Transforming dementia narratives: A glimpse into rementia
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Dementia affects over 400,000 Australians, profoundly impacting individuals and families. Traditionally, post-diagnostic support has not adequately equipped people to embrace life beyond diagnosis.
However, new models have emerged to empower dementia care.
The Rementia Together Retreat, funded by the Australian Government and led by Group Homes Australia, signifies a groundbreaking shift from limiting perceptions of dementia to rediscovering purpose and meaning. These immersive retreats gather recently diagnosed individuals and loved ones to share experiences and acquire practical tools to thrive after diagnosis.
We spoke with Tamar Krebs, Founder and Executive Director of Group Homes Australia, to learn more about how these retreats are transforming the journey for Australians living with dementia.
After an extensive entrepreneurial journey, Tamar established Group Homes Australia in 2011 to shake up aged care through small-scale, relationship-based models. With a deep passion for empowering those living with dementia, she now leads the creation of innovative programs like the Rementia Together Retreat.
HCC: The Rementia Together Retreat introduces a unique perspective on dementia care. Could you share some specific examples of how the retreat’s approach differs from traditional care models and how it aims to redefine the journey of those living with dementia?
Tamar: Group Homes Australia’s Rementia Together Retreat is a 5-day retreat program for people recently diagnosed with dementia and their chosen ‘support partner’ (loved one, friend, family member). It aims to equip people with the emotional, psychological, and practical skills to live a fulfilling and empowered life after they are diagnosed.
More than 400,000 Australians are living with dementia today, but they are rarely offered the essential support needed to adapt to a post-diagnosis dementia life – even though the majority will live in their own homes for years. Our Rementia Together Retreat aims to help people live well with dementia in the community for longer.
The Rementia Together Retreat is held in the comfort of a GHA home, creating an intimate setting for five individuals recently diagnosed with dementia and their supportive partners. This unique gathering serves as a platform for open conversations about embracing life with dementia.
Five couples converge to share their personal journeys in navigating the early stages of dementia. The retreat offers a rich tapestry of insights as participants engage with various experts and immerse themselves in purposeful sessions. These sessions are carefully designed to foster understanding of the changes that accompany a dementia diagnosis and provide practical tools and strategies.
The deliberate choice to keep the group small enhances the personal nature of the retreat, allowing our dedicated team to offer information tailored to the specific needs of each participant. Our commitment to individualized care strategies remains paramount, recognizing that each person living with dementia is a unique individual with distinct needs.
The Rementia Together Retreat stands as a testament to the power of shared experiences, fostering a supportive community where a personalized approach and mutual understanding flourish.
HCC: Could you provide insights into how this idea was conceptualised and how it is translated into tangible experiences within the retreat?
Tamar: The Rementia Together Retreat signifies a groundbreaking shift in post-diagnostic care delivery. Our approach involves redefining the narrative of ‘dementia,’ a term rooted in Latin meaning ‘without the mind,’ to ‘rementia,’ signifying ‘return to the mind.’ We embark on a journey with each individual, guiding them towards rediscovering their unique sense of self and, consequently, experiencing rementia.
This transformative perspective prompts us to move away from discussions centred on limitations post-diagnosis. Instead, we focus on unveiling the immense potential within each person and identifying what brings them purpose. The program’s inception was a collaborative effort, co-designed by Group Homes Australia and individuals living with dementia, all under the mentorship of the esteemed dementia researcher, Dr Meredith Gresham. Together, we aspire to redefine and enrich the post-diagnostic care experience, empowering individuals to embrace their capabilities and reclaim their sense of self.
HCC: Shifting the focus from “dementia” to “rementia” sounds transformative. Could you discuss how this change in narrative impacts not only the individuals participating but also their families and caregivers?
Tamar: Rementia is an innovative concept pioneered by Tom Kitwood in 1996, which revolutionised our understanding of dementia and highlighted the capacity for improvement in individuals living with this condition. It is a term that means ‘returning to the brain’. We want Australians to understand that a diagnosis of dementia should be followed by a program of support that offers them a path of hope and purpose through strategies that focus on the skills and strengths of the person living with dementia.
The RTR is all about changing the way we support people to thrive beyond their diagnosis. It celebrates the importance of social connection, independence, and personal agency. By opening the door to progress, it gives individuals and their families a path forward, rather than the feeling of grief that usually accompanies a diagnosis. Often families initially feel helpless after receiving a diagnosis, and the Rementia Together Retreat gives families and their support people the tools to live life to the fullest with a diagnosis. If we change the script on how we approach dementia diagnosis and the steps following, this can actually be an opportunity to create moments that matter in the individual and their families’ lives.
HCC: The Rementia Together Retreat has been designed to equip participants with emotional, psychological, and practical skills for empowered living. Can you elaborate on some of the specific activities or methodologies used during the retreat that contribute to these outcomes?
During the retreats, we have a range of experts who come to the home and explore what will bring individuals closer to their sense of self, to foster a sense of purpose. It’s so important to understand people’s life stories, so we can understand their needs and complement them.
The retreat offers a range of valuable tools and skills, including informative sessions from a neurologist to address medical and diagnostic concerns, guidance from an occupational therapist on home adjustments, insights from a GP on the impact of diet, exercise, and sleep on mood and brain health, assistance from financial planners to help individuals and families prepare for the next phase of life, and even candid discussions on traditionally sensitive topics like sex and intimacy after diagnosis to provide support.
Offering sessions that may not be offered in more traditional aged care programs is important, as topics such as sex and intimacy are still very pertinent to a person who has been diagnosed with dementia. Communication often becomes a bit trickier once diagnosed so this is a big focus for the partners. Nothing is too big or small of a topic to be discussed. We don’t want people to become spectators in their own lives and giving them these tangible tools really empowers them with a way forward. The changes that you notice pre- and post-RTR is amazing.
HCC: Looking ahead, what aspirations do you have for the Rementia Together Retreat and its potential to drive meaningful change in dementia care practices? How do you see the program evolving to meet the evolving needs of individuals living with dementia and their support networks?
We are confident that individuals worldwide, newly diagnosed with dementia, will actively seek the transformative experience offered by the Rementia Together Retreat. With 33 retreats scheduled over the next three years in both Sydney and rural NSW, our vision is to make Rementia Together Retreats accessible to individuals across Australia.
Recently, we introduced the Respite Reimagined (R&R) program, a novel initiative designed to empower individuals living with dementia and their support partners. This program serves as a unique opportunity for participants to reset and acquire new skills, enabling them to stay at home for as long as possible. Through R&R, those with dementia will stay at one of our GHA homes for a short stay, finding purpose and meaning in their day to day. The short stay ranging from day-stays (9 am to 6 pm) to weekend stays, extending up to a 21-day period.
For support partners, R&R offers a precious respite interval for rejuvenation, allowing them to take a breath, pause, and engage in self-care. Upon the return home of the person living with dementia after experiencing R&R, the support person is well-prepared to re-engage with renewed strategies, tools, and a refreshed skill set.
Both the Rementia Together Retreat and R&R are founded on a “one size fits one approach,” acknowledging the diverse needs of everyone. Our commitment is to understand the unique life story of those seeking support from GHA, aiming to provide tailored information and tools that empower them to continue living at home. This marks the future of dementia care, where individuals find purpose and independence, supported by a safety net for their families and support networks.
Ritchelle is a Content Producer for Healthcare Channel, Australia’s premier resource of information for healthcare.
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