Tuesday 22 October 2013, saw the first meeting of the Worthing Area Dementia Open Forum. Unfortunately, due to my caring duties, I was unable to attend. I did however contact the organisers beforehand, asking to be kept up to date on any developments.
I now have the minutes from the meeting, and will discuss here some of the matters arising.
35 people attended the forum including representatives from the Alzheimer’s Society http://www.alzheimers.org.uk/, Guild Care http://www.guildcare.org/ and West Sussex County Council http://www.westsussex.gov.uk/ along with carers, people living with dementia and health and social care professionals.
The opportunity for people to become Dementia Friends or Dementia Champions was raised. Dementia Friends http://www.dementiafriends.org.uk/ is an initiative funded by the UK government and run by the Alzheimer’s Society, with the primary aim of creating dementia friendly communities.
Some of the issues raised at the meeting included:
From personal experience many GPs and their staff, have little understanding of dementia, yet for many, GP’s surgeries are the first point of contact in the UK health care system. Improved dementia awareness in GP’s surgeries should be made a priority.
Information about services available
A need was identified for printed information about all of the local services available to those living with dementia and their carers. This information would of course have to be kept up to date, all too often such information is out of date with incorrect contact details, or signposting services no longer available.
There is certainly quite a lot of printed information available for carers, including the West Sussex Care Guide, which contains useful information and a directory of services available.
Future representatives from other organisations
Suggestions were put forward for representatives from other local organisations to attend future forum meetings, these included; a GP lead for dementia, the Salvation Army, Carers Trust, local theatres, local cinemas, the Red Cross, ICIS (part of the Helplines Partnership finding help for people when times are difficult), local leisure centres, coffee shops, the Rotary Club and the local Freemasons.
Being from a military background, I’d also add SSAFA and The Royal British Legion, to represent ex-service people and their families.
Another suggestion from a Twitter friend would be Sussex Police, who are already supportive and well informed about dementia.
From my own point of view, I think the more local organisations and businesses represented the better. It is important that employers are aware of the difficulties sometimes faced by working carers. It was such a lack of understanding and flexibility that caused me to give up working, in order to care for my Mum.
Dementia friendly shops and taxis
Shops and taxis identified as dementia friendly to display stickers to let people know. A similar scheme is currently operating in Torbay, under the Torbay Dementia Action Alliance http://tdaa.co.uk/ , encouraged by the inspirational Norman McNamara (Norrms) and his wife Elaine. Norrms has Lewy Body dementia. As part of this alliance, and inspired by Norrms, the Purple Angel http://www.purpleangel.org.uk/ has been adopted as a symbol of hope for all those living with dementia. In fact, the Purple Angel has been adopted in many places around the world.
Perhaps Worthing should do the same.
The use of Social Media
Although the minutes confine this to “spreading the word, for things such as meetings”, many of us who regularly tweet on Twitter, are already doing it! We “spread the word” about dementia across the world. I could list a whole raft of people I’ve met on Twitter “spreading the word”, so for anyone interested, it would probably be easier to give my Twitter name, @ZkidooKreativ, so anyone can then discover the many who are indeed “spreading the word”, including Norrms!
Encouraging services and business to recognise that someone is a carer - this is certainly a problem, many of the businesses and services carers have to deal with, are completely unaware of what being a carer really is like. This also, as already mentioned, involves carers who are also employees. Refreshingly, I recently took part in an on-line survey for Argos, the section asking about employment actually listed “full-time carer” – well done Argos! At least one company recognises us!
Unfortunately other companies don’t! Very recently I was in contact with Sky, due to problems with my phone line and broadband. Whilst trying to be helpful in resolving the issue, I was kept on the telephone for over an hour, even though Sky had been informed in an email regarding the same matter, that I WAS a full-time carer. Had my Mum needed any help during this time, which fortunately she didn’t, I would have had difficulty in explaining to the Sky representative that they would have to call back. Why? Because the representative was totally unaware of my carer status.
Singing for memory groups
Many of us who care for someone living with dementia, know of the value of music as a tool both for the memory, and for helping to calm and reassure. I won’t add anything further here, as I have already written an earlier post on the subject – http://design4dementia.blogspot.co.uk/2013/07/dementia-music-and-emotions.html
Men in Sheds
Men in Sheds was an AgeUK pilot project that supported older men who wanted to get together, share and learn new skills - all in the welcoming space of a ‘Shed’. There are now several similar groups around the country.
Men In Sheds Worthing http://meninshedsworthing.org.uk/ is about a larger version of the typical man’s shed in the garden, a place where he feels at home and pursues practical interests without worrying about making a mess. Men In Sheds offers this to a group of men where members share the tools and resources they need to work on projects of their own choosing at their own pace and in a safe, friendly and inclusive venue. It is a place of skill-sharing and informal learning, of individual pursuits and community projects, of purpose, achievement and social interaction. A place of leisure where men come together to work.
The activities usually involve making or mending in wood (e.g. carpentry, wood turning, carving, and furniture renovation) and may include activities as varied as tool renovation and upholstery. Reclamation, reuse and restoration feature strongly in what they do. The essence of Men In Sheds is not a building, which some don’t have, but the network of relationships between the members.
I have to admit, it’s probably not a group I’d join myself, but I am sure it proves helpful to many.
The availability of information about dementia
There is of course a plethora of information about dementia on the internet, from a variety of different sources, some reliable and some not so. The Alzheimer’s Society http://www.alzheimers.org.uk/ has quite a lot of information on its website, but something highlighted at the meeting was the simple fact that the Alzheimer’s Society doesn’t make it clear enough that its services are for all types of dementia and not just Alzheimer’s Disease.
At the time of Mum’s diagnosis (Vascular Dementia), I was completely unaware that the Alzheimer’s Society did indeed cater for all types of dementia.
Whilst Alzheimer’s is the most common form of dementia, there are many other forms of the condition. Across the world, many organisations use the umbrella term of Alzheimer’s to identify themselves. This, unfortunately, is often unhelpful, especially in the early days of diagnosis, both for those with other forms of dementia, and their carers. A simple name change could help, such as the Alzheimer’s and Dementia Society, instead of the Alzheimer’s Society, in the case of the UK organisation. Just a thought.
Local on-line dementia forum
Whilst this could work, it would rely on a reasonable uptake by potential users. Local forums can often exist with no-one posting on them for months at a time. There are however national forums already in existence, where threads can be created for a more local feel, and where people from a specific area or region can share thoughts and information. Generally, sharing is pretty much on a national basis, giving access to far more information, and sharing experiences with a greater number of people who find themselves in similar situations.
Personally, I use the Carers UK Forum http://forum.carersuk.org/ regularly, and whilst not all members are carers for someone living with dementia, quite a few are, and there is a specific group of threads dedicated to dementia.
The Alzheimer’s Society also has its own on-line forum Talking Point http://forum.alzheimers.org.uk/forum.php . I’ve posted there a few times as well.
Educating younger people about dementia
This is certainly an area that should be given serious consideration, and it has recently attracted considerable interest on a number of Twitter chats. I won’t go into any great detail here as a Twitter friend has already covered much of it at http://karims3d.com/2013/10/17/dementia-friendly-schools-%e2%96%b7-a-primer-to-anti-stigma-campaigns/
Whilst this was the first meeting of its kind in the Worthing area, it already indicates that there is a hint of what could hopefully be a strong movement to create a dementia friendly community. Let’s hope it continues and gathers momentum.