Annual survey results 2022

Ben Budd
October 20, 2022
June 15, 2023

Thank you to the 435 family carers who participated in our first nationwide survey over the summer of 2022.

We asked you about your experiences of caring for someone with dementia and what you think could make the greatest difference to daily life.

Your responses gave us invaluable insight into how family dementia carers are coping and what support you need. You confirmed to us that the majority of carers have not chosen their caring roles, the caring experience is intense and most carers lack support. As a consequence, many of you are reaching crisis points, some on a regular basis. However, you’re are also clear about what could support you more.

Crisis point

Over 80% of family and friends caring for people with dementia are reaching crisis points and not getting the support they need. In fact one in five family dementia carers are reaching crisis point on a regular basis. Family carers share that they feel “alone”, “trapped” in a life they have not chosen and “broken”. 

Carer’s Assessments

Family carers are entitled to a Carer’s Assessment from their local authority. This should be a clear route to support as it should identify a carer’s individual needs and enable them to access a range of services, including respite care and befriending opportunities as well as possible financial assistance. However, many carers do not know to ask for a Carer’s Assessment and it is not always offered. 

The survey also indicated that nearly 60% of family dementia carers have not had a Carer’s Assessment. Furthermore, 70% of family dementia carers who have completed a Carer’s Assessment say that they have not subsequently received the support they need. Some family carers shared that there was no follow up after the assessment. More than half of those who received a Carer’s Assessment felt that it did not highlight useful options. 

Dementia Carers Count Acting CEO Melanie Blanksby said: “Carer’s Assessments should be a straightforward means of connecting carers with support that is right for them. It’s extremely disheartening to learn that these assessments are either not taking place or else are failing to connect family carers with services and information which could make a huge difference to their daily lives. The system isn’t working if one in five family carers are regularly experiencing crisis.

“Family carers must be helped to access what they need to enable them to cope with their caring responsibilities and to look after themselves. There must be better coordination between health and social care services so that Carer’s Assessments are offered to all family carers. The recommendations made at these assessments must then be followed up to make sure that families are receiving support that truly meets their needs.”   

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