The Dementia Carer Voices project held an online survey which provided a platform for carers across the country 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 team have produced a report on these findings, and makes a series of recommendations, including:
- More information and support must be given to carers throughout their caring journey.
- Training for staff is a key priority – there is a general lack of awareness about dementia and therefore how to best care for someone with dementia. This also means that there is less awareness of how best to support people with dementia and their carers in acute settings and beyond, including in the community.
- A person centred approach is required at all times and should be the standard of care provided for all individuals.
- Carers should be recognised as equal partners by health and social care professionals, who bring an unmatchable level of expertise on what the person they care for likes and dislikes, who they are, and what is important to them.
- Carers should also be recognised as individuals by health and social care professionals, who have their own independent lives and their own needs which are of equal importance. Carers should be supported to keep well so that they may continue to care for as long as they choose to, without jeopardising their own health and wellbeing in the process.
- Carers rights must be respected at all times.
To view the whole set of recommendations which are contained in the report, please click the link at the bottom of the page.
We would like to thank all 160 of you who took the time to share your views and experiences as part of our online Carers Survey. We have presented this report to Jamie Hepburn MSP, the Minister for Sport, Health Improvement and Mental Health, and have used these findings to inform the ALLIANCE’s response to the Carers (Scotland) Bill. The views captured in the survey are also being shared by Andrew Strong, the Policy and Information Manager at the ALLIANCE, at a meeting with the Health and Sport Committee with a view to strengthening the Bill. We will continue to share your views and promote the voice and rights of carers in all we do.
The full report can be viewed here: Survey Results Report Final PDF