It’s vital that we develop services to fit with what family carers of people with dementia really want and need. We commissioned the Carers Trust* to conduct an online survey on our behalf, asking a range of questions to help us better understand carers’ experiences, needs and priorities. Here are some of the most interesting insights that we gained from the survey:

Patterns of care

34.8% of our respondents cared for a spouse and 51.6% cared for a parent.

55% live with the person they care for.

40% of respondents provide 24/7 care.


Average numbers per hour a care is provided

Health, wellbeing and leisure

A massive 56% reported also having health problems of their own to deal with.

26% of carers said they were able to take a short break away or a holiday and 41% were able to spend time with family and friends, but 58% also said they use their time to catch up on household chores and 32% told us they attend their own medical appointments. Only 27% said they have time to pamper themselves or have time to do a sporting or craft activity.

How carers spent their breaks

Information and support

57% of carers had been able to attend information sessions relating to dementia and found the following types of information most helpful:

  •  general information about dementia symptoms and progress
  •  information about how to care for a person with dementia
  •  information about benefits and other entitlements
  •  information about other services in their local area
  •  emotional support
  •  support from other group members
  •  information about managing unusual and changing behaviours

We’re using all of this information to make sure that the support we offer helps family carers to develop skills that make their life manageable and help them maintain their own health and well-being, too.

The national survey took place between 23 May and 5 July 2016, and was widely promoted through Carers Trust Network Partners, website, Twitter and Facebook; the RSAS expert working group; Dementia Action Alliance; Dementia UK; Age Action Alliance; and the Royal Collage of Psychiatry Memory Service.

A total of 304 carers participated in the online survey, with 248 people responding consistently and comprehensively to the questions. The data analysis is therefore based on the responses of these 248 participants. The majority of respondents were women aged between 40 and 70, and there was good representation from men, people from urban and rural areas, and a range of ethnicities.