Dementia Carers: support for carers of those living with dementia

Healthwatch Norfolk was commissioned by Norfolk Community Health and Care NHS Trust (NCH&C) to find out what they can do to further support the needs of carers of those living with dementia when they are an inpatient in hospital.  They gathered feedback through various methods, including focus groups, interviews, a survey and through conversations with carers attending dementia cafes.  They spoke to 90 people.

Carers had mixed experiences with the care their loved ones received. Carers also had mixed experiences being acknowledged and treated as carers. 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. Discussing with carers about how and when to best give them updates on their loved one’s condition could help alleviate stress at an already stressful time. Carers also felt that they were having to retell their stories again and again when new professionals became involved in their loved one’s care. Ensuring that all staff have access to up-to-date information would help this.

More information is needed in terms of their loved one’s care, their rights as a carer, and signposting information for additional support. Carers found that there was not enough of this and felt that having an information pack, or similar, would be helpful. Additionally, this could help in answering some questions carers may have and reduce staff workload. Finally carers 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. Having a point of contact/dementia ‘expert’ available for them to liaise with would help ease some of the pressure and reassure them that their loved one is being cared for when they need to leave. A concern that carers had was about what support there is should they themselves become ill and have to go into hospital. Looking into, and consulting with carers, what support can be provided to those living with dementia at times such as these would go a long way to help reassure carers that their loved one will be looked after.

The report contains seven recommendations about staff training, information, involving carers, communication and support.