Younger Onset Dementia | Caroline Grogan, Centacare

Carers play a pivotal role in supporting people living with dementia and yet they often don’t receive enough support for what can be a very challenging responsibility. This week, we hear from Caroline Grogan about what support community services can offer and their Younger Onset Dementia Program.

 What is your current role and what does this entail?

“I am part of a team that are committed to providing support services to carers of people living with dementia and frail elderly people, through our Share the Care Program . It offers educational workshops, coffee catch-ups, newsletters, respite, counselling and is linked with the ‘Memory Café’ initiative.

What role do community services play in helping care for people living with dementia and their families?

Community services offer qualified, flexible support appropriate for people living with dementia and their care partners. Our role is dependent on the level of care the person would like, for example: services can assist with practical support, offering domestic assistance, personal care and in-home support. This can be on a daily, weekly or fortnightly basis, depending on the needs and wants of the person.

Other support can be in the form of respite, community engagement and providing information.

We can offer a range of respite options for someone living with dementia. Different forms of respite include:

• ‘Staying Well and Active Program’, which has been modified from the day respite model of care, but offers a more personalised and flexible program for people living with dementia.
• ‘24/7 Overnight Cottage’, a low care ‘home away from home, offering flexible stays for people, from one night to a month.

Community engagement is important for people at every stage of life. At Centacare, we believe intergenerational interaction and wider community involvement for people living with dementia is important to maintain  a healthy life. To help with this, we support clients to volunteer, such as with ‘meals on wheels’ or at Bunnings. We are currently creating a ’community garden’ in partnership with a local school. This will enable children and clients to grow vegetables, herbs and look after some chickens together, all towards fostering community inclusion.

Providing information to clients and carers is important and can be delicate. Navigating the complex system and answering several assessors’ questions can be confusing for both client and carers. Our services can support people with clear, intuitive information to assist with the process. This support can enable people to access the most appropriate service based on the person’s preferences, goals and life history.

 Why is it important to provide support to carers of people living with dementia?

Over 2.7 million carers provide support to people in the community. Carers play a pivotal role in supporting people with dementia to maintain health and wellbeing. As humans we are interdependent upon each other, when one is affected it normally impacts those around them. This can be seen with dementia, as partners, children, parents, friends and colleagues will all be affected in some way.

Carers support people living with dementia to be more independent and stay in their own home longer. Given their significant role, the need to offer support to carers is all the more important. Especially after the results of the 2017 Carers Queensland survey that collected data on carers’ quality of life. It highlighted feelings of isolation, hopelessness, loneliness, poor physical health, anxiety, depression and carer exclusion. This is especially concerning given some of the aforementioned feelings are risk factors for suicide in the overall population, without the additional stress of being a carer.

Furthermore, 53% are dissatisfied with their ability to connect with carers, family and friends. In the words of one survey respondent: “If the Commonwealth wants people to stay at home longer, then carer fatigue must be addressed, to meet the need for the carer to relinquish care temporarily without being consumed with guilt and anguish because of the conditions, environment and standard of care provided to the recipient when they are in the facility”.

You’ll be speaking about the Young Onset Dementia Program at the National Dementia Conference, what has this program entailed?

This successful Centacare program was developed because of the need to enable people living with dementia to be involved in their local community and to stay engaged in productive and valued activities. Most importantly, this is aligned with a person’s life history, talents and interests. The program involves small group outings, volunteering opportunities, supporting independence and maintaining community engagement.

Day-centre services targeted towards the elderly may not be suitable for someone younger, such as a 50 year old man who has just been diagnosed with dementia. An example as to how the Younger Onset Dementia program has helped, is via the establishment of a ‘Blokes Group’. This group meets once or twice a week to go fishing, bush walking, go out for lunch or work together in the garden. Centacare is very fortunate in having well-trained, experienced staff who can assist and support, without limiting a person’s independence.

The men have all grown in confidence or rather their confidence has been renewed and identity regained, being seen as more than just ‘someone with dementia’. The dementia is still there, but so is their identity, and they have an opportunity to live happy lives with their dementia. I will never forget a daughter coming to us and saying “thank-you, because now I feel I have my father back”. Her father came to us withdrawn and hesitant, but now through our program, he is often excited to volunteer with ‘meals on wheels’ and to show staff an even better fishing spot for next time.

Unfortunately, our society can sometimes link people’s worth to economic contribution. When people have so much more to offer, we encourage people living with dementia to continue to be actively involved in their communities and networks. We also have a lot to learn from and with them.

You have launched a number of other innovative programs. In your opinion, which of these has been most successful and has had the most impact?

At Centacare, we have been very busy developing and maintaining innovative programs to support carers and people living with dementia. These include our ‘Music program’, encouraging the musical talents of clients living with dementia. Our ‘Share the Care’ support for carers and our ‘Memory Café’ initiatives provide the opportunity for kind, helpful communication in a welcoming location, allowing people to relax, learn and connect. I have been blessed to be involved in each of these projects, from offering one-on-one support to carers, sharing education about dementia to carers, and helping to open several ‘Memory Cafés’ to promote Dementia Friendly Communities.

It is hard to say which is most successful, as measuring impact is very subjective, especially when it comes to people’s quality of life and wellbeing. It is not something that is easily quantifiable by standard measuring tools. Personally, the ‘Music program’ has to be a favorite. Seeing people find or renew a connection through song, suddenly not being able to sit still and wanting to dance or pick up a guitar, after over a decade of not playing one, and remembering old beloved songs is an amazing experience. Sharing music renews the mind, body and soul in a very special way.

What are you most looking forward to at the National Dementia Conference?

I am mindful to hear and discuss how we can all keep advocating for people’s fundamental rights in the wake of complex policy changes and the increasing prevalence of dementia in Australian society.