project on dementia

[cb123]

Hi all, i am currently on a health access course leading to nursing (hopefully) i have a big final project to do and have chosen dementia. I am a little stuck though as i need a research question and i cannot think of any. I was thinking of doing "early onset dementia-if diagnosed quicker, would it make a difference?" but i think i need more of an argumentative question. Any ideas?
Kind regards.

 

[LYN T]

Hi all, i am currently on a health access course leading to nursing (hopefully) i have a big final project to do and have chosen dementia. I am a little stuck though as i need a research question and i cannot think of any. I was thinking of doing "early onset dementia-if diagnosed quicker, would it make a difference?" but i think i need more of an argumentative question. Any ideas?
Kind regards.

Whilst I applaud your choice of career I think your 'big final project' should come from you-and you alone. Most people who use this Forum are Carers and simply do not have the time to think of things other than caring and supporting others. However, as I am no longer a carer here are a few;

Dementia-Is the care given in many Hospitals akin to abuse?

Dementia-is recent research reporting contradictory findings?

Dementia-why are sufferers reported as bed blocking when there is little help offered for a safe discharge?


I'm sure you will find enough arguments with those.

 

[colincampsite]

Whatever question you come up with there will always be a question fired back at you.

"Does anybody else really care?"

There does not seem to be much of a dialogue between the Doc / Hospital / Age UK and ALz Soc, and last but not least, those in government who are making noises now an election is looming but will soon forget about those with dementia once they are voted in.

I hope I am one day persuaded otherwise, but I rather think that time is a long way off.

 

[Beate]

"Why does dementia come under social care and therefore needs to be paid for?"
Or
"Is there still a stigma attached to dementia and if so, what can be done about it?"
Or
"I wish it was cancer. Discuss"

 

[sistermillicent]

What was it that made you want to do your final project on dementia, there must be some reason, however trivial or silly or huge it may seem to you, it is probably significant and would be the best thing to base your research question on if possible.

 

[Ktynan]

Hello,

I hope you're well and would love to share my opinion if it's helpful. My mum has early onset, we finally got a diagnosis 3-4 years after her first becoming ill. My mum was 62 when we got her diagnosis, I was 23. I think it would have been really helpful for an earlier diagnosis. Mum was really unwell before her diagnosis and as a family we didn't really understand what was going on. As soon as we had a diagnosis getting help from social services was a lot easier, so on a practical level of keeping mum safe earlier would have been better.
Emotionally it helped us have a word and a slight understanding of what mum was going through. It helped us understand what was going on was nobodies fault, it wasn't mum changing her behaviour, or having depression. We really had to fight for mums diagnosis. She was in hospital in the October, and we still didn't get anything until the May- through lots of fighting.
I hope that helps a little, if you've got anymore questions feel free to ask.


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[Ktynan]

I touched on misdiagnosis, but a lot of the fighting we had from the October was health professionals trying to diagnose her with depression. We knew it was more than that and that she was on the wrong meds and needed more help.

Best,


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[cb123]

Hi, not sure how to submit a reply!arrgh!
thanks for telling me of your story, i hope things are a lot better for you and your family now. So an earlier diagnosis would make a difference. Do you think their should be more dementia awareness especially EOD for health professionals? misdiagnosis seems to be very common, and it delays the actual true diagnosis, hence being a complete nightmare for all those involved.
regards

 

[john51]

I was (still am) of working age when I got my diagnosis. The real problem was getting the consultant to take seriously that a man in his 50s might have dementia. A change in the attitude of specialist would be key from my point of view. It took asking, demanding and even complaining to get anywhere. There was a real attempt by the neurologist and demenia psychiatrist to lose me in the system.

At the time of my diagnosis, I was going through competency proceedings at work. Having been a very high performing teacher this was really depressing. After the diagnosis was given my employer was able to apply a different system. It was no less threatening and I kept getting letters which told me that my ill health could result in my dismissal, but it did mean that they had to look at early retirement for me.
Earlier diagnosis might well have helped with this

 

[DazeInOurLives]

Hi, i am doing a project for uni on Early Onset Dementia., i want to find out from anyone about the diagnosis time scale, and whether if it was made earlier, would it make a difference? Would like to hear peoples opinions also, about health care professionals and their lack of knowledge surrounding EOD. and misdiagnosis
kind regards

My Mum was diagnosed at age 65, but had noticed symptoms for 18 months before this, so obviously EOD but not technically because she had had her 65th birthday by the time she was actually diagnosed. She had had a major cancer operation at age 63 and my personal feeling is that this physical and emotional experience brought forward something that would probably have manifested eventually anyway. My hunch is that she suffered a degree of hypoxia during her cancer operation, which, if was the case then this early presentation may potentially not have happened.

However, the Alzheimer's was still diagnosed pretty early-on in terms of its stage and the galantamine slowed/held her disease for several years, initially at a theoretically sub-therapeutic dose of galantamine because she couldn't tolerate the side effects well. So early diagnosis of any dementia, be in early-onset or otherwise may make a big difference to someone if their disease responds to medication and they can continue with a decent quality of life.

She still drove, cooked & cared for Dad as best she could for several years. When his Alzheimer's was diagnosed, the fear that this brought about sent her own disease into free-fall, but that's another story.

She is now in her 14th year since diagnosis - 15-16th year really since she first noticed symptoms. 20% of her whole life with Alzheimer's! So she has done very well, I think mainly by virtue of having the type that responded to medication. I also think that feeling safe has played a large part in her long term well-being - at times when it was harder to maintain these feelings (when Dad was diagnosed with Alzheimer's, became worse over several years and eventually died), at each stage her disease has progressed dramatically. Not surprising, watching your life partner deteriorate with the disease that you have yourself!

In answer to your question, perhaps she could have been diagnosed 6-12 months earlier, but it is impossible to know how much difference this would have made to the outcome.

Is a long, slow journey what people want though? It wouldn't be my choice.

With warmest wishes,

Daze

 

[cb123]

How could there be more awareness of people that have Early Onset Dementia? I think health professionals need to learn more about this, in order for quicker diagnosis, which does make a difference to a persons health, in every aspect.
regards

 

[Ktynan]

Hi, not sure how to submit a reply!arrgh!
thanks for telling me of your story, i hope things are a lot better for you and your family now. So an earlier diagnosis would make a difference. Do you think their should be more dementia awareness especially EOD for health professionals? misdiagnosis seems to be very common, and it delays the actual true diagnosis, hence being a complete nightmare for all those involved.
regards

For my mum and my family I think there defiantly has to be. As I said they kept saying it was depression, I think because of her age, they didn't consider dementia. It was actually a family friend that had read about frontotemporal dementia, that brought it up to us and spurred us to push for a diagnosis.

I think, in my mums situation, if she had been displaying the same symptoms 10 or 15 years on in her life, then dementia would have been explored earlier.

Things are better, as they can be for mum and our family now thank you. Like I said having a diagnosis opened up doors to more care, better medication, and a deeper understanding on our part. I wish you luck with your work, I feel it's really important for EOD to be better understood, not only for healthcare professionals, but in society too. Best


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[cb123]

if early onset dementia was diagnosed quicker, would it make a difference at all?

How could an earlier diagnosis make a difference? would it? How long does a diagnosis take?
kind regards