional-cultural
contexts of YOD services in the community across the
state of NSW from the perspective of service providers
– YOD in the Disability sector
– YOD in the Aged Care sector
– Development and operation of YOD services in their policy
context, from the perspective of service providers
• To develop an online database of YOD services for the
purpose of providing information support and referral
• To investigate the provision of YOD services in light of
current thinking around best practice

5. • Focusing solely on:
– social support: centre-based and in the community
– respite for carers
– Case management for YOD
– YOD specific information support and advisory services
relevant to YOD.
• Excluded areas have been dealt with by AANSW and INSPIRE
(UNSW) to some extent
• Social support services and respite services a worthy area of
focus alone
• Not enough representative data gathered for CALD and
Aboriginal specific services
• Relatively small research team

6. • A multi-purpose self-administered online survey:
• Survey Gizmo software package used for distribution,
reporting and some analysis
• Quantitative and qualitative components.
• Snowballing technique initiated through help from DAS and
local government workers in Disability and Aged Care
• Multiple survey branches for different target groups:
– Dementia Advisory Services
– YOD specific services, aiming for a complete sample
– Mainstream services accommodating YOD, aiming for
a representative sample
– Mainstream services able to accommodate YOD

7. • Telephone and face-to-face Interviews:
• Semi-structured
• Mostly qualitative, some quantitative components (to clarify
survey data)
– with DAS Advisors:
• Enriching the picture of YOD social support region by region
• Exploring the different roles Dementia Advisors play in the
context of regional difference
– with YOD service coordinators:
• Enriching the picture of YOD specific service provision
• Reporting the experiences and challenges of service
providers in the context of current thinking around best
practice
• Reporting the experiences of challenges of service providers
in a policy context

8. • Rationale for an interactive online database:
– To develop the information support capacity of
the YODI
– To distribute knowledge of appropriate services to
the YOD community, including carers
– To provide a potential resource for better referral
to appropriate social support
– To link disparate existing databases and web
resources in way that is relevant to YOD

9. • Development and maintenance of the interactive
online database:
– mapping software designed by YODI researcher and
custom built by the development team at iMapBuilder
• http://www.imapbuilder.com/interactive_map_resources/
– Due to the relative complexity of this database, the
Map is updated by a single administrator
– This allows for information to be stored privately that
is only relevant to the research (surveys, interview
transcripts, research notes)
– The public-facing side of the map can be used as an
information support and referral tool
– Inability for individual services to self-update:
• Requires ongoing funding to develop and update the map
• Ensures a greater degree of control over how the map works
functionally and aesthetically

10. • Survey received:
• 248 complete responses
• 153 partial responses
– Of this amount the survey elicited responses from:
• 241 service providers (Health, Aged Care, Disability)
• 18 DAS advisors
– The remainder were from target groups irrelevant
to the research scope

11. – Several services funded specifically to develop and operate programs targeted directly at people with
YOD identified as YOD specific.
– …but, so did several Dementia Day Centres, Flexible Respite services, COPS members, EACH, EACHD
and CACP packaged care providers.
– These latter (mainstream) services had varying capacity to individualise their services in ways they
deemed suitable for people with YOD.
YOD-Specificity was interpreted in many cases as a by-product of person-
centred care, rather than denoting an exclusively YOD funded or targeted
service
– 2 main categories for YOD specific support defined for the purpose of analysis
and reporting:
• YOD-exclusive services:
– Only for people with YOD and their carers
• YOD-inclusive services:
– Mainstream services that include people with YOD offering varying degrees of
service individualisation
• 2 sub-categories of YOD-inclusive services:
– YOD-integrating: incorporated into various group contexts with older clients
– YOD-accommodating: individually oriented services, 1:1 support

12. Key areas reported on by respondents identifying as
YOD specific:
LGAs
supported
Service
type
Respite
function
YOD client
number
Eligibility
criteria
Service
frequency
Service
duration
Est. max.
hours
p/client
Client
transport
Funding
Staff to
client ratio
Staff
training
Referral
pathways
Areas for
improvement
Access to and use of
YOD info. Resources
by staff
Perceived knowledge
of YOD social support
needs

13. Key areas reported on by respondents identifying as
not YOD specific, but accommodating or able to
accommodate YOD:
LGAs
supported Service
type
YOD client
number
Eligibility
criteria
Service
frequency
Service
duration
Est. max.
hours
p/client
Client
transport
Funding
Staff
training
Barriers to YOD
inclusion into
service
Perceived knowledge
of YOD social support
needs
Access to and use of
YOD info. Resources
by staff
Service adjustments or
special provisions for
YOD

14. • YOD service prevalence:
Fifteen (15) YOD-exclusive services identified as in operation at time
of research across NSW
• Two (2) YOD-exclusive dementia cafés, providing regular social
support exclusively for people with younger onset dementia and their
carers in the same location
• Twelve (12) YOD-exclusive social support and/or respite services, all
slightly different models offering either one-on-one or group social
support, a combination of the two, or combined social support
activities for people with YOD and their carers
• One (1) YOD-exclusive residential care facility
• This count excludes some services (YODA, HammondCare’s YOD
Partnership Advisor) which do not directly provide any social support,
but will be discussed in the final report

