Jane is our Dementia Team Lead

I consider myself lucky to be the team leader for the dementia carer team here at Carers Support West Sussex.  I’ve had both a personal and professional interest in dementia for many years, along with a passion to improve the lives of those who care for people living with the condition – our carers.

When I started to think about writing a blog I’d just become aware of the reduction in Council Tax that’s available to households where there is a resident living with a dementia.  It got me thinking about all the information that’s out there to support carers and how we can ensure carers have access to it at the right time for them. This is one of the on-going challenges for our organisation at all levels.

I started to pull together in my mind all the ways we share timely information with carers in our team and to daydream about all the possible solutions for reaching many more of them, including the carers who, for all kinds of reasons, are hard to reach.  Having wasted rather a lot of time daydreaming (and still not writing my blog about ‘information’) I found myself driving down to Tangmere near Chichester to observe one of our dementia carer groups.

Ten minutes in and all my concerns about how I was going to write about carers accessing information vanished.  I was sitting in a living, breathing hive of information!

We call our groups ‘support’ groups and, yes, they provide a setting where carers can support one another and be supported by our staff and volunteers; but they are so much more.

In the space of about 100 minutes, carers and our excellent group facilitator Nicky, identified the need for and subsequently shared information about a mind boggling range of topics.

  • Crossroads Care – two rates apply to cost according to levels of saving.

  • Crossroads Emergency Respite (and the fact that it’s free).

  • Waiting lists

  • Making an ‘Emergency Plan’ and the value of doing that.

  • Power of Attorney – Why? How? Cost?

  • Going into hospital – who to contact (CSWS hospital staff; Dementia specialist nurse)

  • How to manage a visit to A & E or Outpatients with someone living with a dementia

  • How to get the person referred for a Memory Assessment (via the GP)

  • Local groups offering activities for those living with dementia and often their carers too (Alzheimer’s Society, Mind, Age UK, Crossroads are the main providers)

  • Alzheimer’s Society ‘Crisp’ courses – awareness courses for carers (there was one running at the same time as the group in the same building!)

  • A garden party opportunity in May (Alzheimer’s Society)

  • Equipment for Independence – Nicky picked up 3 requests for referral for a Handy Bar

  • Reduction in Council Tax for Households with a person with a dementia

About 40 minutes in – Nicky had been joined by Clare from the Carers Health Team and carers then gained information about

  • The Carers Health Team – Clare picked up two referrals

  • How to help someone out of a chair without hurting your back

  • Sleeping better – very useful information for carers to take away

  • Emotional Support – What’s available CSWS and Carers Health Team

  • How to self refer for occupational therapy or community nursing assessment – One Call Coastal on 01903 254789

In addition to ALL of this – the group takes place at Dementia Support’s almost completed Dementia Hub in Tangmere.  What a resource this will be for our carers!  There’s already lots of information about local services and activities available in the public areas for carers to take away.

So then.  Lots of information.  Was it relevant to those there?  Was it timely?  Did it make a difference?

Throughout the morning the conversation was littered with comments such as, ‘Oh really??’, ‘I had no idea about that’, ‘That’s really good to know’ and ‘I feel so much lighter knowing that’.

After the meeting Nicky received this from one of the carers:

“Thank you for such a helpful meeting this morning!! Everything discussed seemed to be relevant to me, and I learnt so much!

“Have just emailed ‘L’ re: the good news over the Attendance Allowance and to thank her, and I also rang Arun DC who are putting a form in the post  for a reduction in the tax !!!! It’s very exciting !!!!!!!”

“I rang Crossroads who were very nice and very helpful, and who said I HAD already registered with them…..!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  (Much mirth over the phone!!)  However, it turned out that I had only spoken about my husband, at that time, and so R was also added today, so that if  emergency help was needed, they were aware of R.  They are also putting some details in the post of their recently upgraded charges.”

As I started out by saying – I consider myself lucky to play a (small) part in it all.