Demanding better for people with dementia

Ordinarily, September is dominated for me by World Alzheimer’s Month (or World Dementia Month as I prefer to call it), which in practice means 30 days of sharing all of the great content, ideas and initiatives that lots of fantastic dementia-related organisations offer during September. However, on the eve of World Alzheimer’s Month our second child was born, and as you might expect my ability to keep up with everything that’s happening in the wider world since has been patchy to say the least!

In my many quiet times of breastfeeding, however, I have thought a lot about my birth experience and how that ties in with my work. Our son’s arrival was an unplanned home birth, which resulted in his dad delivering him as the paramedics said they don’t deliver babies (they take instructions from midwives) and the midwife didn’t arrive until afterwards.

 

Birth and beyond

It was a full-on ‘raw’ birth experience for me but thankfully with a happy outcome after two miscarriages last year (one of which I wrote about in my ‘Experiences of loss’ blog). But what, you might wonder, has my experience of bringing new life into the world got to do with people who’ve been on this planet far longer and are living with dementia?

Well, for starters the idea that medics ‘don’t get involved’ seems apt given that so many people are given a diagnosis and just told to go home and get on with it. Secondly, my emotional experience of birth also resonates – there were times I felt scared, overwhelmed and wondered if I would get through the birth. This is how people with dementia and their families feel regularly, both before, during and after a diagnosis. Birth, of course, will come to an end fairly quickly in the grand scheme of things and hopefully with a happy and healthy outcome for mums and babies, but dementia is progressive and terminal – in my dad’s case for 19 years. There is no resolution, things only (eventually) get worse.

Looking at the bigger picture, I’ve been lucky to have had amazing maternity support during my pregnancy and afterwards, but of course people with dementia have patchy – if any – support post-diagnosis. Meanwhile, in the context of the current pandemic, maternity services have continued to run – albeit with restrictions on partners attending scans and being present in early labour etc – whereas so many dementia services have been indefinitely postponed and in some cases will never be reinstated.

 

A stark divide

The divide between how we care for the youngest and oldest in our population has never been more stark for me. Whilst I’m very grateful for all of the care and support I’ve had, I know so many people living with dementia and their families who are crying out for even the tiniest amount of support to be offered to them.

Continuing to highlight this need may seem pointless given how little actually changes. However, I believe we must keep banging the drum for better support and this, my 250th D4Dementia blog post, is intended to do just that, coinciding as it does with the 26th World Alzheimer’s Day and the 9th World Alzheimer’s Month.

This year the focus of these awareness drives is on talking about dementia, and as I pointed out last month that couldn’t be a more timely topic. As I cuddle my children a little closer in these scary COVID times that we are living in, my hope when they are adults is that dementia doesn’t mean then what it means now. Specifically, that people who develop dementia and their families have all of the care and support that they need, effective treatments and who knows, perhaps even some semblance of a cure.

 

Keeping dementia in people’s hearts and minds

Our daughter talks lovingly of the grandfather (my dad) who she never had the chance to meet, and in time her brother will learn about my dad too. These conversations are so important to help the younger generation to want and expect more progress in dementia care and support in the future.

So we must keep talking, especially if like me you feel powerless to do much more than that at present. Keep the memories of our loved ones alive even though their physical presence is no longer with us, keep sharing their (and our) experiences of dementia to help educate and inform, and realise that whilst as younger people and younger generations we may have access to the services we need to meet our personal health circumstances – as I did during my pregnancy – the age-divide that means older generations living with dementia don’t enjoy equality of support must be closed.

It is only by demanding better that better will ever be achieved.

Until next time…

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