15. • Social support service models:
– Group social support in the community for people
with YOD
– Group social support in the community for people
with YOD and their carers
– One-on-one (1:1) social support in the community
for people with YOD
– Or a combination of these

16. • Group social support in the community for people with YOD
• Provides a much-needed social support function for people whose friends have dropped away
often entirely.
• Normalises community-based social experiences for people with YOD in an age-appropriate,
comfortable and supported environment.
• Allows services to make the most of resources by minimising expenditure on staff and transport
• Challenging client behaviours can limit social support opportunities, especially where an
alternative social support model is not present in the local area
• Lack of alternative social support services for high needs clients can disrupt the maintenance of a
manageable client profile
• Staff cannot easily be matched to clients on an individual basis
• Diversity of age groups within the YOD demographic leads to a level of compromise regarding
activities
• Transport remains a strain on budgets
• The provision of a normalising social environment can conflict with professional boundaries.
“Their needs are rapidly changing within a very short period of time, so unfortunately
there isn’t anywhere to send them to or refer them on to. I have to keep them, and
we’re only a low level support service ourselves so that’s really challenging”.

17. • Group social support in the community for people with YOD and their carers
• Provides a safe, non-judgmental and supportive environment for couples and families
affected by YOD
• Offers a break without separating client and carer by facilitating normal, shared
activities with appropriate support
• Provides a meeting place for exchanging useful information between carers and
services in the community
• Operation on one-off grants and non-specific funding limit service frequency and
affordability
• Workload pressures limit the commitment to service coordination by individual
operators
• YOD numbers are spread across large service regions, limiting the practicality of these
services particularly in regional and remote areas
• People at earlier stages of dementia can find the groups confronting
“[the] group really is a much needed aspect of our program, because the carers are
able to talk in a non-judgmental safe environment about the challenges and their
techniques in dealing with some of these challenges that their husbands or loved ones
share in similar ways to each other”.

18. • One-on-one (1:1) social support in the community for people with YOD
• People with challenging behaviours can be catered for individually and outside of the
group environment
• Different client interests can be accommodated with potentially less compromise than
within a group situation
• Better ability to match staff to clients than in a group setting
• Greater opportunity to develop a beneficial and ongoing staff-client relationship than
in a group setting
• Individualised approach may challenge services to provide greater flexibility
• Lack of male support workers
• Clients have higher expectations than older people and require a greater variety of
options
• A 1:1 individualised, person-centred service often requires more resources than
organisations can provide
“They [people with YOD] will challenge service providers and say, ‘well I’m not really
happy with that, what else have you got?’ I think this is a great stepping-stone to the
way services will actually go. We should be challenged, we should be asked ‘what else
have you got’, ‘I’m sick of doing that’, and we should have the answers”.

19. – All coastal
– In various levels of demand (at, above or under funded capacity)
– Access various funding streams at community, State, and
Commonwealth levels
– Are in development, transition or “limbo”
– Frequently innovative
– Frequently isolated
– Knowledgeable and self-aware of service strengths and limitations
– have appeared in response to local demand and developed by
passionate and committed organisations and individuals, rather than a
methodical needs-based analysis of where services are required
• New YOD Key Worker Program is a positive response to the hitherto
disparate, ad-hoc nature of YOD service development.

20. – Eligibility inconsistencies and policy confusions:
• What to do with clients over 65?
• Some services attributed this problem to a recent funding split at age 65
between State and Commonwealth funding.
• Funding arrangements indicate however that clients over 65 can continue to
receive a YOD service, and will be funded appropriately across the age split:
• NSW and Commonwealth Govts. have made a commitment to fund over 65s
in YOD services, though this may not be well understood or implemented.
“New clients should continue to be offered services according to their requirements and in
a similar manner to how services were offered prior to the transition…
…In developing its approach to the funding split, the Commonwealth and NSW
governments worked through all available information and considered each line of funding
received by each service provider. Funding was split according to the portion of service
delivery to clients on either side of the age split”
(Joint DoHA/ADHC letter to HACC services following 2012 funding split)
“The issue between what happens to someone over the age of sixty-five in younger
onset services, is they just automatically need to be pushed over to aged services…”
(YOD service provider)

21. – Reluctance to receive service and managing the
assessment process:
• Some people with YOD and their carers are reluctant to receive YOD-
exclusive services
• Reluctance can be related to stigma and concerns about being noticed in
the community through participation in social support and respite services
• Reluctance is also related to the assessment process
• Reluctance can be countered through a sensitive and informal approach to
client assessment
“It is often associated with that stigma, thinking that they’re going to come
across a lot of… people in a more advanced state of dementia, and that can be
confronting to them”.
“I’ve got one or two clients who are well known in their communities, they’ve been
businessman, I always find that it sometimes can take a lot longer to get those
people to take up services as well”.

