Experiences of Dementia and Memory Support Services in North Tyneside

Healthwatch North Tyneside wanted to further understand the key issues older people experience when using services for their mental health. Between August 2019 and January 2020 they spoke to 61 people about their experiences of memory and dementia services for older people. They have also received feedback through our general engagement activity from nine people and spoke with a range of stakeholders and staff about their experiences of working within these services.

People often experienced long waits for referrals to memory clinics as GPs didn’t spot the signs of dementia. Once they had been referred, an appointment was swiftly made.  Family and carers sometimes felt that their insights were not taken on board by medical professionals.

People were very positive about their experiences at the memory clinic they attended. People found the follow up sessions provided by the Memory Clinic helpful but some commented that the time-limited nature of these wasn’t enough. Following diagnosis, the main issue that patients, carers and family told us about was the lack of information and support available and signposted to.

People found the Admiral Nursing service “invaluable”. It emerged that not everyone had access to the Admiral Nurse service or knew it existed and people were unclear why some had received and benefited from the Admiral Nurse service and others had not.

Awareness of what support was available was often low until a person joined a support group, meaning people often only heard about the support groups through word of mouth. Another key barrier to accessing support for several people was the lack of transport options to get to a support group and the financial cost of attending the groups which incurred a cost.

Although GPs are a key step in the process of accessing specialist support, once referral has taken place some people had very little contact with their GP about their continuing health and care needs.   People felt they were left to get on with it and not being clear who to go to for advice or if someone’s needs changed.

There were mixed experiences about people getting professional advice as their condition deteriorates. People said that when they were discharged from the memory clinic, they needed to go to their GP to be referred back to the memory clinic, unless they have maintained a relationship with the memory clinic.

Most people felt that they had limited interaction with statutory adult social care services. People who had had contact with a social worker said that their main activity was often just received visits to set up a care package.

A number of people discussed positive experiences of the care received by their care or nursing home. People had various experiences of using health services for non-dementia related conditions and issues. Most people felt that hospital treatment was poor due to lack of awareness and knowledge about the needs of someone with dementia.

The main issue carers and staff described was the difficulty in meeting the requirements to make a referral into the older people’s mental health team – this included a urine sample and blood sample which was often impossible to retrieve from service-users.

There were positive experiences of carers feeling like partners in care - “me and the care home are in partnership” - and poor experiences of carers’ views and experiences being ignored by professionals. This meant that sometimes the carers’ fear of making things worse acted as a barrier to advocating and navigating services. A key concern for carers was around crisis planning which was often not discussed or given information on by health and care professionals.

The report contains 19 recommendations to address the issues raised in the report.