Guidelines

Guidelines


Top Tips for Posting on Dementia Support Forum

  • Remember that no one is an expert: Dementia Support Forum relies on peer to peer support so please don’t feel shy about sharing your experiences with dementia, we’re here to listen.
  • Remember that Dementia Support Forum can be publicly viewed: Whilst Dementia Support Forum is a supportive community, remember that anything you post here can be viewed by anyone with access to the Internet. Never post information that might help someone identify you or where you live.
  • Ensure you abide by the community rules: i.e. please don't use foul language or insults; don't use symbols e.g. * to partially obscure swear words; don't name care providers or individual employees associated with them; don't advertise; and don't 'hijack' a thread by taking it off-topic.
  • Remember that Dementia Support Forum members often post at times of stress: Try to be kind to each other and treat others the way you would like to be treated.
  • Don't reply unknowingly to old threads: Before you reply to any post, always check the date of the last message that was posted there. You will find the date and time of each post at the top left.


Advertising

We’re a peer to peer support service so we don’t allow advertising on Dementia Support Forum. Please don’t try and promote products or services here in messages, your username, or signature. Mentioning a particular item or service in response to a question is fine as long as you don’t have any connection to it.


Alternative and complementary therapies

Members of Dementia Support Forum are welcome to talk about their experiences with complementary and alternative therapies on Dementia Support Forum but please don’t make claims about their effectiveness or advocate for their use.

Also please don’t:

  • Claim that complementary and alternative therapies can cure dementia, control associated symptoms or reduce the risk of developing it
  • Tell anyone to ignore a medical expert’s advice.
  • Encourage anyone to attend practitioners of alternative or complementary therapies instead of a medical expert.
  • Advertise any alternative or complementary therapies for commercial gain.


Campaigning

Members may wish to use Dementia Support Forum to highlight a dementia-related campaigning issue.

If you would like to post in relation to a campaigning issue please contact the Online Community manager by emailing DementiaSupportForum@alzheimers.org.uk to seek advice and permission to post.

Once such requests have been approved, posts should be made in the Dementia-related news and campaigns forum.


Children

Dementia can affect anyone so we welcome children who want to talk about dementia on Dementia Support Forum. However we also recommend that parents be aware of how their child is using the internet. We generally advise the following:

  • Turn Conversations (Private Messages) off.
  • Talk about general Internet privacy issues with your child. For example, do not disclose any personal information including your surname, email address or phone number.
  • Supervise younger children when using Dementia Support Forum, as some children may find certain content disturbing. This has the added advantage of giving children the opportunity to discuss any subject that they may have issues with.
  • Encourage your child to discuss any issues that worry or concern them before searching for the information on a public forum or the internet.

http://wisekids.org.uk/wk/parents-online-guide/ is a helpful guide for parents on using the internet with your children.


Copyright

Members are welcome to post their original images and written works on Dementia Support Forum, for example, a poem. For work that isn’t your own you’ll need permission of the copyright holder, usually the author, to post them. With poems and other written works copyright expires 75 years after the author’s death. If you’d like to post something that is still in copyright, fair use allows you to post a short excerpt from it, you can also link to a page that has permission to host the work.


Donating / selling items on Dementia Support Forum

For health and safety reasons, we don’t allow members to advertise items on Dementia Support Forum, whether for sale or donation. This includes offers of second-hand equipment.

If you’re interested in fundraising for the Society by auctioning items on Dementia Support Forum, please contact us by emailing DementiaSupportForum@alzheimers.org.uk for advice before posting.


Fundraising

If you’d like to fundraise for the Alzheimer’s Society on Dementia Support Forum, that’s great. Just make sure you post in the Fundraising for Alzheimer's Society forum.

Also we encourage you to use the JustGiving website, www.justgiving.com/alzheimerssoc/ to raise funds online so supporters can be assured that their money is going to help Alzheimer’s Society in the UK.

If you wish to fundraise for a charity other than Alzheimer’s Society please contact the staff team at DementiaSupportForum@alzheimers.org.uk.

Please don’t post personal fundraising and other crowdfunding campaigns as these will be removed.


