Trying to find out more about Alzheimer's

Melissa82

Registered User
Oct 19, 2016
2
0
Hello, I am a university student who's project is looking at developing a product which may help to prevent Alzheimer's or slow down the affects if it's caught early enough. I have researched and I have decided I would maybe like to make something to encourage people to eat a healthy diet and get more exercise as I know some people find this difficult, or maybe a product which would help doctors to test for Alzheimer's. As people who deal with the disease on a regular basis is there anything you could tell me about Alzheimer's and it's affects on a person in their day to day life, things they really struggle with, anything you can think of which might help make things easier or even which would make the testing process simplier.

Thank you!
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
Hi Melissa, you're trying to do single handed what loads of people spending millions of pounds haven't yet found? Good luck, it has happened, rarely, in other fields. I would suggest you find the fact sheets on this site and start reading the basics of dementia.
 

Melissa82

Registered User
Oct 19, 2016
2
0
My degree is product design, so would be designing something to maybe try and make life easier for somebody with Alzheimer's. I have done loads of research on lifestlyes which aim to help you not to get it and all the warning signs and how people are tested. , was just trying to get a better insight from people who work first hand with the disease if they would have any ideas which they feel would help them and others, even improving something which already exists! :)
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Oh dear. On so many levels.......

Firstly, the idea that you can prevent dementia by adhering to a particular lifestyle is an urban myth. Exercise and good nutrition may help possibly protect you from dementia, but the effect has been grossly exaggerated in the popular press. By the time that you have actually got dementia it makes no discernible difference at all - assuming that you would be still able to follow this lifestyle anyway. No good recommending going out for a walk every day if you have lost mobility!

If your aim is to improve dementia, then Im afraid that you are on a non-starter. Nothing has been found which will improve dementia. I do hope that your research has consisted of more than lifestyle websites and advertising twaddle from supplement sellers - hardly independent or objective.

Many people come on here with an idea for a gizmo which will remind someone with dementia to take medication/drink some water/go to the toilet/etc and the problem with all of them is that by the time that person needs prompting their memory is so poor that as soon as the prompt has stopped, within literally 2 or 3 seconds, that person has forgotten all about the prompt and what it was for.

I do feel that you need to investigate actual dementia sites - browsing the threads on here, especially the "I care for someone with dementia", will give you a lot of insight as to the problems. So many people think that dementia just means that you get a bit forgetful and perhaps put things in wrong places, whereas the reality is far, far more.

Good luck with your degree. :)
 

LYN T

Registered User
Aug 30, 2012
6,958
0
Brixham Devon
My degree is product design, so would be designing something to maybe try and make life easier for somebody with Alzheimer's. I have done loads of research on lifestlyes which aim to help you not to get it and all the warning signs and how people are tested. , was just trying to get a better insight from people who work first hand with the disease if they would have any ideas which they feel would help them and others, even improving something which already exists! :)

Melissa. I really do admire your good intentions BUT I do think that you have next to no chance of realising your objectives unless you have a thorough understanding of Alzheimer's (or other kinds of dementia). For instance, the oft repeated 'lifestyle' choice of healthy food and exercise seems to dominate the media reports on how to avoid Dementia and many other serious diseases.

In my opinion, which is based on my late Husband's 'lifestyle' in which he did all the obviously GOOD things, the medical model appears to use thinly veiled 'blame game' tactics to place the focus/blame on the sufferer.

My Husband had all the 'warning signs' at the age of at least 58/59. He even told his Consultant that he had memory loss. He was told it was anxiety/depression. He was sectioned with severe psychosis-and never recovered. So, if there is ONE thing that you could do? Perhaps devise a way for Dementia specialists/Psychologists/Gps to LISTEN to patients with concerns. Listen to their relatives who also KNOW WITHOUT DOUBT that there is something wrong with their spouse/parent. Do SOMETHING to diagnose dementia BEFORE a patient scores 7/30 on an MMSE test.

Get them to not have pre-conceived ideas. That would be a start.

