Dementia Carers Count's story

Dementia Carers Count received 80 completed surveys from people of all ages during lockdown and these topics came up again and again

  • Isolation / feeling alone / stressed / trapped / lack of contact with family friends 
  • Managing behaviour and mood of person with dementia eg 
  • Increased anxiety / agitation due to changes in routine 
  • Managing repeated questions and / or behaviours 
  • How to keep the person with dementia adequately stimulated 
  • How to cope with lack of contact with person with dementia who is in a care home 
  • Increased carer burden due to loss of paid care or informal support 
  • No respite / exhaustion / balancing working from home with supporting a person living with dementia  

Other challenges mentioned were 

  • Explaining COVID-19, restrictions in behaviour and compliance 
  • Managing and coping with people in the end stages of dementia  

Comprehensive safeguarding measures were developed to mitigate the risks of contracting and spreading the infection during course delivery and these measures were put to good use when three new one-day courses were delivered in Birmingham from 13-15 March 2020. The following day our office was closed and a week later the UK was in lockdown.  

In response to the lockdown and cancellation of our courses we decided to develop online content so we could continue to engage with and support carers.  DCC has

  • Offered support calls to everyone whose course place was cancelled (March – August).  Support calls provide the carer an opportunity to talk about any challenges they are currently facing to lend a supportive, listening ear and signpost if appropriate. 
  • Offered support calls to all carers who have previously been on our courses from 2017.
  • Some support calls led to the provision of a 1:1 phone or Zoom coaching session if a topic needed to be examined more in-depth. 
  • Launch of Virtual Carers Centre (VCC) on 13 May with a range of resources under the following headings - managing stress and building resilience, everyday challenges and solutions, bitesize learning, carer to carer, carers’ rights, organisations that will support you during COVID-19.  We are also hoping to develop digital 1:1 coaching in the future.  
  • Trial of bespoke packages of support and live training online with two organisations who support carers of people with dementia. 

The VCC and online training are works-in-progress and are constantly developing in term of content and ambition and both are based on what carers have told us they need.  

We are starting to look at how we can begin running face to face courses again which is a huge undertaking but something we are keen to get back to doing.  We are planning to start mid-September and most carers who had a course place cancelled earlier this year want to attend a course this autumn. 

As we are a small charity, we sadly do not have the resources to widen our support calls to all carers.  We also think that there are organisations that already run support and helplines who are doing a great job. 

Our VCC will continue to develop in its scope.  New content is continually being added which allows us to be flexible and responsive to peoples’ needs.  

DCCs number one priority remains supporting and engaging with family and friends who look after a person with dementia.  What COVID-19 has done is allow us to be more innovative and creative than perhaps we thought we ever could be.  We are now reaching, engaging and supporting even more carers through our virtual carers centre and we only want to build this in the future alongside running face to face courses. 

Useful resources 

Virtual carers centre

All you need to know about DCC courses 

DCC three-day course proposed dates and waiting list  

DCC one-day course topics 

Lissy Edwards, Speech and language therapist and dementia carers services practitioner, Dementia Carers Count 

- July 2020

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