Dementia Carer Voices – The Caring Experience Report

The Dementia Carer Voices project has released a new report entitled ‘The Caring Experience’, which shares the results of a survey that captured the views and experiences of carers throughout Scotland.

The project, managed at the ALLIANCE, created an online survey which provided a platform for carers to share their experiences of caring for a loved one with dementia. The survey had 160 participants, each of whom shared their views on a number of key areas, including:

• Experiences of accessing support and services
• Carers’ needs and the impact of caring on quality of life
• Advice for fellow carers/ health and social care professionals
• Profile of respondents/ individuals they care for
• Interventions that would make their experience as a carer more positive.

The survey saw the emergence of several key themes:

• There is still a general lack of understanding about dementia and what it means to be a carer, including self identification of carers, which often prevents people from accessing supports and services.
• Isolation and loss of identity remain an issue for many carers, with respite and peer support groups being cited by many as a vital support to keep carers well.
• Information about dementia and caring needs to be more readily available.
• The most common piece of advice for carers was to take the time to look after themselves.
• The most common piece of advice for health and social care professionals was to listen to carers and use their knowledge to ensure the best care for the person they look after.

The full report, which contains a set of 8 recommendations, can be downloaded here: Dementia Carer Voices: The Caring Experience