A Road Less Rocky: Supporting Carers of People with Dementia
This research 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 a carer's 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 carer takes on an 'active' caring role.
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 person with dementia has other health problems.
When the carer has to cope with behavioural problems.
When the carer's own circumstances change.
When the person with dementia becomes incontinent.
When decisions about residential care and end of life care have to be made.
A Road Less Rocky: Making the Road Less Rocky for Carers, A Guide on how to Support Carers of People with Dementia
We have designed a toolkit around the ten critical points on a carer's journey. The toolkit is useful for anyone who works with or treats patients with dementia and is therefore likely to come into contact with carers.
Although the terminology and legislation referred to in this toolkit applies to England the standards and rationale are applicable across the whole of the UK.
Next update due: December 2021