We found carers had mixed experiences with the care their loved ones received and how they were acknowledged and treated. There were some examples of good practice and teams that were supportive and understanding of dementia care and needs. However, this was not widespread. Respondents felt that more support in caring for their loved one could be provided to allow them some respite. Additionally, they felt that more could be done in acknowledging them as carers and listening to their knowledge and views concerning their loved ones health and wellbeing.
Communication could be improved both with carers and between professionals. Respondents felt they often had to initiate communication with healthcare staff to find out what was happening with their loved one’s care and treatment. A number of people also felt they needed more information in terms of their loved one’s care, their rights as a carer, and signposting information for additional support.
Finally some people felt that more could be done to support their needs. Feeling that they, or a family member, had to be present all the time to provide personal care and advocate for their loved one which meant that they could not get much respite for their own health and wellbeing.
