Tutorial Six- Communities

For around 14 weeks, one day a week I was placed in a rest home which catered not only for elderly, needing full time care but attached to the same facility, was a dementia unit with around 25 patients, which is where i spent my time. I new very little about this disease prior to my placement and on my first session was extremely overwelmed. However by the end of my 14 week period i was very intriged by this disease.

The reason for this blog is to reasearch online communities relating to a choosen topic and due to my fieldwork experience I felt Dememtia was appropriate.

Dementia

Alzheimers New Zealand states that Dementia occurs as a result of physical changes in the structure of the brain. Changes can affect an individuals memory, thinking, behavior, personality and emotion.

The three online communities I have selected are:

1.  Dementia, Life after diagnosis- Facebook group
2.  Dementia thoughts- Blog
3.  Dementia Advocacy and support Network (DASNI)- DASNI - Chat room

Dementia, Life after diagnosis - Facebook

This page was set up for anyone who knows of a family member, a friend or you yourself suffering from dementia. Members are able to talk to other people who are going through the same emotions as you. Within this site members are able to post things such as, youtube clips or simply to explain about their mother going through dementia. It is through these posts which people contribute to the site. An example of what people put on this site is:

 "Paul - I think it's great that you set up this page. My Mum was diagnosed with dementia and it was a 5 year nightmare. Wish I'd have known and understood more about dementia at the time - so the information that is available though this page and our very own Norms is brilliant and will be a great help for many people :-)x"

Dementia thoughts- Blog

'Dementia thoughts' is a blog which the creator states " I began this journal to share my personal experiences as a caregiver. It is my hope and desire to develop a 'communilty' with other caregivers to share advice, restore hope and give encourgement. Please comment or submit a daily tip, your insight, thoughts are welcome". This blog has been on going for a number of years. The creators Grandmother is often used within the posts, as she users her to explain her experiences during caregiving.  Youtube clips or articles relating to dementia are also used. People are welcome to comment on posts and interact with the blogger. Here is an example of what is posted, I have also included a link to this particular post- Truth

When dealing with Alzheimer's and Dementia patients, when does one tell the truth?

Today, since I arrived home from work, Muddear has asked me on numerous occasions... "Where is my baby?" I tried to rationalize with her, but of course it didn't work. I would ask, "Muddear, how old are you?"

"That doesn't matter. Where is my baby?"

"But, it does matter. You are 97 years old, there is no way that you have babies. They are all grown."

"No they are not. Where are my babies?"

A little later, I tried again to rationalize with Muddear as she asked...

"Did somebody take my babies?"

"Of course not Muddear, your babies are adults now."

"No they are not."

"Muddear, tell me something, when did you start having babies?"

"Oh when I was about 79."

"Now Muddear, you know you didn't have babies at 79. That's too old - not just for you, but no one has babies at 79."

It is almost 10:00 p.m. and this issue is still not resolved. She keeps asking us... "Where is my baby?" Should we play along with her? I fear that this would create even more problems.

What do you think?"`


A topic which is often discussed, do you lie or tell the truth. My supervisor at my placement gave me great advice surrounding this debate. She explained that you need to pick the times where it is appropriate to, what she described as telling a 'fib' and there are other situations where you need to address the problem and tell the individual, "your husband is dead". The skill is realising the times you tell the truth and the times where you go along with what they are saying. However I do believe by 'lying' your not harming them but more importantly decreasing the emotional struggles they are already experiencing.

Dementia Advocacy and support Network- DASN

This website is a "world wide organization by and for those diagnosised with dementia, working together to improve our quality of life". This website includes an area where members are able to chat on line and discuss your own experiences, get advice, give advice and above everything be understood by others going through what your going through. It also provides information about dementia . Here is an example of the website

"Our purpose is to promote respect and dignity for persons with dementia, provide a forum for the exchange of information, encourage support mechanisms such as local groups, counselling, and internet linkages, and to advocate for services."

Why people use this site

The general belief for each site is, they have all been created to help, support, and give advice to every one of their members. Whether your a caregiver, just been diagnosised or a family member it is within these sites which you are able to express what your feeling.

Ethical Issues

The only ethical issue I considered was to do with the blog. Does the grandmother know her daughter is discussing her in such a way? Besides this there is nothing I could think about. The facebook page is a page where if you are not a member you are unable to see the post. In many of the communities people are encouraged to take a active role within the site, if you don't want to you don't have to.