Today marks the 10-year anniversary of my D4Dementia blog.
I’m not quite sure where those 10 years have gone, but this is my 270th post with the topics covered ranging from pre-diagnosis to end-of-life care and (almost) everything in-between. I’m very proud of the resource that D4Dementia has become, but the success this blog is entirely due to all the wonderful people who’ve read it and shared it over the years, so to each and every one of you, thank you.
Diagnosis and Dementia Action Week
10 years is, ironically, also how long it took for my dad to get his dementia diagnosis, which is particularly notable currently given that we are in Dementia Action Week which this year is focused on diagnosis.
The Alzheimer’s Society say that dementia diagnosis rates have fallen to a five-year low, and they are encouraging anyone experiencing dementia symptoms to seek help. The strapline of their campaign is: ‘It’s not called getting old, it’s called getting ill” and they’ve made this powerful film depicting a couple with one partner showing signs of dementia.
I have to admit I felt tearful at the end of the film. Whilst I wholeheartedly agree that awareness of and action for dementia needs to be all year round, I have found this year’s Dementia Action Week campaign really resonating with me, largely because of what we went through with my dad.
Diagnosis in 2003 and 2022
It must, of course, be remembered that when my dad was becoming ill (he was diagnosed in 2003) there was a lot less awareness of dementia than there is now, Memory Clinics didn’t exist, and it really was a case of ‘getting old’ rather than ‘getting ill’.
Fast-forward to today and more people readily identify dementia in themselves or a loved one, and healthcare professionals are generally more attuned to providing timely support, but if there are some crucial points I’ve been reminded about in relation to diagnosis lately, it is that:
- If a person doesn’t want a diagnosis assessment, there isn’t much anyone around them can do to change that. We all have the right to choose, and some people will always choose not to be assessed, as pointed out by my Admiral Nurse colleague Jane Nickels on the Dementia Action Week Live Twitter Chat we joined in with together this week.
- It can be difficult to get a timely GP appointment in some areas, and many Memory Clinics (and supporting services like brain imaging) have long waits, much of which is due to the pandemic backlog and staff shortages.
- The post-diagnosis support offering is still not universally streamlined to include everything a person with dementia and their family will need. For example, many people aren’t alerted to vital aspects like:
- How do you make your home dementia friendly to enable you or your relative to live as independently as possible for as long as possible?
- Where can a newly diagnosed person find peer support?
- Where can family carers get training and education?
- How do you access a dementia specialist nurse?
Worried about dementia?
In the last 3 months alone a friend and current work colleague, and another former work colleague, have reached out to me detailing concerns they have about ageing parents potentially developing dementia. I suspect their experiences will mirror many other people who are silently trying to cope alone, perhaps because they haven’t thought about reaching out or just don’t have the time or headspace to.
If you are worried about potential dementia symptoms in yourself or a loved one, the Alzheimer’s Society have shared this resource to help pinpoint symptoms. I would also suggest reading my blog ‘What is dementia’ for some more context on the breadth of potential dementia symptoms, and the more recently published ‘Know a little more about dementia’ for some really useful ‘What next?’ information.
Getting a subtype diagnosis
I would also add on diagnosis that I entirely agree with the drive charities, like the Lewy Body Society, have been championing for people to have an accurate dementia sub-type diagnosis.
Diagnosis should never be about diagnosis for diagnosis sake (or statistical reasons!), but instead be about knowing as much as possible about what is happening to a person’s brain and the practical effects of that. Sub-type diagnosis augments our knowledge from a medical perspective, and combined with the vital social perspective (environmental work, supporting connectivity, wellbeing etc), and underpinned with an appreciation that no two people will ever be impacted by their type of dementia identically, we can work with the person to understand their experiences and support them to live as well as possible.
Hope for the future
I do believe things are better now than when my dad was alive in terms of dementia awareness, reduction of stigma (as I wrote about in my Dementia Action Week blog for Bellevie), and improved care and support for people with suspected or diagnosed dementia and their families, but we still have a long way to go.
The new 10 year Dementia Plan due to be published by the government later this year needs to deliver bold improvements, co-produced with people who are living with dementia, against a timeline that will ensure real and sustainable change.
In the meantime, my answers to the questions above (which is just a drop in the ocean when it comes to post-diagnostic support) would be:
- How do you make your home dementia friendly to enable your relative to live as independently as possible for as long as possible? The Alzheimer’s Society’s book: ‘Making your home dementia friendly’ is a good starting point.
- Where can a newly diagnosed person find peer support? Memory Clinics often offer groups, but it is also worth checking out DEEP and Dementia Alliance International.
- Where do you go to for training and education? I would suggest Dementia Carers Count and the Understanding Dementia MOOC to begin with.
- How do you access a dementia specialist nurse? Contact the Admiral Nurse Dementia Helpline.
Do also search D4Dementia (the search box is on the right-hand side, scroll to see it) for more information on a whole host of topics.
Until next time…