A new report from Carers Trust has found that carers of people with dementia are not getting the support and advice they often desperately need.

A road less rocky – supporting people with dementia’ found that only 51% of carers questioned said that they were given an opportunity to talk separately about their needs and how much care they felt able to provide.

56% of carers questioned said that they had not received information about managing the medication of those they cared for. More than half (52%) of carers said that they had been given no information on how to cope with incontinence. 

Other key findings included:

  • Over half (52%) of carers in the survey reported difficulties in obtaining a diagnosis for dementia for the person they cared for
  • More than half of carers (55%) questioned said that they had not been given information on legal issues and managing money. Many had learned about Lasting Power of Attorney too late
  • Many carers, particularly those caring for someone in the later stages of the illness, felt ill equipped to deal with more agitated behaviours that might develop. More than two-thirds 68% surveyed said they had not received training or advice on this issue
  • 82% of carers questioned said that caring had adversely affected their ability to work

Information gaps at critical points in carer journey

The report found that there were a number of critical points along a carer’s journey where they would most value information and support. These critical points include:

  • When dementia is diagnosed
  • When the capacity of the person with dementia declines
  • When the carer needs emotional support and/or a break from caring
  • When the person with dementia loses their mobility
  • When the carer has to cope with behaviour problems
  • When the carer’s own circumstances change
  • When the person with dementia becomes incontinent

The report finds that many carers are not being given information and advice on these issues when they need it. Often advice, if it is given, is too late. 

Ian’s story

Ian cared for his mother, who came to live with him and his partner. About 18 months after this move, a specialist dementia nurse visited, and invited them to attend a carers’ course that ran for one afternoon per week for six weeks. 

I could have done with information a lot sooner because prior to this I hadn't appreciated that much of Mum's contrary and difficult behaviour was due to dementia. Once I understood that I could to some degree make sense of it and cope with most of it.

When the behaviour became more problematic the nurse provided some further advice but the coping strategies suggested did not always work or didn't work for long.

Mum had a wonderful way of circumnavigating them after a few weeks. For example, she would walk into our bedroom in the middle of the night and switch the light on. [The nurse] suggested we put a lock on the bedroom door - which we duly did. This deterred Mum for a few weeks until she started knocking on the door, or hammering on it and shouting for attention ... 

So eventually we left the door open and took the light bulb out. Sad to say that most of the suggestions from [the nurse] invariably boiled down to talking to Mum calmly and rationally and making her a cup of tea. … When you care for someone 24/7 and they go through a spate of waking you up in the wee small hours, you don't feel much like rationally making them a cup of tea every time … I loved my Mum more than words can ever express but dementia could turn her and me into monsters that I did not recognise.

Knowing where and when to find information is key

Our Chief Executive, Thea Stein comments:

“The evidence from this report has highlighted the fact that all professionals will need to check that carers have the information and advice appropriate for the challenges they are currently experiencing and that they know where to go for further information and advice. 

“Carers should be aware that there is support available to them. Local carer support services can guide carers through this journey, help them source vital information when they need it and provide much-needed emotional support and respite breaks.”

There are 800,000 people with dementia in the UK and this number is set to grow to over one million people by 2025. The financial cost of dementia in the UK is £23 billion each year and growing.