Healthwatch Derbyshire, the independent consumer champion for health and social care in Derbyshire, has highlighted inconsistencies in the availability and quality of care and support in the county for people living with dementia and their carers.
Healthwatch Derbyshire gathered feedback about personal experiences from more than 100 people living with dementia or their carers – usually family members – to compile the report.
A number of key issues were identified and Healthwatch Derbyshire has received commitments from providers and commissioners that these concerns have already or will be addressed.
Key findings in the report include:
- The need for more information available about all types of dementia – not just Alzheimer’s Disease – and about all the signs and symptoms rather than just focusing on memory loss
- Better information, services and support is needed for young on-set dementia (people under the age of 65)
- Members of the BME community reported that they had experienced longer waits for a formal diagnosis due to language barriers and cultural differences
- There were mixed experiences of the support available following diagnosis including many people who said they did not have a care plan in place
- Carers often felt unsupported in their role which impacted their own health and accessing respite care is often a lengthy process
- Positive responses included the quality of care in dementia specific hospital wards, Occupational Therapy services with regard to falls prevention and home adaptions, GP support, safe and well checks offered by Derbyshire Fire and Rescue Service and the development of Dementia Friendly Communities.
Among those who contributed to the project was Ms Lynne Atkin from Chesterfield whose elderly mother has advanced Alzheimer’s Disease. She and other family members care for their mother at her home with the help of paid carers who they employ.
She highlighted several issues from bureaucracy of prescribing medication to the restricted options for equipment to use at home and advocated the need for better recruitment and training for care workers in this field.
Ms Atkin said: “The level of support that mum and we as carers have received over the years has been varied and the whole system can be difficult to navigate.
“Family carers are under increasing pressure and need the same emotional and practical support to cope with the devastating and slow demise of a loved one as they would receive if they suffered from cancer for example.
“My advice to other carers is to find out what help and support you are entitled to and to look after your own needs to ensure you are able to continue to cope. I regularly do keep fit and dancing classes. I sing in a choir and am in a band. This helps me to cope with my emotions and keeps me going.”
Healthwatch Derbyshire Chief Executive Karen Ritchie said: “Our engagement team – who had specific dementia awareness training before conducting the project – spoke to a wide range of people who are either living with dementia or are caring for a family member.
“We wanted to know about their experiences and views – both positive and negative – about the services they receive and the gaps that they have identified.
“From this feedback, we have been able to build a picture of where services are doing well and where they can be improved.
“The message that is coming over loud and clear so far is that, although there are many statutory and voluntary organisations across the county that provide services and support, it appears that the quality and availability can be patchy.
“We have shared the report with those organisation that commission and provide health and social care services in the county and the responses and commitment to improve has been very positive and thorough.
“I am hopeful that, by better joining up the health and social care provision, the information, services and support in the county can be improved and made far more consistent for those living with dementia, their carers and family members.”
The full report is available at: https://healthwatchderbyshire.co.uk/2018/05/dementia-report/