I remember my Grandma, Marjorie, very fondly. When I think of her it triggers a cascade of memories including her little car with the squidgy window washer, of walking into the town holding hands with her and my mum with me swinging up into the air “one, two three, wheeee!”, of playing in her kitchen, sitting in the pantry on the seat that became step ladders and using the wall mounted can opener as some kind of space age device, playing on the stairs, hearing her answer the phone “Aldridge 52629”, picking raspberries in the (very large) garden, of her and my Grandpa hosting Christmas parties for the whole, extended family with food, presents for all and sherry for the grown-ups. She was there as I grew up someone I looked forward to seeing, someone who gave unconditional love in the way that Grandmas do. She was proud of my achievements, I have a photo of her at my graduation, at my wedding, and one of her holding my infant son. So many memories.
Ironic that memories became something that she ultimately struggled to retain herself. As she aged she began to forget. She began to become confused. She struggled to retain her personality, she stopped being the person she had been.
Dementia is a dreadful thing.
It isn’t just about memory, or rather we need to remember the importance of memory and how integral it is to your ability to function in the world. Taking away your memory can mean taking away your personality, your ability to interact with people around you, your understanding of who the people around you are. And it takes you away from the people that love you. It might not take them away physically, but I think you know what I mean.
My Grandpa worked very hard to keep my Grandma at home. He succeeded until her final illness when she fell, broke her hip and was admitted to hospital. He coped (barely) with her condition with very little external help, and my family and I all remember those difficult, stressful times.
I have blogged about dementia before two years ago (http://www.valeroyalccg.nhs.uk/blog/9482-dementia-friends). In that blog I talked about Dementia Friends (https://www.dementiafriends.org.uk/) and encouraged you to become one. I will still make that plea. In this blog I want to encourage you to take action by ensuring that anyone you may know with any memory issues has seen their GP, and that their GP has considered dementia as a possible diagnosis. In my part of Cheshire it seems that we might not have as many people diagnosed with dementia as one would expect. We are not sure why that is, but are doing a number of things across the health system to highlight the situation and make sure that clinicians understand the importance of diagnosis and the pathways to follow.
Sometimes I have heard people say that there is little point in making a diagnosis, because there is no effective treatment. I understand that perspective, but I don’t think it is correct. There are some treatments which are used to slow down the cognitive decline, but more importantly there is the additional support that comes with knowing your diagnosis, and the very fact that your medical record notes that you have dementia will potentially change your healthcare experience. Imagine being admitted as an emergency to hospital and your diagnosis of dementia was not known. It is likely that you would end up receiving unnecessary assessment – first to exclude physical causes for your confusion, then a mental health assessment, rather than being provided straight away with the care that you need.
A diagnosis of dementia allows friends and family the opportunity to seek out support and information for themselves, which can be essential. Having dementia is hard for the individual affected, but equally hard for their loved ones. We need to do all that we can to support these carers, and early diagnosis is a large part of that.
And did you know that individuals with a diagnosis of dementia can sometimes claim reductions in council tax payments? If you think that might apply to your household or to someone you know, then this helpful section of the Alzheimer’s Society website is worth a read. https://www.alzheimers.org.uk/info/20032/legal_and_financial/83/council_tax
We are embarking upon a campaign locally to raise awareness of these issues among local health professionals, looking to recruit ‘Dementia Champions’ from each GP surgery and apply a new focus to this area. We will be looking to ensure that professionals have had Dementia Friends training and understand the pathways to diagnosis and treatment, as well as the support available for patients and their families. I have been looking at the outcomes of the CADDY study (http://nspccro.nihr.ac.uk/research-study-results/dementia–ageing/caddy-cfasii-dementia-diagnosis-study-dementia-undetected-or-undiagnosed-in-primary-care-the-prevalence-causes-and-consequences) which gives some pointers around who is more or less likely to receive a diagnosis which will also give us something to consider with our awareness raising. Sometimes we find that individuals are being treated and managed for dementia, without actually having received a formal diagnosis, or at least without the diagnosis being added to their record – we can look for these patients using computer searches. Those of you reading this blog can play a part in this by sharing on and talking about these issues, by seeking out Dementia Friends training and being aware of the issues.
Let’s do all we can to help people like my Grandma and Grandpa, their families and their friends – in essence people like me, and like you.
Dr Jonathan is a GP at Swanlow Practice in Winsford, Cheshire, and Clinical Chair of NHS Vale Royal Clinical Commissioning Group
Follow Jonathan on Twitter @DrJonGriffiths