Reactions to dementia

Almost funny???

Almost funny???

When a person with dementia ‘comes out’ about their diagnosis, and openly admits they are living with the symptoms of, and diagnosis of dementia, there are a number of reactions and responses. The person with dementia (PWD) is thrown into complete turmoil; anger, ‘why me?’, surely it can’t be true, let’s get a second opinion, grief, and many other things. Coming to terms with such a diagnosis is a very difficult thing for every family facing the arrival of Mr Dementia.

The responses of others varies. Some are over protective, immediately wanting to help you, take over for you, and try to love you more. Others openly suggest or accuse you of lying; if you can still speak and function, then you can’t have it, or maybe you are lying for notoriety or sympathy. Many others say, ‘but I forget things too’, or ‘my mother/father is like that’. Then if you remember something in a conversation, some say, ‘see, you can’t possibly have dementia’.

My mother said when she found out I had been diagnosed with dementia, ‘she felt an anger she had never felt before, one that eventually subsided, but which left her with a deep, deep sadness.’

My youngest son said, ‘but mum, that’s a funny old persons disease!’ None of us had ever considered younger people are also diagnosed with dementia.

My husband said some time ago, ‘I know I am losing you, and I am afraid of what the future holds.’

In public places, like retail outlets and cafes, if you get confused or forgetful about what you are doing or ordering, then you get the ‘sour lemon look’, from people young enough or smug enough to not realise they too might be diagnosed with dementia one day. At a forum recently, even the carers of people with dementia would suggest to some of us we didn’t have it, even though they had heard presentations from PWD about how much this hurts.

Many subconsciously blame the PWD for their changed behaviours, rather than the disease.

Many forget it is a terminal illness, and we are struggling to paddle to get through their days.

The symptoms of dementia can sometimes get in the way of  compassion, and often the PWD is ‘blamed’ for their behaviours; for being obstinate, or difficult, or for refusing to acknowledge they have dementia, or for not accepting help, or for mistrusting those who are trying to help, or… or… or… there are so many times I read or hear about the carer blaming the PWD, not the symptom of a terminal disease, for ‘their’ troubles. In many cases, PWD are also blamed for the changed roles of family members as they have to take on the role of carer.

It takes time for carers and friends to see it is not us, but the disease.

The overly protective responses are the easiest to cope with, as at least these people don’t accuse you of lying, they don’t blame your changed behaviour on you, and their reactions are truly based on love and compassion. It is a normal response when a person you love is troubled or ill to want to help them.

Earlier this year, I had a few days of trauma following being bullied by three people at a family function. It was almost teenage school yard gangster style, two in a smiling passive aggressive way, one person openly nasty and in front of others. Thanks (!!) to Mr Dementia, I am no longer able to hold my own in situations like this, and consequently spent a few days crying into my hankies. I am over it, and as always have learnt some life lessons from it.

One very special friend visited me the next day and held my heart gently in her hands… no words or questioning, simply sitting with me in love and friendship. This is what people with dementia need more than anything else – people to hold their hearts gently and lovingly, no questioning, no-one saying things like ‘but I’m like that’ or ‘you don’t have dementia’, and especially no-one blaming the person for the symptoms of the disease.

Ps. Don’t forget, voting is open for the The Best Blog 2013 Competition… you can click on the image on the right.

Pss. My blog is called: Creating life with words – Inspiration, love and truth

29 thoughts on “Reactions to dementia

  1. Pingback: Meeting Minna |

  2. Oh Kate, that is terrible, and i am so so so sorry to hear that-my family can relate to it, and its heartbreaking to hear that you cried for a few days because people were bullying you about your Dementia. Some peoples dementia is mild, some is moderate, and some is advance, but regardless of what stage, people dont pick on them and they still have it. That is so cruel and i hope you have all the love and support in your life now and have lovely selfless friends. My Grandma walks 500m in front of my Grandad and she talks to my Grandad about random people who he has absolutely no idea who the hell they are. It nasty how people smile at someone because they have dementia. One of my dads friends was mean to me yesterday about Alzhiermers and called it “Alzhiermers syndorme” and laughed at me because i am writing my book-my purpose of writing my book is to create awareness about Alzhiemers in Nz, and i dont want people going through the same things my family went through. E.g Granny walking in front of Grandad and not getting enough help etc. All the best, Sam


