Nine in ten dementia carers are reaching crisis, with one in three describing their emotional health as bad or very bad

Ben Budd
November 23, 2023
November 23, 2023

The majority of dementia carers are struggling to cope, with over half experiencing crises from time to time and over a quarter reaching crisis on a regular basis. Many dementia carers provide support with daily activities including washing, dressing, eating, drinking and going to the toilet as well as managing medications, medical appointments, keeping on top of finances and shopping and supporting the person with dementia to take part in leisure activities and maintain relationships. Two in five carers describe themselves as providing care 24/7. The care that is needed can vary and might last a number of years. 

While juggling a huge range of caring responsibilities, dementia carers are contending with challenging and unimagined changes to the relationship they have with the person they are caring for. This person is often a close family member, either a parent or a spouse or life partner. They may no longer recognise their carer or believe them to be the person that they say they are. This can be emotionally devastating and profoundly unsettling. 

Frances Lawrence, CEO Dementia Carers Count said: “Dementia carers are in desperate need of emotional and practical support to help them cope with the complexities of caring for someone living with dementia. However, carers have told us that they feel “invisible” to health and social care services and like they “don’t matter”. Only a quarter of dementia carers say that they have been able to access support when they have needed it and almost half have struggled to get advice from their local authority about how to pay for and organise any support.”

Despite the provisions of the 2014 Care Act, DCC’s research has found that only half of dementia carers have had a Carer’s Assessment and over a third of carers who have had a Carer’s Assessment have not subsequently been given a support plan.  Carers who were given a support plan described the support offered as “limited”, “inflexible” and “inappropriate”. For example, their caring responsibilities meant that it wouldn’t be possible for them to leave the house to take part in an activity with other carers because of a lack of any respite options.

This inability to leave the person they are caring for impacts on dementia carers’ opportunities to maintain other relationships, including friendships. Dementia carers talk about how their world shrinks, how friends disappear and how a lack of social interaction makes them feel isolated and alone. Some carers experience being isolated within their community or extended family due to the stigma attached to dementia.

Frances Lawrence, CEO Dementia Carers Count said: “There is a clear and urgent need for a much more proactive approach to identifying people who are providing care for someone with dementia and for health and social care professionals to actively keep in touch with identified carers. A dementia diagnosis should prompt the start of care and support for those involved in the care of the person with the diagnosis, with a Carer’s Assessment connecting carers to relevant advice, information and ongoing tailored support. Sadly, there is instead all too often a total absence of any further contact or outreach either after a diagnosis or after a Carer’s Assessment. This has to change. 

“Carers are doing so much, they don’t have the time or the energy to contact others for help. However, this doesn’t mean that they should remain “invisible”.  Far from it. It should be incumbent on local authorities, working in partnership with primary care, to register and keep in touch with dementia carers on a regular basis in order to understand their changing needs and to offer appropriate support to prevent carers from reaching crisis points.”

For more information or interviews with a DCC spokesperson contact Iona-Jane Harris on 07807 231432 or email iona-jane.harris@dementiacarers.org.uk or Helen Pyper, Head of Policy and Campaigns, helen.pyper@dementiacarers.org.uk  

Notes to Editors

  1. There are just under a million families living with dementia across the UK. Dementia Carers Count (DCC) supports the emotional and practical needs of dementia carers across the UK. To find out more visit: www.dementiacarers.org.uk 
  2. DCC’s report Invisible was published on 23rd November 2023. The findings of the report and its recommendations are based on responses to a survey of 1,314 dementia carers aged over 18 from across the UK. We describe dementia carers, as anyone who offers or has offered help and support to a friend or family member to live well with dementia. The DCC survey ran from 7th June – 15th September 2023.
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