87 The dementia doula difference – earlier conversations paving a connected and united way forward

<h3></h3> Research suggests that specialised end-of-life care in dementia is unequal or non-existent when compared with other life-limiting illnesses. There is an inconsistent approach to ensuring end-of-life plans of someone with dementia are in place or enacted. The non-clinical Dementia Doula role was created to prepare families impacted by dementia earlier for the challenges they will likely face over the 10+ years ahead. This is in contrast to waiting for a catastrophic event to occur which is currently the case. A Dementia Doula is by the side of families throughout the trajectory and ensures as someone moves closer to end of life, highly emotive family are informed and prepared for time critical decision making and when timely palliative care practices are required. Engaging with a Dementia Doula puts future decision making back in the hands of families with a coordinated approach in place. When done early enough, the person with dementia has opportunity to be involved in informing and capturing their own wishes for what they want their future to look like. When the end-of-life stage occurs, a Dementia Doula is still with family, providing guidance on enacting the previously created plan. The advance care plan ensures end-of-life care practices are implemented earlier avoiding the risk of unnecessary short or long term hospital admissions. By having a more formalised plan in place, one that started as an informal conversation years earlier, means when end-of-life is imminent, everyone including families, health professionals and staff are all on the same page. Dementia Doula’s ensure every conversation with a family counts. Whether informal or formal in nature, advance care planning is not a moment in time or a page of wishes, it is something that gets captured today and evolves throughout the dementia journey. It is a conversation that ensures people with dementia no longer die alone surrounded by a lot of people, with families feeling more supported every step of the way. Feedback from family: … our dad died last month and we’re so proud of how he went and how we went in his journey of dementia, we’ve all reflected on the value of the deep and purposeful discussions we had with you (Dementia Doula) along the way. That time you spent with us really prepared us for the stages of Dad’s decline – and boosted our ability to support him and to act as his advocates, right until the end…