In this Q&A, Inside Ageing (IA) speaks with Sarah Yeates, CEO of Caladenia Dementia Care, who provides insight into the services they offer to support those living with younger onset dementia. Ms Yeates has worked in the field of dementia care for more than 25 years.
As reported last week as part of Dementia Action Week, new research has revealed that an estimated 28,000 Australians are living with younger onset dementia – often with dependant children – and in the community with limited support.
IA: Hi Sarah, your comment caught our eye with respect to the service you offer for families impacted by younger onset dementia. You mention it is a new offering from Caladenia – what can you tell us about it?
Sarah: At several network meetings recently, the lack of services and supports for people with younger onset dementia (YOD) and those who care for them was mentioned. Particularly lacking was access to carer support groups that were specifically for people caring for someone with YOD. With the move over the last 20 months to Zoom and other online services, it was easy for Caladenia to open a Zoom room and make an online space for these carers to meet. We advertised the group through Dementia Australia, and through the Dementia Knowledge Network, and the first meeting had 4 participants. 5 weeks later there is a regular attendance of 8 carers.
IA: Last week was Dementia Action Week and out of the many dementia stories we carried, the one that seemed to resonate with a lot of people was to do with younger onset dementia. I think what surprised us was not just the high number of people with younger onset dementia, (about 1 in 10 cases), but the fact that the majority live in the community with families and many receive limited or no support. Do you see organisations like yours expanding to fill this need?
Sarah: Caladenia does provide social and recreational programs for people living with younger onset dementia, these include men’s groups, lunches out and general social programs. But there is a real need for more programs that are specifically responsive to the needs of younger people. The onsite group programs may suit some people, but certainly do not suit the needs of all. Special interest groups that meet the individual goals of younger people are needed in local communities across Australia. The NDIS does fund people with YOD to attend social programs, but finding a suitable and appropriate one can be a challenge.
IA: We understand Caladenia provides a range of support services, including social support sessions for people to come together. How have you navigated this during the pandemic and is a more online and virtual approach working to support families of those living with dementia? Do you think you will continue many of the virtual services once restrictions lift or are the social offerings best?
Sarah: Like many services funded social support groups were instructed to cease face to face operations and instead provide remote support via telephone, online or other innovative methods. Our service has been providing Activity Packs weekly now since March 2020, these are delivered to our clients and also provided online for download on our website at no charge. These have been downloaded in the UK, the US, Canada, India and South Africa! We run “Super Social Zoom” each afternoon for 2 hours, and individual facetime or Zoom chats with clients to give family carers a break. Carers can actually book a time for our staff to call if they have an appointment scheduled. Our staff do regular deliveries of craft and cooking projects, and a daily email goes out to over 200 people with news, virtual activities, and a joke of the day gets posted to our YouTube Channel with a link in the email. For those who don’t have access to technology we are making regular phone calls and have produced a DVD of staff doing various activities to play at home.
We have decided we will continue some version of the online activities – they will be a great way to keep people connected while they are in respite, on holidays or unable to attend. The Activity Packs will definitely continue in some form, and we will continue sharing our resources and activities on YouTube for others to use where appropriate.
IA: We’ve seen some new technology released this year to help those caring for people living with dementia in the context of residential aged care. Are you seeing any new technology that you feel can really make a difference at the community or family level?
Sarah: I have seen some terrific innovations, including the interactive Tovertable (below) and the Motitech Bike/video system, and I know that there are new technologies based around music, virtual reality and many others. If a facility can afford some of the tech, and the staff time to ensure residents engage with the tech – then it definitely has great opportunity to enrich people’s lives in residential care. I do feel that nothing can possibly take the place of investment in the time for genuine face to face time with family and staff.
IA: As an organisation that has been around for 40 years working in the Dementia space you would be in a unique position to comment on both the incidence of the disease and its impact on communities and society. What can you tell us about what you’re seeing and how is your service evolving to help deal with it?
Sarah: Dementia used to be only for older people. It was considered a second childhood, or that the person was inevitably senile. We have certainly come a long way since then. As a dementia specific service it has been interesting to see the funding evolve around the growing needs – for instance in the state HACC funding model, it was recognised that Dementia was a Health Priority and was funded accordingly and at a higher rate than “core” services. Unfortunately with the move to federal funding dementia is now considered “core business for aged care providers” and not recognised as a specialist area of work. As a dementia specific service sitting in the model we are considered “entry level” even though we are recognised as a leader in community based dementia care in our region. I feel that organisations are choosing to embrace the funding model rather than the need, and as a consequence dementia services are either lumped in with aged care – or are few and far between.
IA: Funding: are you seeing the current funding model working for younger families?
Sarah: Honestly? I don’t think the current funding for community care is working for anyone living with dementia. The referral pathways are delineated depending on your age rather that your diagnosis, and although older people entering the aged care system are more likely to be referred to an appropriate service, younger people are often left after diagnosis with little or no offer of services. Dementia Australia does a great job as the peak body providing information and education, but there is no referral pathway for a person diagnosed with YOD. Carers often have to do much of the leg work themselves, and services specifically suited to the needs of people with YOD are not provided in every area.
IA: Do you think aged care providers should be doing more to expand services to help families living with younger onset dementia? Is there an opportunity to expand into this area and potentially partner with organisations such as yours?
Sarah: Yes – I think there is a growing need for services that are designed to meet the needs of younger people, the expectation that people diagnosed with younger onset dementia can use services and supports designed to meet the needs of much older people is unrealistic.
Caladenia and VMCH founded the Dementia Knowledge Network 18 months ago to begin work on breaking down some of the artificial barriers that are the construct of funding streams or geographical boundaries, and draw together like minded professionals (both from funded organisations, NFP’s, Social Enterprise and Private Business) carers, people living with dementia and other community members to help with the flow of information, and to address service gaps to improve the outcomes for all people living with dementia.
Knowledge Network https://caladenia.wixsite.com/knowledgenetwork
Caladenia Professional YouTube Channel https://www.youtube.com/channel/UCSAxu6_eSRTjXU8kSyK4oOw
Caladenia Client and Community YouTube Channel https://www.youtube.com/channel/UCBwG9-2y_EIFg3ZVX_pLu_g
Activity packs to download https://www.caladenia.com.au/downloads-1