Lawyer's Personal Story on World Alzheimer's Day

Caroline Hurst
Court of Protection Senior Associate Lawyer

September is World Alzheimer’s Month, with 21 September being World Alzheimer’s day. The aim for World Alzheimer's Day is for an international campaign to raise awareness and highlight issues faced by people affected by dementia.

Dementia is a condition that can affect anyone, often with no known reason as to why a person is affected.

Key Dementia Statistics

There are estimated to be 850,000 people living with dementia in the UK and this is estimated to rise to 1.6 million by 2040 due to people living longer. Across the world there are 54 million people living with dementia which is estimated to rise to 130 million people by 2050.

Around 200,000 people will develop dementia this year – that’s one every 3 minutes.

1 in 6 people over 80 have dementia and 70 percent of people in care homes have dementia.

Does Dementia Just Happen to Old People?

A common misconception is that dementia ‘just happens to old people’. That isn’t correct. Around 42,000 people under 65 live with dementia. Those with early onset dementia can often have other conditions such as Downs Syndrome or learning disabilities.

Due to the type of work I do, I regularly represent people who live with dementia so am aware of the challenges that it can bring for both them and their families. However I have recently had to experience dementia from a personal perspective.

My Grandad and Dementia

Around 13 years ago my grandad was diagnosed with dementia. Up until earlier this year he was able to remain living at home being cared for by my grandma and, eventually through a care package. However early this year my grandad experienced a significant deterioration (my grandad has vascular dementia and the deterioration often manifests itself in steps) and it became necessary for him to be placed in a care home. The feeling that people often tell me they felt, that they had failed their loved one, was soon felt by me and my family. Whilst at the care home the ongoing monitoring of my grandad showed that the dementia was now impacting significantly on other parts of his health and he spent a considerable amount of time in hospital. Two weeks ago my grandad passed away. Whilst you don’t die of dementia, the impact of the condition significantly affected him and his ability to fight infections.

Many people say that the person who has dementia is the not the person they remember. I think to some extent this is true, but I always advise my client’s to look deep. It maybe that they still use the same way of greeting someone; or still have a similar habit. My grandad used to work as a clerk in a bank and he would still count money and put them into piles. My grandad still had the same smile and even at the end I could see my grandad was still there.

A deterioration in memory is something people associate with dementia, and whilst it is true that memory is affected, it’s different parts of your memory that is affected. So the person may not remember your name, who or what you are to them but they will remember the feelings they had when they were with you. They may remember walking down the beach with a person who looks like you and that made them feel happy. Don’t assume that because they don’t know your name, that they don’t remember you.

There is no known cure for dementia. Getting an early diagnosis is key as there are some medications that can delay the deterioration or help with some of the symptoms. If you have concerns about a person, whether that’s their memory; their communication skills or them just being not their usual self but you can’t put your finger on why, encourage them to see a GP who may make a referral to a memory clinic.

Dementia Friends

The Alzheimer’s Society created a programme to encourage people to become Dementia Friends.

This was developed to help in raising awareness and understanding of dementia, so that people living with dementia can continue to live in the way they want for as long as possible.

I would encourage everyone to attend one of the training sessions.

You can attend an information session whether in person or virtually or watch an online video. It’s free and will, I am sure, provide you with information about dementia, you never knew. There are over 3 million Dementia Friends in the UK and numbers are always growing.

I am going to finish this with a story I learnt on my Dementia Friends course, which really resonates with the work I do.

An elderly woman was in a care home in the north east. She had no family or friends in the UK. The lady would sit, every day, silent, at a table and tap on the table with her finger or a pen. No one knew why and it would often make the other residents cross when she didn’t stop when they told her to.

One day her great granddaughter, who lived in Australia and had never seen her great grandmother, came to the home to meet her. The manager asked to speak with the great granddaughter. She asked her if she knew why the lady kept tapping on the table and the great granddaughter did not know.

The manager then tried to take some information about the lady’s life. She asked the great granddaughter if her great grandmother had ever worked and the manager was told that she used to work at Bletchley Park sending Morse code messages. Suddenly it makes sense. She became a local hero, having the local newspaper do an article about her and the local scouts visiting and showing her the Morse code they had learnt.

A person may have dementia but they still have their history. Remember the person, not the dementia.

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