Dementia from the INSIDE looking OUT

I can still remember hearing those words from my psychiatrist “You have early on-set dementia and it looks like Alzheimer’s” I felt my blood run cold, did he just say I have Alzheimer’s? That can’t be I’m only 58, you have to be old to get Alzheimer’s don’t you? I then thought oh my God my life’s over, I’m going to be put in a home and have to sit in one of those chairs just staring into space without being able to speak or understand anything, a place where your family only came and visited you on birthdays and holidays. After my diagnoses I use to hear my wife Joyce talking to her friends and family about me, but it was always in the past tense as if I’d already passed away. I use to think I can understand what their talking about they must have diagnosed me wrong, yea that’s it they’ve got it wrong, everything will be alright. The important thing for me regarding dementia is to educate the public that having dementia does not mean we lose our intelligence, that it is not all about memory loss.

Dementia is much more that. Yes memory loss is a big factor, but so is our cognitive abilities, how many people know about this? Not many I bet,indeed it has surprised even some of the medical profession. How many people realise that a diagnosis of dementia affects everyone connected to that Person.We as People living with dementia should be helping educate the public, carers and our peers who are newly diagnosed with it. 

‘We don’t want pity we want support’ If that support is given then once again we will be able to contribute and not be seen as a burden on society. There is a rich untapped pool of what it’s like to live with dementia out there so let’s Use it or Lose it. The most important thing for me is making sure the Family Carer is not forgotten and ensuring they have a good understanding of dementia. It must be one of the most stressful, thankless jobs there is being a family caregiver, everyone tells you you’re doing a great job but offer no help. If Carers have to learn that You must not take things to Heart, but you must be prepared to change your life, but at the same time Carers lives should not grind to a halt, carers have to try and live as well, yes it will be Hard. My wife Joyce always says “I have two men in my Life, The Husband I grieve for and know I will Never get Back and The Tommy who has Dementia and is working to help others, But they are not the same” Empathy for what we are experiencing will help your relationship. Do not expect the Person living with dementia to meet you halfway to your world; you have to enter Our world.

Its very important that a Person living with dementia is treated with respect and as a unique valuable human being, despite our illness. When a person living with dementia finds that their mental abilities are declining, we feel vulnerable and need reassurance to retain our sense of identity and feelings of self-worth. We need to feel respected and valued for who we are now, as well as for who we were in the past. Make time to listen to the Person living with dementia and have regular chats make sure you enjoy being with the person. I’ve heard people say to me my Mum/Dad does not speak to me so why should I bother to speak to them. I say to them your mum/dad may have lost the ability to verbally communicate with you, but they still understand you, besides not all communication needs to be verbal. A smile and a hug speak a thousand words. I then say that people will take the time to talk to plants and animals but will not take the time to speak to a Person living with dementia. No one can take care of somebody who has Alzheimer’s by themselves. If you do, the disease will probably take you down as well. You can help the Person living with dementia through music, as it actually engages all of the brain and everything up there in all the different regions are firing all at the same time and it seems to help the brain globally. Dementia has replaced cancer as the disease that people fear most. 

This fear is fuelled by stigma and the perception that it ‘won’t happen to me’. Everybody knows someone with dementia, dementia will touch all our lives directly or indirectly Eventually. Dementia will not go away if you ignore it, the only way to take the fear out of it is to try and understand it. If society ensured that people were educated about dementia than a lot of my peers would be able to engage with the community safely. Remembering that one size does not fit all when it comes to dementia care is fundamental. We don’t want people to have have sympathy with us, we want people to have empathy with us. Empathy is very different from sympathy. Empathy is a choice it fuels connection, Sympathy drives disconnection.

The lack of knowledge around dementia leads to stigma, as it causes people to rely on harmful assumptions instead of fact. Alzheimer’s is not contagious you cannot catch it but your genes can increase your risk. Alzheimer’s is the only disease of the top 10 that there’s no way of preventing, cure or slowing it’s progression. The most important thing to do is plan ahead, my wife realised that I was having trouble with stairs so we down sized to a bungalow. As the population start to live longer in a few years the word elderly will not apply the same as it does today.

Good communication skills will enhance your ability to handle difficult behaviour that you may encounter as you care for a Person living with dementia. No one is born with the skills to communicate with a Person living with dementia, but can be learnt.