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Evidence at a glance - Supporting carers of people with dementia

Unpaid carers provide much of the day to day care for people with long-term illnesses. Dementia is a common problem and the condition can present particular challenges for those nearest to them. This can include challenging behaviour and confusion, as well as a range of other physical and mental health problems.

The progression of dementia can be slow and uncertain, with caring responsibilities which can extend over many years. Carers tend to have poorer levels of physical and mental health than those without caring responsibilities. One study indicated that a third of dementia carers experienced clinical depression or anxiety.

There is some evidence that when carers are well supported, they provide better care to the person they care for and report better outcomes themselves. But carers may not seek the support they need. An earlier review found that women taking on heavy carer responsibilities made less use of general practitioner services than expected.

While there are new responsibilities for local authorities and for health professionals to identify the needs of carers, it is not always easy to provide the support they need.

What did the studies find?

  • A large UK trial of a structured coping programme for carers helped to reduce anxiety and was cost-effective
  • An evidence review showed that carers need help to address their negative feelings and psychosocial needs, as well as more practical support
  • A large population study showed that people with dementia were more than twice as likely to experience incontinence as those without dementia, but carers were often reluctant to seek help
  • A trial showed that regular exercise with the person they were looking after helped carers (although did not produce expected benefits for people with dementia)
  • A study showed that people with dementia experience high levels of other conditions like diabetes and stroke, but often have poorer access to monitoring services (like foot and eye checks in diabetes clinics). Care from different teams and services is often poorly coordinated, with the burden falling on carers.
  • A survey showed that carers often had different views to health and care professionals on what factors precipitated a crisis (carers rating continence problems more highly than staff) and what support helped to prevent and manage these
  • A review of evidence on case managers to coordinate care for people with dementia showed mixed results with some possible benefits in reducing burden on carers.

Questions to ask

For carers

  • Have you been given a clear diagnosis and what you might expect in the next few months and years?
  • How do you feel most of the time? What support would help you in looking after your relative, partner or friend with dementia?
  • Would you benefit from practical tips on coping with challenging behaviour? Or talking to someone about what you find difficult, including feelings of guilt and shame?
  • Have you asked for help with continence problems?
  • Could you try regular walks with the person you are looking after?
  • What kind of support would be most helpful to you in a crisis and do you know what services are available?
  • Might there be other health problems worth checking for you and the person you look after?

For GPs, community nurses, care support works and others

  • Do you know which of your patients looks after someone with dementia?
  • What kind of support services can you access in the way of home help, respite and other services?
  • At every contact with a carer (consultation or home visit), ask if there are continence problems. Do you know what kinds of support your local continence service or nurse provides?
  • At every contact with a carer, ask how they are feeling generally. Can you refer carers who need some form of psychosocial support via your IAPT?
  • When seeing someone with dementia in your practice or at home, what other possible health problems need checking, for instance eyes, feet or teeth? Can you make longer appointments for them?

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