Date Revised:

A road less rocky is a report from Carers Trust (2013) that found that carers of people with dementia are not getting the support and advice they often desperately need.

The report 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.

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:

  1. When dementia is diagnosed

  2. When the carer takes on an 'active' caring role

  3. When the capacity of the person with dementia declines

  4. When the carer needs emotional support and/or a break from caring

  5. When the person with dementia loses their mobility

  6. When the person with dementia has other health problems

  7. When the carer has to cope with behavioural problems

  8. When the carer's own circumstances change

  9. When the person with dementia becomes incontinent

  10. When decisions about residential care and end of life care have to be made

Online guide for anyone who cares for someone with dementia

See our Carers Road Map online guide for carers of people with dementia

This is a guide to help you through your caring experience and provide practical advice and information if you support someone with dementia. Some of the information in the guide may be useful to you early on, when the person you care for is first diagnosed with dementia, and some at a later stage. You may also find it useful to dip into at different times.

Next update due: June 2017