Renewed Hope on World Alzheimer's Day

I haven't written a newsletter since June 7th, because I was loosing my belief in my ability to influence solutions to reduce the stigma of dementia and enable the dementia community to choose how to live their best lives.

But, during World Alzheimer's Month and on #WorldAlzheimerDay I am happy to say I am back with a renewed hope that it is indeed #TimeToActOnDementia.

This is because I have found a fantastic group of people out there who are making a real meaningful difference in the lives of people diagnosed and living with dementia, their families and friends.

The release of yesterdays World Alzheimer's Report by Paola Barbarino the CEO of Alzheimer's Disease International on the attitudes and stigma of dementia was sobering! It highlighted just how much needs to be overcome to dispel the many myths around dementia that so many in our society have.

However, what filled me with hope was the many people recognising the damage the negative narrative and ignorance around dementia is causing. But, more importantly, there is an emerging global group of people who are finding their voices to support change together, so people diagnosed and living with dementia, their familes and friends can have the same human rights as their peers with other disabilities and chronic life limiting diseases.

My collaboration with 21 people to publish the CareGiver's Advocate, A Complete Guide to Support and Resources, assembled by Debbie Compton showed me that providing solutions to carers was a really effective approach to provide practical support. It reached #1 in all six categories on Amazon in the US, #1 in Australia and Canada, and earned bestseller status in the UK. (Top 50) It was also named Best New Release on Amazon.  The format created by Laura Di Franco from Brave Healer Productions made it easy to read and use. Each of us wrote a short story illustrating a topic we believed could provide support and then shared actionable ways to solve the issue based on our personal experiences. Being a person with a very logical mind and a scientist I hadn't written a story since I was at primary school. Thank you Laura Di Franco for teaching me how to write again, I loved it. Thank you fellow authors for sharing your stories and your practical advice.

The decision from NICE not to approve Lecanemab for Alzheimer's patients gave me faith in our system. The regulatory approval by the MHRA validated this exciting scientific breakthrough. The decision not to allow its prescription on the NHS demonstrated effective decisions are made when experts focus on data and we remove the positive spin created by so many charitable, academic, clinical institutions and the media. I am looking forward to seeing the scientific advancements to identify rapid and cost effective diagnostic that identify who can safely take this medicine and an understanding of the risks and benefits when it is taken longer than 18 months.

The open discussions within my own borough and county about how to protect our dementia community from spending their money on unnecessary private consultations and screening to see if they are one of the lucky 30% of recently diagnosed Alzheimers patients who fit the profile to safely receive Lecanemab was refreshing. As are the simple solutions that are being created through our Charnwood Action and Health and Well Being Groups through people working together across organisations to implement them.

The presentation on "Challenging dementia stigma in popular culture:why we need media guideline" at yesterdays launch of the World Alzheimer Report 2024 by Lee-Fay Low is finally starting an open discussion to enable a balanced representation in the media, where everybody has a voice. This coupled with an opportunity created by #OpenTheDoor for an ethical debate on the Long GoodBye advert from the Alzheimer's Society next Tuesday involving myself and Maxine Linnell gives me faith that there is a global appetite to ensure everybody's voices are heard. Particularly important when this advert is being rebroadcasted on TV, radio and at the cinema and Alzheimer's Research Advert Change the Ending is now being rebrodcasted too!

Lastly I wanted to highlight my amazing visit to Bali. So many positive things, I don't quite know where to start.

Perhaps the most striking was the value the Balinese culture puts on their older adults versus the attitudes of western societies. I think we need to learn an awful lot about care, empathy and compassion from them and other cultures who respect and empower their older adults to continue to contribute to their communities.

Then there were the amazing people I met at the conference, who all gave me renewed vigour, energy and laughter to keep striving to make positive change happen. Particular thanks to the conference organisers, Craig A Hooper and Ferry Felton Godfre and all the wonderful people I met, too many to list, but you know who you are.

I have kept the thing that gives me the biggest hope till last. It was my visit to Aashaya Jasri Resort in Bali, established by Community Home Australia. Dr Rodney Jilek MAICD, Nicole Smith , Craig A Hooper. They have created something magical for the dementia community to experience the health and well-being benefits we all know we get from a good holiday, alongside those specific to the dementia community shown on our MindforYou holidays. Its wonderful to finally see somebody creating the dementia inclusive resort I have been banging on about for the last decade, when I founded MindforYou .

Take a look at the video to see what a dementia inclusive resort can look like.

There is no doubt the dementia community want to travel and go on holidays. Since March there have been over 5500 views of my free e-book Holidaying with Dementia Your 10 Step Approach.

Let's hope this is the first of many resorts that welcome not just the dementia community, but others with invisible disabilities through their doors with open arms.

Anybody else out there feeling like in #WorldAlzheimersMonth?

There is certainly a long way to go, to change the attitudes towards dementia and enable and empower everybody in the dementia community to live their best lives.

But do you feel, like me, that the quote from the anthroplogist Margaret Mead, "Never doubt that a small group of thougthful, committed citizens can change the world. Indeed, it is the only thing that ever has." is something that is achieveable for dementia?

Its certainly not going to be a quick fix, but perhaps one step is for each of us to do our bit is to create a culture where the voices and feeling of people diagnosed with dementia are listened to, acknowledged and trusted to the same degree as their families, friends and the professionals who support them.

If you would like to take advantage of our free 30 minute travel advice consultation then please complete the form on our website and make a booking for a phone or video call.

Take a look at our free booklet to enable and empower the dementia community to go on that well deserved holiday “Holidaying with Dementia – Your 10-Step Approach”

Share your hints, tips and frustrations with your peers by joining our private Facebook Group Dementia Travel and Tourism

Take a listen to our latest guest, Adriane Berg Host Creator The Ageless Traveler Podcast and Blog , from Ageless Traveler on all inclusive solutions podcast with my co-host Dr Tom Adler

Purchase your copy of The Caregivers Advocate on Monday 23rd September on my website