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Living with Dementia, Hilda's Story #DementiaActionWeek

Friday, May 21st, 2021 | Uncategorized

As you may know, this week is #DementiaActionWeek. Dementia Action Week is a campaign led, and organised by Alzheimer’s Society to raise awareness for dementia. 


‘Right now, the broken social care system means that in the UK, nearly 1 million people with dementia and their families are struggling to get the support and care they need and deserve. Decades of underfunding and neglect have led to a care system that is difficult to access, costly, inadequate, and deeply unfair. The coronavirus pandemic has exposed these problems like never before.’  - A direct quotation from the Alzheimer’s Society website.  


At Kare Plus, an estimated 60% of our businesses provide dementia support to their customers, and our aim this week, is to raise as much money, and awareness for this cause. This week, we were proud to launch our ‘One Share, One Donation’ campaign, for every share the post gets, we will donate 50p to Alzheimer’s Society to further the research, care and treatments of those living with dementia. It only takes a couple of seconds to share, to view and to engage with our post, please click the link here.    


Dr Louise May, Director of Kare Plus Wirral and Liverpool, and her parents, Lew and Hilda, have kindly agreed to share their story about living with, and having a loved one with dementia. Louise’s mother, Hilda, has been living with dementia that has deteriorated in the last 12 – 18 months, and they wanted to share their experience about the support they have received, as well as providing advice on how to cope with a loved one living with dementia.  


 With money constantly being invested into the treatment and care of patients, it seems as though we are going in the right direction, however, Louise does feel that more can be done.

“It would be helpful if mum had a named dementia specialist nurse who we could liaise with, as at the moment it’s reliant on accessing the GP, and this is hindered by Covid, and lack of face-to-face appointments. Greater information of how, as a family, we can cope with the subtle and progressive changes that my mum exhibits. Some top tips to deal sensitively with your loved one.”   


Before diagnosis, many loved ones don’t fully understand dementia, and people in general don’t fully understand the different forms of dementia, and the impact it has on day-to-day life. Louise said:   

 “I knew about dementia, types, and symptoms etc but nothing prepares you for you seeing and living with dementia in someone you love. The changes that take place for them - when they don’t recognise you are their daughter, when they ask same questions repeatedly, when they forget how to walk unaided, when they struggle to feed themselves. This was my mum who cared for me but now the roles are reversed, and I am caring for my mum and dad.”   


 The general public aren't educated enough on dementia, to enable us to understand what it means to be living with dementia and how to assist those living with it. We can help make life easier for those living with dementia, and a few things Louise said we could help with are:   

“Make the effort to understand what Dementia is and how they can support members of the public who are exhibiting signs of dementia. Simple things such as when I go with mum for a hospital appointment for her eyesight that if the staff knew she had dementia they would not try and make us sit apart (due to Covid) and that my mum is frightened.” 


The UK is quite dementia-friendly at the moment, but Louise has suggested we can do more.  

“Clear dementia friendly areas in shops and restaurants. That cinema ran dementia friendly evenings with attention to things like lighting and volume.”  


Educating the general public on dementia is vital. To try to understand more about the condition, and those living with it. Louise has said:  

“That it is progressive, debilitating, and frightening. That someone with dementia needs empathy and care as well as love and attention.”  


While the UK has many services, literature and people available to those living with dementia, Louise commented that:  

“Following GP diagnosis, we had an OT referral and adaptations were made to the home including hand grip rails, ramps, tips to change the colour of the steps to help mum to step up and down. Access to local dementia charity who have kept in contact throughout covid and have provided regular activity boxes for mum and dad.”  


Dementia is a life-changing condition for those dealing with it. Your world is turned upside down and Louise’s is no different.  

“I have become more of a hands-on carer for my mum and dad. I have introduced carers from Kare Plus Wirral early on when mum was first diagnosed. Those carers have seen mum deteriorating and are a great support to both me and my dad (as well as my mum). I am very aware of not only how dementia is affecting my mum but also the pressure and emotional burden that it has placed on my dad." 


For others going through the same journey, Louise has advised:  

“Introduce carers early on even if it’s just for companionship calls this creates trust and support. It’s important to get an early diagnosis and ensure you have Power of Attorney sorted for Finance and health before diagnosis.”  


To finish off, we wanted to ask Louise to talk about what activities her family enjoy doing together?  

“Mum has always loved watching Football (and is an avid Liverpool supporter). Sundays we watch premiership football in the afternoon. She also loves Antiques Roadshow and guessing how much items are worth. Sundays are all about family time with a roast dinner, being together with her granddaughter, her partner, daughter, and son in law plus the four family dogs. Some Sundays she just likes to sit in the garden or go for a drive as long as she is with Lew (my dad) her husband of 64 years.”  


Dementia Action Week is a prime example of how we need to be more aware of those living with dementia and their loved ones too. Thank you to Louise, Hilda & Lew for sharing their story of day-to-day life with a family member that is living with dementia.   


We hope you found this blog informative. If you would like to find even more information about dementia, and other helplines, please follow the link below to a blog written by the Director at Kare Plus: 


What Actually is Dementia? #DementiaActionWeek 

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