Bob's Brainwaves develop support for those with memory loss

Christine Such and Patrick King of local, Louth-based charity Bob’s Brainwaves, were invited to speak to Market Rasen Rotarians at a recent lunch meeting.  

Christine and Pat visited two years ago and were now ready to update Rotarians on their very worthwhile charity, Bob’s Brainwaves.

Chris recently lost her husband from complications arising from his dementia which he suffered from for many years. Pat King was briefly a member of Rasen Rotary until his bank employer moved him to Skegness where he joined Rotary there.

Bob’s Brainwave charity produces a kit, i.e. a folder containing a mass of information sheets, which will support carers of people with memory loss and dementia.

Christine and Bob developed the information packs based on their own experience, over 15 years. They quickly realised that there was no helpful information generally available to help people starting out on their dementia journey. No information on what is available and how to obtain it, what travel schemes are around and where to contact them, what special benefits are available and how to claim for them. Christine and Bob had to find out for themselves and the realisation that everyone else in their situation would be faced with the same issues led to the introduction of the information pack – a simple central place with all the relevant information that could be needed.

The information pack has grown significantly as requests from users and carers have continued to come in. For instance the pack now contains a simple booklet on how to avoid scams. Another leaflet describes how to get a dental appointment in a care home. This resulted from the difficulty Chris had in arranging a dental appointment for husband Bob.

She then needed to get an urgent prescription from the GP for antibiotics for Bob – she was able to expedite this by mentioning that if she didn’t get the antibiotics that day, she would be contacting Peter Levy (local BBC Newsreader) who was a friend of Bob’s, through their interest in football. The antibiotics were duly provided! As a result, the information pack now has a Community Dentist Referral Form that works and there is a similar form for bowel and urinary referrals.

The list of Memory Cafes has expanded and been updated. Useful for those dementia sufferers who are mobile and able to get about, but the story is different for immobile sufferers who are often left isolated. Chris got together a list of volunteers and organisations providing travel, local buses and community buses. She added a list of all the voluntary car schemes and all contact details. So, now the pack contains an A4 double-sided sheet with all the transport options available for this region – it has proved to be very popular with users, she said. Similarly, the pack contains a list and map of public toilet locations.

Since talking to Rotary two years ago the charity has expanded to provide packs all over Lincolnshire. Each council district has different requirements and contact addresses, so it is important to get the right pack for your area.

Another particularly successful addition to the pack is the Signage Widgets. Christine found with Bob, as his dementia progressed, his short-term memory dropped considerably – simple things like opening the front door but then forgetting to close it. By creating and applying simple ‘post it’ notes, these would remind him to do things. Developing this thought, she found a manufacturer that would make all sorts of small signs – the Signage Widgets, each with a specific short message and a simple picture. These signs can then be placed wherever the person needs reminding what to do. These are now available and free to download from the website and print off to use – these would be in addition to the manufactured versions which are also available.

The packs are produced specifically for the local authority area that the user resides in – so for West Lindsey the pack will be available from the Memory Clinic in North Hykeham or they can be obtained from a local Memory Café. It is also possible to request one through the website. It is also necessary that the user has a diagnosis of dementia because many of the forms in the pack only work if the user has been diagnosed. Many of the forms result in benefits being made to the user, and these are only available to diagnosed individuals.

The success of the project can be seen by the way other regions have requested access and the packs for their local communities. There is a limit to how much time Christine and her team can devote to these increasing demands so now they have developed a ‘Tool Kit’ which can be given to areas wishing to introduce something similar. These Tool Kits give the information that is required for the area together with the items such as the Signage Widgets which are of a more general nature and will be relevant for most local areas.

Rotarian David Mason confirmed he had first hand experience of the value of the Bob’s Brainwave packs and the valuable information they contain. The information in the packs will have to be updated to reflect the forthcoming council reorganisation boundary changes, but it is not expected to cause too much difficulty as the packs are regularly updated anyway.

Pat, in his treasurer role, explained most of their funding comes from donations. They also had a couple of Government grants – one from Boston Borough Council and another more recently from East Lindsey District Council.

Christine has been asked to visit Parliament and is hoping to get to talk to ministers responsible for health and Alzheimer’s to try and get some funding and to convince central government of the value of the project and how it should be available across the country.

Market Rasen Rotary then presented the charity with £500 proceeds from their recent quiz night. An information pack currently costs  £8.65 including VAT to produce.