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Navigating Dementia: Insights from Dementia Alliance International

Navigating Dementia: Insights from Dementia Alliance International 


Dementia currently affects over 55 million people worldwide, with nearly 10 million new cases each year.* What happens when you’re diagnosed with dementia? How can you still live a meaningful life? In a recent episode of 'Comforting Closure - Conversations with a Death Doula,' host Traci Arieli discusses these questions with Kate Swaffer from Dementia Alliance International. Kate’s journey with young-onset dementia offers invaluable information about support systems and attitudes that can make a world of difference. 


Understanding Dementia 

Dementia is a significant health challenge, impacting not only those diagnosed but also their families and caregivers. Kate Swaffer's story illustrates the importance of seeing the symptoms that come with dementia as disabilities rather than a death sentence. 

Key Takeaways from the Podcast: 

  1. Demand Support: When diagnosed with dementia, it is vital to demand support to maintain quality of life. Kate shares how she benefited from early speech therapy and disability support at her university, which helped her continue studying.. 

  1. Managing Grief: Grief is a profound part of the dementia journey. Kate talks about the ongoing grief experienced with each cognitive decline and the importance of grief support for those living with dementia. 

  1. Peer-to-Peer Support: Dementia Alliance International provides weekly peer support groups that empower individuals with dementia, helping them regain joy and purpose in their lives. This support is often a lifeline, offering a space to share experiences and build resilience. 


What is Life Expectancy with Dementia?  

Life expectancy with dementia varies greatly depending on the type and progression of the disease. Kate's experience shows that early support and a proactive approach, including rehabilitation and lifestyle changes, can significantly improve quality of life. Despite the challenges, individuals can still lead meaningful lives with proper support. 


What reactions can you expect of a Person with Dementia? 

The behavior of a person with dementia can include confusion, agitation, and withdrawal from social interactions. Kate highlights that these behaviors are not always part of the disease process. The changes or reactions (some call this behaviors) a person with dementia experiences can include confusion, agitation, and withdrawal from social interactions. Kate highlights that these behaviors are not always part of the disease process and stresses the importance of understanding and patience, and of issues such as inclusion and dementia-enabling design. Expressions of agitation or anger, and isolation may be due to the loss of autonomy, unsupported grief and loss, and not having family and friend support you. She shares a story of how early speech therapy helped her maintain communication skills, which significantly improved her interactions and quality of life. 


Empowering Change 

Kate Swaffer’s stories highlight the need for a holistic approach to dementia care, focusing on support and empowerment rather than just seeking a cure. Her experiences and activism demonstrate the importance of demanding proper support and recognizing dementia symptoms as disabilities that require extra care. 

For more information and support resources, visit Dementia Alliance International at and Kate Swaffer’s website at



  • Book: "What the Hell Happened to My Brain?" by Kate Swaffer 


*World Health Organization. "Dementia." World Health Organization, 15 Mar. 2023,


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