Summary of report content
Healthwatch Wakefield conducted an investigation into how prepared family members or carers feel when their loved one begins to exhibit behavioural challenges and identified gaps/good practice for dementia support. Informal semi-structured interviews were used alongside one focus-group session. 19 carers were spoken to and health professionals working with carers and people living with dementia were also spoken to.
The report found that people waited a long time for a dementia diagnosis. Information, support and diagnosis provided by specialists were valued the most. It was felt that some professionals view dementia as less important than other terminal diseases. Variable information about dementia and support was reported by carers. It was found that respite care does not always meet people's varying needs. Carers are negatively impacted by the cost of caring, which impacts their health and wellbeing, in turn. Support groups are available but carers find them difficult to access to to varying responsibilities. Compassionate and supportive health professionals were valued, but not all experienced it. People do not know how social care works for those with dementia, nor is it felt that the social services understand dementia. It is confusing when care givers are not the same, leading to different information being passed on and negative behaviours. Admiral Nurses are valued and people would like to see more of them. There are mixed opinions on advanced care planning (ACP) by both carers and healthcare professionals.
A range of recommendations were made including GP should not charge for the production of medical reports; services need to review some of the terminology used and services on offer for people living with early onset dementia; help carers with their financial burden, such as a passport scheme; and to promote health and wellbeing.