As for any ideas? Have a look through the heartbreaking posts on this Forum-then see if you can still help. It will take a lot of reading.
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
Another thing is that there are about 100 types of dementia, all with slightly different symptoms, but all leading to one end. Quite a lot of people have two or three types. How are you going to cope with that? In my OHs case, he couldn't use anything electronic from a very early stage, so suggesting easy phones, labelling etc, just didn't work.
He had a pretty healthy lifestyle as well, doing many of the things 'recommended' to keep dementia at bay. Though he might have been doomed by his genes, both his sister and father had dementia.
There is a saying on here, if you've seen one person with dementia, you've seen one person with dementia. It means that everyone is different.
I'm sorry we are all so negative, but we have seen many people asking similar questions and having similar aspirations. Sure, it would be great to update something, or invent something to help, but mainly pwd need a pair of hands and someone with endless patience. They all end up needing washing, dressing, food preparing, toiletting as these things are eventually lost. That's if they agree that there is something wrong with them!
 

Aisling

Registered User
Dec 5, 2015
1,804
0
Ireland
Hello, I am a university student who's project is looking at developing a product which may help to prevent Alzheimer's or slow down the affects if it's caught early enough. I have researched and I have decided I would maybe like to make something to encourage people to eat a healthy diet and get more exercise as I know some people find this difficult, or maybe a product which would help doctors to test for Alzheimer's. As people who deal with the disease on a regular basis is there anything you could tell me about Alzheimer's and it's affects on a person in their day to day life, things they really struggle with, anything you can think of which might help make things easier or even which would make the testing process simplier.

Thank you!


Sadly there is no product which can prevent Alzheimers. Doctors and consultants have access to tests. A brain scan is also used in diagnosing this disease. Information regarding Alzheimers is widely available on Internet. It is a progressive deteriorating disease.

Aisling
 

Aisling

Registered User
Dec 5, 2015
1,804
0
Ireland
Hello, I am a university student who's project is looking at developing a product which may help to prevent Alzheimer's or slow down the affects if it's caught early enough. I have researched and I have decided I would maybe like to make something to encourage people to eat a healthy diet and get more exercise as I know some people find this difficult, or maybe a product which would help doctors to test for Alzheimer's. As people who deal with the disease on a regular basis is there anything you could tell me about Alzheimer's and it's affects on a person in their day to day life, things they really struggle with, anything you can think of which might help make things easier or even which would make the testing process simplier.

Thank you!

People suffering with ALZHEIMERS are vulnerable. They forget things. We as carers treat them gently and respect their dignity.

Aisling
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
I agree wholeheartedly with all of the above.

OH never smoked, is vegetarian, got lots of regular exercise, occasionally indulged in alcohol and never used drugs. He was diagnosed with atypical Alzheimer's over two years ago and one thing I have learned is that within each of the classifications of dementia no two people are the same. They are, each and every one, different in their needs and behaviors, different in their responses to their diagnoses and treatment and to those who care for them. Many have other health issues that make treatment and medication highly complex.

I don't believe that you have any idea of what you think you are trying to do and I recommend that you do a whole lot of research and then rethink your position. I am sure you are well intentioned but sadly if that was all it took, we would all be smiling.
 

Beate

Registered User
May 21, 2014
12,179
0
London
Gosh - if someone paid me a pound for every product design student coming here with a half-baked knowledge of dementia, asking busy carers to give them an idea for a project, I'd be rich. Dementia isn't a lifestyle disease. If it was preventable by exercise and diet, there wouldn't be so many cases.

The dementia testing process is a medical process, and I fail to see how a product design student can help with that.

As for encouraging people to eat healthily - if you get a PWD who eats everything happily, you're blessed. Taste changes and often people prefer to eat only sweet stuff anymore. It is then useless trying to get them to eat healthy food, as just trying to get them to eat anything is a struggle. If it's a question between eating nothing and eating cakes, the cakes win!
 

Steve115

Registered User
May 17, 2016
99
0
Huntingdon area
Hi Melissa,

I agree with all of the above. My wife was diagnosed earlier this year having 'hit a brick wall' virtually overnight.

