" Life would be easier for Geoff and me if there was better recognition that people with dementia still have intense feelings, have retained abilities and old memories. "
Less stigma, shame for people with dementia

Anne, from Victoria, wants to see less stigma and shame for people with dementia and their carers. #ItStartsWithYou

“Lots of people think that dementia is just about memory loss, but it’s more complex than that. My husband Geoff was formally diagnosed with younger onset frontotemporal dementia in 2005 after a PET scan at the age of 64. He had been developing unusual behaviours, sudden mood swings and difficulty with understanding language for many years, since he was in his early 50s.

There’s so much that people don’t understand about dementia, so they do tend to make assumptions. I’d like to see greater community awareness about dementia and the fact that there are many different types, and realise the symptoms can vary a great deal.

Life would be easier for Geoff and me if there was better recognition that people with dementia still have intense feelings, have retained abilities and old memories. Being diagnosed doesn’t mean you go straight into late stage dementia, with severe loss of capacity. It is normally a progressive decline, sometimes rapid & sometimes slow.

Geoff has been living with dementia for 25 years. He is now in care. He’s lost capacity in many areas of life but people are often surprised that he still asks every day about his family. I talk him through what our children and grandchildren are doing even though I know he does forget it later. But in the moment he loves hearing about them. It brings him a lot of pleasure.

Long after Geoff’s diagnosis we travelled overseas. What we could do was more limited, but the diagnosis didn’t stop us from travelling for a long time. Geoff still remembers paraponting in Switzerland in 2003 when he jumped off the side of a mountain in tandem and spent half an hour flying through the air and down into a valley. We’ve travelled to Switzerland to visit our son and grandchildren and there was lots of pleasure in that for him too. He still feels intense love for his family.

I hope that people make the effort to learn more about dementia because I think that would be an excellent step toward reducing the stigma people feel. The community would certainly be more dementia-friendly if more people understood the disease better.”

 Posted: September 17th, 2015
Discussion

Jenni said:

My husband was diagnosed with Lewy Body Dementia 3 years ago at the age of 65. His paranoia and hallucinations are largely kept under control with medication. My greatest challenge is his Capgras Syndrome. He has difficulty recognizing me as his wife. Sometimes I am a man, another carer or a 16 year old girl. There is no way to convince him of my identity. I've tried voice recognition from another room, scars only I would have, photos and legal documents. It is problematic when I am a 16 year old girl and it's time for bed. He wants to know when my parents are coming to get me. He will not accept medication from a girl and of course will not sleep in the same bed. If there is anyone else with a similar problem who has suggestions for behavior management that have worked for you, I love to read them.

Dementia Daily Team said:

Hi Susan, Please don't hesitate to call our staff on the National Dementia Helpline on 1800 100 500 for support, information and advice. All the best, The Dementia Daily Team

Dementia Daily Team said:

Hi Susan, Our staff on our National Dementia Helpline are here Monday-Friday from 9am-5pm. Please do feel free to call them on 1800 100 500 for information, advice and support. All the best, The Dementia Daily Team

Dementia Daily Team said:

Hi Susan, You certainly don't need a diagnosis to access our National Dementia Helpline or some of our other support services, including our free counselling service. Please do call us on 1800 100 500. Please do let us know if there is anything else we can do. All the best

Susan said:

I am currently have tests to determine if I have Demementia. I feel quite isolated as I am unable to discuss how I feel. I require a diagnosis to obtain the support I need.

Susan said:

I am currently having tests for dementia. My family noticed the change as I had become quite forgetful. I am having tests and will need to wait on the outcome before a diagnosis is confirmed. I am conscious that I may repeat or forget conversations which can be quite embarrassing. I wish I could revert back to who I was but know that this is not possible. It is also difficult for my family. Hopefully there will be research in the future that will assist those with Dementia.

Susan said:

I am currently waiting for test results to determine if I have Dementia. I am finding difficult to remember dates, appointments and my family state that I am repeating information. I have now chosen to keep conversations to family members only as I am being to feel quite stressed about my current situation. I have chosen to retire from work and have now given up all sporting activities as i would prefer that people do not judge me.

Dementia Daily Team said:

Hi Patricia. Alzheimer's Australia is here to help. You can call us on 1800 100 500, Monday-Friday from 9am-5pm.

Dementia Daily Team said:

Hi Phillippa. Thanks for your comment and I am sorry to hear about your husband. Please do remember that Alzheimer's Australia is here to help. You can call our staff on the National Dementia Helpline on 1800 100 500 Monday to Friday during business hours. Good luck.

Phillippa said:

My husband was diagnosed with Lewy Body Dementia in Feb 2014. In Jan 2012 he had a total knee replacement & 6 months later I noticed cognitive & changes with his balance & mobility. He started having episodes of vagueness & confusion. He was also having constant falls, once he fell against a lower window pane when he went to sit in an armchair & missed the seat sitting on the arm sitting on the window sill & smashing the glass. He also had a car smash driving through a red light. He said he blacked out & had no idea what happened. After assessment by a geriatrician specialising in Dementia diagnosed LBD. Other symptoms were/are REM sleep disturbance where he acts out his dreams. He has difficulty planning & organising easy tasks. He has very poor balance & is unable to walk indoors without a wheelie frame, when we go out he uses a wheelchair. He has very high anxiety resulting in high blood pressure, also a symptom of LBD. After 18 months since diagnosis my husband 65 has slowly changed. If he is unwell or has a fall he has a rapid change where he is extremely confused & very anxious. He is a very high falls risk in all his activities & he is always frightened of falling. At times usually in the evening he has involuntary jerking of his upper body often when he is having a drink or eating. This disease differs from Alzheimer's & Parkinsons but there are definite elements of both in LBD. Some sufferers have the cognitive impairments early & Parkinson's symptoms later. My husband has the opposite. LBD is just one of the nasty neurological conditions under the Dementia umbrella. Many sufferers of LBD have in the past been poorly diagnosed usually Parkinson's & given the incorrect medication which had adverse reactions. Now there is more awareness & people are being diagnosed earlier & being given the correct medication. There is still not enough awareness & sadly the only way to truly diagnose LBD is with an autopsy. My husband is at home with me, I am his full time carer. However I am having assistance through his Community Care Package with his showering because I am to have a knee replacement in a fortnight. My plan is to keep my husband of 42 years at home with me for as long as I can. I know I will have to face placing him in time because caring for him at home will become difficult especially as he deteriorates with his behaviour & mobility. My fear is if I become unwell or worse then what. I hate this disease & I am angry it has invaded our lives. Because what hurts my husband hurts me & vice versa. We do have support from family & friends, plus our support package. But no one really understands. I am doing my best, but I know that in time my best will not be good enough. X

Patricia said:

My mum started getting cognitive decline at 80. I struggled with her for 4 years until I had to put her in a nursing home, there is not enough help for carers to understand what to do.

Carol said:

My late husband was diagnosed at the age of 50 after having many out of character problems for some time before that. He passed away at the age of 57 after being in high care for the last 20 months of his life. Dementia is a lousy disease that is much harder on the carers than it is on the person suffering it. It is essential that the carer attends Support Classes to enable them to be able to care for the sufferer as best they can and that way they will understand most problems as they arise. There is no way that you can handle this disease with out all the help that you can get.

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