22. – Determining eligibility: Dementia diagnosis and types of dementia
• Some services don’t require a dementia diagnosis, while others do
• The need for a dementia diagnosis may restrict access to services
unnecessarily
• However, the absence of a dementia diagnosis may undermine the YOD-
exclusivity of services
• Some clients with alcohol-related dementia may outgrow a service, but have
few other options beyond it
• People with another primary diagnosis are often excluded from these services
“At the moment we’ve got two people… that have an alcohol-related dementia
diagnosis, and for three years they’ve actually been very stable, they’e getting good
nutrition, they’re not drinking and they’re actually now starting to feel the emotional
effects of watching other people deteriorate cognitively and that’s a big issue”.
“They need to have a diagnosis of dementia and we’ve needed to add an additional
process into that where we actually need a specialist’s report… We did get a lot of people
ringing saying [they had] short term memory loss because of a brain injury or because of a
depression, so we needed to be very careful that we actually had people with a specialist
made diagnosis”.

23. – Accommodating clients with challenging behaviours:
• People with particularly challenging behaviours are often not
eligible for or are excluded from social support programs
• These clients can sometimes be accommodated in appropriate 1:1
social support arrangements, but often are not catered for at all
• Inability to accommodate people with challenging behaviours is
mostly attributed by service providers to low levels of staff
expertise and lack of access to specific training
“People [with YOD] were experiencing behavioural problems, [and] a lot of service
providers are reticent to work with them. It’s hard with challenging behaviours.
There’s a tendency to disengage people in programs because of behavioural issues”.
“There is a challenging behaviours program in some LGAs up here, but they’re
needing a lot of support to actually offer that service and clinical support and there’s
not much to do with some of these people… and there’s not many hours”.

24. – Staffing YOD services:
• Satisfaction with staffing arrangements is attributed to luck and individual
personalities as much as other more manageable attributes
• Agencies brokering staff often cannot provide entirely appropriate staff for
YOD services
• There is a demand for more male support workers
• Staff can not always be matched appropriately to clients on an individual
basis
• Low award wages limit the expertise and availability of staff
• Staff need some or more dementia and YOD specific training
• Existing training may not be adequate
• Staff supporting YOD need better access to clinical expertise
• Volunteers can provide both an affordable and skilled addition to paid
staff
“We have a big gap there. You can’t roster staff on to work with people with younger
onset dementia without training… I think from my own experience as a teacher at TAFE
and working at Alzheimer’s [Australia], I am aware that we don’t train people who are
working in the sector very well in working with people with younger onset dementia”.

25. – Providing person-centred support:
• Limited and service hours restrict the ability of services to provide person-centred
support
• The venue assessment process can limit options and delay services’ response to
clients’ expressed social support needs
• YOD clients may elect activities with a considerable degree of risk, limiting the
flexibility to accommodate all client choices
• Staff may need specific knowledge, experience or expertise to appropriately
facilitate clients elected activities
• Experience predominantly with frail aged clients may limit the ability of some
workers to adopt person-centred approaches
• Disability support organisations may be more comfortable and experienced with
providing person-centred support.
• Developing and maintaining community connections can assist services to provide
more options for clients
“[People with ] younger onset [dementia] have a lot of strategies that they use to get an outcome that
they want. I think they don’t encounter this in Aged Care. In Disabilities you encounter it, but if they
[Aged Care workers] haven’t had experience in disabilities and they’ve always delivered aged care, this is
very new for them to get their head around”.
“There‘s only so much funding you can give them! They’re pretty much a self-determining lot,
they want to do what they want to do, and so you try and facilitate it as much as you can but it
doesn’t always work out that way.

26. • YOD-integrating and YOD-accommodating services:
87 mainstream services provided
enough reliable data to constitute
an informative sampleMost services clustered in and
around greater Sydney
Of these services, 32 services reported to accommodate people with
YOD and provided sufficient, reliable data

27. • YOD-integrating and YOD-accommodating services:
Most services clustered in and
around greater Sydney
0
1
2
3
4
5
6
7
8
9
10
Aged Day
Care
Dementia Day
Care
Dementia
Social Support
Group social
support for
people with
dementia and
and their
carers
Social support
for special
needs groups
(inc. CALD)
Other form of
social support
(not dementia
specific)
Dementia
specific
residential
care
Case
Management
Respite for
Carers
In-home
support
(packaged
care)
Mainstream services with YOD clients

28. • YOD-integrating and YOD-accommodating services – KEY POINTS:
– Mostly cater for very small numbers of clients with YOD
– Awareness around problems of integration with older clients
– Varying ability to tailor services to the unique needs of younger people with
dementia
– Little knowledge of or access to YOD specific information and resources
– Varying self-evaluated levels of knowledge about unique YOD needs, often
unrelated to reported availability of resources
– Similar concerns as YOD-specific services about staff matching, training and
expertise
– Concerns and some confusion around YOD eligibility for service
– Services most confident in their ability to support YOD attribute flexibility
and service appropriateness to a general person-centred approach