The research highlights challenges facing dementia carers and what support they need.

Today, on Carers Rights Day, Dementia Carers Count have published their report, Invisible, which shares findings from their 2023 survey of dementia carers.

The research of over 1300 dementia carers 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.

Dementia Carers Count state that 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 said 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.

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”. The report outlines a number of recommendations Dementia Carers Count believe should be taken on as a matter of urgency to ensure dementia carers are receive the support they so desperately need, including:

  • Prioritising investment in social care services and the workforce.
  • Collaborative working to ensure early identification of carers.
  • Personalised support that addresses practical, emotional and financial needs.
  • A better informed and supportive public, through awareness campaigns.

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