Impersonation

Please don’t create multiple accounts on Dementia Support Forum or pretend to be another member. We may remove any content, delete accounts and ban members who do this.


Journalists and media

If you’re a journalist or writer researching an article, book or media story please contact Alzheimer's Society's press office at: press@alzheimers.org.uk.

The media should not contact members of Dementia Support Forum directly. If you receive a direct personal contact from anyone in the media, please report the conversation (PM) or contact us at DementiaSupportForum@alzheimers.org.uk.


Keeping it legal

Alzheimer’s Society has a responsibility to ensure that what’s posted on Dementia Support Forum doesn’t break the law. We want to protect you and the Society from any risk caused by posting something libellous.

Therefore you’re not allowed to post anything which might lower or damage the reputation of an identified person or organisation on Dementia Support Forum.

Even if you don’t name the individual or organisation explicitly, please bear in mind that other details you post may identify them. While your comments may or may not be true, we are not in a position to verify the facts and therefore we will always err on the side of caution.

Negative comments about an individual or organisation that could be interpreted as being libellous will be edited or removed by the moderation team.


Naming of individuals and organisations

To help with the above advice on libel we ask that when you’re posting please don’t identity people by name, such as health and social care professionals.

Likewise don’t identify or name specific hospitals, local authorities, legal providers, insurance companies, health or social care services or organisations.

However you can name companies and charities if it’s a passing reference from personal experience. For example, it is fine to say “I popped into town and bought a lovely skirt from Marks & Spencer” or “the staff at my local memory clinic were brilliant today”.

Also please avoid making generalisations about companies, organisations or professions. For example, saying “My social worker doesn’t seem to understand my situation” is fine but “Social workers don’t know what they are doing” is not. This way you have the opportunity to express your feelings about your personal situation, while making it clear that it does not apply to every situation or circumstance.


Maintaining other people's privacy

Please, where possible, seek permission before posting personal information about, or photographs of, other people on Dementia Support Forum.


Contact details and personal information

We don’t permit our members to publicly share contact details on the forums (address, telephone number, email address, etc). Identity information can be communicated using the Conversation (PM) system, but we don’t recommend this.

Please don’t post messages encouraging others to disclose contact details about themselves. When such details appear, they will be removed by the Dementia Support Forum team.

Also please do not post messages with the sole intent of urging others to post personal information (e.g. images, stories) on other websites which may not have the same safeguards as Dementia Support Forum.


Researchers and Students

Students and researchers can post in the “Researchers, students and professionals” forum asking for general information about dementia, or to canvass for opinions without needing prior approval. But:

  • You should not plan to reproduce details or quotes of the responses you receive in your work.
  • Please don't ask questions which might lead members to post personal information.
  • Don't post your own contact details.
  • And please don't contact Dementia Support Forum members privately.

If you wish to conduct research forum using Dementia Support Forum data, cite content posted by users, or ask users to contribute to surveys or studies, please contact the Online Community Manager for approval before posting by emailing DementiaSupportForum@alzheimers.org.uk.

Research projects will need to provide confirmation that they've received ethics consent from the National Research Ethics Service (NRES).

Due to the number of requests we receive of this nature, we are unable to support researchers and students at or below Masters level.


Support and Safeguarding

Dementia Support Forum is a peer to peer support service so if you see someone who is having a difficult time, don’t be afraid to post a supportive message pointing them to our Helpline, the Samaritans or SANEline who all provide emotional support and information.

If you’re worried about another member of Dementia Support Forum please report their post or get in touch with us at DementiaSupportForum@alzheimers.org.uk. Our volunteers can then take steps to make sure they get the support they need.

If we have reason to believe that you or someone else is at risk of serious harm or abuse the staff team reserve the right to review any relevant conversations (PMs).

We treat any information we hold about you as confidential unless there is a risk of serious harm or abuse to you or someone else. In this instance, we will have a duty of care to act in the best interests of the person at risk of harm and may pass this information onto a third party such as the emergency services or social services.

Guidelines: Last updated May 2018

Top Bottom