  3. Pingback: Living Beyond Dementia™ can be difficult – Living Beyond Dementia™

  4. Hello Kate, I work as a speech-language therapist, helping people with communication and swallowing issues but I was inspired today to mention you and your blog as an inspiration to those who contact me who are just finding a new diagnosis of early onset dementia so, so difficult. Thank you for speaking up and for paddling so earnestly.


    • Thanks so much Candy… and good luck with your work.

      Also, FYI, a diagnosis of dementia under the age of 65 is being referred to as YOUNGER onset by most countries now, not early onset, and anyone at any age can be in the early stages of dementia.


  5. Wonderful post, Kate. Thank you for giving us such important insight into what it feels like to be living with dementia. You are no doubt helping caregivers around the world by sharing your perspective. ~Ann


  6. Thanks you so much for sharing the perspectives of a PWD. It so helps me be the best daughter to my Mum who has Alzheimers. I truly appreciate what you are doing in raising awareness and understanding. Keep it coming.


  7. WOW!!!!!! I cannot say how much your comments resonate with me Kate!!!!! And from the bottom of my heart I thank you for sharing them… I started having significant memory loss at the age 40…and have been on medication since then… plus as you will know all the brain scans and testing… all the things you have said in your comments I have had said to me… the challenge this disease brings to ones life is considerable… I have even had moments of thinking I’d prefer to have cancer which somehow seems to have a better community understanding in that it people never would say… just try harder to not have cancer… your just tired… oh I get cancer sometimes as well… get some more sleep that will fix you cancer… but running a business and three young children I solider on and take each day as it comes and leave the unhelpful comments at the door as I know it is just a lack of education that has people not understanding that someone so young can be ‘not able to remember’ 😦 Good for you speaking up on the issue… I am not brave enough to go generally public with it at this stage for fear of the reaction and trust issue it may cause.


  8. Pingback: Reflecting on 2013 | Creating life with words: Inspiration, love and truth

  9. it is like most things in life, if you can’t see it.. think walking stick, plaster cast or feel it – identify with a disease think tooth ache (poor analogy I know) then it doesn’t exist. I will always hold your heart and defend you, you may not see me enough but I am like the stars I will always be there, sometimes in person but always in spirit xxxx


  10. Pingback: The #G8Dementia Summit – hopefully a chance for real campaigners, not an international trade fair | Living well with dementia

    • Thank you so much John, it is always good to receive praise! And thank you for the link to your blog, which I’ve had a quick look at and relly liked, but will get back to when I have more time, as well as send in my details for the online suppoort group. Take care…


  11. Kate – when looking at people’s reactions to others with dementia, the ‘stage’ and the ‘type’ of the disease is also going to influence the reactions of others. There are some very extreme and scary behaviioural problems that might ‘trick’ the healthy people into believing that everyone with dementia is like that ……. know what I mean?

    But there are so so many different symptoms that can be displayed that i’m sure that most people wouldn’t know that they are so diverse ……. just part of the ‘public education’ program, i suppose…….


  12. My dear Kate,

    Re getting bullied at a family function; Remember, you can pick your friends but not your relatives. One would expect family to show more understanding.


  13. What a moving and well written piece on a subject that is very misunderstood. Great job..may this lead more people to understanding the disease and know how to handle it in their loved ones.


  14. I care for my nan and write a blog about coping with her dementia. I too often over care for her, but I know she appreciates that I worry too much! People can be infuriating over the dementia topic, they always seem to think they know so much more than the PWD, especially if the PWD does not display typical sympotoms! Here is a link to my blog if you’d like to check it out


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