This site is intended for health professionals only

Making the road less rocky

A new resource was launched by Carers Trust during this year's dementia awareness week. The resource is aimed at professionals who may come across carers in their work. The resource will enable staff to recognise the needs of carers of people with dementia at different stages of their journey, and feel more confident to offer advice and signpost for further support.

The toolkit has been developed from “A road less rocky -supporting carers of people with dementia”, a research project commissioned by Carers Trust to understand more about the journey undertaken by carers of people with dementia. It found that although there is no typical caring journey it suggests there are ten critical points in the caring journey where, if the appropriate support and advice was given, the experience of caring for someone with dementia would have been made a little easier and less isolating.

The 10 critical points identified where:

  • 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 behaviour problems.
  • When the carer's own circumstances change.
  • When the person with dementia becomes incontinent.
  • When decisions regarding residential care and end of life care have to be made.

At some of these critical points carers will come into contact with health services opening up the opportunity to identify and offer invaluable support. It is well documented that carers of people with dementia have poor health outcomes, and often neglect to seek help for themselves until they reach crisis point.

The majority of people diagnosed with dementia are over 65, and are highly likely to have other health conditions; they are often health conditions unrelated to the dementia which bring them and their carers into contact with health staff.

It would be unrealistic to think that health staff have the time and resource to support the carer in all areas. But by having an insight into the needs and experiences of carers, they can feel confident to approach them about their role, and advise about further support; possibly referring on to the local carers and dementia services. Carers who receive good information and support will have better health outcomes, and therefore be able to care for the person with dementia at home more effectively and possibly for longer.

Making the road less rocky toolkit is an online resource, (although it can be printed). It takes the 10 critical points from the research and builds on them, giving an insight into the carers concerns and struggles. It suggests ways in which staff coming into contact with carers can help. There are links to useful websites with information and fact sheets on carers' issues, looking after someone with dementia and legal and financial advice. The toolkit is designed in such a way that staff can view either the whole document or just the page that relates to a particular critical point. Although designed for staff the toolkit can also benefit carers.

A road less rocky - supporting carers of people with dementia, complements, the “triangle of care carers included: a guide to best practice for dementia care”. This document describes how meaningful involvement and inclusion of carers can lead to better care for people with dementia. The guide identifies six key standards required to achieve better collaboration and partnerships with carers.

Carers Trust is a major new charity which is with and for carers. We work to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. We do this with Network Partners - a unique network of 116 independent carers centres, 55 Crossroads Care schemes and 99 young carers services. Together we are united by a shared vision for carers - to make sure that quality assured information, advice and practical support are available to all carers across the UK.