She was always very healthy, walked/jogged 5 miles per day every day, ate healthily, had lost of hobbies and interests that she was particularly good at.
However, about 6 years ago she suffered a small TIA, following medical investigations etc she was given a clean bill of health and picked up her life where she left off a few days previously.

During the intervening 6 years there were odd things happen that suggested the stroke may have impacted her memory but nothing to indicate what was coming our way.

Mid April she became delirious with an infection, did not who she was, who I was where she was or where she lived. Ten days in hospital did not show up anything initially. However, a second scan 10 days later showed that her brain had been subject to significant damage from mini strokes killing off large number of brain cells. Obviously these cannot be replaced. And of course the mini strokes continue. As a result she has mobility problems finding it difficult to stand up, walk, move up or down stairs, problems with dexterity means that she cannot dress herself easily, cannot do up or undo buttons, lift cups etc, etc. I now have to care for her 24 hours a day as she cannot be left alone for long. Tools and products help me rather than her as more often than not she does even recognise what is there let alone actually use it.

We did not see this coming at all as we were doing all the things deemed necessary to remain completely healthy at the start of our retirement this year.

I understand where you are coming from and applaud you for what you are trying to do but you have to see through silly comments from celebrities and politicians because currently, even though they are pouring millions into research, there is no solution that can stop the development of this illness. Even though my OH and I have been in this position a few months I could talk to you all day about what happens and the impact that this has had on us but our experiences would be totally different from the next person you spoke to.

Good luck with your work.
Steve
 

nitram

Registered User
Apr 6, 2011
30,075
0
Bury
The repeated requests by design students trying to design products to help with dementia is good in the sense that they are enquiring and hopefully learning something about the reality of dementia.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
The repeated requests by design students trying to design products to help with dementia is good in the sense that they are enquiring and hopefully learning something about the reality of dementia.

Yes nitram, that is very true, though sometimes I wonder whether they bother or whether they metaphorically shrug their shoulders and do something easier.
 

Chemmy

Registered User
Nov 7, 2011
7,589
0
Yorkshire
Two product requests that I recall members talking about this year were a full-size apron that was pretty but easy to get on and off over the head, and an adult sized dinner plate with a curved edge all round, not just at one side.

Hardly degree level design projects though, I'm afraid.

However, a product that helps carers to cope with a specific practical problem is likely to be a better option for you to work on than the holy grail of trying to design something to prevent or stop the disease. Maybe it would be helpful for you to call in to your local carers cafe or a local care home and discuss the problems carers encounter at first hand?
 

Padraig

Registered User
Dec 10, 2009
1,037
0
Hereford
Sadly the best method of learning more about Alzheimer's is to become a full time carer. Even then I discovered the 'experts' were of little help over the years I cared for my wife. One advantage I had over many people was that I'd grown up alone, no family or home and so had no option but to live life my own separate way.

There were a number of things I learned in the early stages. Number one: was to question myself 'how would I feel if it were I that had AD?' The answer: angry, agitated and upset at not being understood.
Secondly: The earliest memories from our childhood are the last to fade. Form my own experience I can clearly recall the layout of rooms and the name of staff in the Institution I spent eight years from the age of two. After years in the forces I can't remember many name of fellow serving members. The best analogy of the memory I can come up with is; 'a box of tissues': first one in is last out.

Thirdly: There is no cure and no known period of time you have to share with the one you love. In my wife's case I chose to spend each moment of her time in her company till her time ran out.
Fourthly: Rather than accept medication for each problem we encountered, I chose to look for the underlying cause and tackle them.
To understand each individual's AD is extremely complex. My dearest wish is that I never end up with AD, for there is no way our son or daughter would understand life in the 1930-40s. So often we see posts of loved ones wanting to 'go home' a place to a of their past, where they felt safe and were looked after and understood.
I wish you the best of luck in your attempts of understanding AD.
 

Digilux108

Registered User
Nov 7, 2016
45
0
Essex
It might have some merits, but don't think it is that straight forward.

We have to bear in mind that we run on electricity. In fact, the brain is a complex, yet beautifully engineered electrical and chemical powerhouse. In the simplest of terms, think of cells (neurons) as small factories that perform dozens of vital functions. They produce energy, enzymes and proteins. They also store the information produced, which is transmitted across a neural network of interrelated and interconnected cells via a specialised transportation system.

