How can we make the most of life with dementia?
Dementia is often depicted as a tragedy.
We believe it is healthy to acknowledge the multitude of feelings experienced when we, or someone we love, is diagnosed with dementia.
We believe it is essential to support research aimed at preventing dementia.
We also believe that if we, or someone we love, is diagnosed with dementia it's important to think about how we can make the most of life.
This page is dedicated to those who are committed to making the most of life with dementia.
NOTE: We do not provide advice; we share stories. If you need advice, please call the National Dementia Helpline on 1800 100 500 (Australia) or your local dementia support agency.
Dementia Adventure - in the UK
Dementia Adventure, based in the United Kingdom, supports people living with dementia to make the most of life.
vision: a society in which people with dementia are fully included, enjoying meaningful dementia-inclusive experiences that are supported, not limited, by their condition.
mission: to make adventure accessible to everyone living with or impacted by dementia, enabling them to connect with nature, themselves, and their communities through experiences that foster joy, confidence, and a sense of possibility.
approach: with the right support, anything is possible.
impact: huge - 2024 impact report coming soon!
research: our evidence-led research underpins all that we do to benefit those living with dementia
partners: with like-minded organisations, we benefit more people living with dementia.
Dementia Adventure CEO Fiona Petit with Bill Yeates in London
Bill's story
Bill Yeates was diagnosed with Alzheimer’s (a common form of dementia) in 2019. It wasn’t his first experience with dementia. His father died from this condition in 2012. Bill said, “when I was diagnosed I remembered my father's experience, I thought my life was over and really felt sorry for myself. I went into a period of darkness”.
Somehow, Bill managed to gather enough drive to join some mates for tour to Japan. He didn't tell them about his diagnosis. He was embarrassed by it. He wanted his mates to see him as the Bill-they-always-knew and believed the tour would be his “last hurrah”. At that time, Bill believed that he would gradually fade away, just as his father had done.
While Bill was touring with his mates, he experienced an inner shift. He discovered that he could actually enjoy moments, and could even laugh!
Bill could see that life was worth fighting for, that he could make the most of what was left of his life.
Find out more about Bill here.
Kay and Richard's story
When Kay's husband, Richard, was diagnosed with Alzheimer's & vascular dementia, the couple was told that Richard's dementia would probably progress rapidly. Kay recalls the geriatrician's advice, “get your affairs in order, it's likely that Richard will have severe dementia in 12-months”.
In a matter-of-fact, practical type of mindset, Kay asked Richard, “if you only had 12-months of good thinking left, what would you want to do?”. This prompted Richard to think about what was important to him. “He wanted to go to Iceland, he wanted to return to the family cottage (that his parents built) in Canada, and he wanted to spend as much time as possible with family and friends”, said Kay.
And that's what they did. But it wasn't just 1 year. They prioritised time for children and grandchildren, went to the cottage in Canada, and visited relatives internationally for 6 years.after that fateful prediction by the geriatrician.
Kay's Overall Approach to Support shows some guiding principles and practical steps used to support Richard.
Kay & Richard's overall story is best told through The Man She Married
Letter to Dad - When Dementia Enters the Picture
Kay and her Dad enjoying the lake (November, 2024)
Kay's father was devasted when he told her he had been diagnosed with dementia, so she tried to help by writing a letter (below)
Hi Dad,
I’ve been reflecting on our conversation about lessons I learned from Richard’s experience with dementia; the main lessons are:
Remember you are still highly capable, and completely the man we know and love.
The only domain which I have noticed being impacted is some short term memory. You will continue to achieve much in life; it’s just that you can’t multi-task. It’s important that verbal instructions you receive should be limited to one concept (while you’re not engaged in another activity), and if you can write it down, do so.
ASAP … minimise stress and maximise joy (as stress is associated with quicker worsening of dementia). The attached doc, “Overall Approach to Support” might prompt a consideration. It’s just a 1-pager, plus a sample of Richard’s from 2 years ago. I’m happy to help you, if you’d like that.
Document relevant info – I believe you could easily complete the “Info for Geriatrician Consultations”, which includes:
- “Summary of Health & Lifestyle Information” (page 1); this can also be used as a 1-pager for any medical or aged care consultation
- “What’s been happening”, which notes areas which most geriatricians (and others) would like to keep an eye on (pages 2-4). It’s up to you whether or not you want to use it, but it may be of interest for you to monitor your own perception of changes – including improvements that may occur as a result of medication + Souvenaid + minimise stress + maximise joy.
- “Blank Weekly Schedule” (page 5) is a useful tool for planning, and for letting the geriatrician (and others) know how you spend your time (and where supports might be helpful).
(Again, I’m happy to help you with documentation, if you’d like that).
Feel free to let me know if you’d like more info or want anything adapted.
Love
Kay
Alan & Karen's story
Photo by Alex Kornhuber, Atlantic Fellow for Equity in Brain Health
Karen Young writes about life with her husband, Alan.
For over forty years, Alan has and will continue to be my best friend and soul mate. With our children grown up, we planned adventures, to grow old disgracefully, maybe going interrailing around Europe with our backpacks, living life spontaneously.
However, our life went in a different direction when in 2019, Alan received a diagnosis of Parkinson’s Disease, which explained a lot of the changes in Alan, but did not explain his cognitive decline, that was until 2022 when he was diagnosed with Lewy body dementia.
Seeing the wonderful, intelligent, articulate, easy-going man I love who gives amazing hugs with his cheeky smile change and deteriorate both cognitively and physically as his brain dies is heartbreaking.
Being a caregiver is a journey of unconditional love and continual adjustment. Each day brings new challenges, some expected, many unforeseen. We are on this road of dementia, where there is no clear road map.
Dementia means much more than simply managing Alan’s daily needs, it is a profound emotional, mental, and physical commitment that requires patience, love, and resilience, sometimes of which I find is in short supply. A commitment to do things better the next day and to say sorry is important.