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Using Social Media, Reading and Writing for Support

Another wonderful chat on Twitter has led to this post. We were discussing the use of social media and how it has helped support/educate us and others with regards to dementia and caring. As well as the importance of other medias such as blogging. Why is reading/writing blogs so important/useful these days?

I believe we came up with some great answers and may make some of you more aware as to why I now spend a majority of my time online, or talking about my online life.

First question was with regards to using social media as support. The key points here were:

  • When you need someone to listen, the online world can usually oblige. So in this case when hope starts to fade an online friend can help you regain it. Helping you to feel less alone
  • You can seek advice 24 hours a day 7 days a week. No annoying office hours with seemingly extended lunchbreaks (yes doctors surgeries I’m looking at you)
  • You can make contacts and friends all over the world and you feel as though you are part of a community, regardless of location, which I find gives me more worth as I feel I have more capacity to help people. This allows you to connect, share and learn with others in similar situations.
  • Leading on from the previous point you can keep in touch with other professionals (globally) and this could assist with finding out about techniques and policies that are working well overseas. As well as being able to find and organise other carers, events organisers (like the wonderful gele tea and Leeds Donkeys) and organisations.
  • Those “hard to reach” groups such as ethnic minorities, travellers, gypsies etc may find it easier to access information that is not so readily available to them in wider society. But with all people majority or minority groups social media can be useful in reducing social isolation (as well as helping give independence to those with reduced mobility by allowing them to communicate and stay updated). Check out this link http://www.abertay.ac.uk/about/news/newsarchive/2013/name,12623,en.html
  • It is easier to access and find information on research. Especially with dementia, I have found many reports and studies that have helped me find things to help nan
  • Social media can also be used to trigger memories, check out this link from the Guardian http://www.theguardian.com/social-care-network/2013/may/20/scheme-dementia-trigger-memories
  • Social media makes it very easy to make contact (a recommended site here was carersuk forum – which has a simple format and is good for technophobes)
  • Social media also gives us the opportunity to chat to others around our lifestyles and duties, again not being pigeonholed into the almost unworkable work hours.
  • Using social media as a tool to learn and support ourselves is also giving us the chance to explore the subject with anonymity, so it can be less embarrassing as well as a useful tool for those who do not wish to approach agencies.
  • Quite simply, with mainly Twitter in mind (as a friend pointed out, it seems less intrusive than other social media sites) there is IMMENSE (this word was used a few times) support available. The experiences and people are also extremely diverse so it is highly likely you will find what you are looking for.
  • Also social media has proved useful in helping to track down and find those with dementia who have gotten lost while walking or wandering http://www.abertay.ac.uk/about/news/newsarchive/2013/name,12623,en.html

So if Social Media is so damn wonderful, why should we read blogs:?

  • It is a much more personal approach. Not hindered by character limits. Which means it is more engaging and can feel more informative
  • Blogs can be used as online resources. I have found several (and hopefully written) posts that have basic factual information as well as opinion that can be used in day to day life for carers and carees.
  • Reading and commenting on blogs can help expand that support network and community. In the same time as expanding our knowledge of dementia and its effects
  • I personally find it uplifting to read other people’s methods for coping with days and behaviours and assisting those with dementia
  • Reading blogs, which can be very in depth allows the love, passion and pride to show through. Giving a much deeper connection than a two sentence update on social media.
  • Blogs can also help to highlight the commanalities as well as differences between situations, giving us a better view of partnerships, sharing ideas and opening conversations.

Blogs are not only helpful from the points of view of those in the caring world though, here are a few opinions I collected from outside the Twitter circle:

  • The blogs are interesting and informative. Makes you realise how amazing carers are. After reading posts I would not be as scared to be in that situation as I might have been
  • Learned how to deal with aggressive behaviours. It can be scary but patience and perseverence are key (to obtaining goal). Even if it takes ages. Could take minutes or hours (I got the feeling this person understood that it is OK for things to take time, sometimes gives better results)
  • Learned lots as a long distance carer, and about my daughter who cares. I am finding out about my relatives past, that they never shared with me. It is nice to have those memories once the person is gone.

So taking all that on board as incentives for writing a blog. Why are some of us so keen to share:?

  • It is a personal approach and something we are passionate about
  • It gives us the tools to be bold. And to publicise what we do, in sharing our stories. I personally started mine as a diary, as a way to know how far I’ve come, (as well as the importance of raising awareness of dementia and its effects)
  • It can be easily personalised in terms of content, style, reasons and impact
  • We can share not only experiences but also innovations (take a moment to look back at my feeling worthwhile post, there is a link to a blog, where he also shares his cost effective ways of aiding. As carers we have noticed a trend, if something is labelled for dementia it is more expensive. There are ways round this so keep your eyes peeled, and let us know what you find).
  • It is a way of coping, and gives us a memory book.
  • We can be absolutely shameless (a bit like I am in promoting my blog on social media) and honest with pretty much no limits except those you feel comfortable with.
  • Blogs are proving crucial in the ways we raise awareness, and helping others learn what we learn.
  • It is becoming less scary to talk about it, because more people are being public about it. In this way it is breaking down barriers (another reason I started, to get people to be less embarrassed about mentioning dementia)

Ok, so it’s all very well to share your dementia and caring stories, but how much information is too much information? Take for example this link http://www.forbes.com/sites/natalierobehmed/2013/07/30/death-in-the-age-of-social-media/ where a man live tweeted his mothers death.

  • Personally I feel no limit with the subjects I can talk about, just whatever I feel comfortable at the time with sharing. I think people appreciate my honesty, I certainly appreciate others’. It makes it seem more real, not glossed up and glamourised.
  • However some people are bound by work policies so have to be careful about what they post online. http://paulbromford.wordpress.com/2013/05/17/20-things-they-never-told-us-about-going-social/
  • We agreed online that there should be a resource to help other carers and carees understand how much to share online.
  • Essentially we have to RESPECT others confidential information. Which is why as often as I can I eliminate names and ask permission of those who will be mentioned.

I found a great comment in the conversation which I think sums up this whole post perfectly (little bit jealous it’s not mine (!)). Overall blogging and social media, the support and community we have built up is great. But it is sad that we have to do this (to find our own resources, help, support, and innovations) when the system is failing us at the most crucial point.

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