Each cell creates energy because of an unequal distribution of electrically charged particles between the interior and exterior of the cell. This energy is conveyed across the network via electrical signals, which are converted into chemical signals, and then back into electrical again, further down the line. Transmission of signals occurs at a point called the synapse where neurotransmitters, or chemical messengers if you like, pass the information from one cell and another.

Studies have already established the presence of certain toxic proteins in AD that induce chemical imbalances by causing alterations and disruptions within cell structures. These proteins are known as amyloid plaques and tau. They not only impair cell function, they can also cause cell degeneration, eventually leading to cell death. It is also believed that that there is a correlation between loss of synapse and cognitive decline and memory loss. Given the vital role that each factory plays within the neural network, it goes without saying how important they are and that they have to be healthy for us to function properly.

The problem is that scientists have yet to discover the mechanisms that give rise to these toxic proteins. This is compounded by the fact that there is still a lot that we don’t know about the brain, that dementia affects people in different ways and that there is no single cause. Vascular dementia for example, is caused by a blockage of one of the penetrating arteries that provide blood to the brain's deep structures. Some cases may also reveal enlarged ventricles. This is associated with neurodegenerative disease. Ventricles are cavities within the brain that are filled with cerebro-spinal fluid (CSF), which supplies nutrients to the brain.

Some people may argue that dementia is caused by our lifestyle habits, poor dietary habits, pollutants in the environment, taking medication that is no good for us (like benzodiazepines), falls and head injury, smoking, lack of, or too much exercise, or free radicals for example. Free radicals are highly reactive molecules that bounce around inside the cell and can damage cell structures. Given the nature of how the cell works, perhaps the problem is caused by issues within the electrochemical process. Perhaps it could be a combination of all these factors. We just don’t know. However, we need to consider everything and attempt to mitigate any risk.

What we do now is that dementia is not going to go away. It isn’t age related and shouldn’t be dismissed as such. As a wider community of people who have experienced dementia in one way or another, we have to stay positive and we must stay focused. A lot of people are working very hard to find a solution to this problem. But we do need a tidal shift in thinking, perceptions and attitudes, and we also need to shift the balance of research investment towards the dementia side of the scales. As things currently stand, investment into dementia research is circa £90 million, compared with the £560 million invested in cancer research. Given the magnitude of the problem, which is projected to get worse in the coming years, something needs to change.

My mother died because of dementia (AD and vascular), and like so many of you on this forum, I too am driven by a strong desire to see an end to this horrible and cruel disease. But there’s still so much work to be done, however.

Another thing we can all be certain of is that we will not always be around, but defeating dementia today must become our legacy for tomorrow. This is the goal I would like to see being reached in my lifetime at least.
 
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theunknown

Registered User
Apr 17, 2015
433
0
Oh, if only it was as simple as having a healthy diet and getting exercise. Dementia forges its own path and, without the state providing the money for research, who knows when people who suffer from it will be properly helped.
 

Digilux108

Registered User
Nov 7, 2016
45
0
Essex
Oh, if only it was as simple as having a healthy diet and getting exercise. Dementia forges its own path and, without the state providing the money for research, who knows when people who suffer from it will be properly helped.


This is such a complex, controversial issue which has polarised views around the world. There's even a neurosurgeon in the USA who has become a bit of a conspiracy theorist.

There are many factors that may pose a risk. Interestingly, I read that someone has been looking into obesity and the APOE4 gene, which increases the risk for high blood cholesterol, cardiovascular disease and Alzheimer's disease.

Part of the brain cell includes a long pipeline that extends from the cell body and carries the electrical signal. I suppose you could say a bit like a cable. This pipeline is covered by a fatty substance called myelin (an insulating sheathe if you like) and since cholesterol is needed for the repair of myelin, I would imagine that a diet of bad cholesterol foods with high levels of saturated fats could pose a risk. It has been suggested that loss of myelin contributes to the development of AD because Obesity and the APOE4 gene may damage myelin.

Something to think about.
 
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