Tom Gauci, Holly Markwell
Dementia Support Australia, HammondCare
“The ache for home lives in all of us. The safe place where we can go as we are and not be questioned.” Maya Angelou
If you have ever contemplated what it might be like to have dementia, you may well have reflected on a desire to stay at home and not enter residential care. But the reality for carers of people living with dementia is that life at home is changed in ways that were unimaginable prior to the diagnosis. The journey from spouse or adult child to carer can leave people feeling lonely and isolated, unsure of how to navigate services or respond to the many changes the person is going through. How we support family carers to navigate this changing landscape is a key component of Dementia Support Australia’s Staying at Home (SAH) program. SAH is a carer well-being and respite retreat for people living with dementia and their family carers. The program empowers family carers with the knowledge, tools, and confidence to navigate changes in their caring role. Guests living with dementia are offered a gentle and supported introduction to respite, with opportunities to connect with others who have similar lived experiences.
Developed in recognition of the barriers people living with dementia and their family carers face when accessing respite services, the program was a beacon of hope for Chris and Suzie. Their participation in the SAH program resulted in many changes and insights, improving the well-being of both. Suzie’s sensitivity to loud noises was causing considerable distress for both parties. From in-program discussions, Chris realised the sensitivity was a result of sensory changes linked to dementia, compounded by her hearing loss.
Chris shared “I learnt a lot about how to communicate better with Suzie. I realised my words overwhelmed her, so I started to use non-verbal cues, reducing the number of words, and discovering new ways to connect.”
Chris also began recognising when Suzie needed reassurance and extra attention. If he saw her getting anxious during a noisy conversation, Chris gently guided her to a quieter spot for coffee, something they both loved. During their participation, Suzie tried activities tailored to bring her joy. An unexpected highlight was when she embraced a robotic dog, Sammy, talking to it in French. Suzie was genuinely touched by the offer from the team to take Sammy home with her.
Back at home, Suzie started painting, and they tried papier-mâché together. Suzie even played a word game accompanied by Sammy, radiating happiness. The program gave Chris and Suzie a new way to connect and find happiness in everyday moments.
Over the past 18 months, Dementia Support Australia has delivered more than 35 SAH programs nationally in all states and territories. The sense of community, shared experience and social connection has been integral to the success of the program, with one carer commenting, “I felt I was in a safe place where I didn’t need to put on a brave face to everyone. We were with people who understood the journey we are on”.
The Department of Health and Aged Care made additional funding available, with 12 new providers delivering this program across Australia, greatly increasing access to this innovative carer well-being and respite program. More information is available on the DSA website.
*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.