GUEST COLUMN: Top 5 things you really need to know to know after a dementia diagnosis

One of the biggest challenges for families when a loved one is newly diagnosed with dementia – and indeed throughout the person’s life with dementia – is getting the right information when it's needed.

Generally, families either report information overload because diagnosing services have provided leaflets on every conceivable topic relating to dementia, or that they simply didn’t know (because they weren’t told or gave up looking through all the leaflets) about key organisations that could provide them with invaluable support.

Organisations like Dementia UK with their Admiral Nurses and Dementia Carers Count and TIDE (Together in Dementia Everyday) with their family carer support.

Prioritising information

Printed resources will always be important, especially for the many people who struggle to access content digitally, but prioritisation of these – effectively creating a filing system – is vital.

Even when you’re providing links to digital resources, supporting individuals and families to navigate through these to find the most pressing priorities is key to how useful what you are sharing will be.

What do I wish we’d known when my dad was alive?

My passion for resource-sharing was the focus of my presentation at the Alzheimer’s and Dementia Show in 2024.

‘What I wish I’d known when my dad was alive’ was all about key information I believe everyone needs to know when they or a loved one is living with dementia.

My dad lived with dementia for 19 years, and we were literally given one leaflet and told to get on with things when we found out my dad’s diagnosis. Improving the post-diagnosis experience for other families has been something close to my heart for the 12-plus years since my dad died.

So, what do I wish we’d known when my dad was alive?

Tip 1: Environments really matter

My number-one tip, aside from accessing the support of the charities listed above, would be to make sure the person’s home works for them. Do this by using resources like the Alzheimer’s Society’s ‘Making your home dementia friendly’ and the University of Worcester’s environmental tools.

Why do you need to do this? This clip from the film Still Alice shows how a person with dementia can struggle in their environment without clues to help them navigate it. Given that 85% of people would want to live at home if they developed dementia, making a person’s home work for them is a top priority that isn’t talked about enough after a diagnosis.

Tip 2: The power of peer support

We know that social interaction is key to living as well as possible with dementia. I hear many positive stories of post-diagnosis groups that are offered via memory clinics, but when these groups end many people are left high and dry.

Signposting to DEEP (Dementia Engagement and Empowerment Project) peer support groups, Dementia Diaries (where you can hear directly from people living with dementia), Dementia Tip Share (tips from people living with dementia) and the 3 Nations Dementia Working Group (another peer support network) could enable so many people newly diagnosed to feel less alone and avoid many of the mental health challenges that can come along after diagnosis.

Tip 3: How to enrich life

Life doesn’t end when dementia begins, and to live as well as possible means enriching life with pleasures that support the person in their reality.

Ways to do this can include music, such as making a personal playlist, life story and reminiscence work, tapping into the power of sport, using nature and gardening as a therapy and many other engagement ideas including those recommended by NAPA.

Tip 4: Making the tough stuff easier

It’s often said that people should ‘get their affairs in order’ after a diagnosis of dementia, but tackling documents like wills and power-of-attorney when you’re already struggling to process a diagnosis can be tough. Supportive resources like My Future Care can make that process easier for everyone; making a bucket list is definitely a gentler introduction to future care planning!

Another tough challenge to negotiate can be personal care support. Crossing the Line is a resource most families will find useful at some point.

Tip 5: Health information when you need it

You probably won’t need to know about incontinence products or good swallowing advice straight after a diagnosis of dementia, and it may be many years before this is relevant (if ever), but knowing that Dem Con (a continence care resource) and guidance about swallowing exists might be useful one day, so they can be filed for future reference.

More immediately, it’s worth considering how the senses are impacted by dementia, and how you can embark on rehabilitation (which will be the focus of the World Alzheimer Report in September 2025). Try ‘My life, My goals’ to get started with a cognitive rehabilitation approach.

To conclude…

There is, of course, so much more information available, but starting with the above five tips and building on this by having a region-appropriate general resource like ‘Knowledge is Power’ by your side (there are booklets for England, Scotland and Wales), as well as checking out the ‘Reading Well for dementia’ resources in your local library is a great starting point.

If you want more, Dementia Community has a wealth of free webinars, resources, news and events that relate to dementia.

For the rest of your time, my best advice as a former carer would be to live in the moment with your loved one. Life with dementia is too short to do anything else, and as I said in the conclusion of my 2024 Alzheimer’s and Dementia Show presentation: what I always knew was the true value of the person – my dad. The greatest piece of information to share is perhaps just that.

About the author:

Beth Britton is an award-winning content creator, consultant, trainer, mentor, campaigner and speaker who is an expert in ageing, health and social care.

www.bethbritton.com

Hear Beth speak at the Alzheimer’s and Dementia Show on 19 March 2025 when she’ll be talking in three sessions addressing the topics of wellbeing, supporting people with learning disabilities and dementia, and chairing a lived-experience discussion.