This week is National Dementia Awareness Week. There are around 800,000 people diagnosed with dementia in the UK but more worrying only 44% of people living with dementia are diagnosed. While dementia is an umbrella term for a set of symptoms, it’s important to recognise the signs, get a diagnosis and start on a support plan to live positively.
I am sure most of us have suffered some of memory problems of forgetfulness, even if fleeting. We tend to laugh it off as getting older or label it with some horrid term like ‘mummy brain’ or ‘blonde moment’. But when your loved ones are suffering from more frequent memory lapses, it could be time to consider if there’s something more physical.
Dementia isn’t ‘getting old’ it is a disease which impacts the brain, the the most familiar of which is Alzheimer’s. And realising this is the first step to living a positive life with dementia and supporting those in your family who have the disease.
There is no common treatment, some drugs have been found to be effective on some patients and research continues. But positive and active support including cognitive therapies can be successful in helping an individual retain a routine and live independently.
Our current journey with dementia is only just starting. It isn’t something you ever wanted to say about your own vibrant, inspirational, independent grandmother. The word is loaded with negative connotations, most worryingly that this person you love and admire, someone who was a major part of your upbringing and the character you’ve become, is about to slip away from you. It is easy to get frustrated at the ‘person’ not the disease, trying desperately to figure out why she behaves the way she does. The fact it is so intermittent keeps us all well and truly on our toes. Most days, she’s Nana, cracking jokes and posting on Facebook - yes, we call her Cyber Gran, a 91 year old internet sensation.
My mum has worked hard on the logistics. It has still taken up a huge amount of time, thankfully, she is retired but it still infringes on daily life. As most family carers will know, there’s a huge amount of paperwork plus the pressure needs to be kept on healthcare individuals as the case can stall with a weak link in the chain of therapists and GPs. Most of the people involved in our case are great but it only takes one missed call, one missed letter for the ‘care package’ to fall apart. A family member has to stay on top of it. Which is exhausting. And family carers are saving the economy £8bn.
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So where among this nightmare of phone calls and form-filling does the family have time to consider the other aspects of her care, namely providing a stimulating and proactive environment to keep her active? We have felt like we are chasing our tails and we’re lucky there’s a few of us to support her. We are fortunate the great grandkids can offer some light entertainment which quite clearly perks up her mental state. I am fortunate I can pick up the phone, say “hello Nana, it’s Claire,” and she replies, “oh hello darling”.
The Alzheimer’s Society’s website is full of information and practical ideas on living with dementia. After reading a few of the factsheets, I almost started to cry. These are the answers we’d been looking for. Yes, we’d been handed some booklets but they were limited. We are the kind of family that likes to get under the skin of the situation, roll our sleeves up and get into action. The website’s many articles and downloadable factsheets means we can do this.
If I had any advice from our journey so far, if you suspect someone in your life has dementia don’t bury your head in the sand. Pretending it’s not there means you’re delaying the chance of sorting the logistics of care and putting a positive plan in place for that individual to carry on living as independently as possible.
And remember the person. They may have a disease which alters their personality but they are still ‘them’.
National Dementia Awareness Week is 18th May - 24th May, 2014 - this infographic has key facts. Watch this video about their helpline.
