How can family members, who have a relative dealing with Alzheimer's disease, be better prepared?

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Hi everyone,

I'm a University student from the University of Johannesburg. I'm currently working on a research project (as part of my honours degree in communication design) based on how families, who have a relative dealing with Alzihmers, could be better prepared for the different stages of the disease.

I was hoping if any of you would mind sharing some of your experiences, challenges, or concerns and  how family members could be more aware and be better prepared for the different stages of the disease.

My questions include: 

What your knowledge was of the disease before your relative was diagnosed?

What would you have liked to know before the diagnosis of your relative?

What are the biggest challenges you face?

Do you think families should be better prepared for the disease and if so how?

And do you think there is a stigma with Alzheimers?

I do hope that this discussion might help others cope.

As someone who has taken care of a relative who had the disease (my gran), I know the importance of this study and I don't take it lightly in any way.

Thank you!

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7 Replies

  • Posted

    No one can prepare for Alzhimers. It is an insidious disease. You watch the person you love die a slow horrible death.
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  • Posted

    My lovely Wife was diagnosed 2010 Alzihiemers Disese

    I had no Knowlege of it

    I looked after my wife for 6 years heart broken when she had to go into a care home

    People do look at her in town lack of understanding of the Disease

    It is the hardest thing I have ever had to coup with I am heart broken dying a little bit every day, watching her suffering, her bigest problem is UTI infections never seems to be totaly clear of them.

    I am now 78 my wife is 81 

    My big struggle now is most care homes run as profit making buisneses. this rearly anoyes me, not all cares are good ones, and not all care homes are good ones, you cannot make a good caring person they have either got it or they havent 

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  • Posted

    Hi Bianca , first of all I am very sorry to hear about your news also myheart goes with you, I have a friend who experience to see her father in law who used to be so active-a director of a very reputable company have slowly diminsih his role due to his condition, but they wife, the sons and the families are vry loving toward him, despite they are able to pay someone to have 24 hours support or even paying a nurse to give the a rest, but the family take care of him - they take turn..with a tender loving care and understanding and also very upsetting but accepting his condition they all come to term and nothing they can do a part of pray to God and just be there for him..they provide lots of supplements with help him a little bit better..however he just needs lots of support from his family..no one will prepare from the worszt and the situation, but once the specialist diagnosed, all of the family were poractive read and understand the condition, the effect on them..and they are really such a loving family..they believe though..with the caring and soo much love..that they think that their love one might not understand but respect and love is there.the family feel better..because they know this person used to provide everything for them..in a way..I suppose they give back the love and care my friend's fagther in law giving to them throughout his life..but their family believe with a better care and carry 0n with a better supplement he is going to be better. I hope this will help you a bit !
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  • Posted

    I think families should be better prepared for the disease because having an alzheimer is not very easy to take care of plus I have watched many shows that tells the life of a person having an alzheimer's disease. All didn't went well, plus most of the time they get lost due to having lack of security for the person or just plane careless. Having a 3G GPS tracker on them could save a lot of time and pain finding them if ever they get out of the way. This people are very vulnerable so careful safety precautions and environment safety should be setup well.

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  • Posted

    I knew a fair amt about Alzheimers and vascular dementia because I have been a nurse for many years. My father was dx w/Alzheimers but I think he had Dementia with Lewy Body. Anyway, he realized, visited an attorney and had a living will stipulating his care, DNR, no feeding tube, etc. This was extremely helpful to us when he reached those stages because the nursing home personnel tried to guilt us into different things to which he had said no. I am Catholic and DNR is fine, but it was extremely difficult to say formally "no feeding tube", as far as I know you never stop feeding people. But the body physically cannot absorb the food after a certain stage of dementia and this causes so many problems with aspiration, pneumonia, horrible diarrhea, makes people quite ill. I have to talk to an ethics person about this because it still bothers me that this is not well known to the general public and if it's really the ethical thing to do or not in these cases. It's not like a vegetative state when the body functions more normally and the mind is damaged. He was 79 when he was diagnosed and was perfectly healthy in every other way, no routine meds, all his teeth, no hearing aide, very active but he did not live but a few years. Also, he quit driving on his own. We were very lucky in that way. We tried to prepare, several of my siblings are nurses, but it's quite shocking when it's your own personal family member, I can't say we ever felt prepared. I don't beleive there is a stigma at all.

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  • Posted

    Hi @bianca66594 and rest of this thread,

    My father (68 years) has recently started forgetting small things here and there throughout the day (forgetting to lock the door, not feeding his cat, not turning off the TV, etc) and I suspect that he may have started developing dementia or alzheimer's (I am not really sure... need to go to get him checked with a doctor).

    I have begun exploring my options for tools to help him but I was wondering if any of you had any suggestions or insights on these diseases -- any help would be much appreciated! 

    (Background: I am a single working mother and work an hour away from home so it's not really feasible for me to be with him all day. I would hire a caregiver but it's just not an option right now financially which is why I am looking for cheaper tools to help him with reminders and such (or a way of monitoring him I think. Don't really know, I am open to anything really at this point)

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  • Posted

    Research is still going on. For a clear cut answer we have to wait. On the basis of research we make assumptions. Some of the assumptions make sence. I also go through a lot of reseach because one of my relatives is diagnosed with the Alzheimer's to find the solution and subsiquently writen an article in sooper article dot com. The title is Alzheimer’s or Senile Dementia Prevention and Control. You can read this article. Perhaps this can help your research.

    Thank you

    Best of luck for your research

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